Journal History
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Monday, December 31, 2007 10:34 AM CST
and ^^Angel^^ 
Saturday, December 22, 2007 9:09 PM CST
I added some new pictures so please check them out!
It is with great sadness that I tell you that John’s cousin Ellen passed away on Wednesday. Ellen did so much to help us when we were fighting Kaiser for Tommy’s transplant. She is the person who contacted all of the media for us and helped with fundraisers. We will miss Ellen very much! Here is her obituary from our local newspaper:
As far as Christmas goes, I have decided not to update our Holiday Wish List which is down at the bottom of this page. Ciara and Hunter really don’t play with any toys so for those of you who are interested, here is a couple of ideas for them:
and ^^Angel^^
Thursday, December 6, 2007 3:16 AM CST
WEDNESDAY 7:00 AM UPDATE:
I am so sorry I haven't been around here much lately but the normal craziness has gotten even worse around here. I will start off by saying that this week for the fire dept we are doing our annual Santa Patrol. We decorate the fire truck with Christmas lights and garland and Santa rides on top while we walk up and down every street in town handing out candy canes to every house. It is a lot of fun but we are only half way thru town and my feet are killing me! It is way too cold to bring Ciara and Hunter out so John has stayed home with them while I went out on the patrol. Ciara and Hunter are both slowly getting better and so far, Ciara hasn't caught Hunter's bug so that is good news. Now for the bad news. My mom and my sister were in their car in the driveway and they were getting out of the car. Apparently my sister didn't have the car in park and as my mom was getting out of the car, it started rolling back down the driveway. She was holding onto the car door and as it started rolling, the door swung open and pulled her out and under the wheels of the car and drug her out into the street and the car stopped on top of her. She went by ambulance to our local hospital but they couldn't help her so they transfered her to Sacramento. She has 2 broken ankles, broken leg and crushed knee. Yesterday they decided not to do any surgery but she will be in the hospital for a few days and then transfered to a rehab center for several weeks. I feel so bad that she is over an hour drive away and I can't go visit her every day because she is in the Trauma Neuro ICU and I can't bring the kids in there. So say a prayer that she heels fast and will be able to walk again, although I don't think she will, at least not very well.
As far as Christmas goes, I have decided not to update our Holiday Wish List which is down at the bottom of this page. Ciara and Hunter really don’t play with any toys so for those of you who are interested, here is a couple of ideas for them (our mailing address is at the bottom of our website):
and ^^Angel^^
Sunday, November 25, 2007 1:02 AM CST
and ^^Angel^^ 
Friday, November 16, 2007 5:52 PM CST
and ^^Angel^^
Thursday, November 1, 2007 12:07 AM CDT
Not much to report this week. Ciara is still doing wonderful and continuing to laugh and make us laugh. Hunter is also doing well but he was very grumpy yesterday. I took Ciara to school yesterday and brought some cupcakes for the Halloween party. Just as we got there the class was going to music time so Ciara really liked that. Around 5:00 we went to the haunted house, John was working there on the fire engine until 9:00, so we just hung out there for a few hours. Then Debbie and I took the kids trick or treating and it was so cute. Little Kenny pushed Ciara up to every door and made sure that the kids got candy in their bag too. We finally got home around 9:00 and as soon as I put Hunter on the couch, he rolled over and was asleep, so I just left him there and he slept all night. Tomorrow night (Friday) there is a BBQ fundraiser for the Ione Fire Dept so if anybody is interested just call or email me for the info. 
I added some Halloween pictures so check them out!
and ^^Angel^^
Thursday, November 1, 2007 12:07 AM CDT
Not much to report this week. Ciara is still doing wonderful and continuing to laugh and make us laugh. Hunter is also doing well but he was very grumpy yesterday. I took Ciara to school yesterday and brought some cupcakes for the Halloween party. Just as we got there the class was going to music time so Ciara really liked that. Around 5:00 we went to the haunted house, John was working there on the fire engine until 9:00, so we just hung out there for a few hours. Then Debbie and I took the kids trick or treating and it was so cute. Little Kenny pushed Ciara up to every door and made sure that the kids got candy in their bag too. We finally got home around 9:00 and as soon as I put Hunter on the couch, he rolled over and was asleep, so I just left him there and he slept all night. Tomorrow night (Friday) there is a BBQ fundraiser for the Ione Fire Dept so if anybody is interested just call or email me for the info. 
I added some Halloween pictures from so check them out!
and ^^Angel^^ Thursday, October 25, 2007 8:30 PM CDT
The past week was a very busy week, that’s for sure! Thursday morning I packed up the car, loaded the kids in and we were off to Los Angeles! John was working so I drove down to Bakersfield to pick him up and then we went to LA to meet up with our friends. By the time we got to the hotel, the kids were very tired and John had his homework that was due that evening so they stayed at the hotel and I went out to dinner with our friends, it was very nice. I brought John and Hunter some dinner so they were happy and everybody went to bed early. Friday morning we were up and on our way to Disneyland. When we got there our friends were having breakfast in the park so we met up with them and immediately went to Pirates Of The Caribbean, of course! Hunter was a little fussy at first, but as soon as we went down the first drop, he was quiet and enjoyed the rest of the ride and Ciara loved looking at all of the lights and things. Next we went on the Haunted Mansion, John had Ciara and I had Hunter. When it came time to get into the little “car” thing, I put Hunter in with me and we finished the ride. But, like an idiot, when everybody else was getting off, I grabbed Hunter and got off too, totally forgetting that his wheelchair wasn’t there. I had to carry him off the ride and wait for John and Ciara who didn’t get off. Our friends went to find John and bring Hunter’s wheelchair back for me, too funny. After that we rode more rides and then everybody wanted to go over to California Adventure, but I had a huge headache and was hungry so since they were going over there to ride the wet rides, John and I took the kids to get something to eat and then met up with them at the High School Musical Parade. After that we went on some roller coasters and then it was time for the Ferris Wheel. I know, sounds tame right, NOT! Have you seen the one they have there? It has the seats like a regular Ferris Wheel, but then there are seats that are on tracks and as the wheel turns, they zip around the little oval track, I thought we were all going to throw up! LOL Hunter loved the Jumping Jellyfish ride which was always Ciara’s favorite ride, but she was off with John and the guys somewhere in the park so I rode it with Hunter, Ryan and Dylan. By now it was dinner time and then after we ate, we headed back over to Disneyland to ride a few more rides and watch the fireworks. By the time the fireworks were over it was about 10:00 and Ciara was not happy anymore, she had been sitting for 12 hours so we headed back to the hotel. Saturday we had to get up early and go to the MPS Run in LaVerne, I was so excited! We look forward every year to coming to this run and seeing all of our friends again. We had a lot of fun and after the run was over, it was time for the MPS Family Picnic. As usually there was a lot of food and it was fantastic! Our friends from the fire dept that went to Disneyland with us also came to the run and stayed for the picnic so it was a great time. After lunch we did a balloon release for all of the MPS angels so of course I wrote a message on my balloon for Tommy and Hunter sent it off to him. Around noon we headed back to the hotel and the kids took a nap. I couldn’t sleep so I watched some TV until little Allie knocked on my door, she was bored too! LOL Allie has MPS-1 and is just as cute as a button. So I took Hunter outside with me and we sat with Allie and her mom and chatted for a while. Then John and Ciara came out and a few more MPS people sister showed up and we decided it was time for dinner. We went to the Red Robin and had a very good time. When we got back to the hotel, everybody fell asleep early. I woke up around 5:00 and I was watching the news when they reported on the 3 fires that had just broken out. Of course one of then was on our way home, where John usually works, so we packed up and got out of there as soon as we could so we wouldn’t get stuck there if they closed the road. That was the Castaic Fire that we had to drive thru, but we made it. I dropped John off in Bakersfield again and the kids and I continued on the 4 hour drive home. On the way we stopped in Modesto to visit with Kim and Scotty since they didn’t make it to the run. We dropped of their Tshirt and Scotty’s MPS Medal. After Ciara and Hunter relaxed on the couch for a while, it was time to head back home but of course as I was headed into town, John called and said that the fire dept was looking for people to send back down to those fires so I stopped by the station for a little bit, then took the kids home, John wouldn’t be home until the next day. Well, I guess that is it for now, but we had a great time! I added some pictures from our trip so check them out! I also just uploaded all of my pictures from the MPS Run so you can see all of them by clicking here: MPS RUN 2007 PICTURES
and ^^Angel^^
Tuesday, October 16, 2007 5:16 PM CDT
There isn’t too much to report which I guess is a good thing! Hunter has been doing very well and he has been going to school. He really is much happier in his new wheelchair so that has been very nice. I didn’t want to post this earlier and jinx things but I guess I will and see what happens. Ciara has been doing very well this past week and has been off of oxygen almost all day, but I do put it back on her when she goes to sleep, just for my peace of mind so I can get some sleep. She just refuses to leave the nasal canula on and is constantly taking it off so I put the pulse ox on her and her SATs were OK so she is doing better. I am not sure if it was the dose of antibiotics she finished or if it’s is because I have decreased her clonopin which causes the throat congestion and secretions or maybe it was both. So when Ciara got so sick and ended up in the hospital in May she had just started the Clonopin and was on 1mg three times a day. Now I have her down to .5mg once a day so we will see what happens. She did wake me up in the middle of the night with a seizure but it was a small one and it didn’t seem to affect her so that was good. We are leaving at the end of the week for Los Angeles and we can’t wait. We are going to the MPS Run and if you would like more info you can visit their website at www.mpsrun.com. Well, I guess that is it for now, thank you all for continuing to check in on us!
Please say a prayer for a couple MPS families who lost their little ones in the past 24 hours. Sara was 13 and had Sanfilippo and became an angel yesterday, it was fast and unexpected. Mason had Hurlers and was transplanted at Duke after Tommy was and he passed away today from transplant related issues. I don’t believe that Sara has a website but you can visit Mason’s by clicking here www.meetmason.com
We have a donation page set up, just click here to check it out: Donation Page
and ^^Angel^^ Tuesday, October 16, 2007 5:16 PM CDT
There isn’t too much to report which I guess is a good thing! Hunter has been doing very well and he has been going to school. He really is much happier in his new wheelchair so that has been very nice. I didn’t want to post this earlier and jinx things but I guess I will and see what happens. Ciara has been doing very well this past week and has been off of oxygen almost all day, but I do put it back on her when she goes to sleep, just for my peace of mind so I can get some sleep. She just refuses to leave the nasal canula on and is constantly taking it off so I put the pulse ox on her and her SATs were OK so she is doing better. I am not sure if it was the dose of antibiotics she finished or if it’s is because I have decreased her clonopin which causes the throat congestion and secretions or maybe it was both. So when Ciara got so sick and ended up in the hospital in May she had just started the Clonopin and was on 1mg three times a day. Now I have her down to .5mg once a day so we will see what happens. She did wake me up in the middle of the night with a seizure but it was a small one and it didn’t seem to affect her so that was good. We are leaving at the end of the week for Los Angeles and we can’t wait. We are going to the MPS Run and if you would like more info you can visit their website at www.mpsrun.com. Well, I guess that is it for now, thank you all for continuing to check in on us! Please say a prayer for a couple MPS families who lost their little ones in the past 24 hours. Sara was 13 and had Sanfilippo and became an angel yesterday, it was fast and unexpected. Mason had Hurlers and was transplanted at Duke after Tommy was and he passed away today from transplant related issues. I don’t believe that Sara has a website but you can visit Mason’s by clicking here www.meetmason.com
We have a donation page set up, just click here to check it out: Donation Page
and ^^Angel^^ Sunday, September 30, 2007 10:54 PM CDT
THURSDAY 12:30 PM UPDATE: Ciara and Hunter got their new wheelchairs yesterday and I am so happy. Hunter's chair is great, they messed up a few things on Ciara's chair and I have to call them because I want other things changed to they way Hunter's chair is but I really do like the chairs. I added some pictures of their chairs so go check them out. The kids were supposed to get their splints today but the doctor's office made somebody else's splints instead of Hunter's, the other little boy was Bennett also, so we will have to go back in two weeks to get the right splints, bummer! Ciara is still coughing up gunk but not as bad as 3 days ago but it is still more then normal so things are still busy around here but not as crazy as earlier in the week.
MONDAY 7:00 PM UPDATE: I talked to Ciara's doctor today and she called in an antibiotic for Ciara to take. She also wants me to increase Ciara's Qvar and breathing treatments so we will see how she does. So far today she hasn't had a fever so that is good, but she is still coughing up a lot of gunk.
First off I would like to thank you all for the wonderful birthday wishes and memories of Tommy. On his birthday some friends took me out to lunch which was fun and then I went out to the cemetery and brought him some roses and a balloon. In the evening some of Tommy’s friends came by and they wrote birthday messages on some balloons and we sent them up to Tommy. But Ryan, who is 5, was very concerned that Tommy can’t read and wanted to know who was going to read his balloon to Tommy, it was so cute.
I haven’t weighed Hunter lately but he feels a little heavier to me so that is good, but he still needs to put on more weight. I took the kids last week to get measures for their splints, Ciara is getting splints for her hands and Hunter is getting them for his feet. For Hunter they had to put casts on his legs and it was so pitiful, even with casts on, his little legs looked like sticks. The splints will be in this week so that will be nice. We are also getting their new wheelchairs on Wednesday and I can’t wait. Of course they don’t fold so I have no idea how I am going to get them home or in the house since we don’t have a ramp and there are a couple steps going into the front door so that will be interesting.
This past week Ciara has been having trouble with her airway. It started out with junk in her throat but she was able to cough it up and clear her throat. After a couple of days I noticed that when she coughed, stuff came out of her nose too but my nose was stuffy so I was assuming it was some sort of allergy. She gets her Claratin every morning but I gave her a dose of Benedryl and it seemed to help a little. Over the past week she has been getting a little worse, more gurgly and congested. This morning she was really bad and I wasn’t sure if I should take her to the hospital or not, I don’t know what they would be able to do, but with a stuffy nose, I am not sure how much oxygen she is getting thru the nasal canula. John was gone today so I decided to keep her home and see how she did. I gave her a breathing treatment and some Benedryl but after the treatment she was very shakey so I wasn’t sure if it was from the treatment or if a seizure was in her near future. After about an hour she was sounding a little better and she fell asleep. John’s cousin asked us out to dinner so when we got to the restaurant I noticed that Ciara wasn’t looking right and still a little shakey so I told John that she was going to have a seizure soon. After dinner I ran to the store while John stayed with the kids and when I got home, around 10:00 Ciara was in her recliner and around 10:30 I was sitting next to her and heard her making noises and noticed that she was having a seizure. But this time I was looking in her eyes and she was totally alert and “with it” and was “talking” during the seizure which she has never done before. It only lasted about 20 seconds and as soon as it was over she looked like nothing had happened and was looking around, and wide awake, it was really weird. John listened to her lungs and said that they sound clear so that is a good thing. Please pray that Ciara gets over this fast, whatever it is, and I will update you all again soon.
and ^^Angel^^
Tuesday, September 18, 2007 3:40 AM CDT
Please sign our guestbook and leave a little message about what you remember most about Tommy and if possible, please release a balloon for him today!
and ^^Angel^^
Monday, September 10, 2007 3:59 PM CDT
We have a donation page set up, just click here to check it out: www.active.com/donate/bennettkids
and ^^Angel^^ 
Monday, September 10, 2007 3:59 PM CDT
We have a donation page set up, just click here to check it out: www.active.com/donate/bennettkids
and ^^Angel^^ 
Monday, September 10, 2007 3:59 PM CDT
We have a donation page set up, just click here to check it out: www.active.com/donate/bennettkids
and ^^Angel^^ Tuesday, September 4, 2007 2:33 PM CDT
We have a donation page set up, just click here to check it out: www.active.com/donate/bennettkids and ^^Angel^^
Wednesday, August 29, 2007 12:59 AM CDT
FRIDAY 5:00 PM UPDATE: This morning started off with a giant rainbow when I walked outside which I took to be a good sign. Apparently it was a sign of DOOM! On Tuesday Hunter had 3 prescriptions for his tummy but I didn't notice until today that one of the prescriptions, which was a capsule, was empty. Yep, every capsule in the bottle was empty, nothing but air. Needless to say, I was pissed off. Ciara and Hunter had physical therapy appointments in Sacramento so I put them in the car and we headed to Kaiser which was an hour drive. When we got there I realized that I forgot to put Hunter's wheelchair in the car. So, after I calmed down from that, I put Ciara in her wheelchair, grabbed her oxygen tank and then slung Hunter over my shoulder and slowly made my way thru the parking lot and into Kaiser, Hunter fussing and whining the whole way of course. We were early for our appointment so I walked down to the pharmacy to have them fix the prescription problem but of course they wouldn't. Since I had it filled at a different Kaiser, they told me that I had to take it back there and they would have to replace the capsules since they had already signed out the drugs when they "didn't" fill them the first time. Now you can imagine by this time I was livid! I explained to the girl that it was not MY fault and I wasn't going to push a wheelchair, drag an oxygen tank and carry a 9 year old boy back out to the car, drive to the other Kaiser, and then drag them all back into that pharmacy, but apparently nobody cared there and wouldn't fill it for me. So I picked up Hunter, put him over my shoulder and we walked to the physical therapy office. We did get some good news there, both of their wheelchairs have been ordered and are on a truck on their way to the wheelchair company to be put together so hopefully we will have them in a couple of weeks or so. The therapist helped me out to the car with the kids, thanks Kathleen! But then I was off to the other Kaiser which I was dreading and Hunter wasn't happy either. He was hungry but I didn't want to get him anything until after we went to Kaiser because I didn't want him eating and smearing food all over my shoulder. So, again I put Ciara in her wheelchair, got the oxygen tank out, hooked her up, slung Hunter over my shoulder and trudged thru the parking lot and into the pharmacy which was packed with people and not one empty seat for Hunter. By this time my arm was shaking from carrying him so I sat him on the floor and got in line. A couple of minutes later he toppled backward and hit his head on the shelf so I picked him up and held him in line with me. But a very nice lady made room for him and sat next to him, holding him and talking to him, even wiping his drool. I can't tell you or her how much that meant to me, she was a life saver! The pharmacist quickly fixed the prescription and we were off to find Hunter something to eat and then back home. Of course it was already over 100 degrees and we were all miserable. I stopped by our house, gave Ciara a quick tube feeding in the car, changed her oxygen tank and then we were off to run errands and do a little grocery shopping and we finally got home around 4:30. Now, this is where the KAISER IS STUPID section starts. I got a message from Apria stating that Kaiser ordered 24 b size oxygen tanks to be delivered, but the b size tanks only last one hour where the tanks we have now last 3-5 hours. He said that we were supposed to use them when we were traveling which doesn't make sense to me and I refused them and made them take them back, that is NOT what I want. I want a portable oxygen concentrator, not more bottles to drag around and not only will I have to drag them around too, but I will have to drag 5 times as many around to get the amount of oxygen as the larger ones we already have, DUH! I called Kaiser and left a message but of course it is 5:00 on Friday on a holiday weekend which is ALWAYS when Kaiser pulls this crap and pisses me off even more! So, stay tuned for the next chapter of this story!
(I do want to say that we love our Kaiser doctors and they are wonderful with Ciara and Hunter, but it is the idiots that run Kaiser that need to spend a day in my life!)
and ^^Angel^^
Wednesday, August 29, 2007 12:59 AM CDT
Well, several things have been going on around here this past week. John started back to school this week but thankfully he is taking some on-line classes so he only has to go to school one night a week. Yesterday we helped Alyssa put her things into storage and this morning at 7:00 she headed off to North Carolina. I can’t believe she is gone, she is my best friend and my helper with the kids and I don’t know what we are going to do without her here. If all goes well, she will be back in July to start her school and I just pray that the kids stay healthy while she is gone, I know that is what she is worried about the most. Hunter has been doing well but I think he has lost some weight so I started giving him some tube feeds to help him plump up faster. Of course because he got his feeding tube he wasn’t able to eat or drink without choking but since the feeding tube he has been eating like normal. We have been giving him Boost to drink but I think a tube feeding a day should help him. Yesterday he had an appointment with his GI doctor, we haven’t seen him since Hunter’s surgery. Hunter had a little granulation around his tube so the doctor cauterized it, which or course made Hunter mad. He also said that Hunter had a “bug” growing in his belly so he gave me three prescriptions for antibiotics and then sent us to the lab. We have to come back in November for another blood check to see if the bug went away. Other then that, Hunter has been doing very well. Ciara was off oxygen for several days but then she started to get congested and gurgly again so she has been back on the oxygen continuously. I have been trying to get her a portable oxygen concentrator but haven’t had much luck. This is what I am talking about PORTABLE O2 CONCENTRATOR. Right now we have a big concentrator in the house but when we go out I have to load several oxygen tanks in the car and then drag behind her wheelchair like this O2 TANK. Having to push two wheelchairs and deal with the oxygen tank is not easy and I am usually out shopping by myself with the kids. So this summer we haven’t really been able to go out, other then to the pool every now and then but that is because the fire dept helps me with the kids when we get there. Over the summer we always go camping but we have to miss the camping trips we had planned because there was no way we could go, we didn’t have room for 25 oxygen tanks in the car. We haven’t been able to go to Monterey to see my dad and other Sanfilippo friends because again, where an I going to put the tanks? We were going to go to San Francisco with some friends but they were going to take the BART and I had to stay home because there was no way to haul tanks around all over San Francisco. So, you can imagine how boring, and depressing it has been around here, not only for me, but the Ciara and Hunter too. Since the kids were 2 days old I have had them out and going places constantly so having to be stuck in the house for months hasn’t been easy on them. They need to be up and moving, not only for their mental health, but for their physical health as well. Several times we were so desperate to get out of the house that I just put the kids in the car and drove around town for an hour, and if you know how small Ione is, you know that there are only several streets to drive around. On several of our driving trips the cops followed me because I was driving in circles for an hour and apparently looked suspicious. We are talking about Ciara’s quality of life and we all know that she will not be with us for a long time, we almost lost her 2 months ago, and I am prepared to fight Kaiser with everything that I have to make sure that Ciara gets this portable oxygen concentrator so that she can go to school and travel.
(I do want to say that we love our Kaiser doctors and they are wonderful with Ciara and Hunter, but it is the idiots that run Kaiser that need to spend a day in my life!) and ^^Angel^^ Monday, August 20, 2007 1:06 AM CDT
This post is not for me but for Alyssa. She desperately needs a job and a place to live by the end of this month or she has to go back to North Carolina. She had other living arrangements but they fell thru after she gave up her apartment. She is looking for anything that pays $15-$20 per hour and it can be anywhere in California. If you know of any job or place for her to rent that isn't too expensive, please let me know. She is family and my best friend and I don't know what I will do if she isn't here close to help me with the kids!
Hello everybody! Not too much to report here. School started this past week so Hunter has been going but we haven’t decided if we will send Ciara back to school. They haven’t hired a teacher for the class yet so I just don’t know what to think or what to do. Depending on who they hire and what I see, we may keep Hunter out of school too, but for now he has been going which is great because at least now Ciara and I can get out and go to the store. There is some good news, Ciara has been off of oxygen completely, yippee!!! It is so wonderful to see her beautiful little face again without tubes everywhere! We are still dealing with our housing situation and we don’t know what to do. Our landlord is selling the house we are in and the houses around here are too expensive to buy and the ones for rent are ridiculous also, way more then we can afford so I have no idea where we are going to live and I have been freaking out a little. So much stuff has happened in the past month or so that I have finally had to get on Zanex which seems to be helping a little, thank God! I just pray that everything starts to work out, but at least the kids are doing well (knock on wood).
and ^^Angel^^
Friday, August 3, 2007 9:54 AM CDT
Hello Everybody!
Things have been going fairly well here since my last update. Of course now that Hunter has the feeding tube he is eating and drinking like normal again so I haven't had to use the tube for a couple of weeks so that is good news. Ciara is still getting over her double pneumonia. She has been coughing up guck the past couple of days so and sleeping more so not sure what is going on, I am going to have John listen to her when he gets up this morning. Yesterday was John's last day of school so now he has a few weeks off so maybe we can get out and do something fun, the kids and I are tired of being in this house all day. If we have enough money, we are planning on taking the kids to Monterey in a couple of weeks with some friends so that will be a lot of fun. Plus, my dad lives there and another Sanfilippo family so I can't wait to get there!
Hugs To All, and ^^Angel^^
Saturday, July 21, 2007 4:14 PM CDT
TUESDAY 12:30 PM UPDATE: I took Ciara to Kaiser yesterday so that they could see her and give her some antibiotics. Since we already have oxygen at home the doctor gave us some antibiotics and steroids for her and let us go home, but if we didn't have the oxygen, she would have been admitted. He said that if she wasn't getting better by Wednesday to call him and most likely they would admit her. We are assuming it is an aspirational pneumonia and not the pseudomonas pneumonia like last time so if she isn't getting better by tomorrow, then it is most likely the pseudomonas and they will have to admit her to treat her for that. I had John listen to her and he said that her lungs sound better and she has been coughing up guck so that is good too. I will keep you posted on how she is doing so keep checking!
MONDAY 11:00 AM UPDATE: Well Ciara has pneumonia in both her lungs so they gave her a shot of Rocephin and talked about transfering her to Kaiser. I told them that she was SATing better and with the shot of antibiotic I thought it would be OK for me to take her home and then take her to Kaiser later on so that is what we did. She has a 3:00 appointment at Kaiser so pray that they don't keep her and I will update later when I can.
MONDAY 1:00 AM UPDATE: I noticed that Ciara was sounding gurgly again so I had John listen to her lungs and he said that her left lung sounds junky. I gave her a breathing treatment and it didn't help so I am going to watch her for a few minutes but I just can't get her pulse ox to go above 83 so I am sure I will be taking her to the ER soon. Please pray that she pulls thru this and we don't have to go thru what we did last time!
Sorry I haven’t updated sooner but we have been busy around here. There is not much to report, Ciara has been happy and doing very well. Since his surgery Hunter has also been doing well. He had a couple of days after the surgery when he didn’t drink anything but now he is drinking and eating like a pig so I have only been giving him water once a day thru his tube, just to make sure he is hydrated. We haven’t gone swimming this past week because it was cool here but I am taking the kids tonight so we will have some fun. I guess that is it for now, not much, but that is a good thing!
and ^^Angel^^
Tuesday, July 10, 2007 3:31 AM CDT
WEDNESDAY 8:00 AM UPDATE: Well, Hunter's surgery was delayed a couple of hours yesterday but they finally took him into surgery around 9:30 and it lasted not quite an hour and a half. The doctor came out and let me go back to sit with him and John stayed in the waiting room with Ciara who was sleeping her little head off. The Anesthesiologist came to talk to me and told me that he had a very hard time intubating him and from now on if he has surgery again, I need to tell them that he can't be intubated and they need to use the fiberoptics. So I sat by Hunter and the recovery nurse told me not to talk to him or touch him, just to let him wake up on his own. So as I sat there, I watched the other patients coming out of surgery and they were all talking and answering questions and an hour later, Hunter was still sleeping. We tried to wake him up but we just couldn't, the nurse said that she had never seen a child like that before so a little piece of me started to worry. We kept trying and finally we got him to open his eyes and slowly he started coming around. Now, as far as his room assignment, I started with the admitting dept as soon as we got to the hospital and I bugged every nurse, doctor and anybody else that I talked to that day about getting a room so that I had a place for Ciara to be comfortable as well and I was still told that I couldn't get one and Ciara could not be hooked up to their oxygen because it was a liability. Well, when Hunter and I were in recovery and the nurse told me she had his room ready, I asked her if it was a private room and she didn't know. She called the Peds floor and the charge nurse told her that she was tired of getting phone calls about this for the past two days and no, it was not a private room. So I sent John and Ciara over to the Peds floor while we waited for a transporter to bring Hunter down there. When we got to his room guess what, it was a private room. John said that the charge nurse had come in before I got there and she didn't seem happy but oh well, Ciara was very comfy in her recliner and didn't fuss or make a peep all day and all night. Hunter on the other hand was angry, in pain and thrashing about the bed screaming. We gave him some pain meds and they didn't work. We gave him some Ativan and it didn't work. When John came back from school around 9:30 they had just given Hunter some Tylenol with Codeine and at 10:00 he was due for another dose of Ativan. Since I didn't get any sleep the night before, I took Ciara home and John stayed the night with Hunter. When I got home John said that the meds weren't working and he was still screaming and thrashing around so he asked for something else. I just talked to him this morning and they gave Hunter some Morphine and he slept all night long and he and John are still sleeping so that made me happy. Poor little guy must be exhausted! I am not taking him home until they have given him a feed thru the new tube so they better get on the ball because we are coming home this morning or afternoon, trust me! We don't need to be there, I can do this all at home. I will update again later today, once we are home and settled. Thank you all for the prayers!
and ^^Angel^^
Wednesday, July 4, 2007 4:31 PM CDT
) I had bought a small oxygen tank on Ebay that has a carry case so I brought that and hung it on the back of the wheelchair for the first two appointments which were with physical therapy. The wheelchair company met us there and helped us order the right wheelchairs for Ciara and Hunter. We were there for about an hour and a half and then I had to go to the pharmacy to get Ciara’s Robinul which I had given her the last dose that morning. While we were waiting Hunter was screaming and Ciara’s pulse ox machine kept beeping because I had her oxygen turned down so that it would last until we got back to the car. I didn’t plan on being in the pharmacy for 50 minutes and I was not happy. I kept telling them that she was almost out of oxygen and I needed to go, what was taking so long. They didn’t know what the problem was, of course. Finally they said that her prescriptions were ready but they couldn’t give them to me because the Medi-Cal computer was down. I told them I don’t care, give me them, I have to go, her oxygen is now out! She talked to her boss and came back and gave me the meds but they didn’t have the Robinul which was the one I needed, of course. The Robinul helps with her secretions so that she doesn’t have much to aspirate so we REALLY need that med. We grabbed a bite to eat from the drive thru and headed to our next appointment at a different Kaiser. Now this time I had to use the big oxygen tank that I have on wheels so I tried and tried and I finally rigged it to the wheelchair so that I could push both chairs and not have to drag the thing behind me so I was very happy. We stopped at the pharmacy first and they also didn’t have the Robinul in stock and said that it would take a week to get, I was livid! We went up to Hunter’s appointment with anesthesiology and of course the doctor hasn’t heard of MPS since med school so I have a crash course and also handed her the MPS Anesthesiology booklet and the Sanfilippo booklet from the MPS Society and she was very happy that I brought those. After the appointment I had to get home because we were almost out of oxygen again but man, what a long long day it was! Saturday a friend put on a car wash to raise money for the kids so I got there around 10:00 with Ciara and Hunter and then people started coming. Ciara was having a very hard time keeping her SATs up, they are in the upper 70’s to low 80’s on 6 liters so when John came, I told him to take my car and not come back until he found her med somewhere in Sacramento. So he left and about 45 minutes later, when Ciara’s pulse ox was beeping, I realized that I didn’t take the extra oxygen tanks out of my car before John left. OK, can you say PANIC!!! We called the fire chief in Ione and he brought down a couple bottles of oxygen for Ciara, but it is a 15 minute drive from the station to the car wash so we were all a little scared, especially the kids that were there, they were so concerned for Ciara, it was cute. After we got the oxygen for her John called and said that he got her prescription, yippee!!! So all totaled, she missed 4 doses and she was having a very hard time so once she had a couple doses in her, she was doing much better. Well, that was our week, nice, but a little crazy! Hunter has his surgery on Tuesday so please pray that everything goes well!
We have a donation page set up, just click here to check it out: Bennett Kids Page
and ^^Angel^^ 
Wednesday, June 20, 2007 1:18 AM CDT
TUESDAY 4:00 PM UPDATE: As most of you know, there is a huge fire in Lake Tahoe right now. John and 3 other firefighters from our Ione Fire Dept are up there helping fight that fire. Of course I have been having anxiety attacks since he left, but I am trying to stay calm but we'll see how well I do. John called a little while ago and told me what was going on, but I don't think I can post any info here so I won't, but our group is OK. As I was talking to him the evacuation siren went off and he said that he had to get out of there so hopefully I will hear from him soon. His group was doing structure protection near the high school but the fire jumped the line and the winds are crazy. He said that KRON from San Francisco was there this morning taking video so he said to watch and see if they showed our group. John is a captain so he wears a red helmet, here is the link to watch: KRON News.
MONDAY 9:00 AM UPDATE: Ciara has had a rough couple of days. I just can't seem to get her SATs to stay above 90, even on the full amount of oxygen I can give her. Night before last I was up until 5:30 am with her and then last night I finally got her SATs to 92 so I went to sleep. I woke up at 5:30 and her pulse ox machine was turned off, the probe was off of her foot and the oxygen was off of her face. I panicked and put the oxygen back on and then got the pulse ox working again so after a couple of minutes her SATs were 84 so I have no idea how low she was before I put the O2 back on her. Right now she is sleeping and SATing better so that is good news. Hunter just woke up and is fussing so I better so get him some juice. Don't forget about the car wash this Saturday!
We have a donation page set up, just click here to check it out: Bennett Kids Page
and ^^Angel^^
Saturday, June 16, 2007 5:22 PM CDT
We have a donation page set up, just click here to check it out: Bennett Kids Page
and ^^Angel^^
Saturday, June 16, 2007 5:22 PM CDT
We have a donation page set up, just click here to check it out: Bennett Kids Page
and ^^Angel^^ Saturday, June 9, 2007 4:29 AM CDT
Ciara woke me up this morning just gabbing away, it was so cute! I haven't heard her "talk" for a while so that was a wonderful way to wake up, and she kept gabbing all day long. She is still on oxygen and does have her moments during the day, usually in the evening, that she gets worse, but all in all she is hanging in there. Hunter is still having trouble but it isn't really a breathing issue, I think it is a swollowing issue. Everytime he take a bite or a sip, he chokes and gags because it goes into his lungs. He really needs a feeding tube ASAP and we had an appointment for the 20th but I called the office today to try and get an earlier appointment but the doctor is out of town next week. I did make an appoinment to see Margie in his office on Tuesday so hopefully she will be able to start the ball rolling because I don't know how I am going to keep Hunter hydrated and fed so please pray that something happens quickly for Hunter's feeding tube. On Wednedsay he scared me, and it takes a lot to scare me, but he was choking on just saliva and he couldn't take a breath, he was flopping around like a fish out of water and he looked so scared. I tried to suction him but couldn't get anything. I called John who was at his CPR class and he can right home and he was concerned too. Of course when I called him he just ran out of the class and a minute later we had the fire dept running out after him and they brought the Rescue unit to our house because they didn't know what was going on. It is so nice to live in this little town where everybody knows everybody and cares about everybody!
We have a donation page set up, just click here to check it out: Bennett Kids Page and ^^Angel^^
Tuesday, June 5, 2007 9:38 AM CDT
WEDNESDAY 6:40 PM UPDATE: Ciara is slowly getting better every day. But as I was taking her to the doctor this morning which is an hour from our house, the school called and said that Hunter was having trouble breathing and they were thinking about calling 911. I called my brother in law who is an EMT and he picked Hunter up from school and we took him to the doctor. Hunter aspirates so I assumed that he might have pneumonia too but it doesn't seem that way. His lungs sound clear but are wheezy so they think that he aspirated and the stomach fluids irritated his lungs. A few minutes ago I almost called 911 because he was coughing and choking on his saliva so bad that he couldn't breath and he looked so scared. He just looks and sounds so pitiful and he is so tired. His coughing seems to slowly stopping so hopefully that was the worst but if he continues or gets worse we are off to the hospital again. I honestly don't know how much more of this I can take, I am mentally and emotionally a wreck!
WEDNESDAY 11:30 AM UPDATE: Alicia took Ciara to her follow up appt at Kaiser today and got a call (from school) while she was there that Hunter was not acting right. He was breathing hard short breaths and looked blue at one point. They said they were not sure if they should call 911 or not. He also has a weird rash all over his face. So, his uncle picked him up and Alicia is on her way back to Ione to pick him up and take him back to Kaiser. As you can imagine Alicia is completely overwhelmed at this point. Please pray...I will update after the doctors appt....Alyssa
We have a donation page set up, just click here to check it out: Bennett Kids Page
and ^^Angel^^
Friday, June 1, 2007 10:02 PM CDT
Well Ciara has been home since Wednesday afternoon and Wednesday and Thursday she really had us worried and we almost took her back to the hospital yesterday. We had her on the most oxygen that we could give her at home and she was still having troubles but we kept her home and prayed that she would pull thru, which she did. John went back to work this morning and Hunter went to school so it was just myself and Ciara which made me nervous. She is on 5 liters of oxygen by nasal canula and has been all day. A little bit ago I turned her oxygen down to 3.5 liters and she seems to be doing alright so I am praying that she continues to stay like this thru the night. The pulse ox machine was delivered yesterday afternoon so we finally have that at home. Our landlord called today to see if we wanted to buy our house because he is selling it for $250,000. Of course we don’t have the money to buy it and with John going to nursing school, he won’t be able to work so I don’t think we could afford it right now so I guess we have to start looking for someplace else to move. I keep telling Alyssa that she needs to move here and we can all get a big house together. We have a donation page set up, just click here to check it out: Bennett Kids Page
and ^^Angel^^
Friday, June 1, 2007 10:02 PM CDT
Well Ciara has been home since Wednesday afternoon and Wednesday and Thursday she really had us worried and we almost took her back to the hospital yesterday. We had her on the most oxygen that we could give her at home and she was still having troubles but we kept her home and prayed that she would pull thru, which she did. John went back to work this morning and Hunter went to school so it was just myself and Ciara which made me nervous. She is on 5 liters of oxygen by nasal canula and has been all day. A little bit ago I turned her oxygen down to 3.5 liters and she seems to be doing alright so I am praying that she continues to stay like this thru the night. The pulse ox machine was delivered yesterday afternoon so we finally have that at home. Our landlord called today to see if we wanted to buy our house because he is selling it for $250,000. Of course we don’t have the money to buy it and with John going to nursing school, he won’t be able to work so I don’t think we could afford it right now so I guess we have to start looking for someplace else to move. I keep telling Alyssa that she needs to move here and we can all get a big house together. We have a donation page set up, just click here to check it out: Bennett Kids Page
and ^^Angel^^
Wednesday, May 30, 2007 8:25 PM CDT
WEDNESDAY 10:30 PM UPDATE: For the past few hours Ciara hasn't been doing very well. Her SATs dropped to 79 so I turned the oxygen up to the most that it will go which is only 5 liters and she is still hanging in the upper 80's and sometimes the low 90's. I am giving her the breathing treatments right now and then I will do the chest PT and if I can't get her SATs to go up and we are headed back to the hospital because we don't have enough oxygen here for her so pray that she gets over this bump fast!
Since John isn’t working because he is at the hospital and taking care of Hunter, we have a financial issue at the moment. We have a donation page set up, just click here to check it out: Bennett Kids Page
and ^^Angel^^
Wednesday, May 30, 2007 8:25 PM CDT
WEDNESDAY 10:30 PM UPDATE: For the past few hours Ciara hasn't been doing very well. Her SATs dropped to 79 so I turned the oxygen up to the most that it will go which is only 5 liters and she is still hanging in the upper 80's and sometimes the low 90's. I am giving her the breathing treatments right now and then I will do the chest PT and if I can't get her SATs to go up and we are headed back to the hospital because we don't have enough oxygen here for her so pray that she gets over this bump fast!
Since John isn’t working because he is at the hospital and taking care of Hunter, we have a financial issue at the moment. We have a donation page set up, just click here to check it out: Bennett Kids Page and ^^Angel^^
Wednesday, May 30, 2007 8:25 PM CDT
We just got home with Ciara, yippee!! Yesterday I wrote a letter to the hospital administrator which apparently worked. I was awoken this morning by some woman that works there, something to do with patient continuity, and she said that she just heard about us and is making us her main priority this morning. Hunter and Ciara both had physical therapy appointments scheduled for this afternoon so we stayed at Kaiser until 1:00, then packed up and went to their appointments and then on to our house. When we got home the patient continuity lady called and said that she had to call in a lot of favors but the pulse ox would be delivered this evening. Since we have been home Ciara has been on 2 liters of oxygen and is relaxing. Thank you all for your prayers, phone calls and emails, you are all so wonderful to us! Below is the letter that I wrote to the administrator but I also added a page of pictures so they could see that she was a real person, not somebody costing them money.
The next thing that we really need for Ciara is a compressed oxygen machine so now that we have the pulse ox, we will be working on getting Ciara one of these, but I know that Kaiser won't pay for these so we will doing a fundraiser. My friend Shelley is setting up a car wash so once we have the date for that, I will let you all know. You can see what I can talking about by clicking here: WalkAbout Hideaway Compressed Oxygen
Dear Kaiser Hospital Administrator:
I am writing to request a portable oximeter unit for my daughter Ciara Bennett's home use. She does have Sanfilippo Syndrome which has caused her to have many respiratory problems such as asmtha, allergies and pneumonias due to aspiration requiring close follow up. Ciara has frequent exacerbations of her asthma and has had 3 pneumonias in the past six months. She has been at Kaiser Morse Ave for the past two weeks and is on oxygen because her blood oxygen level keeps dropping. Because of this Ciara's oxygen level needs constant monitoring to measure for any acute desaturations. The doctor ordered oxygen for us to use at home which was delivered to our house last week but we can not bring her home until we have a pulse ox machine for her so that we can monitor what her oxygen level is. We were to be discharged last Friday but we do not feel comfortable bringing to our house which is an hour away from the nearest Kaiser facility unless we have this machine. Two doctors have written prescriptions for us to get this machine for Ciara but Kaiser keeps denying it and I just don't understand why. It is costing you so much more to keep her in the hospital then the $800 cost of the machine.
I don't know if you have heard of our family before but we were in the news media several years ago when we had to fight Kaiser to get my son's transplants. All three of our children have Sanfilippo Syndrome for which there is no cure and they will only live to 10-13 years old. Ciara is 11, Hunter is 9 and Tommy was 4 when he passed away three years ago. We fought Kaiser for Tommy's transplant and did get one million dollars for his treatment and we are fighting for our children again. Only this time we are asking for an $800 machine to help make sure that our daughter is safe and comfortable at this time nearing the end of her disease. I don't know if you have any children but if you do, imagine your child struggling for every breath and not knowing what is happening to her. Ciara has the mental capacity of a 10 month old and doesn't understand much of what is happening around her, but she does communicate by crying or smiling, sometimes laughing. I have watched my little Tommy struggle for every breath, I have watched as his organs slowly shut down. I was the one to take the mask off of his face that was helping him breath and watched as his body slowly stopped, beat by beat, breath by breath. I can't imagine having to go thru that again but I don't have that choice. I have to watch Ciara and Hunter go thru that same thing and all I am asking from Kaiser is for a little peace of mind for our family during this time. If we bring Ciara home without this pulse ox machine I will not have any peace of mind, I will not get any sleep for I will be terrified that Ciara's oxygen level will drop so low again and I won't know what it is. Last week when the doctor told me that he ordered oxygen to be delivered to our house I asked "How am I supposed to know when she needs it?" I was told by the Kaiser doctor and nurse that "when she looks in distress" and "when the skin around her eyes and forehead turns gray and her lips turn blue, then she needs oxygen." Now I think that that is going a little too far, she shouldn't have to get that bad before she gets oxygen, you should all be appalled by this. Since it appears that we will be in the hospital for quite a while still, you can contact me on my cell phone which is (xxx) xxx-xxxx or (xxx) xxx-xxxx, I will be waiting to hear from you.
I feel that Ciara requires close monitoring that could be available if she had a pulse oximeter unit. By using a pulse oximeter at home we can monitor her respiratory status more closely, hopefully, thereby preventing hospitalization and trips to the emergency room. Ciara lives in a rural area and any sudden and acute exacerbations may lead to a sudden marked deterioration in her respiratory status. If we can monitor Ciara's oxygen saturation on an outpatient basis whenever she begins to have acute difficulty then perhaps we could avoid trips to the emergency room by ambulance and possible hospitalizations.
Sincerely,
John and Alicia Bennett
cc: News 10, Channel 3 News, Channel 13 News, Fox News, Sacramento Bee, Stockton Record, Amador Dispatch, California Consumer Health Care Council Since John isn’t working because he is at the hospital and taking care of Hunter, we have a financial issue at the moment. We have a donation page set up, just click here to check it out: Bennett Kids Page
and ^^Angel^^
Wednesday, May 30, 2007 8:25 PM CDT
We just got home with Ciara, yippee!! Yesterday I wrote a letter to the hospital administrator which apparently worked. I was awoken this morning by some woman that works there, something to do with patient continuity, and she said that she just heard about us and is making us her main priority this morning. Hunter and Ciara both had physical therapy appointments scheduled for this afternoon so we stayed at Kaiser until 1:00, then packed up and went to their appointments and then on to our house. When we got home the patient continuity lady called and said that she had to call in a lot of favors but the pulse ox would be delivered this evening. Since we have been home Ciara has been on 2 liters of oxygen and her relaxing. Thank you all for your prayers, phone calls and emails, you are all so wonderful to us! Below is the letter that I wrote to the administrator but I also added a page of pictures so they could see that she was a real person, not somebody costing them money.
The next thing that we really need for Ciara is a compressed oxygen machine so now that we have the pulse ox, we will be working on getting Ciara one of these, but I know that Kaiser won't pay for these so we will doing a fundraiser. My friend Shelley is setting up a car wash so once we have the date for that, I will let you all know. You can see what I can talking about by clicking here: WalkAbout Hideaway Compressed Oxygen
Dear Kaiser Hospital Administrator:
I am writing to request a portable oximeter unit for my daughter Ciara Bennett's home use. She does have Sanfilippo Syndrome which has caused her to have many respiratory problems such as asmtha, allergies and pneumonias due to aspiration requiring close follow up. Ciara has frequent exacerbations of her asthma and has had 3 pneumonias in the past six months. She has been at Kaiser Morse Ave for the past two weeks and is on oxygen because her blood oxygen level keeps dropping. Because of this Ciara's oxygen level needs constant monitoring to measure for any acute desaturations. The doctor ordered oxygen for us to use at home which was delivered to our house last week but we can not bring her home until we have a pulse ox machine for her so that we can monitor what her oxygen level is. We were to be discharged last Friday but we do not feel comfortable bringing to our house which is an hour away from the nearest Kaiser facility unless we have this machine. Two doctors have written prescriptions for us to get this machine for Ciara but Kaiser keeps denying it and I just don't understand why. It is costing you so much more to keep her in the hospital then the $800 cost of the machine.
I don't know if you have heard of our family before but we were in the news media several years ago when we had to fight Kaiser to get my son's transplants. All three of our children have Sanfilippo Syndrome for which there is no cure and they will only live to 10-13 years old. Ciara is 11, Hunter is 9 and Tommy was 4 when he passed away three years ago. We fought Kaiser for Tommy's transplant and did get one million dollars for his treatment and we are fighting for our children again. Only this time we are asking for an $800 machine to help make sure that our daughter is safe and comfortable at this time nearing the end of her disease. I don't know if you have any children but if you do, imagine your child struggling for every breath and not knowing what is happening to her. Ciara has the mental capacity of a 10 month old and doesn't understand much of what is happening around her, but she does communicate by crying or smiling, sometimes laughing. I have watched my little Tommy struggle for every breath, I have watched as his organs slowly shut down. I was the one to take the mask off of his face that was helping him breath and watched as his body slowly stopped, beat by beat, breath by breath. I can't imagine having to go thru that again but I don't have that choice. I have to watch Ciara and Hunter go thru that same thing and all I am asking from Kaiser is for a little peace of mind for our family during this time. If we bring Ciara home without this pulse ox machine I will not have any peace of mind, I will not get any sleep for I will be terrified that Ciara's oxygen level will drop so low again and I won't know what it is. Last week when the doctor told me that he ordered oxygen to be delivered to our house I asked "How am I supposed to know when she needs it?" I was told by the Kaiser doctor and nurse that "when she looks in distress" and "when the skin around her eyes and forehead turns gray and her lips turn blue, then she needs oxygen." Now I think that that is going a little too far, she shouldn't have to get that bad before she gets oxygen, you should all be appalled by this. Since it appears that we will be in the hospital for quite a while still, you can contact me on my cell phone which is (209) 256-0938 or (209) 423-2225, I will be waiting to hear from you.
I feel that Ciara requires close monitoring that could be available if she had a pulse oximeter unit. By using a pulse oximeter at home we can monitor her respiratory status more closely, hopefully, thereby preventing hospitalization and trips to the emergency room. Ciara lives in a rural area and any sudden and acute exacerbations may lead to a sudden marked deterioration in her respiratory status. If we can monitor Ciara's oxygen saturation on an outpatient basis whenever she begins to have acute difficulty then perhaps we could avoid trips to the emergency room by ambulance and possible hospitalizations.
Sincerely,
John and Alicia Bennett
cc: News 10, Channel 3 News, Channel 13 News, Fox News, Sacramento Bee, Stockton Record, Amador Dispatch, California Consumer Health Care Council Since John isn’t working because he is at the hospital and taking care of Hunter, we have a financial issue at the moment. We have a donation page set up, just click here to check it out: Bennett Kids Page
and ^^Angel^^
Monday, May 28, 2007 8:43 AM CDT
UPDATE TUESDAY 10:30PM: Well another day of much of the same. Ciara had a REALLY good night and morning in the the afternoon. She was off oxygen and everything! Then when I walk in the door she decided to show off and act goofy! She looked like she was in pain so we gave her Tylenol. She also started to drop in her sats. She kept diving into the 80's and seemed to enjoy it so we put her back on 02, 5 liters to be exact. She is still very gurgly. At least it seems as she is taking longer periods where she does not need oxygen, but when she needs it...whew stressful! She is also coughing a bit so that is good. Still not much news on the pulseox machine. We will see what tomorrow brings. Please keep up the prayers. Poor Ciara just looks so unhappy! Today she had circles under her big blue eyes and just looked tired. She is tough though! Either I or Alicia will update tomorrow. Thanks!
Alyssa
I don't know the hospital administrator's name or contact info because the Member Services is closed for the holiday. People have asked if they can call or write a letter to Kaiser on our behalf which I think is a great idea. Since I am on my way back to the hospital without a computer to update, you can call the Member Services phone # and ask them for the info, we are at Kaiser Hospital on Morse Avenue in Sacramento:
Since John isn’t working because he is at the hospital and taking care of Hunter, we have a financial issue at the moment. We have a donation page set up, just click here to check it out: Bennett Kids Page
and ^^Angel^^
Thursday, May 24, 2007 11:32 PM CDT
UPDATE FRIDAY 6:00PM: Two words...KAISER SUCKS!!!! First I will tell you how Ciara is doing then I will get on to why Kaiser sucks, even though most of us know that anyway. Ciara is still the same. She sounds really gunky today, she is up to about 7 liters of oxygen on the mask and she is starting to run what might turn into a temp. She is still fighting like hell....which is good but so unfair that this poor child has to struggle to breathe for so long. Its heartbreaking, nerve racking and its making Alicia, John and I all have monsterous stomaches. Ok now on to why Kaiser sucks.
Today they were going to finally send Ciara home because its gotten to a point where she is not getting better and she is not getting worse and Alicia can do what they are doing in the hospital at home so.....why not! So they ordered her oxygen and today they said that they were going to get her a pulseox machine...FINALLY! Then at 4pm on a FRIDAY the lovely doctor came in to say that kaiser is denying it and that medical won't cover it. Kaiser does not want to pay for it...even though it is cheaper to give it to Alicia and send them home then to keep Ciara in the hospital?!?!?!? Come on....this is stupid! This family has been through enough! The device cost under six hundred dollars! So now they have to appeal it to Kaiser which will take a few days, BUT they can't put in the appeal until Tuesday because Monday is a holiday....so guess what....another week in the hospital! Alicia is at her wits end as she is there most of the time...I swear I don't know how she does it. I am there usually everyday for a good 10-14 hours, but to be there almost 24/7 with nothing to do...SUCKS. Don't get me wrong...we are all so very thankful that Ciara is here with us still, but this child needs to come home, this family needs to come home and all that is stopping them is a hospital not wanting to spend some money...Ok sorry for my rant. Please keep Ciara in your prayers...she is having a rough time today. I will update again later. Alyssa
I just got home from the hospital, John is staying with Ciara tonight. This morning when I woke up Ciara was doing so well. She was off of the oxygen and breathing so quietly when the doctor came in to see her. He said that she looked much better then when he saw her earlier in the week and we could most likely go home today. He stepped out to look up something for me and when he came back about 30 minutes later, Ciara was very gurgly and back on oxygen so we are not going home today. I have a feeling that this is how she is going to be from now on. She does great when she is asleep, usually not on oxygen, but when she is awake she is very congested and her throat is full of mucus and stuff which makes it very hard for her to get air, which is why she is still on the oxygen. A while later the doctor came in and told me that he ordered oxygen for our house which will be delivered sometime today and they will also deliver some portable bottles to the hospital for us to take when we have to go out. I asked how was I supposed to know if she needs the oxygen if I don't know what her SATs are. I was told that when the skin around her eyes and forehead turn gray and her lips turn blue/grey that is when she needs oxygen. CAN YOU BELIEVE THAT!? Needless to say I was a little on the angry side and started making my phone calls. Around 5:00 the pulmonologist came in, we haven't seen him before, but I really like him. We talked about Ciara, Hunter and Tommy and what kind of equipment we had and what we need. I told him about the pulse ox so he said that he will see what he can do to get us one. He said that they don't like to send them home with patients because you just watch the numbers and freak out. I told him that we are not the every day parents and I think that we can handle it. I will not get any rest unless we have one. I also asked him about the vibrating vest but he said they rarely send those home with patients because they cost $15,000 but I told him we have Kaiser and Medi-Cal and he said that they will cover the cost so most likely we will get one of those soon too. He also said that the cultures they took show that she has pseudomonas pneumonia which is what I was afraid of. This evening Ciara was very gurgly and having some issues but I just called John and he said she is the same but coughing up a bunch of stuff so that is good. We will be meeting with the pulmonologist again tomorrow so I will update again when I can. I have hundreds of emails waiting for me so if you have sent me one and haven't heard from me, I am trying to get to them all but I am usually only home long enough to take a shower and then back to the hospital. Oh, I forgot to mention that on top of everything else, our landlord called and they are selling our house so now we have to look for someplace else to live.
So Kaiser and Medi-Cal don't cover oximeters so that means that we have to buy one but they are too expensive. Here is what I am talking about, just click here: Nonin 2500A PalmSAT Since John isn’t working because he is at the hospital and taking care of Hunter, we have a financial issue at the moment. We have a donation page set up, just click here to check it out: Bennett Kids Page
and ^^Angel^^
Tuesday, May 22, 2007 4:46 PM CDT
THURSDAY 11:15 PM UPDATE: I just got home from the hospital, John is staying with Ciara tonight. This morning when I woke up Ciara was doing so well. She was off of the oxygen and breathing so quietly when the doctor came in to see her. He said that she looked much better then when he saw her earlier in the week and we could most likely go home today. He stepped out to look up something for me and when he came back about 30 minutes later, Ciara was very gurgly and back on oxygen so we are not going home today. I have a feeling that this is how she is going to be from now on. She does great when she is asleep, usually not on oxygen, but when she is awake she is very congested and her throat is full of mucus and stuff which makes it very hard for her to get air, which is why she is still on the oxygen. A while later the doctor came in and told me that he ordered oxygen for our house which will be delivered sometime today and they will also deliver some portable bottles to the hospital for us to take when we have to go out. I asked how was I supposed to know if she needs the oxygen if I don't know what her SATs are. I was told that when the skin around her eyes and forehead turn gray and her lips turn blue/grey that is when she needs oxygen. CAN YOU BELIEVE THAT!? Needless to say I was a little on the angry side and started making my phone calls. Around 5:00 the pulmonologist came in, we haven't seen him before, but I really like him. We talked about Ciara, Hunter and Tommy and what kind of equipment we had and what we need. I told him about the pulse ox so he said that he will see what he can do to get us one. He said that they don't like to send them home with patients because you just watch the numbers and freak out. I told him that we are not the every day parents and I think that we can handle it. I will not get any rest unless we have one. I also asked him about the vibrating vest but he said they rarely send those home with patients because they cost $15,000 but I told him we have Kaiser and Medi-Cal and he said that they will cover the cost so most likely we will get one of those soon too. This evening Ciara was very gurgly and having some issues but I just called John and he said she is the same but coughing up a bunch of stuff so that is good. We will be meeting with the pulmonologist again tomorrow so I will update again when I can. I have hundreds of emails waiting for me so if you have sent me one and haven't heard from me, I am trying to get to them all but I am usually only home long enough to take a shower and then back to the hospital. Oh, I forgot to mention that on top of everything else, our landlord called and they are selling our house so now we have to look for someplace else to live.
WEDNESDAY 8:00 PM UPDATE: This morning the doctor came in and listened to Ciara and he said that her lungs haven't gotten worse but she is wheezing so he wants breathing treatments every 4 hours. This afternoon the nurse brought in a TumbleForm Chair so Ciara sat in that for about 3 hours. When I first put her in it she fussed a little but them calmed down and did great. Because she was sitting up I was able to suction a lot of goo out of her throat. When I put her back into bed, she started crying with big tears which she never does and it broke my heart. I called the nurse and asked her to give Ciara some Morphine because obviously something was hurting her. The doctor came in again and said that she will be here for a few more days, I wasn't surprised. Aunt Kathy came to sit with her so that I could run home and take a shower and get some clean clothes. Since she is wheezing more I pray that she hasn't aspirated again. I have been asking Kaiser for some oxygen and a pulse ox for our house so that I can moniter her but they keep saying that she doesn't need it. Since we have been in the hospital I keep asking about getting them and the doctors have finally agreed so send us home with oxygen but no pulse ox which I don't understand. How am I supposed to know if she needs oxygen if I don't know what her SATs are? So Kaiser and Medi-Cal don't cover oximeters so that means that we have to buy one but they are too expensive. Here is what I am talking about, just click here: Nonin 2500A PalmSAT
Thank you all for the phone calls and visits and keep praying!
Since John isn’t working because he is at the hospital and taking care of Hunter, we have a financial issue at the moment. We have a donation page set up, just click here to check it out: Bennett Kids Page and ^^Angel^^
Saturday, May 19, 2007 4:37 PM CDT
MONDAY 9:00 PM UPDATE: Today was a bumpy day. Ciara was off oxygen this morning for a bit then had quite a few drops today. She hit the 80's several times. They put her on the max 02 which was 10 liters. She is now down to 7 liter on the mask and is relaxing thanks to morphine in mom's arms. She did have x-rays that were took today before the drops in 02 which looked better, but who knows now. Hopefully the drops is due to things in her throat rather her lungs. Ciara is keeping everyone on their toes!!!! Keep the prayers up. We gotta get her off oxygen and get her breathing on her own! Thanks, Alyssa
UPDATE SATURDAY 10:30 PM:I just got home from the hospital after a long hard day. They took more x-rays of Ciara and found that she is worse...there is more fluid in her lungs. The doctor then proceded to have Alicia and John sign papers on how far they wanted to go. They decided...that if need be, they would have Ciara be intubated and then give her a chance to get better...if she does not then it will give everyone a chance to come and say goodbye...but we are praying that this never will get to this point. They are changing her antibiotics as well in hopes that it will help. They are also testing for different types of bacteria. They also started her on morphine as her heartrate all day long kept on getting into the 140's, which is a sign that she is in pain. Its just so painful to watch her suffer. She is trying so hard to breathe....her little lips are so chapped from the oxygen blowing in her face and her eyes are watering. There are no words that can describe how horrible this is to watch. Tomorrow....we are hopefully going to have her baptised. Please pray for a peaceful healing night. Thank you and as always I will update again as news comes in....Ciara's PROUD Godmother, Alyssa Since John isn’t working because he is at the hospital and taking care of Hunter, we have a financial issue at the moment. We have a donation page set up, just click here to check it out: BENNETT KIDS PAGE and ^^Angel^^
Tuesday, May 15, 2007 9:51 AM CDT
SATURDAY 12:30 AM: Ciara plunged down to 81. They upped her oxygen to 8 liters and she is hanging out around 93. Will update later Pray pray pray....Alyssa
FRIDAY 10:30 PM UPDATE:Today was a calmer day. They took down her oxygen to 4 liters this morning and she did well. Then at about 5 we took her OFF oxygen and she held her own for about 2 hours then her numbers started to go down and she turned bright red and hot. She is now back on oxygen, but right now only 2 liters and she is at 93 Sooo...looks like at least another 24 hours before she may get outta there. Please pray for an oxygen dependent free day tomorrow with no scarry suprizes!!! She needs to get outta there! Thanks...Alyssa
THURSDAY 11:00 PM UPDATE: What a day....Ciara pneumonia is worse then it was this morning, but a bit better then it was when she was first admitted. She gave us several scares today and had us on our toes. She keeps on dipping into the low 80's. They increased her oxygen to 12 liters. Yesterday they had her on room air for a while. They have her now on two different antibiotics, steriods, and a bunch of other things i can't spell. We are having to sunction her several times an hour....like every 10 minutes it seems. When John and Alicia went back to Ione today for a while she dropped pretty quickly in her stats (I think she likes to freak me out), and ever since then she nose dives several times in an hour. The doctor say there are a few more steps she can go up in oxygen before the word ventalitor is used...THANK GOD! She is fighting like hell...please fight with her by praying....I will update if anything else happens tonight and for sure tomorrow....thanks....Alyssa
THURSDAY 7:30 AM UPDATE: I just called John and he said that her pulse ox was 90 percent and she was still on the nasal canula so of course now I am scared again. I am going to hop in the shower and then head over to the hospital, hopefully she just needs mommy there so make sure they are doing everything they are supposed to. Daddys are good, but mommys know everything!
WEDNESDAY 11:55 PM UPDATE: Ciara was doing better today so they took her oxygen mask off and put her on the nasal canula and she did very well. Her SATs were at 100 percent which surprised me because she breathes thru her mouth. So at 7:00 tonight I took her oxygen off and her SATs were still around 96-98 percent. A couple of hours later they started to drop a little and she was coughing again so I put the oxygen back on her. After I fed her and gave her the meds, she was still around 93-94 on oxygen so the nurse turned the oxygen up a little and I started to worry again and I just hated to leave. John is spending the night with Ciara tonight so I took Hunter home. I am so worried about her! They seem to think that this all started because of her allergies which started her asthma to act up which caused her to aspirate which caused the pneumonias. So we will be in the hospital for a few days. I do not have internet so if you need me you can call my cell phone or send me a text message. Alyssa will post updates here for me so keep checking back and pray that little Ciara can get thru this, I am just not ready to lose another child!
WEDNESDAY 10:00 AM UPDATE: Hey its Alyssa. This will again be real quick. Alicia just called me and said that the doctors said that Ciara had pneumonia in both lungs. Alicia also said that Ciara does look ok though and does not sound as gunky....but as well all know phenumonia is very hard on her little body. Please pray pray pray. They will be in the hospital for at least a few days. I will update again later. Thanks for checking in.
WEDNESDAY 3:00 AM UPDATE: This is Alyssa. This will be short, I am really tired. Alicia called me at work at about 6pm. She said that Ciara was being taken by ambulance to the nearest hospital. She could hardly breathe. I drove out there and she was looking pretty rough. Her stat's when she got there were at 77The did an x-ray and her lungs looks clear. So it is all in her throat. There is so much mucus. They kept on suctioning her and giving her breathing treatments. She was then transfered to Kaiser in Sacramento at around 11:30pm. Alicia and I followed the ambulance. She is now settled in her room and is stating at about 96n 7 liters of oxygen. The docs are not sure what is going on yet...I will update again tomorrow. Too tired to type more. Just please pray....its so heartbreaking to watch her try so hard to do something we do without thinking....Thank you everyone...
TUESDAY 4:00 PM UPDATE: Ciara was doing better but this morning I only gave her half her dose of Robinol, I am trying to get her off these meds, but she is gurgling and having trouble breathing again, darn it! I just dosed her up with everything but the kitchen sink so hopefully she will start to breath better soon!
Today is National MPS Day and as you know, Ciara, Hunter and Tommy have Sanfilippo which is also called MPS-III. Please take a moment today to honor all of our MPS/ML children and to remember the angels that we have lost to this disease.
and ^^Angel^^ 
Saturday, May 5, 2007 11:19 AM CDT
TUESDAY 5:50 UPDATE: I have been too upset to update, sorry. They gave me a prescription to help decrease her secretions which will hopefully help with the chest congestion. I also got some steroids for her because she was wheezing. If the secretion med doesn't help then the next step is a traech. But because she isn't moving around and mostly asleep, she will keep getting pneumonia after pneumonia which is what is going to get her in the end so we had to discuss how far do we want to go. I just can't believe how fast this all happened and I am not ready to go thru this again. So, that is where we are now, just have to wait and see what happens.
SUNDAY 6:00 PM UPDATE: Last night Ciara opened her eyes so I put her in my lap and she was just laying back and looking around. All of a sudden she sat upright and just grinned, of course I started to cry, I was so relieved to see her awake again, she hadn't opened her eyes since Thursday! She stayed awake until almost 5:00 this morning but has been asleep ever since. I pray that she continues to have more awake time, especially since her birthday is tomorrow!
Ciara’s birthday party will be on May 12 at 1:00 at Howard Park in Ione. We will be there for Ione Homecoming so we decided to have her party there. There is a carnival, petting zoo, games and food so it will be a lot of fun. If you would like to come, just email me for directions! You can visit her Wish List by clicking here CIARA'S WISH LIST
and ^^Angel^^
Tuesday, May 1, 2007 3:28 AM CDT
THURSDAY 5:30 PM UPDATE: Ciara had a good day at school. Of course she slept most of the day, but they said that she was relaxed and didn't move or jerk at all so apparently the new drug is working!
THURSDAY 7:00 AM UPDATE: Well, we went to see the neurologist yesterday and he gave Ciara a couple new prescriptions that will hopefully help with her constant moving and jerking. He gave her Clonopin which I give her only when she is having one of these episodes. He said that the Clonopin has some anti-seizure qualities about it and it also has a sedative but after a couple of months those will wear off but it will still help with her movement for years. He wanted to try Risperdal but I said NO WAY! We tried that before and didn't like the side effects, as have a alot of other MPS families, so we got a different med which I will try only if the Clonopin doesn't seem to work. Ciara had a great first half of the day yesterday but after a few hours at Kaiser she was aggitated again and stayed that way for most of the night. I gave her a dose of the clonopin yesterday evening and she slept all night long. I decided to send her to school this morning so I gave her another dose and hopefully she will have a good day. My other concern is that her feet/toes are so painful because she rubbed the skin off. I have then bandaged very well with thick abdominal pads but yesterday she kept kicking the footrest on her wheelchair and started them bleeding again. So this morning I taped a blanket to the foot rest and sent a note to school asked them to keep her out of her chair as much as possible until her feet heal. I pray that she has a good day today but I am half expecting a phone call to come pick her up, which is fine with me. At least I can run out to the grocery store right now and get a few things, the cupboards are bare here since I haven't been able to leave for almost two weeks. I will post again later after I hear how Ciara did at school.
WEDNESDAY 7:30 AM UPDATE: Ciara had a very peaceful night, thank God, boy did she need it! She has an appointment with her neurologist this afternoon so I will post an update when we get home.
TUESDAY 6:00 AM UPDATE: Ciara didn't sleep all night, she was jerking and crying all night long. I had her on the couch last night and I was in the recliner next to her. John was up at 5:15 to call his work to see if they had a load for him today, of course they didn't, and he repositioned her. When I woke up again at 6:00 to get Hunter ready for school, I looked at Ciara and there was so much blood on the couch and her feet and legs. I am assuming it is from the constant rubbing on the couch that rubbed off her skin, poor little thing. Here is a picture of what I found: CIARA PIC. After I updated the journal at 1:00 this morning I emailed the video to her doctors so hopefully somebody will be able to help her to stop the moving. I will update again when I know more.
Hello everybody. I tried to update the journal a few days ago but when I did, it disappeared and I just didn’t have the time or energy to type it again, sorry. Things haven’t been going well here for the past week. Hunter is doing alright but Ciara is my main concern right now. I am sorry is this starts rambling but I am on the verge of tears right now. Last Tuesday she had three seizures. Since then she has been having a lot of trouble and I just don’t know what to do about it. She can’t sit up, she flops to the left and she has been kind of jerking or doing this non-stop movement with her body and crying. She can’t stop the constant movement and because of this now has sores all over her from the constant friction. I had to go to the grocery store yesterday so I put her in her car seat and she just kept jerking around and was flopped to the left side and was banging her head on the car door every 3 seconds, it is so heartbreaking to watch her. Also since then she has felt a little warm to me but she does have trouble with her body temp a lot and it has been in the 90s here this week. Last week I had John listen to her lungs and then they sounded clear. I just had him listen to her again tonight and he said he can’t tell because she is moving and jerking so much, but he might have heard something in her left lung. So I am going to see if I can get some antibiotics for her to start taking. So now I am wondering if the seizures were caused by a lung infection which is what happened the last two times she had pneumonia or is the flopping and jerking caused by the seizure, I have no idea. Today I started giving her vitamin E and the B vitamins because sometimes that will help with this sort of problem so hopefully she will get better. I have been so busy with Ciara this past week and I am exhausted and I have pretty much reached my limit in the sanity department. My heart is breaking that she is suffering like this. On top of all of this, I received a letter from Social Security Friday saying that the IRS reported to them that we received a retirement payout of almost $5000 in 2005 from a hospital that we have never heard of nor worked at, we haven’t received a retirement payout from anybody. The letter said that I have until May 4 to get all of the paperwork together and have it in their hands or the kids will lose their SSI and Medi-Cal benefits. I tried calling SSI Friday and today and got nothing but a busy signal for both days. Finally I called the national 800 number and got some stupid woman who didn’t even look up our account in her computer and told me that as far as they were concerned, the IRS is right and I have to prove otherwise. I asked her if I really only had 4 days from the receipt of the letter to get this all worked out and the paperwork to Social Security and she said yes. She told me to call the IRS and straighten it out with them. By this time I was in tears but I called the IRS and got nothing but a machine so I left a message and they will call me back in 2 days. So now the most likely won’t be getting their checks on the first and will lose their insurance which covers their $1000 a month medical expenses, John hadn’t worked much in the past couple of weeks because they didn’t have any loads for him to haul so we are flat broke and I don’t know what to do about it. I have called every agency I can think of and nobody has called me back. I just don’t understand why it is so hard for families like us to get by, why do we have to fight so hard for every little thing when we have our hands so full on a daily basis. The time that I am spending on the phone, fighting and trying to get this all taken care of is precious time taken away from caring for Ciara and Hunter and Ciara really needs every minute of my time right now. Well, it is already 1:20 in the morning and Ciara is still jerking and crying so I better go try and make her comfortable if that’s even possible.
We have a donation page set up, just click here to check it out: ACTIVE GIVING PAGE Please say a prayer for our friend Robin, her son, Jay Ornsby, was killed in Iraq this weekend. Robin is such a wonderful person and is the only person that will cut Hunter's hair and it has really hit our little hard that her son is gone. 
I do want to say thank you to Robert for being so generous to our family, you are the best! I also have to say thank you to Bill Lyon for the wonderful work he did on our laptop computer. If you need any computer help at all, please visit Bill’s website by clicking here: LYON CONSULTING SERVICES
and ^^Angel^^ 
Monday, April 23, 2007 2:53 PM CDT
Sorry it has been so long between updates but things have been busy around here lately. Hunter has been going to his physical therapy at Kaiser which has been wonderful. His therapist is fantastic and is really doing all she can to get some equipment for him and most important, braces for his legs. We also got a referral for her to see Ciara so Ciara has her first appointment on Friday so hopefully she will get some much needed help too. I don’t know if she will get braces for her feet and legs, but she will definitely be getting them for her hands since they are so curled and balled up, poor baby. This past weekend was the Peddlers Fair so I was pretty busy all week at the fire dept getting everything in order for the weekend. We sold BBQ tri-tip sandwiches on Saturday and boy was I exhausted when we got home! Ciara did very well but every time I took Hunter out of the car and put him in his wheelchair, he screamed at the top of his lungs until I put him back in the car, then he was happy. So, thankfully my friend that works for the city got a parking spot saved for me right by our booth on Main Street so Hunter stayed in the car most of the day, watching everybody and playing with his dog, happy as could be. Well, I guess that is it for now, I am sure more things happened but my brain is so tired I can’t remember anything else right now! Ciara’s birthday is coming up so sometime this week I will post her Wish List for those who have asked for it. I do want to say thank you to Robert for being so generous to our family, you are the best! I also have to say thank you to Bill Lyon for the wonderful work he did on our laptop computer. If you need any computer help at all, please visit Bill’s website by clicking here: LYONS CONSULTING SERVICES
and ^^Angel^^
Monday, April 23, 2007 2:53 PM CDT
Sorry it has been so long between updates but things have been busy around here lately. Hunter has been going to his physical therapy at Kaiser which has been wonderful. His therapist is fantastic and is really doing all she can to get some equipment for him and most important, braces for his legs. We also got a referral for her to see Ciara so Ciara has her first appointment on Friday so hopefully she will get some much needed help too. I don’t know if she will get braces for her feet and legs, but she will definitely be getting them for her hands since they are so curled and balled up, poor baby. This past weekend was the Peddlers Fair so I was pretty busy all week at the fire dept getting everything in order for the weekend. We sold BBQ tri-tip sandwiches on Saturday and boy was I exhausted when we got home! Ciara did very well but every time I took Hunter out of the car and put him in his wheelchair, he screamed at the top of his lungs until I put him back in the car, then he was happy. So, thankfully my friend that works for the city got a parking spot saved for me right by our booth on Main Street so Hunter stayed in the car most of the day, watching everybody and playing with his dog, happy as could be. Well, I guess that is it for now, I am sure more things happened but my brain is so tired I can’t remember anything else right now! Ciara’s birthday is coming up so sometime this week I will post her Wish List for those who have asked for it. I do want to say thank you to Robert for being so generous to our family, you are the best! I also have to say thank you to Bill Lyon for the wonderful work he did on our laptop computer. If you need any computer help at all, please visit Bill’s website by clicking here: LYONS CONSULTING SERVICES
and ^^Angel^^
Sunday, April 8, 2007 11:12 AM CDT
and ^^Angel^^ 
Sunday, April 8, 2007 11:12 AM CDT
and ^^Angel^^ Wednesday, March 28, 2007 9:14 PM CDT
Well, Hunter had his birthday party on Saturday but in true Bennett style, things started off rocky. First, Hunter had a fever and runny nose so he was miserable. Then, I went to pick up his birthday cake and I had ordered a ½ sheet but they only made a ¼ sheet. So we went round and round about the cake, they didn’t really want to make me another one, they wanted to give me a frozen cake, but that’s not what I ordered and not what I paid for. So, after refusing all of the cakes she tried to give me, she finally made me another ¼ sheet cake, chocolate with whipped cream frosting. Of course by now we were late for Hunter’s party so when we got to the pizza place my friend came out to our car and told me that they don’t know anything about Hunter’s party. I had called them and booked the party three weeks ago and then called again a few days before the party and told them how many people and ordered the pizzas so they would be ready when we got there. After the cake mishap, I was ready for a fight so I went in there and very nicely said that we were here for Hunter’s party, did I need to pay now or after the party. They looked at me like I was crazy and said there wasn’t a party for Hunter. So, here we go again. I told them that I had called and booked it and a few days ago called again, they looked it up in their computer and saw that I booked it and found my order but just “forgot” about us. Now the problem is that they already have 3 birthday parties set up upstairs and there isn’t room for another party. I told them that they better find room because we are here and we are going up there. If I have to carry Ciara and Hunter up two flights of stairs for this party (no elevator), they better have it ready. So, they put us at another party’s table and moved that party outside, problem solved. Everybody had a great time but Hunter wasn’t feeling well and was so tired that he slept most of the party. Thank you everybody who came and everybody who sent cards and presents, you are all wonderful! Here is a picture of poor Hunter giving himself a breathing treatment and then him asleep while we sang Happy Birthday to him:
and ^^Angel^^
Wednesday, March 28, 2007 9:14 PM CDT
Well, Hunter had his birthday on Saturday but in true Bennett style, things started off rocky. First, Hunter had a fever and runny nose so he was miserable. Then, I went to pick up his birthday cake and I had ordered a ½ sheet but they only made a ¼ sheet. So we went round and round about the cake, they didn’t really want to make me another one, they wanted to give me a frozen cake, but that’s not what I ordered and not what I paid for. So, after refusing all of the cakes she tried to give me, she finally made me another ¼ sheet cake, chocolate with whipped cream frosting. Of course by now we were late for Hunter’s party so when we got to the pizza place my friend came out to our car and told me that they don’t know anything about Hunter’s party. I had called them and booked the party three weeks ago and then called again a few days before the party and told them how many people and ordered the pizzas so they would be ready when we got there. After the cake mishap, I was ready for a fight so I went in there and very nicely said that we were here for Hunter’s party, did I need to pay now or after the party. They looked at me like I was crazy and said there wasn’t a party for Hunter. So, here we go again. I told them that I had called and booked it and a few days ago called again, they looked it up in their computer and saw that I booked it and found my order but just “forgot” about us. Now the problem is that they already have 3 birthday parties set up upstairs and there isn’t room for another party. I told them that they better find room because we are here and we are going up there. If I have to carry Ciara and Hunter up two flights of stairs for this party (no elevator), they better have it ready. So, they put us at another party’s table and moved that party outside, problem solved. Everybody had a great time but Hunter wasn’t feeling well and was so tired that he slept most of the party. Thank you everybody who came and everybody who sent cards and presents, you are all wonderful! Here is a picture of poor Hunter giving himself a breathing treatment and then him asleep while we sang Happy Birthday to him:
and ^^Angel^^ Thursday, March 22, 2007 12:49 AM CDT
FRIDAY 11:25 PM UPDATE: Ciara had two seizures yesterday and apparently she had some at school again today. But she seems to be her old self so hopefully they are over with. Poor little Hunter is another story. About an hour ago he started sneezing and guck has been coming out of his nose ever since and he has a fever. I have him some Tylenol Cold and put him to bed but then I noticed he was breathing funny. I asked John to come listen to him and he said that his lungs don't sound like he has pneumonia but they were tight. I gave him a breathing treatment and John said that his lungs sounded better but I am so worried that this is the beginning of a pneumonia. In the past three months Ciara has had pneumonia twice and Hunter had it once already so I just can't stand the thought of either one of them going thru that again. I will keep an eye on him during the night and I guess we will have to see what happens in the morning. Tomorrow is his birthday party and then we have a training at the fire dept so I guess somewhere in all of that I will end up taking him to the hospital, better safe then sorry! Please send prayers that Hunter doesn't get pneumonia and that Ciara doesn't have anymore seizures.
Well, this week was a rough week for me. Several times I killed my back trying to pick up the kids and thankfully John had the weekend off so he was home and helped me a ton since I really wasn’t able to get up and do anything. But when Monday rolled around and he went back to work, it was just me to get the kids up and off to school and then get them out of their wheelchairs when they came home so that of course didn’t help my back at all. It is feeling a little better, but now I think I have a pinched nerve but things could be worse. This weekend we went out to lunch with Kim and Scotty which was wonderful. I haven’t seen them since Scotty started his Enzyme Replacement Therapy, he is such a funny little guy! You can visit Scotty’s website by clicking here SCOTTY'S JOURNAL. Yesterday Hunter had an appointment with the ortho to see about getting AFO braces for him to help him walk better. This is the doctor that I took him to two years ago to get him braces and the doctor told me there was nothing wrong with him and he didn’t want to see him back again. Of course I was flaming mad, is he blind? How could he not see anything wrong, Hunter’s little feet were turning inward and he was walking on his toes. Of course this doctor is the only pediatric ortho at Kaiser so I didn’t have much of a choice. Now, two years later this doctor tells me that is is too late to get the braces for Hunter because his ankles/ tendons are too tight and the braces wouldn’t help him and they might cause more damage then help because he is so tight and he is so skinny and his skin is thin so the braces will cause sores. Of course I wanted to strangle this man, if he would have listened to me years ago, we wouldn’t have this problem now. But, he did say that Hunter could use some therapy and make a referral to the therapy dept. I asked him if we did the therapy and loosened up Hunter’s feet, would he be able to get the braces and he said maybe so we decided to try the therapy and see how that goes. Although this doctor did say he would order the braces if we really wanted them. But I think we will try the therapy and if that goes well, we will go ahead with the braces. So, it was a sad and disappointing day but at least he is getting some therapy out of it. I was surprised when the therapy dept called me on the way home to set up an appointment for Hunter so he will start his therapy next Wednesday.
and ^^Angel^^
Wednesday, March 14, 2007 7:58 PM CDT
and ^^Angel^^
Wednesday, March 14, 2007 7:58 PM CDT
and ^^Angel^^ Wednesday, March 14, 2007 7:58 PM CDT
and ^^Angel^^ Wednesday, March 14, 2007 7:58 PM CDT
and ^^Angel^^ Saturday, March 10, 2007 2:08 PM CST
Well, Ciara is doing much better, thank God! Just as her pneumonia was getting better, she caught the dreadful cold that I had so she was just not doing well at all. It was nothing but suctioning her every few minutes so that she could breathe but I haven’t had to use the suction machine since Tuesday so that is great news. Hunter is over his cold too and I am feeling much better as well so I pray that we don’t catch anything else! Just a few days ago I started my Medical Transcription class so that will keep me busy for a long time but it’s something that I have to do. Since John will be applying for nursing school soon and when he gets accepted, he won’t be able to work anymore so that means that I will have to go back to work. But with the 4 hours in the morning that I can work and having to be able to leave anytime when the kids get sick, I don’t really see anybody hiring me so at least I can do the medical transcription from home. Plus if I work full-time I get benefits, sick-leave and vacation so that is perfect! I guess that’s is for now, I will post again soon and thank you all for checking in on us!
and ^^Angel^^
Saturday, March 10, 2007 2:08 PM CST
THIS WEEK’S JOURNAL:
Well, Ciara is doing much better, thank God! Just as her pneumonia was getting better, she caught the dreadful cold that I had so she was just not doing well at all. It was nothing but suctioning her every few minutes so that she could breathe but I haven’t had to use the suction machine since Tuesday so that is great news. Hunter is over his cold too and I am feeling much better as well so I pray that we don’t catch anything else! Just a few days ago I started my Medical Transcription class so that will keep me busy for a long time but it’s something that I have to do. Since John will be applying for nursing school soon and when he gets accepted, he won’t be able to work anymore so that means that I will have to go back to work. But with the 4 hours in the morning that I can work and having to be able to leave anytime when the kids get sick, I don’t really see anybody hiring me so at least I can do the medical transcription from home. Plus if I work full-time I get benefits, sick-leave and vacation so that is perfect! I guess that’s is for now, I will post again soon and thank you all for checking in on us!
and ^^Angel^^ Saturday, March 10, 2007 2:08 PM CST
THIS WEEK’S JOURNAL:
Well, Ciara is doing much better, thank God! Just as her pneumonia was getting better, she caught the dreadful cold that I had so she was just not doing well at all. It was nothing but suctioning her every few minutes so that she could breathe but I haven’t had to use the suction machine since Tuesday so that is great news. Hunter is over his cold too and I am feeling much better as well so I pray that we don’t catch anything else! Just a few days ago I started my Medical Transcription class so that will keep me busy for a long time but it’s something that I have to do. Since John will be applying for nursing school soon and when he gets accepted, he won’t be able to work anymore so that means that I will have to go back to work. But with the 4 hours in the morning that I can work and having to be able to leave anytime when the kids get sick, I don’t really see anybody hiring me so at least I can do the medical transcription from home. Plus if I work full-time I get benefits, sick-leave and vacation so that is perfect! I guess that’s is for now, I will post again soon and thank you all for checking in on us!
and ^^Angel^^ Monday, February 26, 2007 11:26 PM CST
THURSDAY 7:15 AM: Ciara still has a little fever every now and then but hopefully today we should see an improvement. The doctor called and said that the tests they ran were negative for flu so the antibiotics they gave Ciara should work for a bacterial pneumonia. Since she got pneumonia her little bottom is so red and sore, I think that is her biggest problem at the moment so I am changing her constantly to keep her as comfortable as possible. TUESDAY 2:00 PM UPDATE: We just got home from the hospital and Ciara does have pneumonia but thankfully we caught it early so we got to bring her home. She is on antibiotics and steroids and we are waiting for some test results which we should have in a couple of days which will tell us if we are on the right antibiotic. So hopefully we are on the right path and she will not get any worse. Thank you all for checking in!
I am so sorry I haven’t updated for a couple of weeks. Things had been going smoothly around here until a couple of days ago. Saturday Ciara slept most of the day so that started me worrying which didn’t help the anxiety attacks I have been having lately. Then yesterday I got sick and had the aches so bad I wanted to cry. I was laying in the recliner and Ciara was in the recliner next to me when all of a sudden she started kicking and rolling back and forth. I jumped up and thought she was having a seizure, which I think she was having some sort of seizure-like activity, but her index finger was in her mouth. I tried to get her finger out but she was biting it so hard that I had a rough time but I finally got it pulled out of her mouth and there was blood everywhere. I thought she had bit the tip of her finger off, but she didn’t, just a bad gash, poor baby. After that she seemed fine so I sent her to school today. Of course school called and said that she had a seizure-like episode but not her normal seizure but she was OK and they kept her at school. She seemed OK when the bus brought her home so around 5:30 I hooked her up to her feeding pump and then when I went to unhook her I noticed that she had a fever and her lips were pursed so of course now I am afraid that she might have pneumonia again. John had listened to her lungs last night and said that she they sounded alright but she was a little wheezy. So I just gave her a breathing treatment, did PT on her back and gave her some Tylenol Cold. It is now 9:15 PM and she has cooled down some but is still a little warm. Of course I still feel like crap but I am just praying that Hunter doesn’t catch anything from us, that’s all I need. I guess I will just keep an eye on Ciara tonight and see what happens in the morning.
and ^^Angel^^
Monday, February 26, 2007 11:26 PM CST
I am so sorry I haven’t updated for a couple of weeks. Things had been going smoothly around here until a couple of days ago. Saturday Ciara slept most of the day so that started me worrying which didn’t help the anxiety attacks I have been having lately. Then yesterday I got sick and had the aches so bad I wanted to cry. I was laying in the recliner and Ciara was in the recliner next to me when all of a sudden she started kicking and rolling back and forth. I jumped up and thought she was having a seizure, which I think she was having some sort of seizure-like activity, but her index finger was in her mouth. I tried to get her finger out but she was biting it so hard that I had a rough time but I finally got it pulled out of her mouth and there was blood everywhere. I thought she had bit the tip of her finger off, but she didn’t, just a bad gash, poor baby. After that she seemed fine so I sent her to school today. Of course school called and said that she had a seizure-like episode but not her normal seizure but she was OK and they kept her at school. She seemed OK when the bus brought her home so around 5:30 I hooked her up to her feeding pump and then when I went to unhook her I noticed that she had a fever and her lips were pursed so of course now I am afraid that she might have pneumonia again. John had listened to her lungs last night and said that she they sounded alright but she was a little wheezy. So I just gave her a breathing treatment, did PT on her back and gave her some Tylenol Cold. It is now 9:15 PM and she has cooled down some but is still a little warm. Of course I still feel like crap but I am just praying that Hunter doesn’t catch anything from us, that’s all I need. I guess I will just keep an eye on Ciara tonight and see what happens in the morning.
and ^^Angel^^ Sunday, February 11, 2007 3:22 AM CST
Hello everybody! Again, this past week hasn't been very exciting around here and we like that! The only thing that I can complain about is Hunter is still having trouble with diarrhea every now and then. This is something new for him and it has been going on for the past month, since he had pneumonia so I am not sure what the problem is. Yesterday I stopped giving him fruit juice and he hasn't gone at all today so I guess we will see what happens tomorrow. We took the kids to their cousin's birthday party today and they both had a good time. Of course Hunter was in heaven, there was pizza and chocolate cake! As soon as we put Ciara in the car to go home she started chattering away and kept "talking" all night long. It was so funny, she was laughing, talking, and rocking herself so hard I thought she was going to flip herself out of the recliner, but she was having a great time. I love moments that like!
and ^^Angel^^
Sunday, February 11, 2007 3:22 AM CST
Hello everybody! Again, this past week hasn't been very exciting around here and we like that! The only thing that I can complain about is Hunter is still having trouble with diarrhea every now and then. This is something new for him and it has been going on for the past month, since he had pneumonia so I am not sure what the problem is. Yesterday I stopped giving him fruit juice and he hasn't gone at all today so I guess we will see what happens tomorrow. We took the kids to their cousin's birthday party today and they both had a good time. Of course Hunter was in heaven, there was pizza and chocolate cake! As soon as we put Ciara in the car to go home she started chattering away and kept "talking" all night long. It was so funny, she was laughing, talking, and rocking herself so hard I thought she was going to flip herself out of the recliner, but she was having a great time. I love moments that like!
and ^^Angel^^
Thursday, February 1, 2007 5:29 PM CST
If anybody is interested in helping raise some money to get Hunter his braces, you can click here and then click where it says "Contribute", thanks! www.helpachild.net
and ^^Angel^^ 
Wednesday, January 24, 2007 11:08 PM CST
I am so sorry that I haven’t updated sooner, my mind has been busy elsewhere. Ciara and Hunter are over their pneumonias, thank God, and for the most part are doing good. They both still have guck in their throats so they are coughing a lot and I have the same problem. I have tried cold and allergy meds and nothing seems to work darn it. School called and said that Ciara had a seizure around 1:30 today but since then she has been fine so that is good news. John started back to school last week but unfortunately some plants closed so he has only been working a couple days a week so he has been home a lot lately. We haven’t really been doing much of anything but Alyssa came to town one day so I met up with her and my sister and Mason came with us and we grabbed a pizza, it was fun. We have spent that last couple of weekends at the fire department putting up insulation but we should finish that this weekend and then we will be ready to watch the super bowl in a couple of weeks! Ciara and Hunter will be going to a birthday party on Saturday so I know we will have a good time. Well, I guess that is it for now, I don’t want to get into too much but that is the basics of what has been going on. I know I haven’t updated the photos since September so I just put up all new pictures so go check them out!
Hugs To All, and ^^Angel^^
Friday, January 5, 2007 7:38 AM CST
THURSDAY 8:30 AM UPDATE: Hooray!!! Ciara and Hunter BOTH went to school this morning!!! I did send Ciara yesterday but I kept Hunter home one more day. John was home from work by 9:30 in the morning so we took Hunter out to lunch since we had received a gift certificate to our favorite mexican restaurant. Hunter was so happy to be out of the house, he just sat in the chair next to me, swinging his feet and grinning, it was so cute! He woke up this morning with a grin so I know that he is feeling much better, finally! Of course last night I started getting sick again, and I wasn't completely over the last cold darn it! Oh well, at least I can get out of the house today and feel human again!
red> SUNDAY 4:55 AM UPDATE: Poor Ciara had a huge seizure at 2:15 this morning and then was breathing strange so I was worried about her. After the seizure she was a limp as a rag doll and she sounded like she had a lot of gunk in her throat but did not have any energy to cough and get it out so I was afraid that she would choke on it or something. I turned her on her side and eventually her breathing evened out and I went to sleep. I woke up again at 4:55 when I heard her having another seizure but this one wasn't as bad as the last one and she went right to sleep. Please pray that she doesn't have any more, poor little thing! Hunter seems to be doing a little better also, but the doctor said that he might get worse in a couple days so I am keeping a very good eye on him too!FRIDAY 3:30 PM UPDATE: We took Hunter to the hospital and he does have pneumonia but we caught it early so the doctor put him on antibiotics and steroids like Ciara had a couple of weeks ago and breathing treatments every 4 hours. For those of you who know Hunter, you know that he is a handful of spunk so this morning when he couldn't stay awake, sit up, or hold his sippy cup, I was worried. But right now he is sitting at the kitchen table having a snack and watching Madagascar so I hope that the rest of the day goes as well. Thank you all for the prayers and keep checking back to see how he is doing! Hugs!
Hello everybody and I hope you all had a wonderful New Year's! Not much has been happening here since Ciara had been sick. She is doing better but it is cold and wet here so I haven't taken the kids anywhere for about three weeks now and I think we are all going stir crazy! This past week Hunter has done a lot of crying and I wasn't sure why. I tried everything and nothing seemed to make him happy. A couple of days ago I ran to the store and bought some Beano drops and put them in his juice and since then he seems happier. Unfortantely though, I think he might has pneumonia. His breathing seems faster and he has a horrible cough. John was doing an over-night haul so when he came home last night I had him listen to Hunter's lungs and he said that they sound gucky so I am going to take Hunter to the hospital today and hopefully they will give us some antibiotics and send us home, I don't want to be admitted again! Of course when he told me that he thought Hunter might have pneumonia I started crying and shaking. I think that I have finally reached my limit, I am only be strong for so long and now every little cough or sniffle sends me crying. I just hate that these little ones have to go thru all of this, they don't know what's going on, I wish that I could be sick for them and they could run and play. But before I start crying again, I am going to get going. Please say a prayer that Hunter doesn't get admitted and I will post an update later today.
Thanks!
and ^^Angel^^
Sunday, December 31, 2006 2:24 AM CST
Just a quick little update since nothing much has been going on here this week. We had a great Christmas since Ciara has been feeling much better. My mom, sister, and Mason came over Christmas morning and we opened presents, then we were off to Sacramento to John’s sister’s house. My mom came with us and Alyssa met us there so we opened presents and had dinner and it was wonderful. Then I got sick and slept for almost two days straight, thankfully John was home so he took care of the kids while I rested, apparently I needed it! Tomorrow is New Year’s Eve and we will all be going to some friends’ house for the evening so I am really looking forward to that. The kids and I are also meeting Alyssa in the afternoon to go bowling so that will be a lot of fun too! Thank you all for continuing to check in on us all these years, you are all the best! HUGS!!!
MAY GOD MAKE YOUR YEAR A HAPPY ONE! 
and ^^Angel^^
Monday, December 25, 2006 10:09 AM CST
Today I am just going to do a quick little update. I took Ciara to the hospital on Friday for a follow-up and the doctor was thrilled to see how good she was doing. Her pulse ox was 98 and he said that her lungs sounded better, not good, but a lot better with no more wheezing and crackling like a couple days before. When we were finished the doctor even helped me push the kids’ wheelchairs all the way out of the hospital and to our car, I just love Dr. Hamann! Ciara is still doing well so thank you all for your prayers!
and ^^Angel^^
Tuesday, December 19, 2006 8:36 AM CST
WEDNESDAY 8:30 PM UPDATE: Well, I wasn't sure if we were going to be able to come home today because until around 11:30 this morning, Ciara's SATs weren't looking too good. Yesterday she was on 9 liters of O2 and by this morning she was only on 1 liter but her pulse ox was hanging around 90-92 and they wouldn't let us go home like that. Around 11:45 I took her oxygen off to suction her nose and brush her teeth and her pulse ox stayed around 96 o I decided to leave it off and see how she did. After about 15 minutes she was still doing great so I told the nurse that I took her O2 off. After about an hour the doctor came in and I told him what I did and she was still doing great so I told him we wanted to take her home. They weren't doing anything there that I couldn't do at home. He said that he would watch her for another hour and see how she did and then hopefully we could go home. Well, she did great and we were discharged around 2:00 but after I got her dressed, we couldn't find her wheelchair which was in the hallway last night. John and I weren't happy so everybody was searching for it and found it in another patient's room. So, John took Ciara out to the car and I went to the pharmacy to pick up all of her new meds which were called in 3 hours before I got there. Of course they weren't ready so they told me to wait about 10-15 minutes and they would be done. I waited 25 minutes and didn't hear anything so I waited in line to ask them if they were done. Apparently they didn't even know that I had been there earlier so I had to wait again! I was not happy! So I finally got all her meds and we went home. This evening Ciara has been "talking" a lot, she is so cute! Her nose is very fully of guck so I have been suctioning her nose and mouth like crazy but she has been coughing up some guck so that is good. I have to take her back to Kaiser on Friday for a check-up so hopefully nothing happens between now and then! Thank you all for checking in and for the prayers!
UPDATE TUESDAY 6:00PM: I just got back from the hospital. Ciara is now admitted on the pediatrics wards. She does have
pneumonia, but she is also having asthma. Her lungs sound very crackly. When she breathes you can hear everything moving around. Her pulse ox off oxygen has been jumping around all day from the lower 80's to 90's. So for now they are going to give her steriods, breathing treatments and oxygen. There is one other med, but I forgot...sorry Alicia!! Hopefully with all of these treatments it will clear everything up and she can go home soon. Please pray for a quick recovery!!!! If John stays the night then im sure Alicia will update again later tonight. Thanks for all of your prayers....Alyssa 
TUESDAY 11:18AM UPDATE: Ok looks like she is being admitted. Her pulse ox is hanging pretty low without breathing treatments....I am going to the hospital now to be with her and Alicia...I will update more when I come home
TUESDAY 10:45AM UPDATE: Hey Alyssa here. Alicia called me and Ciara is back at the hospital. They might be admitting her because she is wheezing and her pulse ox is at 92. They are giving her breathing treatments right now to try and get her breathing better. I will update again when I know if she will be able to come home or not. Pray pray pray!!!
and ^^Angel^^
Tuesday, December 12, 2006 3:20 PM CST
WEDNESDAY 8:30 PM UPDATE: Well, I wasn't sure if we were going to be able to come home today because until around 11:30 this morning, Ciara's SATs weren't looking too good. Yesterday she was on 9 liters of O2 and by this morning she was only on 1 liter but her pulse ox was hanging around 90-92 and they wouldn't let us go home like that. Around 11:45 I took her oxygen off to suction her nose and brush her teeth and her pulse ox stayed around 96 o I decided to leave it off and see how she did. After about 15 minutes she was still doing great so I told the nurse that I took her O2 off. After about an hour the doctor came in and I told him what I did and she was still doing great so I told him we wanted to take her home. They weren't doing anything there that I couldn't do at home. He said that he would watch her for another hour and see how she did and then hopefully we could go home. Well, she did great and we were discharged around 2:00 but after I got her dressed, we couldn't find her wheelchair which was in the hallway last night. John and I weren't happy so everybody was searching for it and found it in another patient's room. So, John took Ciara out to the car and I went to the pharmacy to pick up all of her new meds which were called in 3 hours before I got there. Of course they weren't ready so they told me to wait about 10-15 minutes and they would be done. I waited 25 minutes and didn't hear anything so I waited in line to ask them if they were done. Apparently they didn't even know that I had been there earlier so I had to wait again! I was not happy! So I finally got all her meds and we went home. This evening Ciara has been "talking" a lot, she is so cute! Her nose is very fully of guck so I have been suctioning her nose and mouth like crazy but she has been coughing up some guck so that is good. I have to take her back to Kaiser on Friday for a check-up so hopefully nothing happens between now and then! Thank you all for checking in and for the prayers! UPDATE TUESDAY 6:00PM: I just got back from the hospital. Ciara is now admitted on the pediatrics wards. She does have
pneumonia, but she is also having asthma. Her lungs sound very crackly. When she breathes you can hear everything moving around. Her pulse ox off oxygen has been jumping around all day from the lower 80's to 90's. So for now they are going to give her steriods, breathing treatments and oxygen. There is one other med, but I forgot...sorry Alicia!! Hopefully with all of these treatments it will clear everything up and she can go home soon. Please pray for a quick recovery!!!! If John stays the night then im sure Alicia will update again later tonight. Thanks for all of your prayers....Alyssa TUESDAY 11:18AM UPDATE: Ok looks like she is being admitted. Her pulse ox is hanging pretty low without breathing treatments....I am going to the hospital now to be with her and Alicia...I will update more when I come home TUESDAY 10:45AM UPDATE: Hey Alyssa here. Alicia called me and Ciara is back at the hospital. They might be admitting her because she is wheezing and her pulse ox is at 92. They are giving her breathing treatments right now to try and get her breathing better. I will update again when I know if she will be able to come home or not. Pray pray pray!!! TUESDAY 7:15AM UPDATE: I took Ciara to her GI doctor because I wanted them to look at her feeding tube to make sure it was working OK. She has had some leakage around it for the past few days and she has been screaming for a few days so I just wanted them to look at it and let me know that it was OK, and it was. They said that because she has been coughing, that the coughing causes the leakage so not to worry about it so that is one thing we ruled out. They also gave us a prescription for Miralax to help her go to the bathroom easier so that will be great. I had them listem to her lungs and they heard squeaks and wheezing that concerned them so they send us to another Kaiser to the Urgent Care. We got to the Kaiser fast but it took me forever to find the Urgent Care, people kept telling me the wrong floor, etc. So by the time we got there I wasn't happy because I was pushing two wheelchairs all over the hospital and in and out of elevators and Ciara was not happy. So, we finally get there and see the doctor who I really liked. She sent us for an x-ray and then we went back upstairs, but of course I forgot my purse in the xray room so I had to push the kids back there and then go back up to the Urgent Care. The xrays showed that she now has pneumonia in both her lungs so the doctor changed her antibiotic and gave her a breathing treatment. Hunter was getting cranky because when he came home from school I just put him right in the car so he didn't get his snack and nap. The nurse got him some apple juice and crackers and he was happy. The doctor also said that on her xrays they saw a lot of gas so that would explain why she has been screaming for a couple of days. After Ciara's treatment we got to go home but had to make a stop at the pharmacy for her antibiotics and they sent us home with an inhaler for her. I stopped and got Hunter a cheeseburger on the way home so that kept him quiet. When we got home I fed Ciara and gave her all of her meds and I asked John to get up the inhaler for me. Of course the stupid pharmacy forgot to give me the mask that attaches to the inhaler so I am not sure how this is going to work. I have to take Ciara back to Kaiser at 9:30 this morning for them to look at her again so I will get a mask while we are there and pray that they don't want to admit her. MONDAY 11:30 AM UPDATE: I had to pick Ciara up at school again today because she wouldn't stop crying. They said that she had two bouts of diarrhea and her breathing sounded junky so I have an appointment at 4:00 this afternoon at Kaiser. I pray that they don't admit her! I will update when/if we get back home.
HAPPY BIRTHDAY ALYSSA! THURSDAY 1:00 PM UPDATE: Ciara is still fever and seizure free, hooray! She is still having a hard time coughing up the guck from her lungs but hopefully the worst is over. Thank you all so much for the prayers, but keep them up! Thanks! WEDNESDAY 7:30 AM UPDATE: Ciara still has a fever and she had four seizures during the night but right now she is looking a little better, she isn't as pale as she was and she grinned at me when I carried her out to the living room so hopefully that is a good sign! TUESDAY 6:50 PM UPDATE: Well, I just had to leave the fire dept christmas party because I am having a break-down. Ciara had another seizure at 4:30 and it was a huge one. She still has a fever but John just came home with her antibiotics. She started breathing weird and it scared me, then we went to the party and we were there only 5 minutes and I had to leave, in fact John doesn't know I left yet so I better get back there. I am just so scared that she will end up in the hospital or worse. I know most of it is because of what I went thru with Tommy and going back into a hospital scares me and brings back all of those memories and I don't think I can handle that again. Anyway, I just had to get that out and now I am back to the party, all puffy eyed and swollen! TUESDAY 4:30 PM UPDATE: Ciara just had another huge seizure so that makes #4 since 1:30 this afternoon. I had given her some Tylenol so her fever is down but not sure what is going on with the seizures. I called John at school and told him to come right home so he is on his way. I will update again if something else happens. Please pray for no more seizures and for the pneumonia to clear up fast!
and ^^Angel^^
Saturday, November 25, 2006 12:10 AM CST
SATURDAY UPDATE: I am so sorry I haven't updated for a while but thank you all for the emails! Everybody here is fine, we have just been very busy. I have been spending a lot of time at the fire dept lately and John is still working and going to school. I am working on a huge project right now but I will be done hopefully tomorrow with it. I will try to post an update and pictures tomorrow!
and ^^Angel^^ 
Wednesday, November 22, 2006 2:08 PM CST
THANKSGIVING PRAYER
I'm thankful this Thanksgiving
That my grief is not so new.
Last year it was so painful
To think of losing you.
Death can't claim my love for you
Tho we are far apart,
Sweet memories will always be
Engraved upon my heart.
Time can never bring you back
But it can help me be
Thankful for the years of joy
You brought our family.
To all the parents with grief so new
I share your loss and sorrow.
I pray you find with faith and time
The blessings of each tomorrow.
After two years of waiting, Ciara’s bath chair is FINALLY being delivered this afternoon, I am so happy! It is so hard for me to give her a bath because she doesn’t sit up and I can’t hold her and wash her without her going underwater so this will be wonderful! and ^^Angel^^ 
Saturday, November 11, 2006 9:15 AM CST
THIS WEEK’S JOURNAL:
Ciara and Hunter have been doing very well this past week. Hunter has been a little sleepy, but they are both happy which makes my days so much better! So I guess I will start back on Halloween. In the morning I went to the school for their Halloween party and I brought a cake. The kids wore their costumes, Ciara was a leopard and Hunter was a little devil, what else would he be LOL. We had a good time and Ciara inhaled her chocolate cake, that girl has always loved her chocolate! John went to school so I was going to take the kids trick or treating with some friends, but I wasn’t feeling well so we didn’t go. For a few days I had a horrible headache and chest pains so I didn’t feel like doing anything. On Wednesday I went to the grocery store and while I was there I took my blood pressure in that machine thing and it was 159/107, no wonder I felt like crap! I used to be on high blood pressure meds when we were fighting Kaiser for Tommy’s transplant and then during the transplants, but since we have been home and for the past three years I haven’t been on anything but I think it is time to start that up again. I called and made an appointment for Friday morning and the doctor gave me a prescription and I have been much better since then. Tuesday night I took the kids to the fire dept dinner so that was fun. The kids were out of school on Friday for Veteran’s Day so I took them to Sacramento to get their flu shots. When they poked Ciara she got a terribly sad, crying face but didn’t make a sound, poor thing. Then it was Hunter’s turn and he was already angry when we got there so by the time it was our turn, full blown rage! I was holding him while he was in his wheelchair and they poked him, he FREAKED, the needle fell out, blood everywhere and a screaming Hunter had everybody in the lobby staring at us. So, they had to call somebody else over to help me hold him down and they tried again and this time he got the shot but boy was he mad! Everybody in line with their kids just stared at us as I pushed the wheelchairs out the door, I think we scared all those kids, LOL. When we got home I fed them and relaxed for a couple hours, then Mason called and needed a ride to the football game so I put the kids in the car and took him there and then we went back home for a quiet night. Hunter woke up at 4:00 this morning crying so I brought him out to the living room and he fell asleep in the recliner, but I couldn’t get back to sleep darn it. Ciara had a big seizure at 6:20 but since then has been laughing and smiling and being silly, she is just too cute! Well, I guess that was our week! Since John is going to school and not working as much, money has been a BIG issue lately and we have no idea what to do about it. Last year we received a large donation from a wonderful man which lasted for most of the past year and I don’t know what we would have done without it and I must thank him again, he was an angel! But I have been looking into options and I think the only thing that will work for us is me going back to school to get my medical transcription cert. Since I worked in the emergency room for 14 years and then did billing and data processing for two years there, I think it should be fairly easy since I know all of the medical stuff and I can type like the wind. It’s just finding the money to pay for the class that’s the problem. But that is where we are now, take care and see you later!
Hugs To All, and ^^Angel^^
Tuesday, October 31, 2006 1:22 AM CST
and ^^Angel^^
Tuesday, October 31, 2006 1:22 AM CST
and ^^Angel^^
Tuesday, October 24, 2006 11:43 AM CDT
THIS WEEK’S JOURNAL:
The kids went back to school last week so that made me happy! The week before they were out of school and then they were sick so we didn’t leave the house much so we were all happy when they went back to school. Ciara and Hunter had a great week, they were happy but still have a little cough left over but they are doing good. Monday the kids and I went to school with John so that his teacher could look at the kids, especially Hunter. The teacher is an orthopedist and we wanted him to look at Hunter’s feet because I have been telling Kaiser for two years that he needs braces but they say there is nothing wrong with him. Umm, hello! His feet are crooked, he walks on his tip toes and because of that he falls all the time and now needs help to walk when braces would have helped him two years ago. Kaiser makes me so mad! The teacher agreed with me that he needs braces and would benefit greatly from them so if I don’t hear anything from Kaiser soon, I think we are going to take him to Shriner’s. On Friday John went to work early in the morning and around 9:30 I packed up the car and the kids and we were off to Los Angeles which was about a 7 hour drive. I drove to Bakersfield which was about 5 hours and met John there and then we drove together the rest of the way. We were just coming down the Grapevine when John thought he saw Tom, Scotty’s dad, but I had just talked to Kim and they were about 10-15 minutes behind us so I thought “No that couldn’t be him.” But then I looked again and boy, it sure looked like Tom so I called Kim and asked her if Tom was driving and she said yes, I said “Is he with you?” and she said “No” so I said “Is he driving a red Mustang?” and sure enough he was. So by this time he was right next to us so I was hanging out the window waving and yelling and he didn’t even see me, it was funny. We got to the hotel and let the kids relax and stretch out for a little while and then we went to dinner. When we got back to the hotel we went over to Kim’s room to visit with them and then Kris and Devon had flown in from Oregon so we chatted for a little bit but then it was time to get to bed. We got up around 6:00 and fed the kids, packed up and gave everybody a bath and headed to the MPS run around 8:00. After we signed in we got to visit with some friends and then it was time to start so we all lined up and we were off! Ciara was a little fussy but Hunter was having fun. After the run all the MPS kids were awarded a medal of courage and they even had one for Tommy so I am going to bring it to him at the cemetery. After all the runners left it was time for the MPS picnic which was catered and very yummy! Sammi, thank you for bringing Ciara some chocolate pudding, she loved it! After lunch it was time for the butterfly release which was awesome! We stayed long enough this time to be in the group photo but by now it was 12:30 and we really had to get on the road so we left. John drove us back to Bakersfield where his rig was parked and then he went back to work and the kids and I drove home and we finally go there around 7:00 PM. Ciara was very happy to be back in her comfy recliner and Hunter was happy to have his cartoons back and to bounce around the bedroom. I fell asleep for a couple of hours not long after we got home and then after I got the kids fed, changed and off to bed I couldn’t get back to sleep until 3:00 am. John didn’t get home until late Sunday morning and then he went up to his dad’s to get our dog and visit for a while. The kids and I just stayed home and didn’t do much of anything, I was still exhausted! 
I have finally got some pictures from the MPS run together so you can view them by clicking here: MPS Run Pictures
Hugs To All, and ^^Angel^^
Saturday, October 7, 2006 10:13 AM CDT
THURSDAY UPDATE: I just wanted to thank you all for checking in on us. I will update the journal on Sunday when we get back from Los Angeles and the MPS Run.
THIS WEEK’S JOURNAL:
I guess I will start off with last weekend, if I can remember that far back! The kids and I didn’t do much, we just stayed home, relaxed, and watched movies. John had worked an overnight Friday and didn’t get home until Saturday evening. On Sunday he went hunting with his cousin but they didn’t even see a one deer, which is fine with me. The kids went to school Monday and were very happy. I have heard the people at school and the bus drivers comment on how much better Ciara and Hunter are this year compared to last year. They said that they are both happier and more calm and content so that makes me happy to hear. I notice things with them, but it’s nice to hear it from other people, sometimes I wonder if I am just seeing things, you know, wishful thinking. Wednesday morning Hunter woke up and the right side of his face was twice it’s normal size and the drool coming out was a little pink so I kept him home from school. As soon as Ciara left on the bus, Hunter fell asleep again and didn’t wake up until almost 11:00, when I made him get up. Thankfully his face looked 70 etter so I was wondering if maybe he bit his cheek because that was the only thing I could see that was swollen, but I couldn’t get a good look in his mouth without putting my fingers in and no way was I going to do that! He was eating and drinking fine so whatever it was didn’t seem to bother him. Early Thursday morning, around 3:00, I think Ciara might have had a seizure because I woke up when I heard her breathing funny, but she wasn’t seizing so I don’t know if I missed it or if it was just a weird seizure-type episode. So, just to play it safe I kept both kids home from school which was OK because the school gets out at noon for the rest of the week and it was raining so it wasn’t a big deal. Ciara was very fussy and cried a lot today but it was because she was having trouble going potty. She did go about 3 times today and was screaming until around 1:00 this morning before she finally fell asleep. When she woke up she had a big BM and was still “going” when I put her on the bus. Apparently she had two more at school but she came home a very happy girl, poor little thing. As for me, I am doing better. Last weekend the left side of my face started hurting so bad and it lasted until about Wednesday. John said it was the nerve endings starting to feel again now that my face wasn’t numb. Wednesday I could move the corner of my mouth a little bit and I am talking better but my face is still paralyzed and I can’t really close my eye yet but at least I am getting better, slowly but surely. Thank you all for everything!
and ^^Angel^^
Thursday, September 28, 2006 10:59 PM CDT
Last Friday morning started off with getting Ciara and Hunter off to school and then I had to leave right after that for my doctor’s appointment in Sacramento. I do have Bell’s Palsy and the doctor gave me a bunch of pills, I have to take antibiotics, antivirals, and steroids so that is a total of 14 pills a day, yuck! But the good news is that my blood pressure was 112/79 which is the lowest it has ever been and I have lost 20 lbs so far because I have been working out on the Bow Flex for the past month. So, low blood pressure, weight loss, and I didn’t have a stroke, all in all I would say that it was a good day. Friday night I had a dream about Tommy, a very strange dream, but it is only the second dream that I have had of him since he passed away and the best part was that I got to hold him again. Today is also John’s birthday but he is doing an overnight haul so we won’t get to see him until tomorrow. Saturday morning the kids, my sister, Mason and I went to Lodi to get Mason some clothes for the high school homecoming dance tonight. He is so excited because he has a date and they are going out to dinner before the dance and we got him an awesome outfit for tonight. I told him he better email me a picture! John got home in the afternoon but left right away to go hunting with his cousin so he won’t be home until late tonight. Ciara and Hunter are still doing great so nothing new to report with them, thank God! On Sunday we went to Lake Tahoe to meet the Professor from Poland who is doing the Genistein (Soy) study. He was here for a conference so we figured this would be our only chance to meet him so we took a drive. He was wonderful and we really had a great time. Of course I didn’t understand everything that he was talking about, but John did since he is into microbiology and all that sort of stuff so he had a great time talking to the Professor. As for the rest of the week, the pills that they have me taking are really doing a number on me, I sleep all day then get up to get the kids off the bus in the afternoon and then right back to sleep. Thankfully John has been home in the afternoons to take care of the kids until he goes to school and Ciara and Hunter have been wonderful this week once he leaves so I have had plenty of rest. Ciara did have a seizure Tuesday morning at 3:30 so I kept her home from school just in case she had more, but she didn’t and she had a very good day. Wednesday I got to lower my steroid dose so I have been feeling much better the past couple of days, not nauseated and tired, so that has been wonderful. I actually took myself out to breakfast Wednesday morning and did some grocery shopping. It is the first time I have gone out since I got Bell’s Palsy because my face is lopsided and I can’t talk well so I just haven’t felt like going out but now I am up to it. I have gone to the fire dept a few times because at least I can laugh about it with everybody there. Well, I guess that is about it for now, I will try to update again in a few days. Don't forget to check out the pictures below!
Hugs To All, and ^^Angel^^ 
US WITH THE PROFESSOR
MASON AND HIS HOMECOMING DATES
THIS IS OUR GROUP CELEBRATING TOMMY'S BIRTHDAY!
Friday, September 22, 2006 9:13 AM CDT
and ^^Angel^^
Sunday, September 17, 2006 2:18 PM CDT
You can make a donation in memory of Tommy's birthday to the National MPS Society on-line at their website which is www.mpssociety.org or you can mail your donation to this address and just put In Memory Of Tommy Bennett: and ^^Angel^^ 
Sunday, September 17, 2006 2:18 PM CDT
You can make a donation in memory of Tommy's birthday to the National MPS Society on-line at their website which is www.mpssociety.org or you can mail your donation to this address and just put In Memory Of Tommy Bennett: and ^^Angel^^ Sunday, September 17, 2006 2:18 PM CDT
Not much to report for the past couple of weeks. Ciara did have a couple of seizures this week but she is doing great. Ciara and Hunter had an appointment with their Geneticist on Friday and that went well also. He said that Ciara’s joints are stiff and we need to work on loosening her up, but he was pleasantly surprised at how flexable Hunter is which I know if because of the Genistein that they have been on for over a year. We are also being referred to the Ortho to see about getting braces for Hunter to help him walk better. Last time we saw that Ortho doctor he said that he didn’t need to see Hunter back again so I am ready to fight when we go there. A few weeks ago I finally got my hair cut, I hadn’t gotten it cut since Tommy passed away so it had been almost three years and BOY did it need it! Since then I have been working out a little and I weighed myself and I have lost 8 lbs so far so I was pretty happy. I think that I have finally reached that point where I can start to move on at little bit. I still miss my little Tom Tom terribly, but after three years I am starting to feel alive again inside. I had totally let myself go and now it is time to get back to the real world and I feel pretty good these days. I guess that is about it other then John and I are actually going out on a date tonight, WITHOUT kids! That hasn’t happened for about 4 years so we are pretty happy. We are going to the casino to see Tim Conway and Harvey Korman, we just love them! My sister works at the casino and got us free tickets in the 3rd row and the tickets cost $79 each so that was great!
You can make a donation in memory of Tommy's birthday to the National MPS Society on-line at their website which is www.mpssociety.org or you can mail your donation to this address and just put In Memory Of Tommy Bennett: and ^^Angel^^ Monday, September 11, 2006 2:48 AM CDT
THURSDAY 8:30 AM UPDATE: Ciara woke me up at 4:30 this morning when she was having a seizure, but it wasn't a big one and she went back to sleep. She was looking great this morning so I sent her off to school and around 8:15 the school called and said that she just had another seizure, a fairly big one. She didn't stop breathing this time and seems to be doing fine so she will stay at school unless she has another one. I will update our journal tomorrow evening because the kids have a doctor's appointment in the morning.
TWO THOUSAND ONE, NINE ELEVEN 
and ^^Angel^^ 
Monday, September 11, 2006 2:48 AM CDT
TWO THOUSAND ONE, NINE ELEVEN 
and ^^Angel^^ 
Monday, September 11, 2006 2:48 AM CDT
TWO THOUSAND ONE, NINE ELEVEN and ^^Angel^^ Saturday, September 2, 2006 7:58 PM CDT
FRIDAY 7:00 AM UPDATE: Everybody is doing great, but I just wanted to let you all know that I will probably not have time to update until Monday evening. If you have been trying to get a hold of me, I haven't been home much the past couple of weeks, especially this week because we are planning our Sept 11 ceremony for the fire dept and I have spent every minute there this week. After the ceremony on Monday I will have time again to do everything else so please check back again in a few days and hopefully I will have some new pictures too! THANKS! SUNDAY UPDATE: At 4:00 this morning I heard weird noises to I got up and saw Ciara having a seizure, not a very bad one though. When it was over she went back to sleep and so did I. Then again at 4:30 she woke me up again and was having a big seizure. It is now 7:45 and she hasn't had anymore so hopefully that will be it for the day. Hmm, as I am typing this I just realized that she had her seizure the exact time that Bryan became an angel, interesting!
It is with such a sad heart that I have to tell you all this. Bryan became an angel at 1:00 this morning. You can visit his journal and leave a message for him and his mother, Carolynne, the link is at the bottom of this journal entry.
Please pray for Bryan and his family. Here is the email that his mom, Carolynne sent out yesterday:
Just want to let you all know that Bryan is in Dartmouth again - multiple organ failure - possible septic shock again - kidneys are not functioning - doctors are guessing 12-36 hours. 
You can visit his journal by clicking here: BRYAN'S JOURNAL Carolynne hasn't updated for a while, but you can leave a message in their guestbook. I know how much it meant to me to hear from everybody after Tommy passed away so please, just take a moment to let her know that you are praying for them. Thanks! and ^^Angel^^ 
Tuesday, August 29, 2006 9:33 AM CDT
Please pray for Bryan and his family. Here is the email that his mom, Carolynne sent out: Just want to let you all know that Bryan is in Dartmouth again - multiple organ failure - possible septic shock again - kidneys are not functioning - doctors are guessing 12-36 hours. You can visit his journal by clicking here: BRYAN'S JOURNAL Carolynne hasn't updated for a while, but you can leave a message in their guestbook. I know how much it meant to me to hear from everybody after Tommy passed away so please, just take a moment to let her know that you are praying for them. Thanks!
and ^^Angel^^ 
Tuesday, August 29, 2006 9:33 AM CDT
and ^^Angel^^ 
Wednesday, August 23, 2006 1:26 PM CDT
THIS WEEK’S JOURNAL:
Not much to report for this past week. Ciara and Hunter started school last Monday and they have really been enjoying it. Hunter is smiling when I put him on the bus in the morning and yesterday the bus driver said that Ciara was smiling on the ride home, she said that Ciara has a beautiful smile and I must agree! We don’t get to see it very often, but she has been smiling more lately so that is wonderful! The teachers noticed that Hunter is moving around the classroom and going after things that he wants, just like he has been doing at home so he is keeping them on their toes too. Since starting a few new supplements a couple of months ago we have noticed changes in the kids, mostly in Hunter. He is thinking and doing things again, he knows what he wants and he does it and that is wonderful to see again. Ciara has been more alert and focusing on things and people and that is awesome! Alyssa finally moved here last Monday so since John was working, I took the kids to Sacramento, where Alyssa lives, and we went out to dinner with her and Ben and we had a great time. She said that she was surprised at how quiet and calm the kids were, especially Hunter, because when she saw them last it was 2 ½ years ago and Hunter was in the wild and crazy stage where he was biting, hitting, and throwing things with lots of screaming, so this was a big change since she had seen them last. On Sunday Alyssa and Ben drove here to visit Tommy at the cemetery and then John went up to his dad’s to watch the football game and Ben, Alyssa, the kids and myself went out of goofed off for a while. Around 5:00 they headed back to Sacramento and I took the kids home and fed them and we just relaxed for the rest of the evening. John started back to school on Monday and he is very happy because he got all the classes that he wanted, English, Microbiology, Anatomy and Physiology so between school and work, I don’t think we will be seeing much of his this semester. Well, I guess that is it for now so check back in again this weekend and see what happens next!
I just posted some new pictures so please check them out!
Hugs To All, and ^^Angel^^
Sunday, August 13, 2006 11:54 PM CDT
TUESDAY 7:00 AM UPDATE: The kids are doing great and I will try to post an update either tonight or tomorrow after I pick up the pictures, hopefully there will be something there that I can post on here for you all!
Last week was the MPS Family Conference but we didn’t go to it this year. The next one is in March in Washington DC and it is the Scientific Conference as well so we REALLY want to go so I am praying that we can raise some money to go. We are planning on flying into Durham to see Dr. Kurtzburg and then continue on to Washington DC but of course it all depends on money. If you can help out, please visit our Active Giving webpage by clicking here: MPS CONFERENCE FUND 
I forgot to show you the pictures from Alyssa and Ben’s wedding so here they are!
and ^^Angel^^ 
Monday, August 7, 2006 10:45 PM CDT
TUESDAY 11:00 AM UPDATE: Ciara just had a fairly big seizure but she is doing alright. Please pray that this is the only one she has today, thanks!
Last week was the MPS Family Conference but we didn’t go to it this year. The next one is in March in Washington DC and it is the Scientific Conference as well so we REALLY want to go so I am praying that we can raise some money to go. We are planning on flying into Durham to see Dr. Kurtzburg and then continue on to Washington DC but of course it all depends on money. If you can help out, please visit our Active Giving webpage by clicking here: MPS CONFERENCE FUND and ^^Angel^^ 
Monday, August 7, 2006 10:45 PM CDT
TUESDAY 11:00 AM UPDATE: Ciara just had a fairly big seizure but she is doing alright. Please pray that this is the only one she has today, thanks!
Last week was the MPS Family Conference but we didn’t go to it this year. The next one is in March in Washington DC and it is the Scientific Conference as well so we REALLY want to go so I am praying that we can raise some money to go. We are planning on flying into Durham to see Dr. Kurtzburg and then continue on to Washington DC but of course it all depends on money. If you can help out, please visit our Active Giving webpage by clicking here: MPS CONFERENCE FUND and ^^Angel^^
Monday, August 7, 2006 10:45 PM CDT
TUESDAY 11:00 AM UPDATE: Ciara just had a fairly big seizure but she is doing alright. Please pray that this is the only one she has today, thanks!
Last week was the MPS Family Conference but we didn’t go to it this year. The next one is in March in Washington DC and it is the Scientific Conference as well so we REALLY want to go so I am praying that we can raise some money to go. We are planning on flying into Durham to see Dr. Kurtzburg and then continue on to Washington DC but of course it all depends on money. If you can help out, please visit our Active Giving webpage by clicking here: MPS CONFERENCE FUND and ^^Angel^^
Sunday, August 13, 2006 11:42 PM CDT
Well, there is not much to report for this past week. Ciara did have one seizure on Tuesday but no more so that was good news. I spent most of the week on the phone arguing with different agencies about equipment, SSI, insurance, etc so by the end of the day I was exhausted. So, I apologize for not returning a few phone calls but by that time I didn’t have the energy and I didn’t want to be on the phone another minute. I think I returned all the phone calls today so if I missed you, just give me a holler! I did forget to mention in the last journal entry that John’s aunt and uncle came up for a visit so we spent the evening at John’s dad’s house with the family and had a BBQ. The next day was Mason’s 14th birthday so I took the kids over to his house for his birthday party. This week I took the kids swimming a couple of times and the water is getting cold so I doubt we will do a lot of swimming in the weeks to come. I did take the kids to the grocery store a couple of days ago and this is what happened. Hunter hasn’t really been able to walk all by himself for a few months now so when I take the to the store, I put Ciara in her wheelchair and Hunter hold onto the handles and walks along with us. So, when we got thru the parking lot and up to the front of the store, I put the brakes on her wheelchair and Hunter was standing there holding onto the handle, like he always does. I stepped about 5 feet away to grab a shopping cart and as I turned around there was a woman standing at the door with a horrified look on her face. That is when I noticed that Hunter wasn’t standing by Ciara. I turned around more and saw him running across the parking lot! He was running like the wind! I took off after him and a lady out there grabbed him just as my friend Lisa was jumping out of her car to get him, thanks Lisa! Apparently the supplements I have been giving him are doing something to him, very interesting! So, I put him in the back of the shopping cart and continued on. So, that is it for now but I will update later in the week and let you know how it is going because Ciara and Hunter are going back to school tomorrow!!! I really did enjoy having them home all summer, since they were not allowed to go to summer school this year, but I am definitely ready for school to start again. OH! Alyssa is moving out here to Sacramento tomorrow, yippee!! Two and a half years I have been trying to get her out here and she will finally be here tomorrow, yippee!!!
Last week was the MPS Family Conference but we didn’t go to it this year. The next one is in March in Washington DC and it is the Scientific Conference as well so we REALLY want to go so I am praying that we can raise some money to go. We are planning on flying into Durham to see Dr. Kurtzburg and then continue on to Washington DC but of course it all depends on money. If you can help out, please visit our Active Giving webpage by clicking here: MPS CONFERENCE FUND I forgot to show you the pictures from Alyssa and Ben’s wedding so here they are!
and ^^Angel^^ Monday, August 7, 2006 10:45 PM CDT
TUESDAY 11:00 AM UPDATE: Ciara just had a fairly big seizure but she is doing alright. Please pray that this is the only one she has today, thanks!
Last week was the MPS Family Conference but we didn’t go to it this year. The next one is in March in Washington DC and it is the Scientific Conference as well so we REALLY want to go so I am praying that we can raise some money to go. We are planning on flying into Durham to see Dr. Kurtzburg and then continue on to Washington DC but of course it all depends on money. If you can help out, please visit our Active Giving webpage by clicking here: MPS CONFERENCE FUND and ^^Angel^^
Tuesday, July 25, 2006 11:35 PM CDT
SATURDAY’S JOURNAL:
John has this weekend off for a change so we didn’t really do much this morning, just had breakfast, watched TV and played games. In the afternoon John went to his dad’s house for a few hours and the kids and I stayed home because it was way to hot to go anywhere. It has been over 105 degrees for a few days now and we are not enjoying it. When John came home around 7:00 we went to the pool with some friends but the water so hot and it wasn’t enjoyable either so we stayed about an hour and then went home, but not before Hunter and Ciara got some swim time too.
SUNDAY’S JOURNAL:
The kids were in a good mood this morning so after we had breakfast and got everybody dressed and ready, we headed out to Sacramento. We decided to go out and roam around in the air conditioning so we stopped for lunch at Spaghetti Factory but it was so hot in there that sweat was dripping from my nose into my mouth while I ate and poor Ciara was wilted over the side of her wheelchair sweating. So as soon as John finished he took her out to the car and turned on the A/C while Hunter and I scarfed down the rest of our lunch and met them out there. Next we went to IKEA, we had never been there before, and that place is huge! We REALLY need a new couch and recliners because Hunter has destroyed the ones we have by bouncing on them and picking the threads so now the cushions are nothing but foam. Unfortunately we don’t have money to buy new furniture but we thought we would look and see what they had. Their couches won’t work for us because the backs are too low and Hunter would whack himself into the window sill every time he bounced across the couch and the cushions aren’t attached to the couch so I would be picking them up every 2 minutes which I don’t want to do. But we did see one couch there that we liked and it was $500 so hopefully we will be able to save some money over the next 6 months and get it, and hopefully it will still be there! There were a lot of things there that we wanted to get but didn’t REALLY need but we had fun walking around and checking it out. That is until we got to the kids room section of the store. There was a bedroom set that looked like Blue’s Clues and Tommy would have loved it. Of course looking at all the things that he played with and I would have bought him made me start crying and I told John to get me out of there ASAP. When we got out to the car it was 113 degrees outside so we put the kids in the car, stopped to get some ice water and headed back home. Since the pool water was hot yesterday we decided not to go swimming today so we stayed home, had dinner and watched TV.
MONDAY’S JOURNAL:
Today I decided to go to the grocery store which turned out to be a bad idea. As soon as we got to the store Hunter started screaming at the top of his lungs and didn’t stop the whole time we were in there. Now he hasn’t pooped in days and I gave him a laxative last night so I am assuming that he is screaming because his tummy hurts. When we got home he continued screaming for the rest of the day/night. I made beef stew for dinner so at least I won’t have to cook and heat up the house for the next few days. John was on his way home from work when he had a call for the fire dept so I took the kids to the swimming pool around 8:30 and met our friends there. We swam for about an hour and just as we were putting the kids in the car, John pulled up so we went home and I got his dinner for him while Hunter continued to scream. I had given him another laxative in the afternoon and some Tylenol and Beano but nothing seems to help.
TUESDAY’S JOURNAL:
Hunter is still screaming today and still no poop, poor guy. Ciara has been doing very well so that is all I am going to say so I don’t jinx it! Tomorrow we are going to Monterey overnight so I had to get things packed and ready for the trip. We are going there to see my dad and Gloria and visit with our friends the Grahams, their daughter Jacqueline also has Sanfilippo. I ran out to the store to get our regular laxative that I give them and some Tylenol since we will be on the road, must had Tylenol for the kids! Hunter continued his screaming for the rest of the day. John came home for about 10 minutes, long enough to eat dinner and then he had to run out for a fire so at 7:00 I put the kids in the car and headed to the fire dept for our weekly meeting. When I got there they said that John’s fire engine was release from the scene so he would be back soon. When all the guys were back from the fire we went to the pool and swam for a while and hunter seemed happier. When I was putting him in the car I realized why, he finally had a poop! I hope he does more because it will be a LONG trip to Monterey with him screaming for 3 hours in the car! 
When I get home I will post pictures from Alyssa’s wedding!
For those of you who are planning a trip, I just wanted to pass on some information to you. My friend Shari is a travel agent and she has a website which is www.mickeyandme.com and she specializes is Disney vacations, but she will make all of your reservations for where ever you want to go and she is wonderful!
Hugs To All, and ^^Angel^^
Thursday, July 20, 2006 10:28 AM CDT
I am so sorry that I haven’t updated sooner! This past week we have been busy and it has been very hot here, over 100 degrees every day, so I have just been exhausted and by the time I have a moment to sit down, I just don’t want to do the journal, hehe. I don’t even know where to start so this will be a brief update. I have taken the kids swimming every evening and Ciara and Hunter have both gotten in the pool. Most of you know that Hunter has always been terrified of water but this summer whenever I put him in the pool, he gets a big grin on his face and laughs and talks, he is so funny. When I put Ciara in she immediately starts talking and laughing, it’s so cute! Other then swimming, I have been taking the kids somewhere every day, shopping, errands, movies, etc so we have been very busy while John has been working he behind off. Between work, school and the fire dept we really don’t see much of him these days, but it will all be worth it in the end, when he is finished with school. Saturday was John’s high school reunion but we weren’t able to make it, but we did go to the class picnic on Sunday. We didn’t stay long because that was the day Ciara was having seizures and it was so hot outside which is why I think she was having the seizures. But John and I would like to thank everybody at the reunion for the wonderful donation then gave us, you are all wonderful and you have no idea how much that will help! For those of you who are planning a trip, I just wanted to pass on some information to you. My friend Shari is a travel agent and she has a website which is www.mickeyandme.com and she specializes is Disney vacations, but she will make all of your reservations for where ever you want to go and she is wonderful!
Everybody congratulate Alyssa, she and Ben are getting married at 8:00 tonight in Florida, woohoo!!! and ^^Angel^^ 
Sunday, July 9, 2006 10:49 AM CDT
SUNDAY 5:00 PM UPDATE: Little Miss Ciara has had 3 large seizures today so please say a prayer that she won't have anymore!
SATURDAY’S JOURNAL:
John left for work this morning and he won’t be home until tomorrow evening so it’s just the kids and myself today. When they woke up I got them something to eat and they watched cartoons for a while. We didn’t do much for the rest of the afternoon. Around 6:30 I took them to the swimming pool for a couple of hours so that was fun. Some of the kids that we went camping with were there so lots of craziness to keep Ciara and Hunter occupied! After we were finished swimming we all went home to dry off and then we went to the fire dept to get the new Rehab Unit put together and in service so we were there until almost midnight. When we got home I hooked Ciara up to her feeding pump, changed diapers, got Hunter some juice and then they were both asleep for the night.
SUNDAY’S JOURNAL:
John did an overnight last night so the kids and I stayed home today and relaxed. They both seem to be doing better well so we are happy. The only problem is that Hunter is having trouble with BMs but other then that, he has been very happy. John didn’t get home until around 6:00 this evening so the kids and I didn’t go swimming today so that we could spend some time with John because he is doing another overnight tomorrow. After dinner we watched the movie “Madagascar” and it was great! It’s the first time we all sat down and watched something together in a while without the kids crying or something so it was very nice.
MONDAY’S JOURNAL:
The kids and I had a very relaxing morning, just had breakfast and watched some TV and they napped a little. John is doing another over-night haul so he won’t be home today. My mom called and said she wanted to take us to the movies so I got the kids ready and we went to see “The Devil Wears Prada.” It was a cute movie and the kids did great in the theater so I was happy. In the evening I took the kids to the swimming pool for a couple of hours and then our group decided to go to watch the fire works in Jackson so we all ran home to get into some dry clothes. They gave me their Taco Bell orders so I picked up dinner and met up with them and we had a great time eating, talking, and watching the fire works. After they were over I took the kids back home and put them to bed, but we sure had a fun day!
TUESDAY’S JOURNAL: 
Today was an easy going day, the kids and I just stayed home and relaxed until John came home. Then we got the kids dressed, packed them in the car along with the food and we headed to the pool for our fire dept dinner/meeting. We stayed there for a few hours and talked, ate, had our meeting and then around 9:00 it was time to go home.
WEDNESDAY’S JOURNAL:
John is doing another over-night haul so the kids and I just stayed home for the day. Mason has been at camp this week so it has been kind of dull around here since I haven’t had to drive him here and there, but that’s OK, I don’t mind dull. In the evening I took the kids to the pool for a couple of hours, they really seem to enjoy going, although I haven’t put Ciara in the water yet, she likes to be outside and watching everybody.
THURSDAY’S JOURNAL:
Again, I didn’t do much during the day today. Other then a quick trip to the store, we stayed home and watched TV, etc. We didn’t go to the pool today so we watched movies, had dinner and that was about it. Lately Hunter has been moving around a lot more, he is all over the house which keeps me on my toes. Today he was sitting on the couch and then got up and went into the bedroom, laid down on the pillow and pulled the comforter over himself and watched cartoons, I almost fell over. He actually is thinking and doing things again, the thought process is working and it is wonderful, exhausting for me, but wonderful! Even John said that in the past two weeks he has seen a huge change in Hunter, yippee!
FRIDAY’S JOURNAL:
When Ciara and Hunter woke up I fed them and then they watched some cartoons. I had a fire dept meeting at 10:00 so I got the kids dressed and we went to the fire dept and after our meeting we all went downtown to have lunch which was yummy. Hunter had been crying/whining for about 30 minutes and little Ryan wanted to know why so I told him that Hunter was probably hungry so Ryan said that we should go get some Mexican food because that would make Hunter happy, so that is what we all did. Ryan was right, Hunter was very happy when we got there and he got to eat. After lunch I took the kids home and fed Ciara and we relaxed for the rest of the afternoon. There was a swim meet at the pool today so we weren’t able to go swimming which was a bummer, so we just stayed in and goofed around.
SATURDAY’S JOURNAL:
After the kids got up this morning I fed them, dressed them and then we were out of the house. I picked up my mom and we went to the movies to see the new Pirates Of The Caribbean movie and it was awesome! The only problem is that I can not wait a whole year to see the next one! Ciara and Hunter did great in the theater, as long as I kept the cookies coming for Hunter. After the movie we went home and I hooked Ciara up to the feeding pump and Hunter watched some cartoons. Around 6:00 I took the kids to the pool for a couple hours which was a lot of fun, as usual. Just as we were getting out of the pool the group decided to go out for dinner so we all went home to dry off and change and then met up at the fire dept and walked down town to the restaurant. We didn’t get out of there until 10:15 or so but we had a lot of fun. It was so funny, my friends’ son, Ryan, is 4 and he said to me “Alicia, Hunter is being quiet!” and I said “I know, it’s weird huh” and he said “yeah!” it was funny. Hunter was just sitting there watching the other kids and eating his dinner. After dinner I took the kids home and then John came home for a few minutes before he headed up to his cousin’s house for a little bit.
SUNDAY’S JOURNAL:
John has today off so we just stayed home and took it east, played games and had fun. In the afternoon he went to his dad’s house and just after he left, I picked Ciara up to move her over to the couch and she just started laughing and giggling, it was so cute! She continued to giggle for over an hour, every time I would touch her she was start up again. John came home at 6:00 and I had already got the kids dressed for the pool so we put them in the car and headed over there. There were about 20 of us swimming today so it was a lot of fun. We stayed until 8:30 and then we came home and watched a little TV before it was time to put the kids to bed.
Hugs To All, and ^^Angel^^
Saturday, July 1, 2006 4:14 PM CDT
and ^^Angel^^ 
Sunday, June 25, 2006 10:29 AM CDT
THIS WEEK’S JOURNAL:
Again, this week has been very busy and I can’t remember what we did, darn it! I know that last Saturday John was doing an over-night haul so I took the Ciara and Hunter to the Kevin Sharp concert at the fair grounds which was fun, but pushing two wheelchairs by myself was interesting! Hunter hates loud things so I wasn’t sure if he would freak out or not, but he had a great time! He was dancing and kicking and smiling from ear to ear! Ciara usually likes loud things because she is almost deaf so if it is loud, she can actually hear it, but when the lady started to sing the National Anthem, it was so loud that Ciara started grabbing her head and crying, poor thing. But when the bands came on stage and sang, they weren’t as loud so she did much better. The concert was for the Plymouth Fire Dept and the ARC so there were a lot of ARC people there and one girl in particular was very attracted to Ciara and Hunter and kept asking me questions about them and wanted to take them out to the middle of the arena by the stage. Eventually I did let her take Hunter up there and he loved it! I got a picture of her pushing him so check out the pictures. Sunday was Father’s Day so we packed up the car and headed up to the lake with some friends for a day of relaxing and fishing. I was hot here but I wasn’t thinking that we were going to the mountains, what an idiot, so I dressed the kids in shorts and when we got there is was cool and by the time we were leaving, it was cold on them, bad mommy! I kept trying to put the towels over them but they kept kicking them off, oh well. We all had a great time. As for the rest of the week, John has been doing a lot of over-night hauls so it has been just the kids and myself lately. It has been over 105 degrees all week so I have been taking them to the pool every night for a couple of hours. I think it might have been because of the heat, but Ciara had a small seizure Saturday morning around 4:15, but she went right back to sleep. Last night when I got home from the pool I had just brought Ciara in the house and was going back outside to get Hunter out of the car when I fell down the front steps, ouch! Then when I got back in the house I smashed my wrist into the top of the oven so now I have a nice burn across the top of my wrist and I then preceded to get my leg stuck on the recliner and have a nice big bruise on my shin. Needless to say I was at my limit and I lost it! I am not complaining because I love taking the kids everywhere with me, I wouldn’t change anything that we do, but it is not easy with John gone all the time and me having to do it all by myself, but it is those stupid little things like burning myself or falling or whatever, that just send me over the edge. I can take a lot of crap thrown at me, but sometimes I wonder what I did to make god so mad that he keeps throwing little things at me. It is now Sunday morning and we are waiting for John to get home from work, yep another over-night haul, and then we are going camping with a bunch of friends so I can’t wait! I just posted some new pictures so check them out!
Hugs To All, and ^^Angel^^
Saturday, June 17, 2006 12:01 AM CDT
SATURDAY 4:15AM UPDATE: Ciara just had a seizure, but it didn't last long. This is the first one she has had in a while so that is a good thing. I will update the journal tonight so check back later, thanks!
Well, so much for having a boring summer, we haven’t had time to sit down this week! John started back to school on Monday, but for the summer classes, he is taking them on-line so at least he doesn’t have to drive to Sacramento all the time. He has been working a lot more and even when he is home, he is studying and doing his on-line classes so we haven’t seen much of him this past week. Ciara and Hunter have been doing great. Now that school is out I have been taking them out to the stores and running my mom, sister, and Mason all over town so it has been a crazy week. We had our weekly fire meeting on Tuesday night and we did two control burns so my sister stayed with the kids while I went to the fires to take pictures, John was doing an overnight haul so he wasn’t home. With all of the rains we have had here this year, it is going to be a bad fire season, I couldn’t believe how fast the grass and shrubs burned, it wasn’t like that last year so everybody, be careful! Poor little Hunter and his big toe! I usually feed Hunter on paper plates because I am afraid that he is going to drop the heavy plate on his foot or break it, but lately he has been grabbing the paper plate and yanking it off the table so of course his food goes flying all over the place, which makes the dog happy. So, I put his lunch on a real plate and of course, he drops it on his big toe and boy, was it ugly! That poor toe was bleeding so much and he was just hysterical and wouldn’t let me near his foot. It bled for hours and he kept trying to walk and crawl around which made it hurt more and bleed more, I felt so bad, I didn’t even know it it was broken. I gave him some Tylenol and he finally fell asleep and I didn’t touch his toe until the morning. Then the fight started again, he refused to let me clean it off and I still couldn’t see what he did to it because all of the blood had dried and it was black and ugly. So, I tried to do the best I could, but it wasn’t much. I took him to the fire dept and had one of the guys look at it, but he couldn’t see anything either, too much blood. So, I took the kids home and as I was getting Hunter out of the car, he slipped and landed on his knees, which are now skinned, and of course he banged his toe and started the bleeding all over again. I took him in and sat him on the couch and wouldn’t let him move for a couple of hours. John was doing another overnight haul so I took the kids to the pool to meet up with some of the people from the fire dept and we swam, but it was cold so I didn’t put the kids in the pool. When we got home I couldn’t take it anymore so I just grabbed Hunter’s foot and started cleaning it and he was mad! Kicking, hitting, screaming, but eventually I got it cleaned off and he was so tired from fighting me that he fell asleep for the night. So, as for the rest of the week, we have been swimming every night but it is still too cold for the kids. It is finally in the 90’s today and this weekend so if we go tonight, I will let Hunter play in the water, but still to cold to put Ciara in, since she just got over pneumonia. Sunday is Father’s Day and we are going up to the lake with some friends so that will be a lot of fun, I can’t wait! Next weekend we are going camping with the same friends so I will have lots of pictures to post for you next weekend!
and ^^Angel^^
Friday, June 9, 2006 5:53 PM CDT
Not much has happened this past week. Ciara does not have pneumonia any more so she has had a wonderful week. Hunter has been very happy and smiling all the time so that means that I have had a nice week too. My mom took the kids and myself to the movies and we had a great time. Hunter is afraid of the dark so sometimes at the theater he freaks out when the movie starts, but this time he didn't make a sound and we had fun. Tuesday night we had out fire dept. dinner/meeting and it was hot! Ciara doesn't do well in the heat and she looked like she was wilting, but Hunter had a good time and ate a lot. Yesterday was Mason's 8th grade graduation so John stayed home with the kids while I went to that. I still amazes me at how much he has grown. He is only 13, but he looks and acts much older! Since John had to load his truck for work tonight I left the ceremony after Mason received his diploma and went home, then John left for a few hours. Today was the last day of school for Hunter and Ciara so they had a party. They had pizza, cookies, cupcakes and they had a lot of fun. I left the party around 11:30, they got out of school at noon, so that I could run a couple of errands before they came home. They will not be going to summer school this year because of budget cut-backs which is a bummer. But, I am sure we will find something to keep ourselves busy. Well, I guess that is it for now since I can't remember what we did for the rest of the week. John is doing an overnight haul so it will just be the kids and myself tonight so I rented a couple of DVDs and that will be our evening.
Hugs To All, and ^^Angel^^
Wednesday, June 7, 2006 3:55 PM CDT
I haven't typed my full update yet, but I at least wanted to let you all know how Ciara was doing since she was taken from school by ambulance last week for seizures. As you know she also ended up with pneumonia, but since last Tuesday when this happened, she hasn't had any more seizures (knock on wood). She had a follow-up doctor's appointment yesterday and her pneumonia is also gone so she is doing very well. I will try to post a full update tomorrow evening so check back again for that.
It is with a sad heart that I tell you that we lost another little angel on Tuesday. Little Kaylee had Hurlers (MPS-I) and she had a transplant, you can visit her journal by clicking here: KAYLEE'S JOURNAL
and ^^Angel^^ 
Saturday, June 3, 2006 1:24 PM CDT
The past couple of days have been very nice. Ciara is still her normal self so she is feeling great. She has been chattering and smiling and very alert, you wouldn’t even know she has pneumonia. Hunter had a rough night Thursday, he was up crying all night long. I think it was a poopy issue, but I sent both of them to school Friday morning. After they left I had to run a few errands, but I did stop by the school to check on Ciara, of course she was happy so I went back home. When they came home from school around 3:15 my sister and Mason came over and John got home from work around the same time. Tonight the Sacramento Zoo is having a special event for disabled and special needs kids so we are going, it should be fun. We will be going with some friends, their daughter is in Ciara and Hunter’s class at school and they live next to Mason so the plan was for us to drop Mason off at his house, he has baseball practice, and then meet them at their house and we will all drive to the zoo together. Well, of course it didn’t work out that way. Just as I was changing diapers and getting the kids ready to go, there was call for the fire dept, a fire behind the grocery store, so John took off to the fire dept. I finished getting the kids changed into shorts because it was hot today and then I put them in the car. John called and said that they needed me at the fire to take pictures so we stopped by there and I took some. We were already late to meet my friends at their house so John jumped in the car and we took Mason home, but our friends had already left so we headed off to Sacramento. Just as we were parking at the zoo, our friends pulled up so it was perfect timing. We all walked around the zoo, they had face painting, animal encounters, shows, etc, it was fun. We had to leave around 7:15 because John has to go to work at 3:00 am so on the way home we grabbed some dinner. The kids really seemed to have fun and they enjoyed the zoo and dinner, of course. By time we got home and relaxed, Hunter and Ciara were out like lights, it was a very pleasant night for me, lots of sleep! I put up some new pictures so check them out!
I have some wonderful news to share with everybody! I am sure that most of you remember Alyssa, Tommy’s Best Buddy from Duke. Well, she just got engaged last weekend to a wonderful guy named Ben. We are so happy for them, they are two great people! The best part is that Ben lives here by Sacramento, he is in the Air Force, so Alyssa will be moving from Florida to Sacramento in August, yippee!!! I just posted some pictures of them so go check out Ben and Alyssa!
Hugs To All, and ^^Angel^^
Tuesday, May 30, 2006 7:27 PM CDT
FRIDAY 6:00 AM UPDATE: Ciara is still doing great so I am sending her to school this morning. This evening we are going to the Sacramento Zoo for their "Dreamnight At The Zoo." Special needs kids get into the zoo for free at 5:30 tonight so we are going with some friends and we will have a good time. I will update the journal in the morning with some new pictures so come back then!
WEDNESDAY 5:30 PM UPDATE: I just found out that the positive blood culture on Ciara was contaminated so that is wonderful, no blood infection! She has had a good day today, she is acting like her normal self so I am very happy! WEDNESDAY 7:45 AM UPDATE: The hospital just called and said that Ciara's blood cultures they did yesterday came back positive so that means that not only does she have pneumonia, she also has an infection in her blood. So, I just called Kaiser and they couldn't get her in today so we have a 2:00 appointment tomorrow for a follow-up and pray to God that they don't admit her! I will keep you all posted on what happens, but pray that she gets better and that they don't admit her tomorrow!
TUESDAY 7:30 PM UPDATE: Hello Everybody! We are home now and Ciara does have pneumonia in her left lower lung, but it is just the beginning of pneumonia so we caught it very early, thank God! This could possibly be the reason for the seizures she had at school this afternoon, the pneumonia caused her O2 SATs to drop. The school called me when they were putting the kids on the bus to come home and said that Ciara as having small seizures but there were only seconds between them and they weren't stopping. I told them to get Hunter off the bus and I was on my way to come get them. A few minutes later they called me back and said that they weren't stopping and they were thinking about calling 911 so I told them to go ahead and call and I would be there soon. I called John and told him what was happening and then I called my sister to have her meet me at the school because I needed her to take care of Hunter and S'More, our dog, who was along for the ride. When I got to the school the ambulance was already there and they had put Ciara on some oxygen and they said that as soon as they did that, the seizures stopped. They took her to the hospital and my sister, Hunter and myself met them there. This is the same emergency room that I worked at for 14 years so it was like going back home again. They were very busy, but they did give us the royal treatmentand even brought us Taco Bell for dinner! By the time the doctor got to her, the O2 had run out so she had been on room air for at least half an hour and she was doing fine. Her chest didn't sound as rattly as it did when we were at school, her color was back and she was sitting up and grinning and chattering away, she was back to her normal self. The doctor said that she wasn't in any distress and wanted to know if I wanted him to check her out, I told him that I thought she was fine, but I did want him to do a chest x-ray to see if she had pneumonia so he agreed. Turns out she did so he wanted to admit her which meant that she would be transfered to Kaiser in Sacramento and that is an hour away and I didn't want to do that. The doctor wanted to do some lab tests so I agreed and thankfully they all came back normal and the xray showed the beginning of a pneumonia so the doctor agreed to let us go home. They gave Ciara two shots of antibiotics, one in each thigh, and we went home. It is now 10:45 PM and she is still chattering away and smiling so she is doing just fine (knock on wood). I would like to say thank you to Patty and Alyssa for updating everybody for me here in my journal and on the MPS FORUM and the LYSOSOMAL STORAGE DISORDER FORUM. I really need to thank everybody at their school for taking such great care of Ciara and Hunter, especially today. I can't forget Larry from American Legion Ambulance, Jackson Fire, and Christy, Karen & Vicki at Sutter Amador ER for everything! TUESDAY 6:35 PM UPDATE: Ciara has pneumonia in her left lung...they are waiting for her to get some shots of antibiotics I believe then she is going to be able to go home. Thanks for your prayers!
TUESDAY 2:00 PM UPDATE: Hey...Alyssa here. Please pray for Ciara. She was taken from school today by ambulance to the hospital because she was having seizures non-stop. She also had a fever. She is in the hospital now and was put on oxygen. She just had a chest x-ray that showed phenumona. I will update you all when more info comes in.
Hugs To All, and ^^Angel^^ 
Saturday, May 27, 2006 4:24 PM CDT
This is Memorial Day weekend so please take a moment to honor all of the men and woman who are serving in the armed forces and those who we lost. Some of you know that John was in the Marine Corp and he was sent to Desert Storm. I honestly can’t tell you how much we owe these wonderful people who protect us all. SANFILIPPO NEWS!!! There is a new Sanfilippo Discussion List thru the Alliance Sanfilippo where we can all chat, ask questions and send messages to each other so if you are an MPS-III family, please take a moment and add your name to the list! Just click here to visit their website: SANFILIPPO DISCUSSION LIST
and ^^Angel^^ 
Monday, May 22, 2006 2:30 PM CDT
THOUGHT FOR THE DAY: Stressed spelled backwards is Desserts. Coincidence? I think not!
FRIDAY’S JOURNAL:
I woke up around 5:30 and started getting everything ready for the kids to go to school. John left for work and the kids were on the bus so I ran out with my sister and got a few things taken care of, then we went back home. Mason, Ciara and Hunter call came home around 3:00 so Mason stayed with Ciara while I took Hunter for a haircut. Since the bus driver said that he screamed the whole ride home so he was already mad and I already had a headache, I figured why not just get his hair cut and get the fight over with. I am sure that I have mentioned it before, Hunter hates haircuts! I have to sit in the chair with him on my lap with my legs wrapped around his so he can’t kick the poor lady and my arms wrapped around his chest and one around his forehead so he can’t move, all the while he is screaming and yelling and flailing about. People always stop at the window and watch the show and I can’t move for two days because all of my muscles hurt. But, he did better today, he still fought, but not as much. When we were finished I took Mason home and the kids and went back home and just relaxed. After dinner Hunter watched his cartoons and John did some work outside and then we were in for the night. When I changed Ciara for bed, I noticed that her back was burning hot and during the night she was fussy, hot and then she had two big seizures.
SATURDAY’S JOURNAL:
Ciara was cooler this morning when she got up so hopefully she will have a better day today. We got the kids up and dressed and we were out of the house around 9:30, on our way to Oakland for the MPS Meeting. I had printed the directions from Map Quest, and they got us almost to Oakland, then the directions were wrong, they told us to make a left instead of a right and we ended up totally lost in Berkley for 45 minutes. Of course by this time Hunter was screaming his head off and Ciara was wimpering and I had an enormous headache! We finally got to the meeting and Hunter and Ciara joined Scotty at the Barney TV. The kids were wonderful thru the whole meeting which was three hours. Hunter kept trying to hold Scotty’s hand and Scotty just wanted to watch Barney, it was funny. Ciara was a little fussy, but not bad. We left the meeting around 4:00 and headed back home, I think we finally got home around 6:30. I put Ciara in her recliner and hooked her up to the feeding pump and within 10 minutes she was out like a light for the rest of the night. John and I watched TV while Hunter sat at his Spongebob Table and watched Barney on his new TV/DVD that a wonderful person sent for the kids and it has been a lifesaver! Now I don’t have to watch Barney all day long! Around 10:00 Hunter started whining so John laid him down and two minutes later he was out also.
SUNDAY’S JOURNAL:
We didn’t do much today because it is raining. John went to his dad’s house for the afternoon and the kid and I stayed home and just goofed off. They both had a good day today, everybody was happy and that’s all that matters to me!
MONDAY’S JOURNAL:
I forgot to set my alarm last night so I woke up at 6:30, normally I get up at 5:30 so that I have enough time to make lunches, get the kids dressed and hook Ciara up to her feeding pump. So, I had to rush this morning to get everybody ready on time and of course the bus was early today, but we made it. After the kids left, we had a Ciara’s IPP meeting which turned out well. The Regional Center is going to have Ciara and Hunter Insitutionally Deemed which means that they can never lose their Medi-Cal which is wonderful because they pay for all of the kids’ medical equipment, diapers and Ciara’s feeding supplies, of course Friday we were denied Medi-Cal. There are other things that we are working on for the kids so all in all it was a good meeting. As soon as that meeting was over we had to run to Sacramento to get John signed up for school, then we went back home. The kids came home around 3:00 and then Mason came over for a little bit and played Nintendo. Around 4:00 we loaded everybody up and dropped Mason off at his house and then we went to Wal-Mart to get a new battery for the van. Tomorrow is my moms birthday so we are taking her to dinner tonight since we have other plans for tomorrow. Hunter had a great time at dinner because it was a buffet so he got to eat all of his favorite things and then topped it off with a piece of chocolate cheesecake! By the time we left dinner it was 7:00 so we made a quick stop at the grocery store and went home. I changed Hunter’s diaper and set him up at his table with some goldfish crackers and he watched Barney while John, Ciara and I went in the hot tub which was wonderful. We have been so busy and it has been so hot here lately that we haven’t used the hot tub for two months, but tonight it was fantastic and of course Ciara really liked it too! When we took her out I dried her off and she went right to sleep and slept all night stretched out very long. Usually she sleeps with her knees pulled up to her chest but after the hot tub she is so relaxed that she sleeps all stretched out. Hunter was very fussy when it was time for bed, he just couldn’t fall asleep and was crying and grumpy. I gave him some Motrin and Melatonin (for the first time) and eventually he fell asleep. SANFILIPPO NEWS!!! There is a new Sanfilippo Discussion List thru the Alliance Sanfilippo where we can all chat, ask questions and send messages to each other so if you are an MPS-III family, please take a moment and add your name to the list! Just click here to visit their website: SANFILIPPO DISCUSSION LIST
I UPDATED THE SOY JOURNAL SO CHECK IT OUT BY CLICKING HERE! BENNETT CHILDREN'S SOY JOURNAL Last week I told you about two of our Sanfilippo friends that needed your prayers. Annabelle is still in need of prayers, the doctors still don’t know what is wrong, click here to visit her journal: ANNABELLE'S JOURNAL . Andrew had his feeding tube placed and is back home and doing so much better, click here to visit Andrew’s journal: ANDREW'S JOURNAL 
Hey Everyone,
This is Alyssa and I am doing a fundraiser for the Bennett family. They are struggling and need help to pay for the kids' medical items, prescriptions, etc. so I am making bracelets! They are called Bennett Beads Of Hope. They are purple beads with a beautiful clear square bead in the middle with purple swirls throughout it. I picked purple of course for MPS. The bracelets are $5.00 each and there are two sizes, small for kids and regular for adults. If you would like to order one, please send me and email and I will send you my address, my email is Sabiemc@aol.com. Below are a couple of links to pictures so you can see what they look like. Thank you all!!!
BRACELET PIC #1
BRACELET PIC #2
Hugs To All, and ^^Angel^^
Thursday, May 18, 2006 9:10 PM CDT
I just wanted to let you know that a couple of our Sanfilippo friends are in need of your prayers. First is Andrew, he has been having a lot of problems and yesterday he had surgery to get a feeding tube, like Ciara has. He had a very rough night, but he is doing great and he got to go home tonight. You can visit his journal by clicking here, ANDREW'S JOURNAL. Next is Annabelle, she was transplanted two years ago and has been having a very hard time also. She is at Duke right now and she has the doctors stumped. Please stop by and let them know you are thinking and praying for them. You can visit Annabelle's website by clicking here, ANNABELLE'S JOURNAL
California MPS Family Meeting! Hey Everyone, and ^^Angel^^ 
Thursday, May 18, 2006 9:10 PM CDT
This past weekend was a very busy weekend! After I sent the kids off to school Friday morning I started my day early. I ran out to the store to get some things for Ciara’s birthday party in the morning. Then I spent some time at the fire dept helping get things ready because this weekend is Ione Homecoming and the fire dept is going to be selling tri-tip sandwiches. So, Ciara and Hunter came home around 3:15 and Mason was already here so we all relaxed for about an hour and then we had to head out again. It is in the upper 90’s this weekend, yuck! John is doing an overnight haul so after I dropped Mason off at his house, the kids and I went to the fire dept and helped load up everything and take it over to the park and we all started to set up. When we got back home Ciara and Hunter took it easy and watched cartoons. I had to slice the peppers for the sandwiches and stuff the party bags for Ciara’s party, put their wheelchairs in the car and make sure I had everything put in one spot so all I had to do in the morning was put the kids in the car and go. Saturday morning John came home around 7:30 so he took a short nap while I ran out to the park to help bring over the rest of the food and drinks and set up a little bit. Then I ran to Jackson to pick up Ciara’s cupcakes for the party and went back home. By this time it was 10:30 so I got the kids dressed and we all went over to the park. Boy was it hot today! People started arriving for the party around 1:00 so we opened presents, had cupcakes and there just happened to be a carnival with rides and games so my mom got them to donate a bunch of tickets for the kids so that was wonderful! We had a great time and Ciara got a lot of wonderful things so thank you all!!! Around 5:30 it was time to take the kids home and let them relax, lay down and cool off, but John stayed at the park to help clean up. Sunday it was the same thing, we got up early and headed out to the park to sell more sandwiches! I would like to thank everybody on the fire dept for helping with the kids this weekend! While I was running around and making sandwiches, the guys that were barbequing the tri-tips kept moving them into the shade and making sure they were OK. By the time the afternoon came around, it was hot again and poor little Ciara was wilting so after I fed her I grabbed some blankets and a pillow from the car and laid her down under a tree and she took a little nap. Hunter was happily watching everybody, trying to kick whoever came near him and enjoying his tri-tip sandwich! I took them home again around 5:00 for about an hour so they could cool off and watch some cartoons. Then it was time to go to the fire dept again and help unload everything, wash the dishes and put everything back where it went. I think we finally got home around 8:00 that night and boy, were we tired! Monday morning I was very happy to sent the kids off to school because I was exhausted. John has school today so we had breakfast and then he left for school. I didn’t do much today and I did take a nap in the afternoon. Ciara, Hunter and Mason came home around 3:00 so we watched a little Seinfeld, had a snack and then I took Mason home. That was it for the evening, the kids and I didn’t do anything. John came home around 8:30 and that was it for the day. Tuesday and Wednesday were pretty much the same, John didn’t work Tuesday because he needed to study for his finals on Wednesday, which it turns out he got a A on so WAY TO GO JOHN!!! When the kids came home from school on Tuesday, Hunter was very tired and couldn’t keep his eyes open, which is not like him. In fact, he slept on and off all afternoon and evening and didn’t drink or eat anything. I was wondering if he was coming down with something. Wednesday morning Hunter was still sleepy and didn’t want to wake up so I thought I would keep him home incase he was sick, but by the time I got Ciara dressed and in her wheelchair, I looked up at Hunter and he was sitting in the recliner with a big grin on his face, so I sent him off to school too! Ciara has been “talking” a lot the past couple of days, but babbling away, too cute! I stopped by the school to make sure Hunter was feeling OK and he was eating lunch so he must be feeling better. The teacher said that he has been smiling a lot the past few days which I have noticed lately too. Hopefully the old Hunter is back again and no more screaming! Well, that brings us to today, Thursday. John went to work this morning and the kids went off to school. At 8:00 I had to take my sister to an appointment so while she was doing that, I ran some errands and we didn’t get back home until about 1:00. Mason didn’t come over after school today so the kids and I just watched TV and had a snack and then John came home around 5:00. I made dinner and that was it for the evening! California MPS Family Meeting!
Sponsored by: Shire, Genzyme, Biomarin
When: Saturday, May 20th
Time: 12 Noon until 4 p.m.
Where: Woodfin Suites Hotel, 5800 Shellmound St., Emeryville, CA 94608,(888) 433-9042
“Medical Management of MPS Diseases
And the role of MPS Registries”
Paul Harmatz, M.D.
Oakland Children’s Hospital
12:00 – 1:00 p.m.
“Practical Issues on Airway Management in MPS”
Oakland Children’s Hospital
1:00 – 2:00 p.m.
“MPS Coping Strategies”
Jennifer Basurto, Social Worker
Oakland Children’s Hospital
2:00 – 3:00 p.m.
Open for Questions
Representatives from Shire Human Genetic Therapies, Genzyme and Biomarin will be available to answer questions about MPS and ERT
3:00 - 4:00 p.m.
REFRESHMENTS WILL BE PROVIDED
VIDEOS WILL BE AVAILABLE FOR THE CHILDEN TO WATCH
Please R.S.V.P as soon as possible!
Please call Kim Whitecotton @ (209) 544-2708 or email her at cottons@earthlink.net Hey Everyone,
This is Alyssa and I am doing a fundraiser for the Bennett family. They are struggling and need help to pay for the kids' medical items, prescriptions, etc. so I am making bracelets! They are called Bennett Beads Of Hope. They are purple beads with a beautiful clear square bead in the middle with purple swirls throughout it. I picked purple of course for MPS. The bracelets are $5.00 each and there are two sizes, small for kids and regular for adults. If you would like to order one, please send me and email and I will send you my address, my email is Sabiemc@aol.com. Below are a couple of links to pictures so you can see what they look like. Thank you all!!!
BRACELET PIC #1
BRACELET PIC #2
Hugs To All, and ^^Angel^^
Friday, May 12, 2006 11:32 PM CDT
Hey Everyone,
Happy Mother's Day
Sunday, May 7, 2006 8:19 AM CDT
Thursday, May 4, 2006 9:36 PM CDT
SATURDAY’S JOURNAL:
John did an overnight haul last night so today it is just the kids and myself. Mason had a baseball game this morning, but I didn’t feel like dragging the kids out there. It is just not build for disabled people, there is absolutely no parking for all the people there, let alone not even one handicapped parking spot. It is all dirt with grooves from the water run-off and rocks and mud because it doesn’t drain and it is a pain in the “you-know-what” to get their wheelchairs out there, not to mention Mason’s team has been playing out on the back field so by the time I get the kids out there, I am angry. I told John that we need to start making a fuss about it, writing letters and/or going to the city council meetings to tell them that it is unacceptable. Ciara had a good day today, we just stayed home and watched TV and goofed around, but Hunter was still fussy and whining.
SUNDAY’S JOURNAL:
We didn’t do much today, it’s hot and I don’t want to waste the gas by driving somewhere. Hunter is still crying a lot and I don’t know what else to do for him. Tomorrow he has his endoscopy so we will see what they find. Ciara is doing good, so at least I only have one fussy kid.
MONDAY’S JOURNAL:
After I sent Ciara off to school this morning I was hoping that Hunter would sleep in, but of course he didn’t. He can’t have anything to eat this morning because he is having an endoscopy so he is going to be MAD! He was able to have apple juice so at least that quieted him down, for the most part. We headed out to Sacramento around 9:15 and as we were almost to the hospital, I noticed helicopters circling overhead, something was going on! We got to the hospital and they took Hunter back and put some Emla cream on his so it wouldn’t hurt when they started his IV. We then went to the waiting room because they were running 30 minutes behind. Of course that is when Hunter started his screaming fit, so John went out to the car to get the laptop so Hunter could watch Barney. It was finally our turn, so we went back to the endoscopy room and Hunter was not happy at all! They would only let one parent in the room so I waited out in the hall. I did have to laugh, and roll my eyes, when one of the nurses told me I better sit down because she thought I would pass out if I was in the room with Hunter. I had to bite my tongue because I wanted to say “Honey, if you only knew what I had seen!” Between everything Tommy went thru and then I worked in the emergency room for 14 years, I think I can handle it! They even made John sit down, oh well. When they were done we had good news, Hunter doesn’t have reflux and his throat looks wonderful so no feeding tube for Hunter! Well, not yet anyway. They did say that it looks like he has an infection in his tummy so when they get the biopsy results back, they might start him on an antibiotic. They took him back to the recovery area and we waited for about an hour and then they let us go home. John had already had to leave because he had to get to school so Hunter and I headed home. My sister was waiting at the house to get Ciara off the school bus and Mason was already there so I put everybody back in the car and drove them home. We got back home again around 4:30 so I hooked Ciara up to her feeding pump and Hunter took a nap on the couch and we had a wonderfully quiet evening. Hunter fell asleep around 8:30 and I think I fell asleep around 9:00, just before John came home from school.
TUESDAY’S JOURNAL:
Hunter was still very sleepy and since he wasn’t able, or didn’t want to, eat or drink anything yesterday, I decided to keep him home from school today to keep an eye on him. I did send Ciara off on the school bus and she looked very happy and alert this morning, she was so cute. Hunter slept in this morning, but when he woke up he was able to eat some banana muffin and chocolate milk so I felt much better and I am sure he did too. John didn’t work today so he went to school to work on his Sanfilippo presentation that is due tomorrow. In the afternoon we ran out to the store and went back home, nothing exciting. Ciara was very happy when she came home from school. Mason came over for a little bit, but then I took him home because he has baseball practice. Tonight is the fire dept dinner/meeting so I made some taco meatballs to bring and then when John came home around 5:45 we put the kids in the car and went to the fire dept. Hunter ate a cheeseburger while we were there so his throat must be feeling better. After the meeting we went home, I fed Ciara and we went to bed.
WEDNESDAY’S JOURNAL:
I sent both kids to school this morning and I was very happy when the bus pulled away, finally a day to myself! John left for school early today to work on his presentation a little bit before it was due this afternoon so I just stayed home by myself and did nothing! Apparently Hunter screamed the whole bus ride home, but at school they said he was smiling and happy today. When Mason came over he had a snack and then I took him home. Around 5:00 I was going to pick up my sister and take her to the store, but the fire chief called and said that the new Rescue unit was just delivered so I went to the fire dept to take some pictures for him, then I went to pick up my sister. After I was finished with her, I took the kids back to the fire dept to watch them get the new Rescue loaded and take a few more pictures. We went back home around 8:30 or so and Hunter watched some cartoons and was happy. John didn’t get home until 10:30 because on his way home from school he stopped at the fire dept to take his driving test on the new Rescue and to help get it ready for service.
THURSDAY’S JOURNAL:
Again, the kids were both happy and smiling when I put them on the school bus this morning. I don’t know why, but Hunter has been a little happier since he had the endoscopy, interesting! We are still adding the Thick-It to his drinks and he isn’t coughing anymore so hopefully no more aspirating for Hunter! John is home today because they didn’t have any work for him so we went down to the fire dept to do some work on the old Rescue and then we had to take it to the service shop. On the way home we stopped at Wal-Mart, then I dropped John off at the fire dept again. It was time for Mason to get out of school so on my way home I stopped by the school and picked him up. He wanted to stop and get a soda at the gas station, then I took him to his house. When Hunter and Ciara came home the driver said that Hunter was crying again today, but not as bad as yesterday, but the note from school said that he was happy and more smiles today so he must just have an issue with the bus. Around 5:00 the fire dept dive team was having a training so I put the kids in the car and met up with them to take some pictures. We only stayed about an hour because we were starving and Hunter needed to be changed so we went home. I made dinner and Hunter ate and was happy as he watched his cartoons. Ciara had a wonderful day today, she is just a happy little thing these days! Hunter fell asleep around 9:30 and slept all night long, yippee!!!
Sunday is Ciara's 10th birthday!!!
I just put up a few new pictures so check it out!
Hugs To All, and ^^Angel^^
Friday, April 28, 2006 8:37 PM CDT
MONDAY PM UPDATE: Good News!!! Hunter does not have reflux and he doesn't need a feeding tube, yeah!!!! He might have a stomach infection so when they get the results back in a couple of days, they might put him on an antibiotic, but it's nothing major so we had a great day today!
MONDAY AM UPDATE: Hunter is going in this morning for his endoscopy so please pray that nothing goes wrong and they don't find anything too bad. I am praying that he doesn't need a feeding tube right away! I will try to post an update later today.
THIS WEEK’S JOURNAL:
I am still having computer issues so this will probably be a short update. The rains have finally stopped here and it went from cold and rainy to hot and sunny overnight. It is in the upper 80’s here this week and I am loving it, definitely tired of the rain! After Hunter’s appointment last Friday I started adding the Thick-It to his drinks and I think it is working. I haven’t noticed him coughing when drinking so hopefully no more aspirating for Hunter! I also started giving him Prevacid and he seemed happier for a couple of days, but for the past 3 days he has been crying and crying again, darn it. Monday he has a 11:00 appointment for an endoscopy to see if he is refluxing and what his throat looks like, I think they will do a biopsy while they are in there, at least they did with Ciara so I am assuming they will do the same thing. I am praying that he doesn’t need a feeding tube right now, I don’t think I am ready to fight him and a tube right now. He is a fighter and boy is he strong, I just am not looking forward to having to keep him hooked up to the feeding pump, it could get ugly! Anyway, please pray that they don’t find anything interesting in the scope and we can just keep him on the Thick-It and Prevacid for a while. As far as Miss Ciara, she is going wonderful! She has been perky and happy and not much to report with her, and that is wonderful! She has been on her seizure meds for 6 weeks now and they seem to be working, yeah! I will try to update again Monday night after the scope so check back and see what happened!
Ciara’s 10th birthday is on May 7th so I have made a Wish List for her here: CIARA'S WISH LIST . There are also a few other things that she would like from Flag House so below are the links if anybody is interested.
RING BOW MOBILE
Sectional Raft
Swing Chair
Huddle Cuddle Cushion
and ^^Angel^^ 
Friday, April 21, 2006 11:59 PM CDT
THIS WEEK’S JOURNAL:
This week’s journal will be short but sweet because my computer is having issues with Caringbridge and keeps kicking me off. For the most part, Ciara and Hunter have had a good week. Hunter has still been crying a lot, mostly at night, so I haven’t had much sleep this week and it is starting to get to me. Sunday my mom, sister, and Mason came over for Easter and the kids opened their baskets and we played some games until it was time for Mason to leave. Then we went over to John’s dad’s for a little bit, but then I had to get Ciara hope to feed her. But not before the egg hunt, Ciara had some eggs hidden on her that her cousins had to find and Hunter just stayed over by the dining room table to watched everybody, then we had to go home. I kept the kids with me and John and my mom stayed to have dinner with everybody. On Monday we had a doctor’s appointment with the kids’ Geneticist and that went well. Hunter has gained 5 lbs since we were there last so that was great! I told the doctor that I thought Hunter might be aspirating so he said that he will make a referral for Hunter to see the GI doctor. For those of you who don’t know what aspirating is, that is when you are eating or drinking and some of the food/drink goes into your lungs instead of your stomach and causes pneumonias. Hunter had this problem when he was a baby and had about a dozen pneumonias in his first year. For this first birthday he got a feeding tube but only needed it for 10 months and he has been tube free for the past seven years. Lately I have noticed him coughing when he is drinking and he has been choking a lot over the past several months so something is going on. Nothing much else to report over the next few days. It has been sunny and in the upper 70’s this week which is wonderful since it has been raining for months now! Wednesday the GI doctor called to set up an appointment for Hunter and I was happy that it was the same doctor that Ciara goes to so he already knows us which will make things easier. His appointment will be on Friday morning so that was fast! Friday I sent Ciara off to school and Hunter and I went to Sacramento for the appointment. Hunter was crying and fussing as he has been lately but not too bad. The doctor said that it is a good chance that Hunter is aspirating and he would be surprised if Hunter didn’t have reflux. He said that he wants to be aggressive with Hunter and catch things before they get really bad like Ciara did a year ago. So, they scheduled a scope for him on May 1st to see if he has reflux. He also told me to get some stuff called Thick-It to put in Hunter’s drinks to thicken them up and he shouldn’t aspirate then. So, my hope is that by May 1st the Thick-It and the Prevacid I am going to get for him will be helping and he won’t have to get a feeding tube right away, but I wouldn’t be surprised if that is the road we are headed for. Since it has stopped raining here everybody has allergies very bad and especially Ciara and Hunter. I have wondered if this is part of Hunter’s problem, but poor little Ciara is having a very hard time. She doesn’t have enough power to cough up the junk in her throat and it is just pitiful. I have been suctioning her for the past couple of days but last night and this morning she was very bad. I bought some Benedryl yesterday so hopefully that will help them today. Well, that’s all for now, I will keep you all posted if anything else happens. Ciara’s 10th birthday is on May 7th so I have made a Wish List for her here: CIARA'S WISH LIST. There are also a few other things that she would like from Flag House so below are the links if anybody is interested.
Ring Bow Mobile
Sectional Raft for Hot Tub
Swing Chair
Huddle Cuddle Cushion
Hugs To All, and ^^Angel^^ 
Friday, April 14, 2006 11:27 PM CDT
THURSDAY AM: Hello everybody! I have been having trouble with my computer when I visit some Caringbridge websites, mine included, it keeps shutting down. I finally got on just now after trying for the past couple of days! Anyway, I will try to update the journal tomorrow night after Hunter's doctor appointment. I think he might be aspirating again so I want the GI doctor to have a look at him. Please pray that it is something easy, or nothing at all, I really don't want to have to get him a feeding tube again!
I have set up an Active Giving account to help pay for the equipment that Ciara and Hunter need. Please stop by and check it out, here's the website: EQUIPMENT FUND and ^^Angel^^ 
Thursday, April 6, 2006 11:23 PM CDT
April 11th:
Ok, so this is Alyssa and I snuck in here to change the journal a bit to say to Alicia.....
Don't kill me for doing this, but your my best friend and I had to let everyone know it was your special day because you are a very special mother, wife, friend and person. Hope you have a wonderful day filled with much happiness. LOVE YOU!!!!
Alyssa
FRIDAY’S JOURNAL:
John left for work this morning and he is doing another overnight haul so it will be just the kids and myself today. When I put Ciara and Hunter on the school bus this morning they were both happy and smiling so it is going to be a good day today! Or maybe they knew it was going to be a party day at school! After they left I had breakfast and then ran out to get a few things done before the party at school. Since the teacher and aides can’t come to Hunter’s birthday party tomorrow they are having a little party at school for him. The teacher baked the cake and the kids got to decorate it and he even got some presents. Thank you all so much, it was fun and he loves his new toys! After the party I left to go to the grocery store before the kids got home. Mason came over after school, looking like a drowned rat because it was raining again. The kids got home a few minutes later so everybody had a snack, watched some TV and then I took Mason to his house. John called and said that they didn’t have the load for him so he would be coming home tonight. I was happy about that because now he could help me with the party tomorrow. In the evening I made dinner and the kids watched some cartoons and they are both in a great mood tonight, nobody was screaming or crying!
SATURDAY’S JOURNAL:
Saturday was Hunter’s birthday party so after we all grabbed a quick bite to eat, we loaded everything into the cars and John went to the fire dept to start setting up while I picked up my sister, the cake, and the pizzas and then went to the fire dept. John had already moved the fire engines out and mopped the floor so all we had to do was toss out the table clothes, pop the pizzas in the oven and throw some balloons around, very easy! Several kids weren’t able to come because they were sick so I wasn’t sure if anybody was going to show up for the party, but a lot of people did. Our little friend Scotty came and a little girl from Hunter’s class came, along with family and other friends so it was a lot of fun. We had pizza, cake, I forgot the ice cream was in the freezer darn it, and then it was time for the piñata. Hunter loved to hit the piñata, he was just smiling and laughing every time he whacked that thing! After everybody had their turn, we let Mason beat it till the goodies fell out, then it was time for presents. Hunter got some new DVDs, toys, clothes, and he and Scotty were very happy with the Barney items! I don’t know an MPS child who doesn’t LOVE Barney! After we finished with the presents, John took the kids on a ride around town in the fire engine. After that it was time to start cleaning up and then we went home and didn’t really do much for the rest of the afternoon/evening. The weather today was perfect, it had stopped raining for the day and the sky was blue. Ciara and Hunter both had a great day and went to bed early.
SUNDAY’S JOURNAL:
Not much happened today, we just stayed home and relaxed, of course it was raining again. We set a record for the month of March, 24 days of rain, and other then yesterday, it has rained every day of April too! The kids had a good day, everybody was happy.
MONDAY’S JOURNAL:
I woke up around 5:30 this morning and hooked Ciara up to her feeding pump, made lunches, got the kids dressed and sent them off to school. John also has school today so he isn’t working. We actually got to go out for breakfast so that was nice. When we got back home, John left for school and I got a few things done before the kids came home from school. You guessed it, it’s raining again, so we didn’t go out anywhere, except to take Mason home in the afternoon. Ciara and Hunter had a good day and a great evening, laughing and happy.
TUESDAY’S JOURNAL:
We didn’t send the kids to school this morning because we had to be in Sacramento very early so we took them with us. After we finished up, we headed back home and I fed the kids. It wasn’t much after that when the fire dept pager went off and they needed all firefighters to report to the fire station. John went to the fire dept and called me, there is flooding all over town so they are all driving around to check the creeks and help out where it is needed. We are only a couple of houses from the creek so I went to see what it looked like and boy, it was high! I don’t think I have ever seen it that high before. It was raining like crazy and since we live on a cul-de-sac (the creeks at the end) it was odd that there was a constant stream of cars going back and forth in front of our house. Then I saw the neighbors across the street packing up their things, wrapping plastic around their house and sandbagging so I started to get concerned. The creek comes up into their backyard, but I think we are going to be OK since our house is up a little higher, but you never know! When Mason got here after school I put the kids in the car, grabbed my camera and we drove around and took some pictures, then I took Mason home. I went over to the fire dept and the local TV guy was there and asked me to email him some of my pictures so they could put them on the news so I will have to do that later this evening. The ladies were stocking the rehab unit with hot chocolate and snacks for the guys so I went back out to take pictures. I have mentioned it before, but in case you are a new reader, I am the fire dept photographer. It was about this time that there was a call for a chimney fire so I went over there and got some pictures, it was the first time that I went into a fire, although the fire was out when I went in there, it was smoky but kind of cool! It was still raining buckets and the one day that I had done my hair and had hairspray in my hair, it was raining like there was no tomorrow! Needless to say, when I got back to the fire dept and walked in the door, they all laughed at me. By this time it was around 4:30 so I took the kids home, changed their diapers and fed Ciara. I called a friend of mine to see if Ciara could lay on her couch for about an hour because she had been sitting up since 7:00 this morning and that is a long time for her. I dropped Ciara off and then Hunter and I went back to the fire station. They had ordered pizzas so we grabbed a bite to eat and then had our regular Tuesday meeting. I picked Ciara up and we went back to the fire station but didn’t stay long. The rain was slowing down and the creeks were lowering, slowly, so we will have to see what happens over night.
WEDNESDAY’S JOURNAL:
We overslept this morning, thank goodness the fire dept pager went off at 6:45, I usually get up at 5:30 to get Ciara fed and everything ready, so now I only had 15 minutes to feed her, get them dressed and ready for school. We did it, but it was close. By 7:30 the bus still hadn’t come so I called the office and they said on their board somebody wrote that Ciara and Hunter weren’t going to school today. So, they had to track down the bus and they said he would be back around 8:00 to get them. After they left, there was another call for a vehicle accident so I threw my jeans on and we ran out to the fire dept. Of course they cancelled the call when we got there, but we hung out and chatted for a little bit. When we got back home I made pancakes and we relaxed for a little bit, but then John had to go to school. I ran out to buy a birthday present for tomorrow, the kids are going to a party. Then I stopped by the hospital to visit one of the fire fighters who has been there for about a week now. Some friends were just walking up so we went up to visit together. I couldn’t stay long because it was already after 2:00 and the kids get home soon so I had to rush back home. Mason and Hunter had a snack while Ciara kicked back in her recliner and watched TV. Around 4:00 I took Mason home and then the kids and I did nothing for the rest of the evening. John came home from school around 10:00 and that was it for the day.
THURSDAY’S JOURNAL:
Both kids went off to school happy this morning, but John’s company didn’t have any work for him today because a bunch of the plants are closed so that’s a week that he hasn’t been able to work and I don’t know what we are going to do for money. I have been selling a few things on Ebay, but that’s not the big money maker it used to be. I just wish there was something that I could do from the house to make a little extra money, but I just don’t know what to do. Anyway, on with our day. We headed over to the fire dept around 11:30 and met up with some others to get the donations together for the firefighter that I mentioned earlier. John and I went around town and bought a bunch of gift cards for him and his family to use and then we had to get home to get the kids off the school bus. They both were happy, but tired when the bus came so I brought them inside and they watched Mason and John play Nintendo. For some reason Ciara loves to watch us play Mario Kart, it really catches her attention. We had to leave after a couple of games because Mason has baseball practice and Ciara and Hunter have a birthday party to go to. I must say that I am happily surprised at how many parties the kids are invited to. Sometimes the “special” kids don’t get invited to birthday parties but we are very fortunate to have such wonderful friends and family and always include Ciara and Hunter in whatever they are doing. We got to the party late, but we did get to see Kenny opening his presents and then Hunter got to have a few whacks at the piñata, so he had a great time. Ciara liked to watch the kids running and playing, but we had to leave around 5:00 because it was time to feed Ciara. That was pretty much it for the rest of our day, we just stayed home and I took a nap in the evening which was nice. 
I just put up a few new pictures so check them out! I have set up an Active Giving account to help pay for the equipment that Ciara and Hunter need. Please stop by and check it out, here's the website: EQUIPMENT FUND
Hugs To All, and ^^Angel^^
Friday, April 7, 2006 3:23 PM CDT
FRIDAY’S JOURNAL:
John left for work this morning and he is doing another overnight haul so it will be just the kids and myself today. When I put Ciara and Hunter on the school bus this morning they were both happy and smiling so it is going to be a good day today! Or maybe they knew it was going to be a party day at school! After they left I had breakfast and then ran out to get a few things done before the party at school. Since the teacher and aides can’t come to Hunter’s birthday party tomorrow they are having a little party at school for him. The teacher baked the cake and the kids got to decorate it and he even got some presents. Thank you all so much, it was fun and he loves his new toys! After the party I left to go to the grocery store before the kids got home. Mason came over after school, looking like a drowned rat because it was raining again. The kids got home a few minutes later so everybody had a snack, watched some TV and then I took Mason to his house. John called and said that they didn’t have the load for him so he would be coming home tonight. I was happy about that because now he could help me with the party tomorrow. In the evening I made dinner and the kids watched some cartoons and they are both in a great mood tonight, nobody was screaming or crying!
SATURDAY’S JOURNAL:
Saturday was Hunter’s birthday party so after we all grabbed a quick bite to eat, we loaded everything into the cars and John went to the fire dept to start setting up while I picked up my sister, the cake, and the pizzas and then went to the fire dept. John had already moved the fire engines out and mopped the floor so all we had to do was toss out the table clothes, pop the pizzas in the oven and throw some balloons around, very easy! Several kids weren’t able to come because they were sick so I wasn’t sure if anybody was going to show up for the party, but a lot of people did. Our little friend Scotty came and a little girl from Hunter’s class came, along with family and other friends so it was a lot of fun. We had pizza, cake, I forgot the ice cream was in the freezer darn it, and then it was time for the piñata. Hunter loved to hit the piñata, he was just smiling and laughing every time he whacked that thing! After everybody had their turn, we let Mason beat it till the goodies fell out, then it was time for presents. Hunter got some new DVDs, toys, clothes, and he and Scotty were very happy with the Barney items! I don’t know an MPS child who doesn’t LOVE Barney! After we finished with the presents, John took the kids on a ride around town in the fire engine. After that it was time to start cleaning up and then we went home and didn’t really do much for the rest of the afternoon/evening. The weather today was perfect, it had stopped raining for the day and the sky was blue. Ciara and Hunter both had a great day and went to bed early.
SUNDAY’S JOURNAL:
Not much happened today, we just stayed home and relaxed, of course it was raining again. We set a record for the month of March, 24 days of rain, and other then yesterday, it has rained every day of April too! The kids had a good day, everybody was happy.
MONDAY’S JOURNAL:
I woke up around 5:30 this morning and hooked Ciara up to her feeding pump, made lunches, got the kids dressed and sent them off to school. John also has school today so he isn’t working. We actually got to go out for breakfast so that was nice. When we got back home, John left for school and I got a few things done before the kids came home from school. You guessed it, it’s raining again, so we didn’t go out anywhere, except to take Mason home in the afternoon. Ciara and Hunter had a good day and a great evening, laughing and happy.
TUESDAY’S JOURNAL:
We didn’t send the kids to school this morning because we had to be in Sacramento very early so we took them with us. After we finished up, we headed back home and I fed the kids. It wasn’t much after that when the fire dept pager went off and they needed all firefighters to report to the fire station. John went to the fire dept and called me, there is flooding all over town so they are all driving around to check the creeks and help out where it is needed. We are only a couple of houses from the creek so I went to see what it looked like and boy, it was high! I don’t think I have ever seen it that high before. It was raining like crazy and since we live on a cul-de-sac (the creeks at the end) it was odd that there was a constant stream of cars going back and forth in front of our house. Then I saw the neighbors across the street packing up their things, wrapping plastic around their house and sandbagging so I started to get concerned. The creek comes up into their backyard, but I think we are going to be OK since our house is up a little higher, but you never know! When Mason got here after school I put the kids in the car, grabbed my camera and we drove around and took some pictures, then I took Mason home. I went over to the fire dept and the local TV guy was there and asked me to email him some of my pictures so they could put them on the news so I will have to do that later this evening. The ladies were stocking the rehab unit with hot chocolate and snacks for the guys so I went back out to take pictures. I have mentioned it before, but in case you are a new reader, I am the fire dept photographer. It was about this time that there was a call for a chimney fire so I went over there and got some pictures, it was the first time that I went into a fire, although the fire was out when I went in there, it was smoky but kind of cool! It was still raining buckets and the one day that I had done my hair and had hairspray in my hair, it was raining like there was no tomorrow! Needless to say, when I got back to the fire dept and walked in the door, they all laughed at me. By this time it was around 4:30 so I took the kids home, changed their diapers and fed Ciara. I called a friend of mine to see if Ciara could lay on her couch for about an hour because she had been sitting up since 7:00 this morning and that is a long time for her. I dropped Ciara off and then Hunter and I went back to the fire station. They had ordered pizzas so we grabbed a bite to eat and then had our regular Tuesday meeting. I picked Ciara up and we went back to the fire station but didn’t stay long. The rain was slowing down and the creeks were lowering, slowly, so we will have to see what happens over night.
WEDNESDAY’S JOURNAL:
We overslept this morning, thank goodness the fire dept pager went off at 6:45, I usually get up at 5:30 to get Ciara fed and everything ready, so now I only had 15 minutes to feed her, get them dressed and ready for school. We did it, but it was close. By 7:30 the bus still hadn’t come so I called the office and they said on their board somebody wrote that Ciara and Hunter weren’t going to school today. So, they had to track down the bus and they said he would be back around 8:00 to get them. After they left, there was another call for a vehicle accident so I threw my jeans on and we ran out to the fire dept. Of course they cancelled the call when we got there, but we hung out and chatted for a little bit. When we got back home I made pancakes and we relaxed for a little bit, but then John had to go to school. I ran out to buy a birthday present for tomorrow, the kids are going to a party. Then I stopped by the hospital to visit one of the fire fighters who has been there for about a week now. Some friends were just walking up so we went up to visit together. I couldn’t stay long because it was already after 2:00 and the kids get home soon so I had to rush back home. Mason and Hunter had a snack while Ciara kicked back in her recliner and watched TV. Around 4:00 I took Mason home and then the kids and I did nothing for the rest of the evening. John came home from school around 10:00 and that was it for the day.
THURSDAY’S JOURNAL:
Both kids went off to school happy this morning, but John’s company didn’t have any work for him today because a bunch of the plants are closed so that’s a week that he hasn’t been able to work and I don’t know what we are going to do for money. I have been selling a few things on Ebay, but that’s not the big money maker it used to be. I just wish there was something that I could do from the house to make a little extra money, but I just don’t know what to do. Anyway, on with our day. We headed over to the fire dept around 11:30 and met up with some others to get the donations together for the firefighter that I mentioned earlier. John and I went around town and bought a bunch of gift cards for him and his family to use and then we had to get home to get the kids off the school bus. They both were happy, but tired when the bus came so I brought them inside and they watched Mason and John play Nintendo. For some reason Ciara loves to watch us play Mario Kart, it really catches her attention. We had to leave after a couple of games because Mason has baseball practice and Ciara and Hunter have a birthday party to go to. I must say that I am happily surprised at how many parties the kids are invited to. Sometimes the “special” kids don’t get invited to birthday parties but we are very fortunate to have such wonderful friends and family and always include Ciara and Hunter in whatever they are doing. We got to the party late, but we did get to see Kenny opening his presents and then Hunter got to have a few whacks at the piñata, so he had a great time. Ciara liked to watch the kids running and playing, but we had to leave around 5:00 because it was time to feed Ciara. That was pretty much it for the rest of our day, we just stayed home and I took a nap in the evening which was nice. I have set up an Active Giving account to help pay for the equipment that Ciara and Hunter need. Please stop by and check it out, here's the website: EQUIPMENT FUND
Hugs To All, and ^^Angel^^
Thursday, March 30, 2006 8:23 AM CST
TUESDAY AM: I am going to update the journal late tonight or early in the morning so check back again. I will also post some new pictures from Hunter's birthday!
TUESDAY’S JOURNAL:
Hunter slept all night last night, thank God! So, I sent him to school this morning, he didn’t go to school yesterday because he was up all night screaming and crying. I waited all day to get the phone call asking me to pick him up at school because he was screaming, but nobody called so that was great. I ran a few errands and then went to the fire dept for a little bit. Mason got a ride over after school because it was raining so hard, I haven’t seen it rain like this in a while. John was driving truck and called me from Merced to listen to the giant hail hitting his truck as he was driving and boy was it loud! Ciara and Hunter came home around 3:00 and it stopped raining long enough to get them off the bus, then it started to rain again. After I took Mason home Ciara relaxed in her recliner and Hunter watched cartoons and had a snack and was very happy. Maybe he was crying for the last two weeks because he was tired of being in the house. The note home from school today said that he was walking and running all day so I know he was happy to be back at school. Later in the evening John went to his fire dept meeting and I wasn’t feeling well so I just flopped myself in the recliner and the kids watched cartoons and had a good time. John came back home around 10:00 so I got up and changed Hunter for bed and I noticed that he felt hot and he was a little fussy, but not bad. I gave him some Motrin, some juice and he curled up with his blankie and went to sleep.
WEDNESDAY’S JOURNAL:
I got up around 5:45 this morning and hooked Ciara up to her feeding pump, made Hunter’s lunch for school, and started to get the kids dressed. Hunter doesn’t feel warm this morning so I am going to send him to school. It is raining here again this morning so I don’t know if I will be doing much today, probably just stay home. John went to school around noon and I ran to the grocery store and went back home and relaxed while I could. The kids came home from school around 2:50 and then Mason walked over after school so I got everybody a snack and we watched TV for a little bit. After I took Mason home, the kids watched some cartoons and I goofed around on the computer for a while. Ciara and Hunter were both very happy this evening, Hunter only whined once so I put him in the bedroom with cartoons and he was happy for a couple of hours, until it was time for bed.
THURSDAY’S JOURNAL:
Hunter was happy when I sent him off to school this morning. As we were standing by the bus waiting for the lift to come down, the neighbor’s chicken, which always follows me everywhere, was looking at Hunter kind of funny. All of a sudden it jumped up on his shoulder and kept staring at his hair, it was so funny. I kept trying to push it off his shoulder, but that darned chicken didn’t want to get down, he really likes Hunter’s red hair! John and I had to go to Sacramento to take care of a few things and then we stopped by to visit his sister Kathy and we all went out to lunch, thanks Kathy! We ate and talked and then looked at the clock and had to rush home to get the kids off the school bus. When the bus pulled up and they opened the door, all you could hear was Hunter crying. I brought the kids in the house and gave him some juice and he was happy. Mason came over and grabbed a snack and then I had to take him home because today is the first day of baseball practice and he is so excited. In the evening we had dinner and Hunter seemed happier today, again, so of course that makes me happy. We took the kids in the hot tub and as usual, Ciara loved it. After they were dried off they watched some cartoons and then as soon as I put a blanket over them, they were asleep.
Please keep our friend Jay in your prayers. Two days ago they were going home from the hospital and then all of a sudden things went bad and they didn't expect him to make it thru the night last night. Most likely they will have to make an aweful decision this morning. You can visit his website by clicking here: JAY'S JOURNAL
There is a new website called JOIN THE SEARCH so please check it out. Ciara, Hunter and Tommy are on the website too!
CIARA'S PAGE
HUNTER'S PAGE
TOMMY'S PAGE
Hugs To All, and ^^Angel^^ 
Thursday, March 30, 2006 8:23 AM CST
TUESDAY’S JOURNAL:
Hunter slept all night last night, thank God! So, I sent him to school this morning, he didn’t go to school yesterday because he was up all night screaming and crying. I waited all day to get the phone call asking me to pick him up at school because he was screaming, but nobody called so that was great. I ran a few errands and then went to the fire dept for a little bit. Mason got a ride over after school because it was raining so hard, I haven’t seen it rain like this in a while. John was driving truck and called me from Merced to listen to the giant hail hitting his truck as he was driving and boy was it loud! Ciara and Hunter came home around 3:00 and it stopped raining long enough to get them off the bus, then it started to rain again. After I took Mason home Ciara relaxed in her recliner and Hunter watched cartoons and had a snack and was very happy. Maybe he was crying for the last two weeks because he was tired of being in the house. The note home from school today said that he was walking and running all day so I know he was happy to be back at school. Later in the evening John went to his fire dept meeting and I wasn’t feeling well so I just flopped myself in the recliner and the kids watched cartoons and had a good time. John came back home around 10:00 so I got up and changed Hunter for bed and I noticed that he felt hot and he was a little fussy, but not bad. I gave him some Motrin, some juice and he curled up with his blankie and went to sleep.
WEDNESDAY’S JOURNAL:
I got up around 5:45 this morning and hooked Ciara up to her feeding pump, made Hunter’s lunch for school, and started to get the kids dressed. Hunter doesn’t feel warm this morning so I am going to send him to school. It is raining here again this morning so I don’t know if I will be doing much today, probably just stay home. John went to school around noon and I ran to the grocery store and went back home and relaxed while I could. The kids came home from school around 2:50 and then Mason walked over after school so I got everybody a snack and we watched TV for a little bit. After I took Mason home, the kids watched some cartoons and I goofed around on the computer for a while. Ciara and Hunter were both very happy this evening, Hunter only whined once so I put him in the bedroom with cartoons and he was happy for a couple of hours, until it was time for bed.
THURSDAY’S JOURNAL:
Hunter was happy when I sent him off to school this morning. As we were standing by the bus waiting for the lift to come down, the neighbor’s chicken, which always follows me everywhere, was looking at Hunter kind of funny. All of a sudden it jumped up on his shoulder and kept staring at his hair, it was so funny. I kept trying to push it off his shoulder, but that darned chicken didn’t want to get down, he really likes Hunter’s red hair! John and I had to go to Sacramento to take care of a few things and then we stopped by to visit his sister Kathy and we all went out to lunch, thanks Kathy! We ate and talked and then looked at the clock and had to rush home to get the kids off the school bus. When the bus pulled up and they opened the door, all you could hear was Hunter crying. I brought the kids in the house and gave him some juice and he was happy. Mason came over and grabbed a snack and then I had to take him home because today is the first day of baseball practice and he is so excited. In the evening we had dinner and Hunter seemed happier today, again, so of course that makes me happy. We took the kids in the hot tub and as usual, Ciara loved it. After they were dried off they watched some cartoons and then as soon as I put a blanket over them, they were asleep. There is a new website called www.jointhesearch.org so please check it out. Ciara, Hunter and Tommy are on the website too!
CIARA'S PAGE
HUNTER'S PAGE
TOMMY'S PAGE
Hugs To All, and ^^Angel^^ 
Monday, March 27, 2006 11:55 PM CST
SATURDAY’S JOURNAL:
Today is Hunter’s 8th birthday!!!
Hunter woke up happy this morning so I got him some strawberry pancakes and he watched cartoons. While he was happily munching away, I fed Ciara and made John’s breakfast. Today is the Special Needs Rodeo, but it is raining so I don’t think we will be going. The California High School Rodeo Assoc. has their championship rodeo here every year and they have a special rodeo for disabled children. They have it down in the arena and the kids get to ride a horse, rope fake cows, have races, etc. The kids love it, but now that they are in wheelchairs, it’s hard to get them around the arena in the dirt. The last couple of times we went it had rained and then they wet down the arena with a water truck so there was no way I could push the chairs thru the mud, I was so mad! So, we didn’t go last year and it is raining again today so I don’t feel like dealing with that mess. Instead we went out for pizza to celebrate Hunter’s birthday and John’s dad and my mom and sister met us there. Hunter are like a horse and we had a great time. When we left the pizza place we stopped at the pet store for my sister, took her home and then we went back home. Ciara is having a much better day today and she was very happy when John took her in the hot tub this evening.
SUNDAY’S JOURNAL:
The kids were up fairly early this morning so we all had breakfast and then just goofed around for the rest of the morning. We decided to drain the hot tub and refill it so that took most of the afternoon, but Ciara and Hunter had a good day. They were both happy and nobody was fussing, just watching cartoons and taking it easy. In the late afternoon we headed out to Wal-Mart and then I checked on a couple of things for Hunter’s birthday party next weekend, then we went back home. Unfortunately the hot tub is taking forever to heat up so we won’t be able to go in tonight, darn it! I honestly don’t know what Hunter’s problem is, he has been whining/fussing/crying for two weeks and tonight was the worst! He didn’t sleep a minute all night long, just cried and screamed, I gave him a snack, some juice, Tylenol, laxative, cartoons, his blankie, I even laid down with him but nothing would stop the crying.
MONDAY’S JOURNAL:
I was looking forward to the kids going back to school today, but I can’t send Hunter to school crying like he did all night long so I sent Ciara off on the bus and kept Hunter home. He took a little nap after the bus left, but I have a HUGE headache this morning! He did OK for most of the morning, but around noon he started fussing again so when John left for school, I put Hunter in the car and we drove around, delivered some invitations to his birthday party this weekend, and then went back home. I did stop and get him a chocolate doughnut to eat while we were driving around and that quieted him for a little bit, but you should have seen the chocolate gooey mess when we got home and I opened the car door to get him out, YUCK! He fussed on and off for the rest of the afternoon/evening, but not nearly as bad as he did last night. I looked in his mouth to see if he had any new teeth coming in, but I didn’t see any, I thought maybe that is why he was crying. Ciara was very happy when she came home from school, I know she was happy to go back, they spoil her so much and she loves it! Mason walked over after school, grabbed a snack and then he wanted to go home to do his homework so I took him. Just as we got back home it started to rain so as usual, we just stayed inside. We had dinner and watched some TV and then John came home from school around 9:00 so he helped me give the kids a bath. I cleaned Hunter’s ears out and he didn’t cry so I don’t think he has an ear infection, again, I was thinking that maybe that is why he has been crying. So, I am back at square one with no idea what is bothering him. Ciara went to sleep early but Hunter didn’t fall asleep until after midnight, but at least he slept all night!
Hugs To All, and ^^Angel^^ 
Thursday, March 23, 2006 11:03 PM CST
MONDAY’S JOURNAL:
This is going to be a short and boring journal, but that means that nothing crazy happened so that is always a good thing! On Monday it was raining, as usual, so we didn’t go out anywhere. I made breakfast and then John left early for school so he could get some studying done before classes. Ciara has been doing very well and eating well, but Hunter is still fussing and crying every day. Other then that, he seems to be doing well, he is definitely putting on the pounds! For a while he had lost weight, but now he is chunking up which makes me happy.
TUESDAY’S JOURNAL:
On Tuesday we went to pick up my sister so I grabbed Mason and we headed out. On the way home we stopped at Taco Bell and then I dropped her off at her house and took Mason back to his house. When John came home from work we did a little work around the house while Hunter watched cartoons, he was happy about that, and then I made dinner. It was beef stew and Hunter ate his whole bowl and then he had 2 soft pretzels, what a piggy! John left for his fire meeting so I went in the other room to use the computer. Hunter started screaming and crying and I couldn’t get him to stop. It was like he was possessed, he was just insane, so I put my hands on his cheeks and tried to get him to stop and look at me, but he wouldn’t. He has been acting strange for a couple of weeks now and he is doing things that other MPS kids are also doing and that makes me wonder. At first I thought it was because he was cooped up in the house too much and was getting cabin fever, but now I think it is MPS related, but who knows. He doesn’t seem to be in pain because I have given him Tylenol and it doesn’t help, but he also has been having trouble pooping, which is very odd for him, so maybe his tummy hurts, maybe he has high pressure on his brain, who knows?! So, when I couldn’t get him to stop screaming, I grabbed him, changed his diaper, gave him a sippy cup and put him in the bedroom with cartoons and after a 10 minutes or so, he calmed down and sat in there for an hour without making a peep. Then John came home from his meeting and went to bed so I brought Hunter out to the living room and he was still OK for the rest of the night, although I did give him some laxative so hopefully that will help.
WEDNESDAY’S JOURNAL:
Hunter woke up this morning very happy so I made him some pancakes and he watched cartoons. I also had to change to stinky diapers this morning on him so hopefully his tummy won’t hurt today and he won’t scream all evening long. John left for school very early this morning and Ciara slept until 1:00 when I woke her up. Mason needed a ride to my sister’s house so I picked him up around 2:00 and of course he was hungry so we stopped to get him some lunch and then I dropped him off and went back home. The kids had a great day today, nobody was fussing, which makes me a very happy person! In the evening we had dinner and watched some TV and waited for John to come home which won’t be until late tonight.
THURSDAY’S JOURNAL:
The kids woke up fairly early this morning so I changed them and got them something to eat and then they watched some cartoons. Ciara and Hunter are both in a great mood this morning so I am hoping that it continues for the rest of the day. Hunter had been crying for almost 2 weeks but yesterday was wonderful so hopefully he is over whatever was bothering him. I think it was his tummy because he was having trouble pooping and he was VERY gassy. Today he was all over the house, he kept going into the computer room, the bedroom and walking to the dining room and hanging on the back of the couch, swinging his legs and playing with my ponytail. Mason called and said he was hungry so I put the kids in the car and we dropped off some lunch for Mason and as soon as I put Hunter in the car he started laughing, he was so happy to get out of the house. I know I mentioned it before, but we haven’t gone anywhere lately because of the rain. The last few days I haven’t gone into any stores, but I have been taking the kids for rides in the car which Hunter always loves. Ciara likes it too, she likes to look out the window and watch things, her eyes are always big like she can’t wait to see what comes along next. We went back home and had lunch and I goofed around on the computer for a while. I really need to find a way to make some money, but I can’t go out and get a job because I only have a few hours in the morning that I can work, while the kids are in school. I have to be able to leave at any time because something is always happening with the kids so who is going to hire me, nobody. I wish there was something I could do from the house so if anybody has any ideas, PLEASE let me know! In the evening I had to go to the grocery store so again, Hunter started laughing when I got him out of the car and we started walking into the store. We went to the tiny little store here in our inky dinky little town so it isn’t a big store at all, but when we got to the checkout, Hunter was getting grumpy because he was walking too much, it doesn’t take much these days to get his legs hurting and tired, MPS STINKS! So, we went home and I made dinner and Hunter watched cartoons in the bedroom for a long time which was very nice, that meant that I actually got to watch TV in the living room without anybody bugging me! John is doing an over-night haul so he won’t be home tonight. Around 11:00 I got Hunter away from the cartoons and within 5 minutes all I heard was him snoring!
Hunter's birthday is on March 25 and people have asked me what he wants, so I made a wish list for him, just click here: HUNTER'S WISH LIST. He is wearing a size 8, but 8/10 is too big for him, and pants must have elastic in the waist. He loves Barney, teletubbies, Dragon Tales, etc. Just keep in mind that he chews on everything so please, nothing with small pieces. THANKS!
I also set up an Active Giving account so please check it out by clicking here: ACTIVE GIVING
Hugs To All, and ^^Angel^^
Thursday, March 23, 2006 11:03 PM CST
MONDAY’S JOURNAL:
This is going to be a short and boring journal, but that means that nothing crazy happened so that is always a good thing! On Monday it was raining, as usual, so we didn’t go out anywhere. I made breakfast and then John left early for school so he could get some studying done before classes. Ciara has been doing very well and eating well, but Hunter is still fussing and crying every day. Other then that, he seems to be doing well, he is definitely putting on the pounds! For a while he had lost weight, but now he is chunking up which makes me happy.
TUESDAY’S JOURNAL:
On Tuesday we went to pick up my sister so I grabbed Mason and we headed out. On the way home we stopped at Taco Bell and then I dropped her off at her house and took Mason back to his house. When John came home from work we did a little work around the house while Hunter watched cartoons, he was happy about that, and then I made dinner. It was beef stew and Hunter ate his whole bowl and then he had 2 soft pretzels, what a piggy! John left for his fire meeting so I went in the other room to use the computer. Hunter started screaming and crying and I couldn’t get him to stop. It was like he was possessed, he was just insane, so I put my hands on his cheeks and tried to get him to stop and look at me, but he wouldn’t. He has been acting strange for a couple of weeks now and he is doing things that other MPS kids are also doing and that makes me wonder. At first I thought it was because he was cooped up in the house too much and was getting cabin fever, but now I think it is MPS related, but who knows. He doesn’t seem to be in pain because I have given him Tylenol and it doesn’t help, but he also has been having trouble pooping, which is very odd for him, so maybe his tummy hurts, maybe he has high pressure on his brain, who knows?! So, when I couldn’t get him to stop screaming, I grabbed him, changed his diaper, gave him a sippy cup and put him in the bedroom with cartoons and after a 10 minutes or so, he calmed down and sat in there for an hour without making a peep. Then John came home from his meeting and went to bed so I brought Hunter out to the living room and he was still OK for the rest of the night, although I did give him some laxative so hopefully that will help.
WEDNESDAY’S JOURNAL:
Hunter woke up this morning very happy so I made him some pancakes and he watched cartoons. I also had to change to stinky diapers this morning on him so hopefully his tummy won’t hurt today and he won’t scream all evening long. John left for school very early this morning and Ciara slept until 1:00 when I woke her up. Mason needed a ride to my sister’s house so I picked him up around 2:00 and of course he was hungry so we stopped to get him some lunch and then I dropped him off and went back home. The kids had a great day today, nobody was fussing, which makes me a very happy person! In the evening we had dinner and watched some TV and waited for John to come home which won’t be until late tonight.
THURSDAY’S JOURNAL:
The kids woke up fairly early this morning so I changed them and got them something to eat and then they watched some cartoons. Ciara and Hunter are both in a great mood this morning so I am hoping that it continues for the rest of the day. Hunter had been crying for almost 2 weeks but yesterday was wonderful so hopefully he is over whatever was bothering him. I think it was his tummy because he was having trouble pooping and he was VERY gassy. Today he was all over the house, he kept going into the computer room, the bedroom and walking to the dining room and hanging on the back of the couch, swinging his legs and playing with my ponytail. Mason called and said he was hungry so I put the kids in the car and we dropped off some lunch for Mason and as soon as I put Hunter in the car he started laughing, he was so happy to get out of the house. I know I mentioned it before, but we haven’t gone anywhere lately because of the rain. The last few days I haven’t gone into any stores, but I have been taking the kids for rides in the car which Hunter always loves. Ciara likes it too, she likes to look out the window and watch things, her eyes are always big like she can’t wait to see what comes along next. We went back home and had lunch and I goofed around on the computer for a while. I really need to find a way to make some money, but I can’t go out and get a job because I only have a few hours in the morning that I can work, while the kids are in school. I have to be able to leave at any time because something is always happening with the kids so who is going to hire me, nobody. I wish there was something I could do from the house so if anybody has any ideas, PLEASE let me know! In the evening I had to go to the grocery store so again, Hunter started laughing when I got him out of the car and we started walking into the store. We went to the tiny little store here in our inky dinky little town so it isn’t a big store at all, but when we got to the checkout, Hunter was getting grumpy because he was walking too much, it doesn’t take much these days to get his legs hurting and tired, MPS STINKS! So, we went home and I made dinner and Hunter watched cartoons in the bedroom for a long time which was very nice, that meant that I actually got to watch TV in the living room without anybody bugging me! John is doing an over-night haul so he won’t be home tonight. Around 11:00 I got Hunter away from the cartoons and within 5 minutes all I heard was him snoring! Hunter's birthday is on March 25 and people have asked me what he wants, so I made a wish list for him, just click here: HUNTER'S WISH LIST. He is wearing a size 8, but 8/10 is too big for him, and pants must have elastic in the waist. He loves Barney, teletubbies, Dragon Tales, etc. Just keep in mind that he chews on everything so please, nothing with small pieces. THANKS! I also set up an Active Giving account so please check it out by clicking here: ACTIVE GIVING
Hugs To All, and ^^Angel^^
Sunday, March 19, 2006 11:45 PM CST
I just wanted to say thank you to a couple of wonderful people who sent some surprises in the mail! We got some DVDs and Blockbuster gift cards and we will defintely put those to good use! The kids and I haven't been getting out much because of the weather and John hasn't been home much these days, between school and working, so when he is home he doesn't want to go out so now we can watch movies at home and have a nice time! Thank you all so much!!!! 
WEDNESDAY’S JOURNAL:
Ciara and Hunter slept great last night, yippee!!! I was just about to make breakfast when John had to leave on a medical aide for the fire dept so we waited for him to get home, then I made breakfast and the kids watched cartoons. The afternoon was spent with Hunter smiling and laughing, much better then the crying and whining he has been doing lately. Hunter was watching cartoons so I gave him a little bowl of mini Ritz and after eating a few, he got one stuck in his throat. After a couple of minutes he finally coughed it up, but now I really have to watch what I give him, he is choking a lot lately. John left for school around noon so the kids and I stayed home and didn’t do much of anything, I just didn’t feel like taking them out anywhere today. Although I should have because it is the only day it isn’t raining lately. In the evening we had dinner and watched TV and John surprised me when he came home from school an hour early. We played a couple games on Nintendo and then Hunter fell asleep next to me in the recliner. I moved him and he went right back to sleep so I fed Ciara and put her to bed also.
THURSDAY’S JOURNAL:
I woke up with morning and made John’s lunch and then he headed off to work. As I sat there, just thinking about things, I started thinking about Hunter’s birthday next week. I can’t believe he is going to be 8 years old! He was just a little boy of 6 when Tommy passed away and it seems like these last 2 years haven’t happened and then all of a sudden, BAM, Hunter is going to be 8. He isn’t a little boy anymore, he is a little man, a handsome little man, who sits on the couch with his ankles crossed and his hands holded in his lap. I have been watching him lately and I am just amazed at how much he has grown. Of course Ciara’s birthday is coming up in 6 weeks and she will be 10. We were always told that she has a severe case of Sanfilippo and she wouldn’t make it past her 10th birthday, and she almost didn’t. We almost lost her a year ago this week, but now she is doing the best she has in a couple of years and I think she will be sticking around with us for a few more years, God willing. Now how can I not think about Tommy, my little funny face. He would be 6 years old now and I wonder what he would look like. The other day one of the firefighters asked me if we were going to have a party on Tommy’s birthday this year and I think we might just to that, I think I am ready. Anyway, on with our day. Not much to report, John is doing an overnight haul so it’s just the kids and myself and with the weather like this, I don’t feel like taking the kids out so we just stayed home. Ciara has been doing very well lately, she has been alert and sitting up and it is wonderful to just watch her. We watched cartoons, of course, and played around, Hunter is very silly, and that was pretty much our day!
FRIDAY’S JOURNAL:
Ciara and Hunter were sleepy heads again this morning. They are on Spring Break and taking full advantage of it! Once they finally woke up I hooked Ciara up to the feeding pump and got Hunter some breakfast. Around 12:30 we had Hunter’s IPP meeting which went fast, they usually do because we don’t need much. Actually, there is equipment that we could use for Ciara and Hunter, but our house is so small that we just don’t have the room for it all. So, that means that we have to lift and carry and push and pull, instead of having these items to help out, but what can you do? We are donating some items to the Regional Center so that other people that need them can have them so at least that is a good thing, hopefully they will pick up the items next week. After the meeting we watched a little TV and goofed around. John isn’t coming home again tonight so we will just stay home and not do much of anything.
SATURDAY’S JOURNAL:
The kids just didn’t want to wake up this morning so once they finally got up, I fed them and we were out of the house. I picked up my mom and we went to drop some things off for the sister. On the way back I ran into the store and then we went home. Hunter was very happy to get out of the house but as soon as we got back home, he started crying again. I just think that he is having “cabin fever” because it has been raining so much and John hasn’t been home much so I haven’t taken the kids out. After a few minutes I gave him some juice and put on cartoons and he calmed down. John won’t be home until midnight so we just relaxed for the rest of the day. Ciara and Hunter were both a little fussy in the evening and they hadn’t pooped in a couple of days, which has never happened to Hunter before, so I gave them some laxative and hoped that it would kick in before we left in the morning for the air show. I don’t have to have to deal with that mess out there! Well, that was our day, not much to report, but that is good!
SUNDAY’S JOURNAL:
This morning we had to get up early and move fast because we are going to the Air Show in Sacramento. We heard that yesterday the traffic was insane there so we wanted to get there early to miss the craziness. We got there around 9:45 and even though it wasn’t raining and the skies were blue, it was cold! We bundled the kids up with hats, coats and blankets and we into the show. We walked around and looked at the booths and the airplanes for a little bit. Most of you know that John was in the Marines and he worked with the planes so he knew all about the planes there so he was excited. We walked down towards the end of the runway where the BLUE ANGELS were parked and we set up our chairs. There weren’t too many people there yet so I decided to go get something to eat before the lines got too long, of course Hunter was happy with that decision! We took turns sitting with the kids while the other walked around, people were already setting up their chairs behind us so we didn’t feel like wheeling the kids back and forth through everybody. Ciara dozed off and after Hunter ate, he started to doze off too. Our friends, Kim, Tom & SCOTTY met us there just as the show was about to start and it was great! About half way thru the show Tom and I went to get something to eat for everybody and the lines were VERY long! We got in the shortest one and we still waited an hour until it was our turn. Some of the planes that were flying were really cool, the pilots were wonderful, but nothing beats the Blue Angels, they were fantastic! We decided to pack up and start walking back to the car while they were still flying, hoping to beat the traffic out, but no luck. Just as we got to the car the planes landed and everybody flooded out to the parking lot. It took us a while to get out, but we finally did and headed back home, which made Ciara very happy, she wanted to lay down. That was about it for the day, by this time we were very tired!
Hunter's birthday is on March 25 and people have asked me what he wants, so I made a wish list for him, just click here: HUNTER'S WISH LIST. He is wearing a size 8, but 8/10 is too big for him, and pants must have elastic in the waist. He loves Barney, teletubbies, Dragon Tales, etc. Just keep in mind that he chews on everything so please, nothing with small pieces. THANKS!
I also set up an Active Giving account so please check it out by clicking here: ACTIVE GIVING
Hugs To All, and ^^Angel^^ 
Tuesday, March 14, 2006 1:32 AM CST
Our little Sanfilippo friend, Graci, is entered in a contest and she needs your votes. Please take a moment to vote for her by clicking here: VOTE FOR GRACI
SUNDAY’S JOURNAL:
After the kids woke up this morning I made breakfast and then John went to the fire dept to study and the kids and I stayed home and watched some movies and cartoons. Ciara is having a great day today and Hunter was very happy too. A few hours later John came home and then around 5:00 we put the kids in the car, stopped by my mom’s to drop off something and then we got a bite to eat, went to the grocery store and back home. After the kids were settled down and watching Barney, John and I went into the hot tub and it was wonderful! We had to keep peeking in the window so make sure the dog was OK, she has been vomiting all over the house today and now my carpet cleaner needs charging and I can’t find the cord so hopefully she is done for the night. After we got out I fed Ciara and Hunter watched some more Barney. Around 11:30 tonight Ciara was in her recliner and she was went crazy, she was flailing about, laughing and having a great time, she is so funny! Hunter was a little crabby and crying and he wouldn’t go to sleep so I gave him some Tylenol and now he is happier and watching Teletubbies. John just left for a vehicle accident and I am going to try and get some sleep.
MONDAY’S JOURNAL:
We all had a slow start this morning since the kids are out of school for the next two weeks. We had breakfast and then John left for school early. Mason called and asked if he could come over and play his guitar for me. He used to take lessons but stopped for a while and has now started lessons again and he is very excited about it. I picked him up and he played about 10 songs, mostly classical rock but a few current rock songs and I was surprised at how good he is. After his mini concert I popped a pizza in the oven and he and Hunter had lunch, then I drove him back home. In the evening Hunter started whining and I have no idea what was bothering him, but Ciara had a great day. After dinner I put on some cartoons for Hunter and he was a little happier, but still whiny. John came home around 9:00 and that was about it for our day.
TUESDAY’S JOURNAL:
I got up this morning and made John’s lunch and then he left for work. Hunter slept in but Ciara was awake when I got up, but she went back to sleep about an hour later. After I fed the kids Hunter watched cartoons and Ciara still napped until noon. I ran out to the grocery store and then went back home before it starts raining again. I just heard on the news that there is a tornado watch so that should be interesting! I called Mason to tell him to stay home and not run around to his friends houses, I want to make sure I know where he is in this crazy weather. The kids and I had a nice, quiet day and they were both happy. When John came home from work I made dinner and then at 7:00 he had to go to his fire meeting. I gave Hunter some little bites of melons and he got a piece stuck in his throat. He has been choking more often lately so I didn’t freak out at first, but after a few minutes and he couldn’t get it up, I called John and told him to get home right away. Hunter was still getting air, but he just couldn’t cough the melon up. I gave him a drink of water which got him coughing harder and he eventually got it up. Needless to say, no more melons for Hunter! After that he drank his juice and I gave him a soft pretzel and he was happy. I hate to mention this, but it has been about a week since Ciara had those 4 seizures in 12 hours and she has been doing great, I hope she continues to be this happy and alert. I don’t know if it is the Genistein or the new seizure med that is helping, maybe both, but I am so happy that she is doing so great! KNOCK ON WOOD!
Hunter's birthday is on March 25 and people have asked me what he wants, so I made a wish list for him, just click here: HUNTER'S WISH LIST. He is wearing a size 8, but 8/10 is too big for him, and pants must have elastic in the waist. He loves Barney, teletubbies, Dragon Tales, etc. Just keep in mind that he chews on everything so please, nothing with small pieces. THANKS!
I also set up an Active Giving account so please check it out by clicking here: ACTIVE GIVING
Hugs To All, and ^^Angel^^ 
Saturday, March 11, 2006 11:11 PM CST
THURSDAY’S JOURNAL:
Ciara had a very mild seizure last night but she wasn’t acting “normal” when she woke up in the morning. I decided to keep her home from school today, just in case she had another one and it’s a good thing I did. I had just put Hunter on the school bus and literally 2 minutes after I walked back into the house, Ciara had another seizure, again it was a fairly small one that only lasted a few seconds. A little while later she had another one and then at 10:30 she had a very large seizure and she stopped breathing and her mouth turned blue and I thought she was going to bite thru her tongue. It just breaks my heart she this happens to her! As the seizure started to end, she started to breath again but she was still very out of it for the rest of the day, 4 seizures in 12 hours will do that to a girl! Hunter and Mason came home from school around 1:00, today and tomorrow are minimum days at school and then they are out for two weeks. After a couple of hours I took Mason home and then in the evening I was surprised when John came home, he was supposed to be on an overnight haul, but something happened at the plant so he came home. That was about it for today, craziness in the morning and a nice, calm evening.
FRIDAY’S JOURNAL:
Ciara woke me up this morning because she was “talking” to I don’t know who, but it was so cute! I got Hunter up and dressed and off to school, then I hooked Ciara up to the feeding pump and got myself something to eat. Ciara has a doctor’s appointment this morning so that’s why I kept her home from school. On the drive there, Ciara kept “talking” to me and she didn’t stop once we got there. The doctor was also happy to hear her talk, we love Dr. Makram, she is wonderful! Ciara’s blood pressure was great, her lungs sounds good and so does her heart so that was all wonderful news. We got a prescription for some seizures medication so hopefully it will help and Ciara won’t have too many more seizures. I also asked about getting a little oxygen tank for the house and the doctor agreed so it should hopefully be here Monday or Tuesday. That will make me feel much better if something happens and John isn’t home. After the appointment we had to rush back home because Hunter gets home from school today at 1:00. When we got home, Mason was already there watching TV and the bus came a few minutes later and the driver said that Hunter had a great day. I put the kids in the car and we went up to drop off some things for my sister. The weather is crazy today, it was raining, hailing and snowing while we were driving, which made Mason excited! When we got back to Ione I took Mason home and then the kids and I didn’t do much for the rest of the evening.
SATURDAY’S JOURNAL:
I didn’t wake up until 9:30 this morning, that was wonderful! Hunter woke up around 11:00 and Ciara didn’t wake up until 1:30 so I had a very nice morning! After I fed Hunter and hooked Ciara up to the feeding pump, we watched some TV and just goofed around. Hunter has been keeping me on my toes lately! I had started them back on the Genistein (soy) a week ago and boy can I tell a difference! Hunter is so much more mobile, he is all over the house instead of bouncing across the couch all day. Ciara has been more alert and focused which is also wonderful to see! This afternoon I had put Ciara on the floor with a pillow and blankets and then went to use the computer. I was only in the other room for about 5 minutes when the phone rang. I went out to get the phone and almost fell over, Ciara was sitting up on her knees, straight as a board and just looking around. I couldn’t believe was I was seeing, she hasn’t been able to do that in so long, she is usually a rag doll! I got a picture of her so check out the new pictures I posted tonight. John came home in the evening so we watched a little TV and then John took Ciara into the hot tub, she really liked that.
Hunter's birthday is on March 25 and people have asked me what he wants, so I made a wish list for him, just click here: HUNTER'S WISH LIST. He is wearing a size 8, but 8/10 is too big for him, and pants must have elastic in the waist. He loves Barney, teletubbies, Dragon Tales, etc. Just keep in mind that he chews on everything so please, nothing with small pieces. THANKS! I also set up an Active Giving account so please check it out by clicking here: ACTIVE GIVING
Hugs To All, and ^^Angel^^ 
Thursday, March 9, 2006 9:44 AM CST
THURSDAY 8:30 PM UPDATE: Ciara hasn't had anymore seizures since this morning and I have a doctor's appointment for her in the morning. I am going to get her on some seizure meds and try to get an oxygen tank for our house.
THURSDAY 10:45 AM UPDATE: Ciara just had seizure #3 for today and it was a doozie! She wasn't breathing and her little mouth turned blue. Today is a half-day at school so Hunter will be home early and if she has another one, I am taking her to the hosptial so please pray that she doesn't have any more!
THIS WEEK’S JOURNAL:
Sorry I haven’t updated for a week but things have been a little hectic and I am just exhausted lately so I just haven’t felt like doing it. Ciara and Hunter have been doing very well this past week, Ciara has been very alert and happy. She has actually been able to hold a toy in her hand all by herself which she hasn’t been able to do in over a year so that was exciting for me to watch her. She has also been pooping 1-2 times a day with any help from meds, only a can of prune juice every day. She used to only go 1-2 times a week so that is a big reason why she has been happy lately! Hunter’s week started off a little grumpy, but he seems to have calmed down the past couple of days. He has choked a few times when he was eating so I am watching him very carefully, sometimes he just has a bad day can can’t swallow some things, but he usually does just fine. On Thursday night we had the pizza take-over to help raise some money for the fire dept and that went pretty good. The kids had a good time, but Ciara started getting uncomfortable from sitting up that long so I took them home. Of course as soon as I got home there was a structure fire by the golf course so all of the guys left the pizza take-over and went to put out the fire. I felt so bad because that left only two women there to do everything at the pizza place, but I just wasn’t going to load up the kids and drag them back there, but I felt bad. This weekend I took the kids up to see my sister and they loved it. Hunter always laughs his head off when he sees her, it’s really funny. Ciara even sat up straight all by herself in a chair out on the deck, I was surprised to see her to that. She must have sat there for 15-20 minutes without flopping around! On Tuesday night we had our fire dept dinner/meeting so I made a lasagna and garlic bread and we headed over to the fire dept. A friend of ours was in town, he works for CDF and was out here at the CDF Academy for a class so he came to have dinner with us. His son also has MPS and you can visit his journal by clicking here: MARCUS' JOURNAL. Last night, Wednesday, Ciara had a weird seizure, she has been having seizures for 4 years, but I hadn’t seen one like this before, it was interesting. She had another seizure-type incident this morning and just had a “normal” seizure a couple of minutes ago as I was typing this, good thing I kept her home from school today. I have a feeling it is going to be one of those days with her so you might want to check back again later to see how she is doing. I am also going to call her doctor to see if I can get an oxygen tank for the house, I think it is getting time to start thinking about the “what ifs” and I would just like to be ready when something happens. (Knock on wood!) Hunter's birthday is on March 25 and people have asked me what he wants, so I made a wish list for him, just click here: HUNTER'S WISH LIST. He is wearing a size 8, but 8/10 is too big for him, and pants must have elastic in the waist. He loves Barney, teletubbies, Dragon Tales, etc. Just keep in mind that he chews on everything so please, nothing with small pieces. THANKS!
I am going to put up some new pictures later today so check back this evening!
Last week I had asked for prayers for Adriana, I just wanted to let you know that she gained her angel wings yesteray. You can visit her journal by clicking here: ADRIANA'S JOURNAL
Hugs To All, and ^^Angel^^ 
Wednesday, March 1, 2006 11:08 PM CST
WEDNESDAY AM UPDATE: Knock on wood, but everybody is doing great here. I just wanted to let you know that I will updating the journal late tonight so check back again in the morning, thanks!
Please say a prayer for out little friend Adriana. She is on a vent and unable to breath on her own. It has come to the time where her parents need to make a horrible discision, one none of us should have to make. You can visit her journal by clicking here: ADRIANA'S JOURNAL
THURSDAY’S JOURNAL:
On Thursday morning I packed up the kids and the car and we were off to Disneyland! John was already working down south so I picked him up in Bakersfield and then we headed to Disney. Ciara and Hunter did great on the trip but they were very happy to get to the hotel room. Hunter jumped on the bed and watched some cartoons while Ciara stretched out on the bed and relaxed. Later in the evening we went out to dinner and then back to the hotel for the evening.
FRIDAY’S JOURNAL:
On Friday it was time for Disneyland! We met up with another MPS family, the Slawsons SLAWSON'S JOURNAL, and we were off to have fun. I wasn’t sure how Hunter was going to be because he is afraid of the dark, of water, of loud noises and large groups of people, but he did wonderful! The first ride we went on was the Jungle Cruise and he sat at the front of the boat and didn’t cry so that was amazing. Next we went on the Pirates Of The Caribbean and he held my hand at first, but by the end of the ride he wasn’t holding my hand and he never cried so I was stunned! So, we rode all of the rides and he and Ciara had a great time, Ciara really liked the kiddie rides, lots of bright things for her to look at. We stopped for some lunch and then continued to ride. We left the park around 4:30 and went back to the hotel so that Ciara could lay down for a while. We picked up some fast food on the way to the hotel and then around 8:00 we headed back to Disneyland to watch the fire works. Again, Hunter usually freaks at fire works, but he did great and really enjoyed watching them, of course the juice and popcorn kept him busy too! Ciara was fussing a little, I think she was sitting too much today, so John took her out of her wheelchair and help her in his lap and she really liked the fire works too. After it was over we went back to the hotel for the night.
SATURDAY’S JOURNAL:
Today is National MPS Day!!! It is a day to remember and celebrate all of the children with MPS, that is why we came down here to LA to spend this special day with other MPS friends. We got a late start this morning, we were exhausted, so we didn’t get out of the hotel until almost noon. We headed to Hollywood because I wanted to see Grauman’s Chinese Theater and the Walk Of Fame, yes the typical tourist stuff, not to mention it was free! It was fun walking up and down looking at the stars, but when we got to the theater, it was insane! There were characters walking around and a ton of people there, it was hard to walk around the handprints with the wheelchairs. I was surprised that the actors from way back when all had tiny feet, I know I wear a size 7 ½ and my feet were bigger then Roy Rogers and a bunch of others. We also went into the Kodak Theater which is where the Oscars will be held next week so that was cool. Of course Hunter and I shared some chocolate from the candy store they had there, yummy! By this time it was around 3:30 so we decided to head back to the hotel so that I could feed Ciara and she could lay down before we went over to the Slawson’s house this evening. Of course I couldn’t come to Hollywood without stopping at my favorite bakery so we made a quick stop at the LaBrea Bakery and got some sourdough bread. After we rested for a couple of hours Hunter was getting mad because he was hungry so we stopped to get some dinner and then went over to Tami’s house and Gabbi and her kids were there also, they are another MPS family, REILENE & NIKKOLAS'S JOURNAL. Ciara went to sleep not long after we got there, but Hunter was having a great time, he really likes being around other kids. We all talked and laughed and had a great time. Before we left we all did a balloon release, purple balloons of course, in honor of all of the MPS children. Before I let my balloon go I talked to Tommy and then sent him my balloon. Apparently Tommy was right with us because my balloon didn’t go anywhere but a few feet above my head, in a tree, and it just sat there. I just laughed and I knew Tommy had a hold of it, he was there with us. It was late so we went back to the hotel and went to bed.
SUNDAY’S JOURNAL:
John has to work today so we were up and out of the hotel by 7:30 and headed to Bakersfield. After we dropped John off at his work the kids and I were on our way home. We only made one stop to get Hunter some lunch and I fed Ciara and then we were on the road again. About an hour before we got home it started raining hard so we were all happy when we got home and Hunter had his cartoons and Ciara got to lay down. That was about all we did today, took it easy for the rest of the evening and John didn’t get home until midnight or so.
MONDAY’S JOURNAL:
I was very happy to send the kids off to school this morning! Boy am I exhausted! John and I ran out to the store and then came home and did a few errands before Ciara and Hunter came home. They both had a good day at school, but Hunter was a little grumpy, I think he is still tired. Mason came over after school and a little while later John went to the dump and I took Mason home. In the evening we had dinner and watched some TV, again, not much to report today.
TUESDAY’S JOURNAL:
I was surprised to see Hunter awake and watching cartoons at 5:30 this morning when I woke up. He was smiling and happy, but after I made his lunch and fed Ciara, it was 6:45 and he was just falling asleep, of course he wasn’t happy when I woke him up and got him dressed. After they were on their way to school I popped my breakfast in the oven and then the fire dept pager went off for an accident, so I took my food out of the oven and we took off to the fire dept and went out on the call. You all know that John is on the fire dept and I think I have mentioned it before, I am the fire dept photographer. After we got back home I made my breakfast, again, and then we did a little quick cleaning up because the channel 10 news is coming in the morning to do an update on us. The kids came home from school around 3:00 and Mason came over again too, but he didn’t stay long because he had a ton of homework. Sorry to say, but it was another boring day at the Bennett house, but like I have said before, we like boring around here!
WEDNESDAY’S JOURNAL:
I didn’t send the kids to school today so that they could be home when the news crew got here. It was nice to see Alicia and Brandon again, we haven’t seen them since before we took Tommy to Duke. The interview went great and it will air tomorrow at 5:00 so watch for us! Alicia, thank you so much for thinking about us, it really means a lot to us that you all still care! After they left John went to school and the kids and I took it easy for the rest of the day. In the evening Hunter seemed to have a melt down, he was screaming and crying and I have no idea why. I fed him, gave him juice, changed his diaper and gave him some Tylenol and he calmed down for a little bit, but then the melt down continued, of course Ciara slept thru all the noise! John wasn’t supposed to be home until 11:00 so I was surprised when he came home at 8:00, he was exhausted too. We played a couple games of Nintendo and then we were off to bed for the night.
Tonight, Thursday, don’t forget to watch the channel 10 news, they will be airing our story at 5:00! Here is a link to their website, hopefully the story will be up there this evening! CHANNEL 10 NEWS WEBSITE
Today, Thursday, the Ione Fire Dept is having a pizza take-over at Frank A’s Pizza. For more information you can click here: PIZZA TAKE-OVER INFO
Hugs To All, and ^^Angel^^
Thursday, February 23, 2006 9:07 AM CST
WEDNESDAY 12:00 UPDATE: Channel 10 News just left and our story should be on tomorrow at 5:00. If that changes I will let you all know. 
WEDNESDAY 7:00 AM UPDATE: Channel 10 News will be here this morning to do an update story about the kids and how things are going since Tommy passed. I am assuming it will air tonight, but I will update again after they leave and let you all know for sure.
Things have been going well this past week. Ciara is doing very well, although she did have a itty bitty seizure at school yesterday, but it was only 4 seconds and she was happy and alert as soon as it was over. Last night she was chattering away so she was in a good mood. Hunter has been grumpy this week, he did have diaper rash so I know that was part of it, but that’s gone and he is still a little grumpy. We are leaving in an hour for Disneyland!!! My friend Tami got some tickets donated for us so we are off to see Mickey! I will update again with pictures when we get back!
Saturday, February 25, is National MPS Awareness Day so everybody PLEASE wear something purple on that day. Take a few minutes to stop and honor all of our little ones who suffer from this horrible disease and to remember Tommy and all of the others angels that we have lost. We will be spending the day with some MPS families in Los Angeles so I know it will be a special day.
In honor of National MPS Awareness Day, the National MPS Society will ring The NASDAQ Stock Market closing bell along with representatives from BioMarin Pharmaceutical, Genzyme Corporation and Shire Human Genetic Therapies. The Market closing can be viewed on the NASDAQ web cam at NASDAQ WEBSITE Scroll to the bottom of the page and click on MarketSite Web cam. Viewers must have Windows Media Player to view the website cam, which is available for downloading from this site. We encourage you to access the web cam at 3:45pm EST. The Market Close is available from 3:50pm; the Market closes at 4:00pm EST.
The Channel 10 News will be coming here on Wednesday to interview us so I will let you know if it will air on Wednesday or other time so check back!
Hugs To All, and ^^Angel^^
Wednesday, February 15, 2006 11:15 PM CST
Since there wasn’t any school on Monday, the kids and I stayed home for the day, John went to school. Ciara and Hunter both seem to be doing well, Ciara’s spine is still a little swollen but it is slowly getting better. Tuesday was Valentine’s Day so John and I went out to breakfast after the kids left for school. After breakfast we went over to the school to drop off their Valentine’s and some cupcakes for the party. Both kids had a good day at school, but Ciara did sleep thru the party. Mason came over for a little while and then I took him home. On Wednesday John got home from work early so we went to Sacramento to pick up a couple of things, then he went on to school and I went back home. Mason called and said that he was home sick today so I stopped by to see how he was doing. I was only home a few minutes when the kids came home from school. They had Ciara on the wheelchair lift and couldn’t get it to go down so they had to call for somebody to come fix it. Of course Hunter wasn’t happy about having to wait, but he calmed down once we finally got them off the bus and in the house with juice and cartoons. We were supposed to go to a birthday party after school, but by the time I got the kids in the house and settled down, I just didn’t feel like going out again, not to mention I have a toothache. Well, that was it for the past few days. Kind of boring, but we like boring around here! 
Channel 10 News called me yesterday and said that they were interested in doing a follow-up story about the kids. I will keep you all posted on if/when it will happen.
Hugs To All, and ^^Angel^^ 
Sunday, February 12, 2006 4:00 AM CST
TUESDAY’S JOURNAL:
Ciara woke up around 5:00 this morning just giggling and talking up a storm, it was so cute. I sent the kids off to school and I fell back asleep and didn’t wake up until noon. I have been fighting a bug and I guess I needed the rest. Ciara and Hunter were both happy when they came home from school so I got Hunter some juice and he and Ciara relaxed and watched cartoons until Mason came over. Mason stayed for an hour and then I took him home. Tonight is the fire dept dinner/meeting so I took the kids over there and John met us there when he got off work. We stayed there for a couple of hours and then went back home. We watched a little TV and then went to bed.
WEDNESDAY’S JOURNAL:
After we sent the kids off to school, John and I went out to breakfast. When we got back home John took the dog for a walk while I went to the fire dept for some training, then John left for school around 1:00. When the kids came home and Mason walked over after school, I just couldn’t stand to look at Hunter’s hair any more. So Mason stayed with Ciara while I took Hunter for a haircut, boy did he need one! As usual people stopped to watch and giggle while Robin and I wrangled Hunter as he flailed about screaming. When it was all said and done, I took Mason home and then flopped in the reclined and took a break. In the evening we had dinner, watched some TV and went to bed, I was still feeling tired.
THURSDAY’S JOURNAL:
As usual I sent the kids off to school. I ran a few errands and then I went to the school for Hunter and Ciara’s IEPs. Everything went well and I was out of there in an hour. John isn’t coming home tonight so the kids and I didn’t do a darned thing for the rest of the day.
FRIDAY’S JOURNAL:
Kids had a good day today and Ciara has been much happier this past week. John came home early today and then went on several calls for the fire dept so he didn’t get back home until 5:00 or so. Mason came over after school for a couple of hours and then I took him home and started dinner, we had tacos, yummy! Later in the evening we decided to get in the hot tub so we got the kids ready, but when I got in, it was too hot, somehow we had hit the button and it was 102 degree, Ciara likes it at 99-100. So, we didn’t take them in, but we went in. Ciara and Hunter watched Barney and Hunter had a bowl of popcorn so he was happy as could be. That was about it for the night.
SATURDAY’S JOURNAL:
John is doing another overnight haul so I took the kids to their cousin’s birthday party. It was at a gymnastics center and Hunter liked to jump on the trampoline and the slide. Ciara liked the slide too and she really liked to watch the other kids when they were playing with the rainbow colored parachute. After the party we went home and watched TV and then had dinner. Hunter fell asleep around 10:00 and Ciara around midnight or so. Around 3:00 I woke up because I heard her breathing funny. She just didn’t look right, her arms were straight out in front of her and stiff and she was breathing very loud and gurgly and her mouth was small. She looked like she was about to have a seizure or had just had one. But I was scared because of her breathing, it didn’t seem like she was getting any air. I tried to suction her but I couldn’t get anything and I gave her some Benedryl to hopefully clear up what was in her nose or throat. After about 10 minutes I called John and talked to him and we both agreed that I should take her to the Emergency Room. I called a friend to see if I could drop Hunter off at their house, but nobody answered. I got dressed and it was about that time that her breathing started to calm down. Slowly her arms relaxed and she moved her head around. I think she had just had a seizure right before I woke up and she was finally coming out of it. This was all about 20 minutes ago, it is now 3:30, and she is breathing normally again so I don’t think I will take her to the ER, at least for now. Please pray that she doesn’t have any more seizures today!
and ^^Angel^^ 
Monday, February 6, 2006 11:13 PM CST
THIS WEEKEND’S JOURNAL:
After I sent Hunter off to school on Friday I had to take Ciara to the doctor. Her spine is very swollen and ugly and I want to see if there is something wrong or if it is just from rubbing against her wheelchair when she had the seizures a few days ago. After the doctor looked at her back he said that he might admit her to the hospital and put her on IV antibiotics, but he wanted to do an xray first to see if the bone was infected or if there was something else going on. Ciara did very well during the xray, I was surprised. We went back up to the doctor’s office and he said that the xray looked great so we could go home. He put her on oral antibiotics just in case something was starting and then we went home. Ciara’s other problem is that she hasn’t had a BM in days and I have been giving her laxative and it isn’t working. I am sure that is part of what is bothering her, even the doctor saw the poop in her xray. That was about it for the rest of the day, we just stayed in, Mason came over for a while and we just tried to keep Ciara off her back as much as possible, which is hard because she doesn’t like to be on her side. On Saturday we didn’t do much, Ciara is still whining and cranky, but we did have to run to Wal-Mart to pick up a few things. I also bought an inflatable doughnut, the kind you sit on, to put behind her back so that her swollen spine doesn’t rub on anything and hopefully it will heal faster. Hunter did good thru the whole store, but right when we were getting ready to check out, he started crying because he had done a lot of walking and just couldn’t walk anymore so John took the kids out to the car while I finished checking out. Ciara and I went to visit my sister while John and Hunter went to his dad’s to watch the super bowl. After I dropped Mason and my mom off at their houses I went up to get Hunter and then I took the kids home. John came home after the game and we went in the hot tub. Hunter was happily watching Barney so I didn’t take him in, but Ciara went in for a little bit. A few hours later she was so happy that she started kicking and flailing around in the recliner, just laughing and giggling, it was so funny. She has been so uncomfortable lately and whines a lot so it was wonderful to see her happy again. Monday morning Ciara finally had a BM at school so she was feeling much better when she came home in the afternoon, a happy little girl. In the morning we had to take the car to Stockton to have it serviced to Kim, Scotty’s mom, met us there and while they were working on my car, we went to the Super Wal-Mart and did some grocery shopping. It always amazes me how much cheaper things are there then at the grocery store where we live, everything is half the price. Thanks for the ride Kim! After they finished our car we had to get home so that John could go to school. When the kids came home I got them settled down and then Mason came over for a while and that was about it for the rest of the night. 
I put up some pictures of Tommy so check them out!
Hugs To All, and ^^Angel^^ 
Friday, February 3, 2006 9:31 AM CST
SATURDAY UPDATE: Ciara is doing OK. At first the doctor thought that the bone in her spine might be infected and if that were the case they would keep her overnight for IV antibiotics, but the xrays look great so they let her go home on oral antibiotics. We have to keep her off her back to keep the pressure off her spine so that the swelling will go down but she doesn't like that at all. Today I bought one of those inflatable doughnuts that you sit on, I put it behind her back so that she can sit up and the swelling on her spine will not be touching anything. She is uncomfortable because she hasn't pooped in several days so that is what is bothering her now. I will keep you all posted on how she is doing and thanks for checking in. 
THIS WEEK’S JOURNAL:
This weekend was a fun weekend for the kids. Saturday John wasn’t home so I took the kids shopping and that was about it for Saturday. On Sunday they went to a birthday party. Hunter ate a lot and Ciara really liked the chocolate cake! On Monday everything seemed to be OK, nothing out of the ordinary to report. Tuesday evening we went to the fire meeting, but I left early and took the kids home. We watched some TV and then they went to bed. Around midnight Ciara had another big seizure. I think it is time to put her on some anti-seizure medication. She had been doing so good, but lately she has been having more and they have been getting bigger. So, I didn’t send her to school on Wednesday because I wasn’t sure if she was going to have any more like she did last week, 4 seizures in one day. Luckily she didn’t have any more and she had a very good day, she was happy and very alert. Yesterday I was getting the kids ready for school and putting them in their wheelchairs. After a few minutes Ciara started getting fussy and by the time the bus got here she was screaming, which she never does unless she is in a lot of pain. There was no way I could send her to school like that so I took Hunter out to the bus and John got Ciara out of her chair and put her on the couch. I wasn’t sure what was bothering her, but once she was on the couch, she was happy and went right to sleep, for 3 hours. For the rest of the day she wasn’t crying, but she was mumbling a lot. Later in the evening I noticed that her back was very swollen and now it was turning a dark color. Last week when she had those 4 seizures, that evening I noticed that her spine on her lower back was swollen. Once in a while she will get a sore there from rubbing against her wheelchair or whatever, so I just assumed she irritated it during the seizures. After a couple of days it started looking better, but now it is really ugly, but the skin isn’t broken so I’m not sure what is going on. It is now Friday morning and I just sent Hunter off to school and Ciara has a doctor’s appointment this morning so hopefully we will find out what the problem is and she will not be hurting anymore.
Hugs To All, and ^^Angel^^ 
Friday, January 27, 2006 11:53 PM CST
SUNDAY 11:00 PM: I just put up some new pictures so check it out!
TUESDAY’S JOURNAL:
Ciara looked really good this morning when I put her on the school bus, but not long after she got to school she had a couple pretty big seizures and she even stopped breathing during one of them. She had another one in the afternoon so I brought her home from school. Mason came over around 3:00 when he got out of school and he was sitting next her when she had a 4th seizure and it scared him, he hasn’t seen her have one before. Thank God that was the last one she had, poor little thing! By the evening she was happy and smiling but she was still tired and very sleepy, that was a lot for her little body to handle. On a good note, we finally got the new hot tub hooked up today so we will be able to get in it tomorrow!
WEDNESDAY’S JOURNAL:
Even though Ciara was looking very good this morning, I decided to keep her home, just in case. After I sent Hunter off to school, John stayed with Ciara while I ran to the grocery store , then I made breakfast and John went to work. Ciara woke up this morning with a smile on her face and has been smiling all day long. She usually sits with her legs pulled up to her chest, but after a seizure she usually stretches them out in front of her and that is what she has been doing all day. Boy does she have some long legs on her! When John came home from work he had to leave right away for school and won’t be home until 11:00 tonight. When Hunter came home from school he was crying on the bus, apparently he slept the whole ride home and wasn’t happy that they woke him up. Mason came over after school and we played some video games and then I took him home. Since John was at school until late tonight, the kids and I didn’t do much of anything for the rest of the evening. Ciara continues to do great, she is so alert and happy, she constantly has a little grin on her face, she is just the cutest little thing!
THURSDAY’S JOURNAL:
I sent Ciara to school this morning, along with Hunter. After they left, I ran to the grocery store and John was already home when I got back. Apparently his truck needed engine work so he had the rest of the day off. When the kids came home from school we took them in the hot tub for the first time. Now most of you know that Hunter is terrified of water so I wasn’t sure how he was going to do, but he did great. As long as John or I were sitting next to him and he could hold out hand, he was fine, he even smiled a few times and was playing with his truck. Ciara was so funny when we put her in the tub. Normally she is curled up with her knees pulled up to her chest, Sanfilippo is a cruel disease, but as soon as she got in the water, her legs stretched way out in front of her, she relaxed her back and stretched her body as long as she could and just floated with a big smile on her face. After a few minutes she started kicking her feet and she just had a blast! I can’t tell you how grateful we are to the MPS Society and another wonderful man who sent us a donation which helped buy this for the kids. Since I can’t get Ciara in and out of the hot tub by myself, she can only go in when John is home, but when he is, she will be in there every night. I also ordered some rubber duckies for Hunter to play with when he is in there too.
FRIDAY’S JOURNAL:
Hunter woke up this morning with some junk in his nose and he just didn’t want to wake up, poor little guy. After I sent them off to school I ran out to get some things done and then I went back home. I grabbed a bite to eat and then Ciara and Hunter were home. Mason came over after school and hung out for a while. John is doing an overnight haul so it’s just the kids and myself today. After I took Mason home Hunter and Ciara watched cartoons for a couple of hours and were very happy about it. I made dinner and then it was my turn to watch a little TV. Hunter was a little fussy but I think he is just tired. Ciara sat up in her Tumble Form chair for about an hour tonight and for the first time in a while, I didn’t have to strap her in. Lately she has been tilting to the sit and falls out of the chair, but today she just sat there, straight as a board and very happy. Since she had 4 seizures on Tuesday, she has been looking wonderful and I am so happy!
I am having trouble getting my pictures to download out of my camera again so John will do it when he gets home today. So, I will try to get some new pictures up this evening some time so check back again later!
Hugs To All, and ^^Angel^^ 
Tuesday, January 24, 2006 9:40 AM CST
TUESDAY 3:30 PM UPDATE: Ciara had another very big seizure.
TUESDAY 12:30 PM UPDATE: Ciara had another seizure at school so I just picked her up and brought her home.
TUESDAY 10:00 AM UPDATE: The school just called and said that Ciara had 2 seizures a few minutes ago and she is still not quite out of it yet. Apparently she stopped breathing for a little bit, which has happened before. She is OK now so just pray that she doesn't have any more.
Not much to report for the past several days. Ciara had been acting a little funny. She was flopping to the left side and she looked a little pale to me, but I wasn’t sure. She wasn’t fussy or uncomfortable so I think it was just some neurological thing. Hunter was still fussing a little for a few days and still sucking on his fingers so I think he is still getting a new tooth. On Saturday the MPS Society was having an IEP meeting which has to do with special education and making sure we get our children what they need in school. Since I am very directionally challenged, I drove to Kim’s house in Modesto and then she drove to San Francisco. You may remember that last week we went to lunch with Kim and Scotty, Scotty has MPS-II. There were a bunch of parents there that I already knew and I met a new family. They only live 45 minutes from me and their daughter is 15 years old and has Sanfilippo, her name is Erika. After the meeting we headed back home, it was a 2 hour drive. John and his brother were putting in the new electrical for our hot tub, but something isn’t working right so the hot tub people will have to come out and look at it. I was bummed because I wanted to get in there with Ciara. On Sunday John went over to his dad’s to watch the football game so I took the kids to lunch with my mom, sister, and Mason. Later that night Ciara was laying on the couch and she just started laughing and wiggling around and she was having a great time. It was so nice to see her acting normal again after 4 days of acting funny. Monday when she got home from school she was sitting up a little straighter and when I sent her off to school this morning she was sitting up straight and her eyes her bright and focused again so I was very happy to have her back.
I just thought I would pass on a new website to the rest of the Sanfilippo families. Please stop by and check it out! Sanfilippo Alliance Website
Hugs To All, and ^^Angel^^ 
Wednesday, January 18, 2006 11:31 PM CST
THIS WEEK’S JOURNAL:
On Saturday John was doing an overnight haul so Ciara, Hunter and I met up with my friend Kim and her son Scotty, he also has MPS. We had lunch and talked for about 3 hours, it was a lot of fun! It was raining very hard so after lunch I went back home and didn’t go out for the rest of the day. The kids went to school on Monday and Ciara had a great day. Hunter has been crying and fussy lately and I am not sure why. On Tuesday we got our new hot tub! It isn’t hooked up yet, John has to do some wiring and I think he and his brother are doing that on Sunday so Monday we will be taking the kids in and letting them float around. I will post some pictures after we get it all hooked up so check back for those. Wednesday evening I noticed that Hunter was chewing on his fingers which he rarely ever does. He was crying too so I think he is getting a new tooth, but I am afraid to look in there, he will bite me for sure! On Saturday I am taking the kids to San Francisco to an MPS meeting about education. We are going with Kim and Scotty and meeting up with a bunch of our MPS friends so that will be a lot of fun. Depending on the weather, we might go to Pier 39 and Fisherman’s Wharf. Well, that’s about it for now, things have been going very well lately and I hope I didn’t just jinx myself!
Here are some pictures that Kim took from when we went to lunch with Kim and Scotty, Lunch Pictures. You can also visit Scotty’s website by clicking here: Scotty's Journal
Hugs To All, and ^^Angel^^
Friday, January 13, 2006 10:13 AM CST
TUESDAY 7:00 AM UPDATE: I will try to update the journal this evening. Thanks to a VERY generous person and the MPS Society, Ciara and Hunter's new hot tub is being delivered today! I don't think we will actually get it hooked up until this weekend, but I know that Ciara will love it. Hunter really liked the one at the MPS Conference so I am hoping that he will get used to it and have a great time!
I just wanted to ask you all to pray for a little boy who is in the PICU right now for transplant. He is not an MPS child, but he is very very sick. You can visit his journal by clicking here: MICAH'S JOURNAL
Here are a couple pictures of Ciara’s new wheelchair. It is the Convaid Rodeo Tilt and I love it! and ^^Angel^^ 
Friday, January 13, 2006 10:13 AM CST
Here are a couple pictures of Ciara’s new wheelchair. It is the Convaid Rodeo Tilt and I love it! and ^^Angel^^ 
Tuesday, January 3, 2006 11:18 PM CST
I hope everybody is having a wonderful new year so far! Hunter and I are getting over this bug that has been going around, but so far Ciara hasn’t caught it so I am keeping my fingers crossed! It has been raining very hard here and there has been lots of flooding. We are only three houses away from the creek so I am keeping an eagle eye on it! On New Year’s day we went to John’s sister’s house and on the way we had to drive thru some flooded areas. We have owned a mini van for 7 years and never had floods, but a week after we bought a 4 wheel drive, floods everywhere, so we were thankful for that! The water actually came up to the doors as we were drive thru it, but we made it to Mark and Julia’s for our 2nd Christmas since there were out of town on Christmas. We had lunch, opened presents and then it was time to go, I was still feeling pretty junky and tired. We went home a different route, one that is usually closed for flooding, but I was surprised that it was open. When we got home John went up to his dad’s house to watch the football game and the kids and I relaxed. Hunter fell asleep around 10:00, but opened his eyes for only a few seconds at midnight, smiled and went back to sleep. Ciara was sitting in her TumbleForm chair but she fell asleep. Exactly at midnight, the exact second the big ball came down, she jolted awake, waved her arms and legs and just started laughing and chattering away. It was so funny, how did she know?!
The kids are still out of school this week so I don’t plan on doing too much, especially since the weather is still yucky. On Monday we did take a drive around to check out the flooding and we got to play a little with the 4 wheel drive which was fun and Ciara really seemed to like it, lots of bouncing around. Tuesday night we went to the fire dept dinner/meeting but it was a short one so we got out of there early. Well, that was about it for the past few days. I hope the new year continues on the way it started, with Ciara laughing and happy every day and Hunter jumping and laughing, that will be a wonderful year!
I put up some new pictures from Christmas, but I am still working on getting a picture of Ciara’s new wheelchair.
Hugs To All, and ^^Angel^^ 
Friday, December 30, 2005 11:52 PM CST
This past week Hunter and I have been sick, so it hasn’t been much fun, especially since the kids are out of school. Last week I stopped by the cemetery and brought Tommy a Christmas tree. I was happy to see some new little toys there so I know people still come to see him. On Friday we finally got a new car, you may remember a month and a half ago I had an accident and totaled our van. If anybody is looking to buy a car, you have to go to Big Valley Ford in Stockton and ask for Marty Ferdani. He went out of his way to get us a great deal on the car, we ended up getting it for $5,000 under the Blue Book and we are very happy. On Christmas morning my mom, sister, and Mason came over and we opened presents. Ciara was having a great day, she sat up and was alert and very happy all day long. Hunter was sick and he was very tired, but he did like opening his presents and playing with his new toys. In the afternoon we went to John’s sister’s house to open presents and then have dinner. I had a dream about Tommy, but I can’t really remember what it was about. All I remember is that I brought him back to life, if only that could happen.
Not much really happened for the next few days, Hunter was still sick and he passed it on to me, but so far Ciara seems to be OK so I hope she doesn’t get it. It has been raining here all week so I didn’t take the kids out much. They have both been doing wonderful, they are happy which made it very easy for me the past few days when I was really sick and John was out of town. Tomorrow we are going to John’s other sister’s house for more Christmas presents and lunch and then we will go back home. I don’t think we will be going to tomorrow night for New Year’s, but I did rent a movie so at least I will have something to do.
I am still having trouble getting the pictures to download from my camera but as soon as I can get them out, I will post them for you all so keep checking back.
NEW YEAR'S RESOLUTIONS FOR BEREAVED PARENTS
I Resolve:
That I will grieve as much and for as long as I feel like grieving, and that I will not let others put a timetable on my grief.
That I will grieve in whatever way I feel like grieving, and I will ignore those who try to tell me what I should or should not be feeling and how I should or should not be behaving.
That I will cry whenever and wherever I feel like crying, and that I will not hold back my tears just because someone else feels I should be "brave" or "getting better" or "healing by now".
That I will talk about my child as often as I want to, and that I will not let others turn me off just because they can't deal with their own feelings.
That I will not expect family and friends to know how I feel, understanding that one who has not lost a child cannot possibly know how I feel.
That I will not blame myself for my child's death, and I will constantly remind myself that I did the best job of parenting I could possibly have done. But when feelings of guilt are overwhelming, I will remind myself that this is normal part of the grief process and it will pass.
That I will not be afraid or ashamed to seek professional help if I feel it is necessary.
That I will commune with my child at least once a day in whatever way feels comfortable and natural to me, and that I won't feel compelled to explain this communion to others or to justify or even discuss it with them.
That I will try to eat, sleep, and exercise every day in order to give my body strength it will need to help me cope with my grief.
To know that I am not losing my mind and I will remind myself that loss of memory, feelings of disorientation, lack of energy, and a sense of vulnerability are all normal parts of the grief process.
To know that I will heal, even though it will take a long time.
To let myself heal and not feel guilty about feeling better.
To remind myself that the grief process is circuitous–that is, I will not make steady upward progress. And when I find myself slipping back into the old moods of despair and depression, I will tell myself that "slipping backward" is also a normal part of the grief process and these moods, too, will pass.
To try to be happy about something for some part of every day, knowing that at first, I may have to force myself to think cheerful thoughts so eventually they can become a habit.
That I will reach out at times and try to help someone else, knowing that helping others will help me to get over my depression.
That even though my child is dead, I will opt for life, knowing that is what my child would want me to do.
and ^^Angel^^ 
Sunday, December 25, 2005 8:19 AM CST
We’ve shared our hearts, full of holiday cheer
And shopped for presents for loved ones this year.
The house is dressed up with garland and lights
That sparkle and shine through the holiday nights.
But even with all of this holiday bliss
There’s someone we lost that we terribly miss.
And as this Christmas day draws near
We wish with all of our hearts he was here.
He’s living his life way up past the stars
Somewhere past Jupiter, Saturn and Mars.
He’s spending his Christmas in Heaven, you see
And last night as I slept, a dream came to me.
He was standing before me, happy and well
He said to me, “I have something to tell.
Heaven’s more wondrous then you may believe
It’s the greatest of gifts I could ever receive.
I’d like for you all to remember the good…
You know that I’d be there if only I could.
So don’t feel so bad that I’m not there
There are so many memories that you can share.
As you gather together I’m sure you’ll find
The gifts deep within you that I left behind.
Each one is unique and wrapped brightly with love
They shine from your heart and I shine above.”
A special stocking now hangs from our tree
Filled with our own special memories.
And since we can’t send him an earthly gift
We’re asking God, “Please give him a kiss.”
I see the countless Christmas trees around the world below with tiny lights like heaven's stars reflecting on the snow.
The sight is so spectacular please wipe away that tear
for I am spending Christmas with Jesus Christ this year.
I hear the many Christmas songs that people hold so dear but the sounds of music can't compare with the Christmas choir up here.
I have no words to tell you of the joy their voices bring for it is beyond description to hear the angels sing.
I know how much you miss me, I see the pain inside your heart for I am spending Christmas with Jesus Christ this year.
I can't tell you of the splendor or the peace here in this place Can you just imagine Christmas with our Savior face to face?
I'll ask him to lift your spirit as I tell you of your love so then pray for one another as you lift your eyes above.
Please let your hearts be joyful and let your spirit sing
for I am spending Christmas in heaven and I'm walking with the King.
Merry Christmas From Heaven
I still hear the songs
I still see the lights
I still feel your love on
Cold wintry nights.
I still share your hopes
And all your cares
I’ll even remind you
to please say your prayers.
I just want to tell you
You still make me proud
You stand head and shoulders
Above all of the crowd.
Keep trying each moment
To stay in His grace
I came her before you
To help set your place.
You don’t have to be
Perfect all of the time
He forgives you the slip
If you continue to climb.
To my family and friends
Please be thankful today
I’m still close beside you
In a new special way.
I love you all dearly
Now don’t shed a tear
Cause I’m spending my
Christmas with Jesus this year.
Hugs To All, and ^^Angel^^
Thursday, December 22, 2005 11:58 AM CST
THIS WEEK’S JOURNAL:
Over the weekend Ciara had a few rough days. She was fussy and cried all day and all night for several days. She grabs her head and pulls her hair, I am not sure if she has a headache or pressure from too much fluid on her brain, or something else. I gave her Motrin and Tylenol but it didn’t seem to help. Hunter has been dong very well, he is just a happy little boy and as long as he has a drink with him at all times, he is happy as could be.
John did an overnight haul on Friday so the kids and I just stayed home, the weather has been yucky too. On Saturday I took the kids to Mason’s first basketball game, Ciara still whined and fussed, but Hunter had a great time. John came home in the afternoon and then Mason came over for a while. John’s brother and his nephew stopped by for a little bit with their new puppy, too cute. After I took Mason home we just took it easy, I was just exhausted by this time. Of course Ciara went to bed early, but Ciara cried all night long again and the same thing happened on Sunday night as well, boy am I tired! Monday morning when I got the kids up for school, Ciara seemed happier, she wasn’t fussing so I hoped that it would continue, and it did. She had a good day at school and Hunter did too. For the next few days she didn’t cry like she had been, but every now and then she would grab her head, but not really cry, interesting. I had asked Kaiser a while ago about doing an MRI to check her pressure and to see if there was something going on, but they wouldn’t do it, go figure. Not much happened for a few days, but on Thursday Ciara finally got her new wheelchair. I wasn’t sure if I would like it, but I do. The problem is that it is too small for her. We had ordered it a year ago and it took this long to get and now she has grown so much, that the custom back that they had made for her is too small, her head comes up to the top of the seat, and they had to get extenders for the footrests. So, I think I am going to call them today and find out what I need to do to get the next size. I don’t want to be without this wheelchair, but I don’t want to keep it and have her grow and need to get another one in 6 months either. So, I am not very happy, I don’t want to have to wait another year to get her wheelchair again. But, after they delivered her wheelchair, it was party time at school. Today is that last day of school and it was Jenna’s birthday so the class just partied all day long. They even had pizza delivered for lunch which made Hunter very happy! Ciara had another good day today, but late at night she had a big seizure which lasted a long time, so maybe that was why she had been grabbing her head for the past few days. The last time she did the hair pulling, head grabbing thing for a few days, I think she also had a seizure so I will have to keep track of that and see what happens. We finally got the car situation taken care of, the insurance finally paid off the van that I wrecked a month and a half ago, so now we just have to go find a car that we can agree on, wish us luck!
Sorry I don’t have any pictures to put up yet, I am having trouble getting them to download from the camera. I will let you know when I have put them up.
CHRISTMAS ANGEL TEARS
God sends His lovely angel tears
To us this time of year
They float and tumble through the air
And send out Christmas cheer.
Each flake He sends is special
From out of wintry skies
They paint a pretty picture
To soothe our weary eyes.
They glide and twirl as if to say
The season's just begun
And gently beckon to us
To join in merry fun.
Like sparkling gems, they fill the sky
And quietly take up space
They seem to flow in harmony
Attired in angel lace.
At Christmas time when all is calm
We look to things above
For angel tears and Christmas
To fill our lives with love.
A sacred star shines in the East
As Christmas day draws near
A manger scene, a Holy night
And gentle angel tears.
The children gather 'round the tree
To hear the Christmas story
As angel tears fall to the earth
To trim the earth in glory.
His precious tears drift to the earth
So everyone will know
A child was born in Bethlehem
It's written in the snow.
So if you get to feeling blue
And plagued by worldly fears
Just look outside your window
God's shedding angel tears.
Hugs To All, and ^^Angel^^ 
Thursday, December 22, 2005 11:58 AM CST
THIS WEEK’S JOURNAL:
Over the weekend Ciara had a few rough days. She was fussy and cried all day and all night for several days. She grabs her head and pulls her hair, I am not sure if she has a headache or pressure from too much fluid on her brain, or something else. I gave her Motrin and Tylenol but it didn’t seem to help. Hunter has been dong very well, he is just a happy little boy and as long as he has a drink with him at all times, he is happy as could be.
John did an overnight haul on Friday so the kids and I just stayed home, the weather has been yucky too. On Saturday I took the kids to Mason’s first basketball game, Ciara still whined and fussed, but Hunter had a great time. John came home in the afternoon and then Mason came over for a while. John’s brother and his nephew stopped by for a little bit with their new puppy, too cute. After I took Mason home we just took it easy, I was just exhausted by this time. Of course Ciara went to bed early, but Ciara cried all night long again and the same thing happened on Sunday night as well, boy am I tired! Monday morning when I got the kids up for school, Ciara seemed happier, she wasn’t fussing so I hoped that it would continue, and it did. She had a good day at school and Hunter did too. For the next few days she didn’t cry like she had been, but every now and then she would grab her head, but not really cry, interesting. I had asked Kaiser a while ago about doing an MRI to check her pressure and to see if there was something going on, but they wouldn’t do it, go figure. Not much happened for a few days, but on Thursday Ciara finally got her new wheelchair. I wasn’t sure if I would like it, but I do. The problem is that it is too small for her. We had ordered it a year ago and it took this long to get and now she has grown so much, that the custom back that they had made for her is too small, her head comes up to the top of the seat, and they had to get extenders for the footrests. So, I think I am going to call them today and find out what I need to do to get the next size. I don’t want to be without this wheelchair, but I don’t want to keep it and have her grow and need to get another one in 6 months either. So, I am not very happy, I don’t want to have to wait another year to get her wheelchair again. But, after they delivered her wheelchair, it was party time at school. Today is that last day of school and it was Jenna’s birthday so the class just partied all day long. They even had pizza delivered for lunch which made Hunter very happy! Ciara had another good day today, but late at night she had a big seizure which lasted a long time, so maybe that was why she had been grabbing her head for the past few days. The last time she did the hair pulling, head grabbing thing for a few days, I think she also had a seizure so I will have to keep track of that and see what happens. We finally got the car situation taken care of, the insurance finally paid off the van that I wrecked a month and a half ago, so now we just have to go find a car that we can agree on, wish us luck! Sorry I don’t have any pictures to put up yet, I am having trouble getting them to download from the camera. I will let you know when I have put them up. CHRISTMAS ANGEL TEARS
God sends His lovely angel tears
To us this time of year
They float and tumble through the air
And send out Christmas cheer.
Each flake He sends is special
From out of wintry skies
They paint a pretty picture
To soothe our weary eyes.
They glide and twirl as if to say
The season's just begun
And gently beckon to us
To join in merry fun.
Like sparkling gems, they fill the sky
And quietly take up space
They seem to flow in harmony
Attired in angel lace.
At Christmas time when all is calm
We look to things above
For angel tears and Christmas
To fill our lives with love.
A sacred star shines in the East
As Christmas day draws near
A manger scene, a Holy night
And gentle angel tears.
The children gather 'round the tree
To hear the Christmas story
As angel tears fall to the earth
To trim the earth in glory.
His precious tears drift to the earth
So everyone will know
A child was born in Bethlehem
It's written in the snow.
So if you get to feeling blue
And plagued by worldly fears
Just look outside your window
God's shedding angel tears.
Hugs To All, and ^^Angel^^
Wednesday, December 14, 2005 1:14 PM CST
WEDNESDAY 9:30 PM UPDATE: GOOD NEWS! Ciara is FINALLY getting her new wheelchair tomorrow!!! We ordered it a YEAR ago and it is going to be delivered to her school tomorrow morning. I will post an update and hopefully some pictures tomorrow night!
FRIDAY’S JOURNAL:
After I sent the kids off to school, I ran to Lodi to pick up some papers from John’s work and then did a little Christmas shopping. Ciara and Hunter were both happy when they came home from school and Mason walked over after he got out of school. We watched some TV and the kids had a snack and then I took Mason home. John isn’t coming home tonight so we just took it easy, Hunter watched cartoons and Ciara and I took a nap. Hunter was in a great mood today and laughed all night long.
SATURDAY’S JOURNAL:
I woke up around 7:30 this morning and the power was out. It came back on around 9:30, but Hunter wasn’t happy without a TV! I put a DVD in the laptop to watch, but the battery wasn’t fully charged so when that ran out, I was in trouble. We didn’t do much today, but John came home around 3:30 and then we took the kids to fire dept at 6:00. tonight is the last night of Santa Patrol so my friend is going to take the kids on the patrol and then keep them until we get back from John’s work Christmas party. Once we dropped them off, we were off to the party, the food was great. After the party we headed back home to pick up the kids, they were very good and had a great time.
SUNDAY’S JOURNAL:
We didn’t do anything today, just stayed home. The kids had a great day, both were happy which makes me happy. John has his final test at school on Tuesday so he studied all day. In the evening Ciara was being very silly and she just laughed all night long, until around 2:00 am!
MONDAY’S JOURNAL:
It is cold! Kids went to school this morning and then John and I went to Sacramento. Our refrigerator died so we had to get a new one so while we were in the area, we had lunch with his sister. After lunch we had to rush home to get the kids off the school bus. They were both happy and had a good day. Mason came over for a little bit, but then I took him home and John went to study. That was about it for the day, we had dinner, watched some TV and went to bed early.
TUESDAY’S JOURNAL:
After I sent the kids off to school, I grabbed a quick bite to eat and then headed out to get a few things done. After I finished with that, I went over to the Elk’s Lodge. Every year they have a Christmas party for the special needs kids and they all get presents from Santa, it was fun. I couldn’t stay long because I still had to help set things up for the fire dept Christmas party this evening. John had his last day of school today so when he got home he took Ciara up to his dad’s for a visit and I took Hunter to the fire dept with me. We wrapped the presents for the kids and set up and decorated for the dinner tonight. Around 5:00 I went home to feed Ciara before the party and we headed back around 6:00. It was a lot of fun and Hunter ate a ton and Ciara had the best time out of everybody there! She was smiling and laughing the whole time! We had 3 pinatas and it got a little crazy in there with all of those kids which scared Hunter a little, but he did great and got some candy too. When Santa arrived, he gave Ciara her present in her lap and she just went insane! She looked like she was riding a bronco, she was kicking her legs, waving her arms, rocking back and forth and just laughing so hard, it was hysterical! I think we got back home around 9:00 and everybody went to bed early.
"THE TWELVE DAYS OF CHRISTMAS" with a twist (I got this from Lindsey's Journal)
On the First day of Christmas, the good Lord gave to me…
A child with a disability.
On the Second day of Christmas, the good Lord gave to me…
A heart full of love for my child with a disability.
On the Third day of Christmas, the good Lord gave to me…
An ache in my heart, and a heart full of love for my child with a disability.
On the Fourth day of Christmas, the good Lord gave to me…
A tear in my eye, an ache in my heart, and a heart full of love for my child with a disability.
On the Fifth day of Christmas, the good Lord gave to me…
An unsuspected strength for the tear in my eye, and the ache in my heart, and my heart full of love for my child with a disability.
On the Sixth day of Christmas, the good Lord gave to me…
A ray of hope, an unsuspected strength for the tear in my eye, and the ache in my heart, and my heart full of love for my child with a disability.
On the Seventh day of Christmas, the good Lord gave to me…
A sense of humor, a ray of hope, an unsuspected strength for the tear in my eye, and the ache in my heart, and my heart full of love for my child with a disability.
On the Eighth day of Christmas, the good Lord gave to me…
Supportive family and friends, a sense of humor, a ray of hope, an unsuspected strength for the tear in my eye, and the ache in my heart, and my heart full of love for my child with a disability.
On the Ninth day of Christmas, the good Lord gave to me…
Remarkable teachers and caregivers, supportive family and friends, a sense of humor, a ray of hope, an unsuspected strength for the tear in my eye, and the ache in my heart, and my heart full of love for my child with a disability.
On the Tenth day of Christmas, the good Lord gave to me…
An appreciation of small accomplishments, remarkable teachers and caregivers, supportive family and friends, a sense of humor, a ray of hope, an unsuspected strength for the tear in my eye, and the ache in my heart, and my heart full of love for my child with a disability.
On the Eleventh day of Christmas, the good Lord gave to me…
A sense of pride and joy, an appreciation of small accomplishments, remarkable teachers and caregivers, supportive family and friends, a sense of humor, a ray of hope, an unsuspected strength for the tear in my eye, and the ache in my heart, and my heart full of love for my child with a disability.
On the Twelfth day of Christmas, the good Lord SAID to me…
“Reach out and share” your sense of pride and joy, your appreciation of small accomplishments, your remarkable teachers and caregivers, your supportive family and friends, your sense of humor, your ray of hope, your unsuspected strength for the tear in your eye, and the ache in your heart, and your heart full of love for your child with a disability.
and ^^Angel^^
Thursday, December 8, 2005 8:18 AM CST
TUESDAY AM UPDATE: I am going to update the journal this evening, after we get home from the fire dept christmas party so check back again later!
THIS WEEK’S JOURNAL:
On Sunday we went to Sacramento to look at cars, we are trying to decide what to get and wanted to try getting the kids in and out of a couple different ones to make sure they would work for us. I think we decided on what to get, now we just have to find the right one. When we got home I fed the kids and then we went to the fire dept to decorate the fire truck with Christmas lights and decorations. Every year the fire dept decorates the truck and then Santa rides on top and we walk up and down every street in the city, handing out candy canes to all the houses. We do a section of town every night for a week and then next weekend is the Christmas Parade. On Monday the kids had a great day. In the evening John went to the fire dept to study for his big test in the morning. Around 7:00 I heard Christmas music outside so I ran out to see the fire truck coming down our street with all the little elves following behind it. It was too cold so I didn’t bring the kids outside, but we will be walking with them tomorrow night. I don’t know what the problem was, but I think Hunter was over tired because he just couldn’t fall asleep and cried until 2:00 in the morning. As if that wasn’t bad enough, Ciara was fussing since she came home from school and by this time was screaming and kicking ALL night long, she didn’t sleep a minute. Around 1:50 she had a big seizure, but once it was over, she started up the crying again. I decided not to send her to school in the morning so Hunter went by himself, he was pretty happy as we walked to the bus. Of course as soon as the bus left, Ciara finally fell asleep for about an hour, then she woke up and started crying again. I tried giving her everything, Tylenol, Benedryl, laxative, but nothing seemed to help. John came home around 10:00 so we picked up my sister and we went Christmas shopping. By the time we got home we were starving so we had lunch and then Hunter and Mason came home from school. For some reason Hunter couldn’t stop laughing when he looked at Mason, he was just belly laughing, it was so funny. We played a few games and then I took Mason and my sister home. Around 6:00 Ciara seemed to have calmed down a bit so I decided to take the kids to the fire dept to pass out the candy canes. Tonight we did the part of town where Mason lives so that’s why I wanted to go tonight. Ciara really seemed to enjoy the long walk across town, Hunter did pretty good, but by the end he was fussing. On Wednesday it was raining so I did send both kids to school, but we didn’t go out in the evening for the fire dept. Ciara had a great day at school, no fussing and in the evening she was laughing and wiggling herself all over the place, she is so funny when she gets in those moods! On Thursday she had another good day, as did Hunter. She continues to laugh and kick and be silly!
Since the holidays are creeping up on us, I just thought that I would remind you all that if you are doing your shopping on-line, please visit www.igive.com and sign up to have “Bennett Children’s Fund” as your charity and we will get a percentage of your purchases donated to us!
Hugs To All, and ^^Angel^^ 
Thursday, December 1, 2005 8:50 PM CST
THIS WEEK’S JOURNAL:
Last week was a busy and painful week, both physically and emotionally. As you know, Ciara and I were in a car accident a couple of weeks ago and I injured my back badly. It was just starting to get better and then on Thanksgiving I hurt it again cooking and cleaning, etc. My mom, sister, and Mason came over and we had a great time. We snacked, played games and then it was time for dinner. Hunter sat at the table for ever, just munching away on everything he could get his hands on. After dinner everybody went home and we took the kids up to John’s dad’s house to visit with everybody. After dinner we went back home and the kids went to bed. Friday was the 2 year anniversary of the day Tommy earned his Angel wings. It was raining all day and John was at work so I didn’t take the kids out because my back was still hurting. I spent the day thinking about Tommy and looking at his pictures, smiling and laughing at what a funny kid he was, boy do I miss him! We didn’t do much this weekend because it was still raining. On On Monday we went to Sacramento to pick up a couple of things that John needed for his school work and then went back home. Tuesday both kids went to school which was wonderful! Hunter is walking again so he went back to school and I had a little break, boy was it nice! On Thursday morning (today), John took Ciara to school with him because his classmates were asking about her. She had a good time and liked being with all of the people. It was raining cats and dogs again today so I didn’t go anywhere. Ciara and Hunter are both doing very well and that is all I am going to say because I don’t want to jinx things! I just put up some new pictures from Thanksgiving so check them out!
Hugs To All, and ^^Angel^^ 
Thursday, December 1, 2005 8:50 PM CST
THIS WEEK’S JOURNAL:
Last week was a busy and painful week, both physically and emotionally. As you know, Ciara and I were in a car accident a couple of weeks ago and I injured my back badly. It was just starting to get better and then on Thanksgiving I hurt it again cooking and cleaning, etc. My mom, sister, and Mason came over and we had a great time. We snacked, played games and then it was time for dinner. Hunter sat at the table for ever, just munching away on everything he could get his hands on. After dinner everybody went home and we took the kids up to John’s dad’s house to visit with everybody. After dinner we went back home and the kids went to bed. Friday was the 2 year anniversary of the day Tommy earned his Angel wings. It was raining all day and John was at work so I didn’t take the kids out because my back was still hurting. I spent the day thinking about Tommy and looking at his pictures, smiling and laughing at what a funny kid he was, boy do I miss him! We didn’t do much this weekend because it was still raining. On On Monday we went to Sacramento to pick up a couple of things that John needed for his school work and then went back home. Tuesday both kids went to school which was wonderful! Hunter is walking again so he went back to school and I had a little break, boy was it nice! On Thursday morning (today), John took Ciara to school with him because his classmates were asking about her. She had a good time and liked being with all of the people. It was raining cats and dogs again today so I didn’t go anywhere. Ciara and Hunter are both doing very well and that is all I am going to say because I don’t want to jinx things!
Hugs To All, and ^^Angel^^ 
Friday, November 25, 2005 9:57 AM CST
I am going to update the journal today so please keep checking back, thanks!
and ^^Angel^^ 
Tuesday, November 22, 2005 10:28 PM CST
Tonight at 8:00 the Charlie Brown Thanksgiving is on TV. This video was playing in the room when Tommy passed away and he took his last breath during the song where Woodstock is flying, the "Little Birdie" song. So please watch this tonight and think of my little buddy. Since the holidays are creeping up on us, I just thought that I would remind you all that if you are doing your shopping on-line, please visit www.igive.com and sign up to have “Bennett Children’s Fund” as your charity and we will get a percentage of your purchases donated to us! and ^^Angel^^ 
Sunday, November 20, 2005 10:04 AM CST
MONDAY 8:00 PM UPDATE: We lost another friend tonight, Joshua earned his angel wings. You can visit his website by clicking here: Joshua's Journal
THURSDAY’S JOURNAL:
Ciara had a BIG seizure this morning and I think it might be because of the accident yesterday. I was getting Hunter dressed for school when it happened, but she was better by the time the bus came so I sent Hunter on his way. John wasn’t feeling well this morning so he didn’t go to school. I took Mason to school and then ran to the grocery store, went home and made breakfast. That was about all I could do today, my back is still hurting a lot. I called the wheelchair company and they said that Ciara’s wheelchair parts were in their main branch and they were assembling is and hopefully they will be able to deliver it next week, thank God! John came home from school around noon so he was able to get Hunter off the school bus when he came home. Mason came over after school so we watched Seinfeld like we do every day and then I picked up some Chinese food for him and took him home. Not much happened for the rest of the evening. Ciara did have a good time though, she was laughing and wiggling around and had a great time!
FRIDAY’S JOURNAL:
After I sent Hunter off to school, I had to get Ciara dressed and we were off to Sacramento to get her new feeding tube. For some reason the one she has now isn’t working right and she keeps getting infections around it. When we got to the hospital I couldn’t get Ciara’s wheelchair out of the trunk of the car because my back hurt so bad. I kept trying and just stood there in the parking lot crying because I just couldn’t do it. 
Eventually I got it out and we went to the doctor’s office. I know that when Hunter had his feeding tube they just popped it in and then inflated a little balloon inside so that it couldn’t come out. Well, Ciara has a BARD button and the balloon comes already inflated so I was surprised to see them just yank it out and then jam it back in, Ciara didn’t like that at all! After they put it in they had trouble getting it to draw anything out of the tube so they sent us to xray for a Barium study, just to make sure the tube was in her tummy and not somewhere else. Everything looked good and it was in the right spot so we went home. When I got back out to the parking lot I put Ciara in the car, folded the wheelchair and just stared at in, laying on the ground, wondering how I was going to get it into the trunk. Thank God a man came over and asked me if I needed help so he put it in the trunk and I told him that he was a wonderful man and he said “No I’m not, I’m an ass” and then walked away and I just stood there looking at him wondering what that was all about. 
When we got home I hooked Ciara up to the feeding pump and then Hunter came home from school. John is doing an overnight haul so I am on my own tonight so it was the first time since the accident that I have had to do everything. I had the hardest time getting Hunter in the wheelchair up the steps and into the house and when I finally did, I couldn’t get him out of the wheelchair. So, I parked him in front of the TV, gave him his juice cup and prayed that my sister would stop by on her way to work to get him out for me. Mason came over when he got out of school and eventually my sister did stop by so she got Hunter out and he was very happy about that! She stayed with Ciara and Hunter while I took Mason home and then she went to work. The kids and I didn’t do a darned thing for the rest of the evening, just had dinner, watched TV and laid around until it was time for bed.
SATURDAY’S JOURNAL:
The kids slept in this morning which was nice. When they woke up I fed them and they watched cartoons. John came home around noon and then a few hours later we went to Wal-Mart to get a bunch of stuff since I haven’t been able to go anywhere lately, no car and no wheelchair for Hunter. Hunter seems to be walking better this evening, he is bouncing across the couch again and getting into everything and actually walked across the living room by himself so that is wonderful to see. He was getting very grumpy because he couldn’t move around like he used to and today he was much happier that he could get around again. In the evening I made dinner, we watched a movie on TV and went to bed.
SUNDAY’S JOURNAL:
Hunter woke up at 5:00 this morning so I was up and couldn’t get back to sleep, darn it. After everybody else was up, I made breakfast and we watched TV. My back is still hurting so I didn’t do too much this morning, but I was able to do a little bit around the house. The kids got a bath and then I cut Ciara’s hair, boy did it need a cut! In March her hair fell out because she was so sick and it is growing back again so she has a bush on top of her head with a few long wisps of hair that I can still put in a pony tail. I cut about 3 inches off the back and trimmed the front so she looks much better now. Hopefully in another 3 months I can cut it again and get rid of the old scraggly stuff and she will have all new curly hair. In the afternoon John went to his cousins to help him work on his truck and then he had to pick up my sister and take her to work. When he came home I made dinner and we watched TV until it was time for him to take my sister home from work, then it was time for bed! My back was feeling better by the evening so hopefully I will be back to normal in the next day or so!
Our website is the “Site Of The Week” winner, I am so excited!!! Thank you all at Simply Enchanting Angels!
WHO YOU’D BE TODAY (Kenny Chesney)
Sunny days seem to hurt the most
Wear the pain like a heavy coat
I feel you everywhere I go
See your smile, I see your face
I hear you laughing in the rain
Still can't believe your gone
(Chorus:)
It ain't fair you died to young
Like a story that had just begun
But death tore the pages all away
God knows how I miss you
All the hell that I've been through
Just knowing, no one could take your place
Sometimes I wonder, who you'd be today
Would you see the world
Would you chase your dreams
Settle down with a family
I wonder what would you name your babies
Someday's the sky's so blue
I feel like I can talk to you
And I know it might sound crazy
(Chorus)
Today [3x]
Today [3x]
Sunny days seem to hurt the most
I wear the pain like a heavy coat
The only thing that gives me hope
Is I know, I'll see you again someday
Someday, someday
Hugs To All, and ^^Angel^^ 
Wednesday, November 16, 2005 10:13 AM CST
THURSDAY 7:00 AM UPDATE: Ciara had a very big seizure this morning, I wonder if it has anything to do with the accident yesterday?
SUNDAY’S JOURNAL:
I woke up around 7:00 this morning so I started to get things together since we are leaving the hotel today. I decided to take the dirty clothes to the wash room so that I didn’t have to do laundry when we got home. While it was washing and every body else was sleeping, I had breakfast in the club house. After I put the clothes in the dryer I went up to the front office to use their computer. When the laundry was finished I packed the bags, we got the kids dressed, said our good-byes and we were out of there around noon. We were on our way to Las Vegas were we will be staying the night. Ciara was so funny, as soon as we turned onto the Strip with all of the casinos and lights, Ciara just came alive. She was sitting up with big eyes and talking and she just loved all of the lights! When we got to the hotel room I fed her and then it was time for dinner. We were going to have dinner with my sister and her boys, they live in Las Vegas. Her youngest son is 13 and his name is Bennett and her oldest son is 21 and his name is Marcus. My sister and Bennett came out for Tommy’s funeral so some of you may remember them, but I haven’t seen Marcus since he was about 5 years old. We had a good time at dinner but Bennett had to get home for school in the morning so they left. We were staying at Circus Circus Hotel and they have a Circus Mid-way with acrobats and games so we took the kids up there and played some games. After a while we went back to the room and put the kids to bed, it was a long day.
MONDAY’S JOURNAL:
I got up around 7:00 and started to get everything together for the trip home, it will be a nine hour drive so we are going to have another long day. I fed Ciara and we got the kids dressed and we were on our way. Of course we made many stops on the way home for food, gas, and stretch breaks and I think we finally made it home around 8:00 PM. After we got things inside and the kids settled down, they were asleep in no time!
TUESDAY’S JOURNAL:
Hunter didn’t go to school this morning because I don’t have a wheelchair for him and since he isn’t walking, he has to have one or he can’t go to school. Ciara was in a good mood this morning when I put her on the bus so I think she will be happy to be back at school. John went to school this morning and Hunter and I didn’t go anywhere, we stayed home and relaxed and worked on getting the pictures from the conference up for you all to see. John came home in the afternoon and then Ciara came home from school around 2:30. After I got her settled in, Mason came over so we watched Seinfeld and then I took him home. That was about it for the evening, we didn’t do a darned thing. We had dinner and then John went to his fire dept meeting while the kids and I watched TV. John came home around 9:00 and the kids were asleep not long after that.
WEDNESDAY’S JOURNAL:
I sent Hunter off to school this morning and then Ciara and I were off to Sacramento for her doctor’s appointment. Her feeding tube is having issues and they are going to put in a new one, a longer one, because she has gained so much weight. She has gone from 46 lbs to 62 lbs! We were on our way to the hospital when we had an accident. A flat bed truck was coming around the corner towards us and a big metal can thing fell off and hit us which blew out our tire. I couldn't steer so we swerved into the oncoming lane and hit another truck. Nobody was hurt bad, but my back is killing me, and my hand where the airbag blew out, thank God Ciara wasn’t hurt. After I made sure she was alright I got her out of the car and then looked up to the sky and thanked Tommy for watching over us. A friend of mine just happened to come up on the accident as I was getting Ciara out of the car so she stayed with us and let me use her cell phone to call John. I was surprised that no fire trucks or ambulance came and the CHP officer wasn’t very nice at all. A CDF Battalion Chief stopped on his way to Sacramento and checked Ciara out, I wish I had gotten his name or the number on his truck because he was wonderful with Ciara. His niece has cerebral palsy so he kept rubbing Ciara’s back and she was in heaven. John was sort of in the area so he dropped his big truck off at the yard and came to get us so Kim left when he got there, thanks Kim! The tow truck came and took my van to Sacramento so John took Ciara and I home and then he drove to Sacramento to get everything out of the van. I put Ciara in her recliner and hooked her up to the feeding pump and then called the doctor’s office to let them know why we were late, but they can’t see her now until Friday morning, darn it. By this time my back was really hurting so I didn’t do anything else for the rest of the day. John was home when the school bus brought Hunter home so he took care of Hunter and got him some juice and cartoons. In the evening John went up to his dad’s to borrow his car so I can have something to drive, thanks Smoky! So while he was gone I plopped myself in the hot bath for an hour and my back felt better. When John came home he made his dinner and I fed the kids and that was it for the night.
For some reason my guest book has disappeared so please sign in again because I have no idea who has been there, thanks!
I just put up some new pictures from the conference. I also have a slide show which you can see here: CONFERENCE PICTURES
Hugs To All, and ^^Angel^^ 
Saturday, November 12, 2005 11:30 AM CST
WEDNESDAY 10:30 AM UPDATE: Ciara and I were on our way to the hospital to get her new feeding tube when we had an accident. A flat bed truck was coming around the corner towards us and a big metal can thing fell off and hit us which blew out our tire> I couldn't steer so we swerved into the oncoming lane and hit another truck. Nobody was hurt bad, but my back in killing me, and my hand where the airbag blew out. John came to get us and once we can get another car to drive, I will take myself and Ciara to the hospital to be checked out. The officer who came never even asked if Ciara or I was hurt, what an ass! I will let you know more later this evening after we get back from the hospital. WEDNESDAY 6:30 AM: I am taking Ciara to the doctor to get a new feeding tube put in so I will update when we get back. I just put up some new pictures from the conference. I also have a slide show which you can see here: Conference Slide Show
MONDAY 8:00 PM UPDATE: I was in such a hurry when I did the last update that I forgot to mention that Ciara had a seizure Thursday morning around 3:00 and again Friday morning around 5:00, they were both moderate ones. We just got home so I will try to get some pictures up by tomorrow night and do another update so keep checking back!
WEDNESDAY'S JOURNAL:
John had to go to school this morning to take a test so he won't miss it while we are at the conference. While he was doing that I packed everything and got the kids ready so that we could leave when he came home. We left around 10:00 and headed to Laughlin, NV where we will stay the night. The kids did very well on the 9 hour drive, I was very happy about that! When we got to the hotel we relaxed for about an hour and then went down to the buffet for dinner and then back up to the room and the kids went to bed early, they had a long day. Hunter still can't walk, poor thing.
THURSDAY'S JOURNAL:
We were out of the hotel around 7:00 this morning and grabbed some breakfast on the way to Scottsdale. We got to the conference around 1:00 and checked in, then we ran to Wal-Mart to get some wipies and snacks. Around 5:00 we went to register at the conference desk and then it was the welcome banquet which was a lot of fun. We ate, we visited with friends and then Kenny Wallace, the NASCAR driver came so Ciara got his autograph and a picture with him because John and Hunter had just gone back to the room. It was now time for the break-out sessions so I took Ciara with me to the Sanfilippo session. About half way thru she was fussing so I took her back to the room and brought Hunter back with me and he and Jesse played while we all talked. When it was over I brought Hunter back to the room and a bunch of the moms went out to the pool and had a great time for a few hours!
FRIDAY'S JOURNAL:
We got up early again this morning and had breakfast so that we could go see Elmo at 9:00. I checked the kids into daycare and then we went to the meetings for while. At noon we were all off to the Phoenix zoo and the MPS BBQ which was fun. After the BBQ we left the zoo and went back to the hotel to relax for a while. Ciara took a nap and Hunter and I went to the pool. He still can't walk, but started to move himself from the chair to the couch and was crawling around the room so I think his foot is getting better. Around 7:00 a bunch of the MPS Forum familes went to dinner which was great, we had a lot of fun! After dinner the kids went back to the rooms and some of us went back to the pool until midnight just chatting away!
SATURDAY'S JOURNAL:
Hunter was crawling all of the suite this morning and he pulled himself up on the chair so I was very happy, hopefully he will be walking again very soon. I noticed that his left ankle has a big knot on it and a bruise so I think he just sprained it pretty bad. We went to breakfast around 8:30 and then went over to daycare because Barney was coming to see the kids. Snow White was also there and the kids had a great time! We went out to lunch and then I took the kids to the MPS Forum party for a while. After that Ciara took a nap and Hunter and I went swimming. I took him in the hot tub which freaked him out for a few minutes, but then he calmed down and had a great time. Leslie was in there too so she took Hunter while I went into the pool and next thing I know, Hunter was floating on his back, sleeping as Leslie held him, it was so cute! It was now time to get him dried off and dressed for the final dinner which he ate like a horse! Even Ciara ate the dessert and loved it, chocolate of course! After dinner we all went out by the pool again and had a great time!
Hugs To All, and ^^Angel^^ 
Tuesday, November 8, 2005 9:14 PM CST
Not much has changed in the past few days, as far as Hunter’s walking goes. I didn’t send him to school on Tuesday because if he isn’t walking, he needs a wheelchair and we don’t have one. We ordered the new wheelchair 11 months ago and we still don’t have it so some heads are going to roll this morning when I start making some phone calls because he can’t go back to school until he has a wheelchair. Today he started to put a little weight on it, but still can’t stand or walk. He is able to pull himself back up onto the couch again so hopefully whatever is hurting him is starting to get better and I am praying that he will walk again very soon. Little Miss Ciara is going fantastic and now weighs 62 lbs! Hunter only weighs 2 lbs more then she does so it looks like our little turkey is plumping up nicely! The other day I got an email from one of the MPS Forum dad’s, his son Marcus has MPS-I and was transplanted 10 years ago. He works for CDF down in Hollister and was going to be here in Ione at the CDF Fire Academy this week and wanted to get together so we met him tonight. Ric,, it was wonderful to finally meet you and we can’t wait to get together again soon! You can visit Marcus’ journal here: Marcus' Journal
We are leaving in the morning for the MPS Conference, we will be staying the night in Laughlin and then we should get to Scottsdale around noon on Thursday. Sunday we will be leaving and going to Las Vegas to get together with family and then we will be home Monday. I will try to update while we are gone and post pictures so keep checking back!
Hugs To All, and ^^Angel^^ 
Tuesday, November 8, 2005 9:14 PM CST
Not much has changed in the past few days, as far as Hunter’s walking goes. I didn’t send him to school on Tuesday because if he isn’t walking, he needs a wheelchair and we don’t have one. We ordered the new wheelchair 11 months ago and we still don’t have it so some heads are going to roll this morning when I start making some phone calls because he can’t go back to school until he has a wheelchair. Today he started to put a little weight on it, but still can’t stand or walk. He is able to pull himself back up onto the couch again so hopefully whatever is hurting him is starting to get better and I am praying that he will walk again very soon. Little Miss Ciara is going fantastic and now weighs 62 lbs! Hunter only weighs 2 lbs more then she does so it looks like our little turkey is plumping up nicely! The other day I got an email from one of the MPS Forum dad’s, his son Marcus has MPS-I and was transplanted 10 years ago. He works for CDF down in Hollister and was going to be here in Ione at the CDF Fire Academy this week and wanted to get together so we met him tonight. Ric,, it was wonderful to finally meet you and we can’t wait to get together again soon! You can visit Marcus’ journal here: Marcus' Journal We are leaving in the morning for the MPS Conference, we will be staying the night in Laughlin and then we should get to Scottsdale around noon on Thursday. Sunday we will be leaving and going to Las Vegas to get together with family and then we will be home Monday. I will try to update while we are gone and post pictures so keep checking back!
Hugs To All, and ^^Angel^^
Saturday, November 5, 2005 23:07 PM CST
It is with a very sad heart that I tell you that our little friend Maddie earned her Angel wings today. You can visit Maddie's journal by clicking here: Maddie's Journal
LAST WEEK’S JOURNAL:
Ciara and Hunter have been doing very well and Ciara is getting a little chubby, it is so good to see her like this again. Monday was Halloween so after I sent the kids off to school, I went to the store to get some things for the class party. When I got to the school I put their costumes on them and the party started and we had a good time. Hunter was a baseball player and Ciara was a cheerleader, it was so cute! We decided not to take the kids trick-or-treating because they don’t get it and it’s too much work. We did go to a friend’s house to trick-or-treat and the kids made out pretty good, thanks Chris & Lisa! After that we stopped by the church for their little carnival thing they were doing and that was fun, then we went back home. We didn’t even get one trick-or-treater at our house so we had a lot of candy left over. Tuesday evening we went to the fire dept dinner/meeting but just before the dinner, John’s work called and they needed him to make a haul so he had to leave so the kids and I went to the meeting since I had made a lasagna to take with. Not much to report on for Wednesday and Thursday, just normal days with a little rain mixed in, but the kids are doing pretty good. Friday morning Ciara had a seizure so I kept her home from school. When I tried to get Hunter out to the school bus I noticed that he was having trouble walking but I thought that it might be because he was still tired. When he came home from school there was a note from the teacher and she said that Hunter couldn’t walk or stand all day, they had to carry him and he would cry when he had to stand. I had to carry him off the bus and into the house and he cried and cried when I tried to get him to stand or walk. He has been falling a lot the past few days because he has been walking on his tip toes which throws him off balance. Tip toe walking is part of the progression of MPS. He does have a bruise on his left ankle but doesn't cry when I move it or his knee so I think it might be his hip. He can't bare any weight on his left leg and cries when I stand him up. He keeps trying to get up and just ends up on the ground crying, trying to get up again. He reminds me of a fly when you pull it's wings off, it is so sad! John isn’t coming home tonight so I am going to see how he does and if he doesn’t cry a lot I am going to wait until the morning to take him to the hospital because it is an hour away and I can’t push his and Ciara’s wheelchairs by myself. Saturday morning Hunter was still the same so I called the hospital and they got him an appointment at the urgent care center so I dropped Ciara off at a friend’s house and took Hunter to the doctor. The doctor only wanted to xray his foot, not even his ankle, but I told him I wasn’t leaving until they xrayed everything from his hip to his toes, so they did. Nothing is broken so he doesn’t know what the problem is, maybe a soft tissue injury. I will see how he does over the next day or so and then maybe take him to his regular doctor. John was supposed to be home this evening, but the plant broke down for 10 hours so he just called and said that he was still in Southern Calif and wouldn’t be home until tomorrow.
I just posted some new pictures from halloween so check them out! Our transplant friend Maddie, is in need of your prayers again. Maddie was transplanted with Tommy during his 3rd transplant. You can visit her journal by clicking here: Maddie's Journal
We are leaving Wednesday for the MPS Conference in Scottsdale AZ and I can’t wait to see everybody again! We have enough money for the hotel, but that is about it so if you can help out, please visit our donation website, MPS Conference Donations
Hugs To All, and ^^Angel^^ 
Saturday, November 5, 2005 23:07 PM CST
LAST WEEK’S JOURNAL:
Ciara and Hunter have been doing very well and Ciara is getting a little chubby, it is so good to see her like this again. Monday was Halloween so after I sent the kids off to school, I went to the store to get some things for the class party. When I got to the school I put their costumes on them and the party started and we had a good time. Hunter was a baseball player and Ciara was a cheerleader, it was so cute! We decided not to take the kids trick-or-treating because they don’t get it and it’s too much work. We did go to a friend’s house to trick-or-treat and the kids made out pretty good, thanks Chris & Lisa! After that we stopped by the church for their little carnival thing they were doing and that was fun, then we went back home. We didn’t even get one trick-or-treater at our house so we had a lot of candy left over. Tuesday evening we went to the fire dept dinner/meeting but just before the dinner, John’s work called and they needed him to make a haul so he had to leave so the kids and I went to the meeting since I had made a lasagna to take with. Not much to report on for Wednesday and Thursday, just normal days with a little rain mixed in, but the kids are doing pretty good. Friday morning Ciara had a seizure so I kept her home from school. When I tried to get Hunter out to the school bus I noticed that he was having trouble walking but I thought that it might be because he was still tired. When he came home from school there was a note from the teacher and she said that Hunter couldn’t walk or stand all day, they had to carry him and he would cry when he had to stand. I had to carry him off the bus and into the house and he cried and cried when I tried to get him to stand or walk. He has been falling a lot the past few days because he has been walking on his tip toes which throws him off balance. Tip toe walking is part of the progression of MPS. He does have a bruise on his left ankle but doesn't cry when I move it or his knee so I think it might be his hip. He can't bare any weight on his left leg and cries when I stand him up. He keeps trying to get up and just ends up on the ground crying, trying to get up again. He reminds me of a fly when you pull it's wings off, it is so sad! John isn’t coming home tonight so I am going to see how he does and if he doesn’t cry a lot I am going to wait until the morning to take him to the hospital because it is an hour away and I can’t push his and Ciara’s wheelchairs by myself. Saturday morning Hunter was still the same so I called the hospital and they got him an appointment at the urgent care center so I dropped Ciara off at a friend’s house and took Hunter to the doctor. The doctor only wanted to xray his foot, not even his ankle, but I told him I wasn’t leaving until they xrayed everything from his hip to his toes, so they did. Nothing is broken so he doesn’t know what the problem is, maybe a soft tissue injury. I will see how he does over the next day or so and then maybe take him to his regular doctor. John was supposed to be home this evening, but the plant broke down for 10 hours so he just called and said that he was still in Southern Calif and wouldn’t be home until tomorrow.
I just posted some new pictures from halloween so check them out! Our transplant friend, Maddie, is in need of your prayers again. You can visit her journal by clicking here: Maddie's Journal We are leaving Wednesday for the MPS Conference in Scottsdale AZ and I can’t wait to see everybody again! We have enough money for the hotel, but that is about it so if you can help out, please visit our donation website, MPS Conference Donations
Hugs To All, and ^^Angel^^
Saturday, November 5, 2005 23:07 PM CST
LAST WEEK’S JOURNAL:
Ciara and Hunter have been doing very well and Ciara is getting a little chubby, it is so good to see her like this again. Monday was Halloween so after I sent the kids off to school, I went to the store to get some things for the class party. When I got to the school I put their costumes on them and the party started and we had a good time. Hunter was a baseball player and Ciara was a cheerleader, it was so cute! We decided not to take the kids trick-or-treating because they don’t get it and it’s too much work. We did go to a friend’s house to trick-or-treat and the kids made out pretty good, thanks Chris & Lisa! After that we stopped by the church for their little carnival thing they were doing and that was fun, then we went back home. We didn’t even get one trick-or-treater at our house so we had a lot of candy left over. Tuesday evening we went to the fire dept dinner/meeting but just before the dinner, John’s work called and they needed him to make a haul so he had to leave so the kids and I went to the meeting since I had made a lasagna to take with. Not much to report on for Wednesday and Thursday, just normal days with a little rain mixed in, but the kids are doing pretty good. Friday morning Ciara had a seizure so I kept her home from school. When I tried to get Hunter out to the school bus I noticed that he was having trouble walking but I thought that it might be because he was still tired. When he came home from school there was a note from the teacher and she said that Hunter couldn’t walk or stand all day, they had to carry him and he would cry when he had to stand. I had to carry him off the bus and into the house and he cried and cried when I tried to get him to stand or walk. He has been falling a lot the past few days because he has been walking on his tip toes which throws him off balance. Tip toe walking is part of the progression of MPS. He does have a bruise on his left ankle but doesn't cry when I move it or his knee so I think it might be his hip. He can't bare any weight on his left leg and cries when I stand him up. He keeps trying to get up and just ends up on the ground crying, trying to get up again. He reminds me of a fly when you pull it's wings off, it is so sad! John isn’t coming home tonight so I am going to see how he does and if he doesn’t cry a lot I am going to wait until the morning to take him to the hospital because it is an hour away and I can’t push his and Ciara’s wheelchairs by myself. Saturday morning Hunter was still the same so I called the hospital and they got him an appointment at the urgent care center so I dropped Ciara off at a friend’s house and took Hunter to the doctor. The doctor only wanted to xray his foot, not even his ankle, but I told him I wasn’t leaving until they xrayed everything from his hip to his toes, so they did. Nothing is broken so he doesn’t know what the problem is, maybe a soft tissue injury. I will see how he does over the next day or so and then maybe take him to his regular doctor. John was supposed to be home this evening, but the plant broke down for 10 hours so he just called and said that he was still in Southern Calif and wouldn’t be home until tomorrow. I just posted some new pictures from halloween so check them out! We are leaving Wednesday for the MPS Conference in Scottsdale AZ and I can’t wait to see everybody again! We have enough money for the hotel, but that is about it so if you can help out, please visit our donation website, MPS Conference Donations
Hugs To All, and ^^Angel^^
Saturday, November 5, 2005 23:07 PM CST
LAST WEEK’S JOURNAL:
Ciara and Hunter have been doing very well and Ciara is getting a little chubby, it is so good to see her like this again. Monday was Halloween so after I sent the kids off to school, I went to the store to get some things for the class party. When I got to the school I put their costumes on them and the party started and we had a good time. Hunter was a baseball player and Ciara was a cheerleader, it was so cute! We decided not to take the kids trick-or-treating because they don’t get it and it’s too much work. We did go to a friend’s house to trick-or-treat and the kids made out pretty good, thanks Chris & Lisa! After that we stopped by the church for their little carnival thing they were doing and that was fun, then we went back home. We didn’t even get one trick-or-treater at our house so we had a lot of candy left over. Tuesday evening we went to the fire dept dinner/meeting but just before the dinner, John’s work called and they needed him to make a haul so he had to leave so the kids and I went to the meeting since I had made a lasagna to take with. Not much to report on for Wednesday and Thursday, just normal days with a little rain mixed in, but the kids are doing pretty good. Friday morning Ciara had a seizure so I kept her home from school. When I tried to get Hunter out to the school bus I noticed that he was having trouble walking but I thought that it might be because he was still tired. When he came home from school there was a note from the teacher and she said that Hunter couldn’t walk or stand all day, they had to carry him and he would cry when he had to stand. I had to carry him off the bus and into the house and he cried and cried when I tried to get him to stand or walk. He has been falling a lot the past few days because he has been walking on his tip toes which throws him off balance. Tip toe walking is part of the progression of MPS. He does have a bruise on his left ankle but doesn't cry when I move it or his knee so I think it might be his hip. He can't bare any weight on his left leg and cries when I stand him up. He keeps trying to get up and just ends up on the ground crying, trying to get up again. He reminds me of a fly when you pull it's wings off, it is so sad! John isn’t coming home tonight so I am going to see how he does and if he doesn’t cry a lot I am going to wait until the morning to take him to the hospital because it is an hour away and I can’t push his and Ciara’s wheelchairs by myself. Saturday morning Hunter was still the same so I called the hospital and they got him an appointment at the urgent care center so I dropped Ciara off at a friend’s house and took Hunter to the doctor. The doctor only wanted to xray his foot, not even his ankle, but I told him I wasn’t leaving until they xrayed everything from his hip to his toes, so they did. Nothing is broken so he doesn’t know what the problem is, maybe a soft tissue injury. I will see how he does over the next day or so and then maybe take him to his regular doctor. John was supposed to be home this evening, but the plant broke down for 10 hours so he just called and said that he was still in Southern Calif and wouldn’t be home until tomorrow. We are leaving Wednesday for the MPS Conference in Scottsdale AZ and I can’t wait to see everybody again! We have enough money for the hotel, but that is about it so if you can help out, please visit our donation website, MPS Conference Donations
Hugs To All, and ^^Angel^^
Saturday, November 5, 2005 23:07 PM CST
LAST WEEK’S JOURNAL:
Not much happened this past week. Ciara and Hunter have been doing very well and Ciara is getting a little chubby, it is so good to see her like this again. Monday was Halloween so after I sent the kids off to school, I went to the store to get some things for the class party. When I got to the school I put their costumes on them and the party started and we had a good time. Hunter was a baseball player and Ciara was a cheerleader, it was so cute! We decided not to take the kids trick-or-treating because they don’t get it and it’s too much work. We did go to a friend’s house to trick-or-treat and the kids made out pretty good, thanks Chris & Lisa! After that we stopped by the church for their little carnival thing they were doing and that was fun, then we went back home. We didn’t even get one trick-or-treater at our house so we had a lot of candy left over. Tuesday evening we went to the fire dept dinner/meeting but just before the dinner, John’s work called and they needed him to make a haul so he had to leave so the kids and I went to the meeting since I had made a lasagna to take with. Not much to report on for Wednesday and Thursday, just normal days with a little rain mixed in, but the kids are doing pretty good. Friday morning Ciara had a seizure so I kept her home from school. When I tried to get Hunter out to the school bus I noticed that he was having trouble walking but I thought that it might be because he was still tired. When he came home from school there was a note from the teacher and she said that Hunter couldn’t walk or stand all day, they had to carry him and he would cry when he had to stand. I had to carry him off the bus and into the house and he cried and cried when I tried to get him to stand or walk. He has been falling a lot the past few days because he has been walking on his tip toes which throws him off balance. Tip toe walking is part of the progression of MPS. He does have a bruise on his left ankle but doesn't cry when I move it or his knee so I think it might be his hip. He can't bare any weight on his left leg and cries when I stand him up. He keeps trying to get up and just ends up on the ground crying, trying to get up again. He reminds me of a fly when you pull it's wings off, it is so sad! John isn’t coming home tonight so I am going to see how he does and if he doesn’t cry a lot I am going to wait until the morning to take him to the hospital because it is an hour away and I can’t push his and Ciara’s wheelchairs by myself. Saturday morning Hunter was still the same so I called the hospital and they got him an appointment at the urgent care center so I dropped Ciara off at a friend’s house and took Hunter to the doctor. The doctor only wanted to xray his foot, not even his ankle, but I told him I wasn’t leaving until they xrayed everything from his hip to his toes, so they did. Nothing is broken so he doesn’t know what the problem is, maybe a soft tissue injury. I will see how he does over the next day or so and then maybe take him to his regular doctor. John was supposed to be home this evening, but the plant broke down for 10 hours so he just called and said that he was still in Southern Calif and wouldn’t be home until tomorrow. We are leaving Wednesday for the MPS Conference in Scottsdale AZ and I can’t wait to see everybody again! We have enough money for the hotel, but that is about it so if you can help out, please visit our donation website, MPS Conference Donations
Hugs To All, and ^^Angel^^
Saturday, November 5, 2005 23:07 PM CST
LAST WEEK’S JOURNAL:
Not much happened this past week. Ciara and Hunter have been doing very well and Ciara is getting a little chubby, it is so good to see her like this again. Monday was Halloween so after I sent the kids off to school, I went to the store to get some things for the class party. When I got to the school I put their costumes on them and the party started and we had a good time. Hunter was a baseball player and Ciara was a cheerleader, it was so cute! We decided not to take the kids trick-or-treating because they don’t get it and it’s too much work. We did go to a friend’s house to trick-or-treat and the kids made out pretty good, thanks Chris & Lisa! After that we stopped by the church for their little carnival thing they were doing and that was fun, then we went back home. We didn’t even get one trick-or-treater at our house so we had a lot of candy left over. Tuesday evening we went to the fire dept dinner/meeting but just before the dinner, John’s work called and they needed him to make a haul so he had to leave so the kids and I went to the meeting since I had made a lasagna to take with. Not much to report on for Wednesday and Thursday, just normal days with a little rain mixed in, but the kids are doing pretty good. Friday morning Ciara had a seizure so I kept her home from school. When I tried to get Hunter out to the school bus I noticed that he was having trouble walking but I thought that it might be because he was still tired. When he came home from school there was a note from the teacher and she said that Hunter couldn’t walk or stand all day, they had to carry him and he would cry when he had to stand. I had to carry him off the bus and into the house and he cried and cried when I tried to get him to stand or walk. He has been falling a lot the past few days because he has been walking on his tip toes which throws him off balance. Tip toe walking is part of the progression of MPS. He does have a bruise on his left ankle but doesn't cry when I move it or his knee so I think it might be his hip. He can't bare any weight on his left leg and cries when I stand him up. He keeps trying to get up and just ends up on the ground crying, trying to get up again. He reminds me of a fly when you pull it's wings off, it is so sad! John isn’t coming home tonight so I am going to see how he does and if he doesn’t cry a lot I am going to wait until the morning to take him to the hospital because it is an hour away and I can’t push his and Ciara’s wheelchairs by myself. Saturday morning Hunter was still the same so I called the hospital and they got him an appointment at the urgent care center so I dropped Ciara off at a friend’s house and took Hunter to the doctor. The doctor only wanted to xray his foot, not even his ankle, but I told him I wasn’t leaving until they xrayed everything from his hip to his toes, so they did. Nothing is broken so he doesn’t know what the problem is, maybe a soft tissue injury. I will see how he does over the next day or so and then maybe take him to his regular doctor. John was supposed to be home this evening, but the plant broke down for 10 hours so he just called and said that he was still in Southern Calif and wouldn’t be home until tomorrow. We are leaving Wednesday for the MPS Conference in Scottsdale AZ and I can’t wait to see everybody again! We have enough money for the hotel, but that is about it so if you can help out, please visit our donation website, MPS Conference Donations
Hugs To All, and ^^Angel^^
Saturday, November 5, 2005 23:07 PM CST
LAST WEEK’S JOURNAL:
Not much happened this past week. Ciara and Hunter have been doing very well and Ciara is getting a little chubby, it is so good to see her like this again. Monday was Halloween so after I sent the kids off to school, I went to the store to get some things for the class party. When I got to the school I put their costumes on them and the party started and we had a good time. Hunter was a baseball player and Ciara was a cheerleader, it was so cute! We decided not to take the kids trick-or-treating because they don’t get it and it’s too much work. We did go to a friend’s house to trick-or-treat and the kids made out pretty good, thanks Chris & Lisa! After that we stopped by the church for their little carnival thing they were doing and that was fun, then we went back home. We didn’t even get one trick-or-treater at our house so we had a lot of candy left over. Tuesday evening we went to the fire dept dinner/meeting but just before the dinner, John’s work called and they needed him to make a haul so he had to leave so the kids and I went to the meeting since I had made a lasagna to take with. Not much to report on for Wednesday and Thursday, just normal days with a little rain mixed in, but the kids are doing pretty good. Friday morning Ciara had a seizure so I kept her home from school. When I tried to get Hunter out to the school bus I noticed that he was having trouble walking but I thought that it might be because he was still tired. When he came home from school there was a note from the teacher and she said that Hunter couldn’t walk or stand all day, they had to carry him and he would cry when he had to stand. I had to carry him off the bus and into the house and he cried and cried when I tried to get him to stand or walk. He has been falling a lot the past few days because he has been walking on his tip toes which throws him off balance. Tip toe walking is part of the progression of MPS. He does have a bruise on his left ankle but doesn't cry when I move it or his knee so I think it might be his hip. He can't bare any weight on his left leg and cries when I stand him up. He keeps trying to get up and just ends up on the ground crying, trying to get up again. He reminds me of a fly when you pull it's wings off, it is so sad! John isn’t coming home tonight so I am going to see how he does and if he doesn’t cry a lot I am going to wait until the morning to take him to the hospital because it is an hour away and I can’t push his and Ciara’s wheelchairs by myself. Saturday morning Hunter was still the same so I called the hospital and they got him an appointment at the urgent care center so I dropped Ciara off at a friend’s house and took Hunter to the doctor. The doctor only wanted to xray his foot, not even his ankle, but I told him I wasn’t leaving until they xrayed everything from his hip to his toes, so they did. Nothing is broken so he doesn’t know what the problem is, maybe a soft tissue injury. I will see how he does over the next day or so and then maybe take him to his regular doctor. John was supposed to be home this evening, but the plant broke down for 10 hours so he just called and said that he was still in Southern Calif and wouldn’t be home until tomorrow. We are leaving Wednesday for the MPS Conference in Scottsdale AZ and I can’t wait to see everybody again! We have enough money for the hotel, but that is about it so if you can help out, please visit our donation website, MPS Conference Donations
Hugs To All, and ^^Angel^^
Friday, November 4, 2005 11:35 AM CST
SATURDAY 3:30 PM UPDATE: We just got back from the hospital and I had them xray from his pelvis down to his foot and nothing is broken so that is good news. We will just have to wait and see how he does over the next couple of days. Thanks for the messages, we love you all!
SATURDAY 9:50 AM UPDATE: I have an 11:00 appointment at the urgent care center for Hunter. Ciara will be going to my friend's house so that will be much easier for me, thanks Debbie! I will let you know what they say when we get home so check back in a few hours!
FRIDAY 5:00 PM UPDATE: Hunter hasn't been able to walk at all today, there is something wrong with his left leg. He has been falling a lot the past few days because he has been walking on his tiptoes which throws him off balance. Tip toe walking is part of the progression of MPS. He does have a bruise on his left ankle but doesn't cry when I move it or his knee so I think it might be his hip. He can't bare any weight on his left leg and cries when I stand him up. He keeps trying to get up and just ends up on the ground crying, trying to get up again. He reminds me of a fly when you pull it's wings off, it is so sad! Now, Ciara hasn't had any more seizures today so that is very good. I am going to keep an eye on Hunter tonight because John isn't home and I don't want to take him to the ER tonight with Ciara so I will most likely take him in the morning, unless he cries all night and then I will take him in tonight. Right now he is sitting on the couch watching cartoons. Stay tuned for further updates!
I am going to update the journal this evening, but I just wanted to let you all know that Ciara had another seizure around 2:00 this morning. She did the same thing that she did last week, she had this weird "trance" thing afterwards so I kept her home from school today and she is still sleeping. I hope that is the only one she has today!
Hugs To All, and ^^Angel^^
Friday, November 4, 2005 11:35 AM CST
I am going to update the journal this evening, but I just wanted to let you all know that Ciara had another seizure around 2:00 this morning. She did the same thing that she did last week, she had this weird "trance" thing afterwards so I kept her home from school today and she is still sleeping. I hope that is the only one she has today!
Hugs To All, and ^^Angel^^
Friday, November 4, 2005 11:35 AM CST
TUESDAY 5:30 AM: It is a sad day today, our little friend Tyler earned his angel wings this morning and Kelley earned his a couple of days ago. We have lost so many little ones this past couple of months, I don't understand it. Every time we lose a little friend, it brings back the feeling the day that Tommy passed away and it is so hard. And I know that we will have to go thru that again, twice, and I just don't see how we can, it's just not fair!
Tyler's Journal
We only have 9 days left before the MPS Conference and we still don't have enough money to go, we still need $600. If you can help us, please let me know. Also, if you know of any company, group, or Foundation that might be able to help us out, PLEASE let me know! We don't want to miss the conference this year, thanks.
You can make a donation from our Soy journal by clicking this link, then there is a "donate" button in the middle of the page, Soy Journal. 
THURSDAY’S JOURNAL:
After I sent the kids off to school this morning I grabbed a bite to eat and then ran to the grocery store. I really didn’t do too much until the kids came home from school in the afternoon. They were both very happy when I got them off the bus. Mason came over after school also, so he goofed around for a couple hours and then I took him over to his dad’s house. John isn’t coming home tonight, he is doing an overnight haul, so the kids and I just took it easy all evening. We had dinner, watched TV and played around until it was time for bed.
FRIDAY’S JOURNAL:
Today is silly hat day at school, but the only silly hats I have were Tommy’s and I just wasn’t ready for Hunter to wear them yet so I only had a couple of Ciara’s hats. Ciara wore the only one that would fit over her pony tail, so that left the blue one for Hunter, and boy was it funny! It was a blue hand-made hat but he has a big head so I had to stretch it to get it over his head. It was very snug to his head and it covered all his hair and his ears poked out and he looked like a little forest imp, it was so funny. I took some pictures but I don’t know if it really shows how hysterically funny he looked. After I sent them off to school I was off running errands for the rest of the afternoon. The kids came home around 2:30 and then Mason came over when he got out of school. Mason has a costume dance at school tonight so we worked on his costume and then I took him home. John came home around 5:00 so we had to rush to get the kids changed and over to the baby sitter at 6:00. Today is out 10th anniversary so we are going out to dinner and to a movie. I really wanted to go to my favorite Mexican restaurant, but we just didn’t have time before the movie started so we ordered a pizza on the way so it would be ready when we got there, then headed over to the theater to see “Flight Plan” with Jodie Foster, great movie! After the movie we had to rush back to get the kids so that I could get Mason from the dance at 9:30 and then we went home and the kids were asleep in no time!
SATURDAY’S JOURNAL:
Around 3:00 this morning Ciara started breathing funny and a while later she had a big seizure. What scared me about this seizure was that she wasn't breathing while she was having it. I kept shaking her a little, hoping she would take a breath and as it was ending, she finally did. But for the next 5 hours she was still having some sort of neurological problems going on. She was very limp, but her hands were clenched and her eyes were rolled back in her head and she was doing the weird breathing. I kept trying to move her around and she was completely out of it, she hasn't done this before. I have the Diastat for her but I have never used it before. I am supposed to give it to her if she has continuous seizures that won't stop, but I don't know what this whole episode was so I didn't know if I should give it to her or not. Around 8:00 this morning she finally started coming out of it and she was looking around a little bit, moving her arm and making some "Oh" sounds. John left for work, he is doing an overnight haul so he won’t be coming home tonight. At 9:00 Ciara had another seizure, not as big as the one early this morning, but now she is in a "trance" again. After about an hour, she relaxed and went to sleep for a couple of hours. After Hunter and I had breakfast, he watched some cartoons and then I watched a movie. I got the kids dressed and we went out to Wal-Mart to get a few things for our costumes for the Halloween birthday party this evening. We got back home around 4:00 so I hooked Ciara up to the feeding pump and then got Hunter something to eat. I got everybody dressed in their costumes, Hunter is a baseball player and Ciara is a cheerleader, I am a vampire, then we headed out to the party. When we got there, the kids were dancing so Hunter grabbed the handles of Ciara’s wheelchair and danced around with her, kicking his feet and having a great time, it was so cute! After alittle while Ciara’s legs were getting cold so I brought the kids inside where the food was, that made Hunter happy. Even though I had just fed him, he ate like a horse! Ciara liked watching the other kids and she was smiling and laughing all night long. She looked so cute in her costume, she really looked like a little girl, like there was nothing wrong with her, it was so precious! I tried to take some pictures but my batteries died so I will see what I ended up with and post some new pictures Monday after Halloween is over. Hunter was getting restless so we walked over to the restaurant my sister works at and got a soda. The owner gave the kids some goodie bags and then we walked back to the party. We stayed there until 8:30, but by that time Hunter was exhausted and angry so I took the kids home. Ciara continued to laugh all night long, but Hunter was asleep as soon as we walked in the door.
I posted some new pictures of Tommy being silly so check them out!
There is a song by Martina McBride called "God's Will" and I thought it would be appropriate to post the lyrics here:
I met God's Will on a Halloween night
He was dressed as a bag of leaves
It hid the braces on his legs at first
His smile was as bright as the August sun
When he looked at me
As he struggled down the driveway, it almost
Made me hurt
Will don't walk too good
Will don't talk too good
He won't do the things that the other kids do,
In our neighborhood
(Chorus:)
I've been searchin', wonderin', thinkin'
Lost and lookin' all my life
I've been wounded, jaded, loved and hated
I've wrestled wrong and right
He was a boy without a father
And his mother's miracle
I've been readin', writin', prayin', fightin'
I guess I would be still
Yeah, that was until
I knew God's Will
Will's mom had to work two jobs
We'd watch him when she had to work late
And we'd all laugh like I hadn't laughed
Since I don't know when
Hey Jude was his favorite song
At dinner he'd ask to pray
And then he'd pray for everybody in the world but him
(Chorus)
Before they moved to California
His mother said, they didn't think he'd live
And she said each day that I have him, well it's just
another gift
And I never got to tell her, that the boy
Showed me the truth
In crayon red, on notebook paper, he'd written
Me and God love you
I've been searchin', prayin', wounded, jaded
I guess I would be still
Yeah that was until...
I met God's Will on a Halloween night
He was dressed as a bag of leaves
Hugs To All, and ^^Angel^^
Saturday, October 29, 2005 11:35 PM CST
TUESDAY 5:30 AM: It is a sad day today, our little friend Tyler earned his angel wings this morning and Kelley earned his a couple of days ago. We have lost so many little ones this past couple of months, I don't understand it. Every time we lose a little friend, it brings back the feeling the day that Tommy passed away and it is so hard. And I know that we will have to go thru that again, twice, and I just don't see how we can, it's just not fair!
Tyler's Journal We only have 9 days left before the MPS Conference and we still don't have enough money to go, we still need $600. If you can help us, please let me know. Also, if you know of any company, group, or Foundation that might be able to help us out, PLEASE let me know! We don't want to miss the conference this year, thanks. You can make a donation from our Soy journal by clicking this link, then there is a "donate" button in the middle of the page, Soy Journal.
THURSDAY’S JOURNAL:
After I sent the kids off to school this morning I grabbed a bite to eat and then ran to the grocery store. I really didn’t do too much until the kids came home from school in the afternoon. They were both very happy when I got them off the bus. Mason came over after school also, so he goofed around for a couple hours and then I took him over to his dad’s house. John isn’t coming home tonight, he is doing an overnight haul, so the kids and I just took it easy all evening. We had dinner, watched TV and played around until it was time for bed.
FRIDAY’S JOURNAL:
Today is silly hat day at school, but the only silly hats I have were Tommy’s and I just wasn’t ready for Hunter to wear them yet so I only had a couple of Ciara’s hats. Ciara wore the only one that would fit over her pony tail, so that left the blue one for Hunter, and boy was it funny! It was a blue hand-made hat but he has a big head so I had to stretch it to get it over his head. It was very snug to his head and it covered all his hair and his ears poked out and he looked like a little forest imp, it was so funny. I took some pictures but I don’t know if it really shows how hysterically funny he looked. After I sent them off to school I was off running errands for the rest of the afternoon. The kids came home around 2:30 and then Mason came over when he got out of school. Mason has a costume dance at school tonight so we worked on his costume and then I took him home. John came home around 5:00 so we had to rush to get the kids changed and over to the baby sitter at 6:00. Today is out 10th anniversary so we are going out to dinner and to a movie. I really wanted to go to my favorite Mexican restaurant, but we just didn’t have time before the movie started so we ordered a pizza on the way so it would be ready when we got there, then headed over to the theater to see “Flight Plan” with Jodie Foster, great movie! After the movie we had to rush back to get the kids so that I could get Mason from the dance at 9:30 and then we went home and the kids were asleep in no time!
SATURDAY’S JOURNAL:
Around 3:00 this morning Ciara started breathing funny and a while later she had a big seizure. What scared me about this seizure was that she wasn't breathing while she was having it. I kept shaking her a little, hoping she would take a breath and as it was ending, she finally did. But for the next 5 hours she was still having some sort of neurological problems going on. She was very limp, but her hands were clenched and her eyes were rolled back in her head and she was doing the weird breathing. I kept trying to move her around and she was completely out of it, she hasn't done this before. I have the Diastat for her but I have never used it before. I am supposed to give it to her if she has continuous seizures that won't stop, but I don't know what this whole episode was so I didn't know if I should give it to her or not. Around 8:00 this morning she finally started coming out of it and she was looking around a little bit, moving her arm and making some "Oh" sounds. John left for work, he is doing an overnight haul so he won’t be coming home tonight. At 9:00 Ciara had another seizure, not as big as the one early this morning, but now she is in a "trance" again. After about an hour, she relaxed and went to sleep for a couple of hours. After Hunter and I had breakfast, he watched some cartoons and then I watched a movie. I got the kids dressed and we went out to Wal-Mart to get a few things for our costumes for the Halloween birthday party this evening. We got back home around 4:00 so I hooked Ciara up to the feeding pump and then got Hunter something to eat. I got everybody dressed in their costumes, Hunter is a baseball player and Ciara is a cheerleader, I am a vampire, then we headed out to the party. When we got there, the kids were dancing so Hunter grabbed the handles of Ciara’s wheelchair and danced around with her, kicking his feet and having a great time, it was so cute! After alittle while Ciara’s legs were getting cold so I brought the kids inside where the food was, that made Hunter happy. Even though I had just fed him, he ate like a horse! Ciara liked watching the other kids and she was smiling and laughing all night long. She looked so cute in her costume, she really looked like a little girl, like there was nothing wrong with her, it was so precious! I tried to take some pictures but my batteries died so I will see what I ended up with and post some new pictures Monday after Halloween is over. Hunter was getting restless so we walked over to the restaurant my sister works at and got a soda. The owner gave the kids some goodie bags and then we walked back to the party. We stayed there until 8:30, but by that time Hunter was exhausted and angry so I took the kids home. Ciara continued to laugh all night long, but Hunter was asleep as soon as we walked in the door. I posted some new pictures of Tommy being silly so check them out!
There is a song by Martina McBride called "God's Will" and I thought it would be appropriate to post the lyrics here:
I met God's Will on a Halloween night
He was dressed as a bag of leaves
It hid the braces on his legs at first
His smile was as bright as the August sun
When he looked at me
As he struggled down the driveway, it almost
Made me hurt
Will don't walk too good
Will don't talk too good
He won't do the things that the other kids do,
In our neighborhood
(Chorus:)
I've been searchin', wonderin', thinkin'
Lost and lookin' all my life
I've been wounded, jaded, loved and hated
I've wrestled wrong and right
He was a boy without a father
And his mother's miracle
I've been readin', writin', prayin', fightin'
I guess I would be still
Yeah, that was until
I knew God's Will
Will's mom had to work two jobs
We'd watch him when she had to work late
And we'd all laugh like I hadn't laughed
Since I don't know when
Hey Jude was his favorite song
At dinner he'd ask to pray
And then he'd pray for everybody in the world but him
(Chorus)
Before they moved to California
His mother said, they didn't think he'd live
And she said each day that I have him, well it's just
another gift
And I never got to tell her, that the boy
Showed me the truth
In crayon red, on notebook paper, he'd written
Me and God love you
I've been searchin', prayin', wounded, jaded
I guess I would be still
Yeah that was until...
I met God's Will on a Halloween night
He was dressed as a bag of leaves
Hugs To All, and ^^Angel^^ 
Wednesday, October 26, 2005 11:13 PM CDT
SATURDAY 9:00 AM UPDATE: Ciara just had another seizure, not as big as the one early this morning, but now she is in a "trance" again. I may just be making a trip to Kaiser in Sacramento today. Of course this happens on a day when John is out of town. Please pray that she doesn't have any more!
SATURDAY 8:00 AM CIARA UPDATE: Around 3:00 this morning Ciara started breathing funny and a while later she had a big seizure. What scared me about this seizure was that she wasn't breathing while she was having it. I kept shaking her a little, hoping she would take a breath and as it was ending, she finally did. But for the next 5 hours she was still having some sort of neurological problems going on. She was very limp, but her hands were clenched and her eyes were rolled back in her head and she was doing the weird breathing. I kept trying to move her around and she was completely out of it, she hasn't done this before. I have the Diastat for her but I have never used it before. I am supposed to give it to her if she has continuous seizures that won't stop, but I don't know what this whole episode was so I didn't know if I should give it to her or not. Around 8:00 this morning she finally started coming out of it and she was looking around a little bit, moving her arm and making some "Oh" sounds. I hope she gets better because she has a haunted house birthday party to go to this evening and I don't want her to miss it, they will have a lot of fun! Stay tuned for further updates.
TYLER UPDATE:
SATURDAY 8:00 AM: Tyler had a rough night, his O2 SATS dropped to 10 and he turned blue so they put him on a ventilator to help him breathe. Please keep up the prayers for our little buddy!
FRIDAY 1:15 PM UPDATE: Please say a prayer for our little buddy Tyler. Tyler has MPS-I and just went thru transplant. He has been in the hospital for a while with a fever and now has major breathing problems and is on 5 liters of O2. They will be taking him to the PICU so please pray that this little guy can get over this bump! You can visit Tyler's journal by clicking ehre: Tyler's Journal
SUNDAY’S JOURNAL:
We were all exhausted this morning so everybody slept in. My sister came over early because when she got to work, they said that they didn’t need her so she needed a ride home. As we were pulling out of the drive way, I noticed that we had a flat tire. So, we got out of the car and John put the spare on, apparently on our way home from Los Angeles last night we picked up a nail in the tire. I swear that Tommy had his little finger plugging that leak in the tire the whole 7 hour drive home because as soon as we got home, it went completely flat, thanks Tommy! In the afternoon John’s brother came over with some computer stuff for John. The kids and I relaxed all day and just watched TV and really didn’t do a darned thing. Around 5:00 we had to drive to Lodi to get John’s work truck and then we went back home and I made dinner. John has a big test on Tuesday at school so after dinner he went to the fire dept to study, it quiet there. The kids had a good night, but Ciara was a little fussy because of her tummy, the feeding tube is infected and we have a doctor’s appointment tomorrow.
MONDAY’S JOURNAL:
Today was a bad day, from beginning to end! After I sent Hunter to school this morning I took Ciara with me to get the flat tire fixed before we had to drive to Sacramento for her doctor’s appointment this afternoon. Apparently every body else in town also had flat tires today so there was a 2 hour wait. That was pushing it because I was supposed to pick Hunter up at school at noon so that we could get to Sacramento. So, we waited, and waited, and waited and after an hour and a half, Ciara was crying and wiggling around in her wheelchair because her belly hurt. Other people that were waiting actually kept yelling at the tire people to get our car done first because Ciara was in a lot of pain and didn’t need to be waiting, but that didn’t hurry them along. After two hours, it was our turn, but of course they didn’t have the tire size I needed. So after waiting another 45 minutes, they finally found one, but by now it was lunch time and there was only one guy working on the cars. Ciara and I went outside and stood there and watched him, or should I saw glared at him, because she was crying and I was very mad. He just couldn’t get the tire to balance, but after about 15 minutes of trying, somebody came back from lunch and it only took him 20 seconds to balance it, thank God! So, the first guy takes the spare tire off the car and somehow cuts his hand so he leaves. Now we have to wait for him to some back so when he does, Ciara and I went back inside to sit down because I figured that he was almost done. Well, we waited and waited and Ciara was just beyond crying, she really hurt. I picked her up and held her in my lap, like a baby, and she seemed to like that and quieted down. The lady next to me asked me some questions about Ciara, it seems that she was going to be going into the special education field, but she wasn’t sure what she wanted to do yet. We talked for a bout 30 minutes but then I looked out the window to see if they were finished with my car yet and it was still in the bay. After another 10 minutes I got up, still carrying Ciara like a little baby, and waited to ask them how much longer it would be. Guess what, my car was finished 25 minutes ago and they didn’t even tell me, I was only sitting 5 feet from them and they could hear Ciara screaming and the people telling them to get my car finished now, I was livid! So, I put Ciara in the car and went to get Hunter from school, it was 1:00 now. I decided to drive to Sacramento right away and maybe they could get Ciara in sooner because she was crying and in pain. For some reason when we got to the hospital, they had half of their handicapped parking spaces roped off so we had to park all the way out back. That is a long way for Hunter to have to walk and by the time we got to the front of the hospital, he was yelling and screaming and having a very hard time walking. Just as we got up to the second floor and were about to open the door to the doctor’s office, he had it, he fell to the floor and couldn’t walk any more. I got Ciara into the office and then went back to get Hunter and sat him down on the chair. Ciara was past Ciara’s feeding time so I plugged her feeding tube in which really hurts her and she was went insane, screaming and crying very loud, she hasn’t cried like that in 7 months. Now for some reason the formula wouldn’t flow thru the tube very fast, it usually takes 5-10 minutes, but this time after 15 minutes, only 2 ccs had gone in. So, since I was attached to Ciara with the feeding tube, Hunter thought that it would be a great time to run free since I couldn’t chase him. He kept dancing in the middle of the office, running back to the nurses station and then opening the office door and trying to escape, all the while throwing his juice cup around the room. There was a very nice older man there and he kept getting Hunter for me, he was wonderful! So, we sat there for a hour and a half, Ciara screaming the whole time, before they took us back. We put her on the scale, but I forgot to ask what she weighed because Hunter was fussing again. The doctor came in and looked at Ciara and was very happy to see how chubby she has gotten since her surgery. She said that there was a little infection, but it was mostly granulation so she put some silver nitrate sticks on it to burn it off and that hurts a lot so Ciara was whaling and flailing around, I felt so bad for her. Before Ciara had her feeding tube put in they did that pinch test for body fat and she measured 4 cm and today she is 6 cm, but I don’t really know what that means, oh well. She called in a couple of prescriptions for Ciara so we went down to the pharmacy to wait, they said it would be about 20 minutes until they were ready. By this time Hunter and Ciara were crying and I seriously thought about going home and coming back tomorrow to get the prescriptions but I didn’t. I sat Hunter in the back of the pharmacy in a little love seat and blocked him in with Ciara’s wheelchair. He kept grabbing and poking Ciara so she was crying which made him cry and I was surprised that nobody in the pharmacy sitting by us complained, they were all very nice people. Finally our prescriptions were ready so I left Hunter sitting here because he had finally calmed down. As I was paying, all of a sudden I hear “Hunter, NO! No Hunter! Hunter! Hunter! Hunter!” Everybody in the pharmacy knew his name and was yelling because he was grabbing Ciara again and making her cry. By this time all I could do was laugh or I would have started to cry. Hunter was not happy about having to walk back to the car and by the time got there, he was exhausted and irate. I put the kids in the car and before we were out of the parking lot, Hunter was asleep. Of course we were right there by Panera but I just didn’t feel like stopping and dealing with the kids again, so I just went home. John was home when I got there and I just put the kids on the couch and flopped in the recliner and didn’t move much for the rest of the evening!
TUESDAY’S JOURNAL:
I decided to keep Ciara home one more day because her tummy hurts when she sits up because of her infected feeding tube. So, she is just going to relax and be the little princess that she is today. After I sent Hunter off to school I hooked Ciara up to the feeding pump while she was still sleeping. We stayed home all day, Ciara slept all day long, poor little thing. When Hunter came home from school I got him a snack and some juice and he watched some cartoons. I got Ciara up and in her Tumble Form chair and she was happy and watched cartoons also. Mason came over after school, he is still limping around from when he got hurt at school last week playing basketball, he really looks pitiful. I popped dinner in the oven and then took Mason home around 4:00 so he could get his homework done before his dad got home. When dinner was finished Hunter and John ate, I fed Ciara and then John had to go to his fire dept meeting at 7:00. Ciara sat in her chair for a couple of hours which surprised me because since her feeding tube has been infected, it hurts her to sit up for a long time. I put her back in the recliner so she could lay down and she was happy. Hunter and I watched TV and goofed around. John came home a little after 9:00 and then his cousin stopped by for a few minutes. Well, that was about it, then we all went to bed.
WEDNESDAY’S JOURNAL:
Today Ciara went back to school, I hope she does alright. Her tummy looks much better and isn’t oozing nearly as much, it isn’t as red and she doesn’t flinch as much when I plug in her feeding tube, so she must be getting a little better. After the kids were off to school, I had to run and out do a few errands for my mom, then I went back home and did a little cleaning. The kids came home around 2:30 and then Mason came over when he got out of school so I sent him into the office with the computer for a while because I had somebody coming over to see about getting Ciara a bath chair. I don’t know if I had mentioned it before, but it has become very hard to give Ciara a bath lately. She will be sitting up just fine and then all of a sudden she will throw herself backward and become stiff as a board. Well, I have lost her underwater a couple of times when she has done this and it is just not safe anymore. I try to wait until John is home to give her a bath, but sometimes I don’t want to wait that late. So, they are ordering her a bath chair and then I asked about getting a harness-type thing for Ciara for the car. It is like the one that Hunter wears on the school bus, but it is made specifically so that Ciara can lay down on the back seat and still be buckled in. That would make her very happy because she can’t sit for a long time and we take several long trips a year and have to stop all the time for her so that would make every body happier. My sister stopped by to see Mason on her way to work and then the therapist left and I took Mason home. John came home around 6:00 so I made dinner and we watched some TV. Ciara has been much happier today, but Hunter has been grumpy lately, not sure why. My sister came over after she got off work and we watched some TV and then around 10:00 I drove her home and then we all went to bed.
Friday is our 10th anniversary and we actually have a babysitter to watch the kids so we can go out! Debbie is taking the kids to a halloween party, she is a brave woman!
I just updated our soy journal, Bennett Children's Soy Journal It’s not looking like we will make it to the MPS Conference. We only have 2 weeks left and we just don’t have the money to go, we still need $800. If you can help out, please visit our website by clicking here: MPS Conference Donations and just click on the “Contribute” button. THANKS!
Hugs To All, and ^^Angel^^ 
Wednesday, October 26, 2005 11:13 PM CDT
SUNDAY’S JOURNAL:
We were all exhausted this morning so everybody slept in. My sister came over early because when she got to work, they said that they didn’t need her so she needed a ride home. As we were pulling out of the drive way, I noticed that we had a flat tire. So, we got out of the car and John put the spare on, apparently on our way home from Los Angeles last night we picked up a nail in the tire. I swear that Tommy had his little finger plugging that leak in the tire the whole 7 hour drive home because as soon as we got home, it went completely flat, thanks Tommy! In the afternoon John’s brother came over with some computer stuff for John. The kids and I relaxed all day and just watched TV and really didn’t do a darned thing. Around 5:00 we had to drive to Lodi to get John’s work truck and then we went back home and I made dinner. John has a big test on Tuesday at school so after dinner he went to the fire dept to study, it quiet there. The kids had a good night, but Ciara was a little fussy because of her tummy, the feeding tube is infected and we have a doctor’s appointment tomorrow.
MONDAY’S JOURNAL:
Today was a bad day, from beginning to end! After I sent Hunter to school this morning I took Ciara with me to get the flat tire fixed before we had to drive to Sacramento for her doctor’s appointment this afternoon. Apparently every body else in town also had flat tires today so there was a 2 hour wait. That was pushing it because I was supposed to pick Hunter up at school at noon so that we could get to Sacramento. So, we waited, and waited, and waited and after an hour and a half, Ciara was crying and wiggling around in her wheelchair because her belly hurt. Other people that were waiting actually kept yelling at the tire people to get our car done first because Ciara was in a lot of pain and didn’t need to be waiting, but that didn’t hurry them along. After two hours, it was our turn, but of course they didn’t have the tire size I needed. So after waiting another 45 minutes, they finally found one, but by now it was lunch time and there was only one guy working on the cars. Ciara and I went outside and stood there and watched him, or should I saw glared at him, because she was crying and I was very mad. He just couldn’t get the tire to balance, but after about 15 minutes of trying, somebody came back from lunch and it only took him 20 seconds to balance it, thank God! So, the first guy takes the spare tire off the car and somehow cuts his hand so he leaves. Now we have to wait for him to some back so when he does, Ciara and I went back inside to sit down because I figured that he was almost done. Well, we waited and waited and Ciara was just beyond crying, she really hurt. I picked her up and held her in my lap, like a baby, and she seemed to like that and quieted down. The lady next to me asked me some questions about Ciara, it seems that she was going to be going into the special education field, but she wasn’t sure what she wanted to do yet. We talked for a bout 30 minutes but then I looked out the window to see if they were finished with my car yet and it was still in the bay. After another 10 minutes I got up, still carrying Ciara like a little baby, and waited to ask them how much longer it would be. Guess what, my car was finished 25 minutes ago and they didn’t even tell me, I was only sitting 5 feet from them and they could hear Ciara screaming and the people telling them to get my car finished now, I was livid! So, I put Ciara in the car and went to get Hunter from school, it was 1:00 now. I decided to drive to Sacramento right away and maybe they could get Ciara in sooner because she was crying and in pain. For some reason when we got to the hospital, they had half of their handicapped parking spaces roped off so we had to park all the way out back. That is a long way for Hunter to have to walk and by the time we got to the front of the hospital, he was yelling and screaming and having a very hard time walking. Just as we got up to the second floor and were about to open the door to the doctor’s office, he had it, he fell to the floor and couldn’t walk any more. I got Ciara into the office and then went back to get Hunter and sat him down on the chair. Ciara was past Ciara’s feeding time so I plugged her feeding tube in which really hurts her and she was went insane, screaming and crying very loud, she hasn’t cried like that in 7 months. Now for some reason the formula wouldn’t flow thru the tube very fast, it usually takes 5-10 minutes, but this time after 15 minutes, only 2 ccs had gone in. So, since I was attached to Ciara with the feeding tube, Hunter thought that it would be a great time to run free since I couldn’t chase him. He kept dancing in the middle of the office, running back to the nurses station and then opening the office door and trying to escape, all the while throwing his juice cup around the room. There was a very nice older man there and he kept getting Hunter for me, he was wonderful! So, we sat there for a hour and a half, Ciara screaming the whole time, before they took us back. We put her on the scale, but I forgot to ask what she weighed because Hunter was fussing again. The doctor came in and looked at Ciara and was very happy to see how chubby she has gotten since her surgery. She said that there was a little infection, but it was mostly granulation so she put some silver nitrate sticks on it to burn it off and that hurts a lot so Ciara was whaling and flailing around, I felt so bad for her. Before Ciara had her feeding tube put in they did that pinch test for body fat and she measured 4 cm and today she is 6 cm, but I don’t really know what that means, oh well. She called in a couple of prescriptions for Ciara so we went down to the pharmacy to wait, they said it would be about 20 minutes until they were ready. By this time Hunter and Ciara were crying and I seriously thought about going home and coming back tomorrow to get the prescriptions but I didn’t. I sat Hunter in the back of the pharmacy in a little love seat and blocked him in with Ciara’s wheelchair. He kept grabbing and poking Ciara so she was crying which made him cry and I was surprised that nobody in the pharmacy sitting by us complained, they were all very nice people. Finally our prescriptions were ready so I left Hunter sitting here because he had finally calmed down. As I was paying, all of a sudden I hear “Hunter, NO! No Hunter! Hunter! Hunter! Hunter!” Everybody in the pharmacy knew his name and was yelling because he was grabbing Ciara again and making her cry. By this time all I could do was laugh or I would have started to cry. Hunter was not happy about having to walk back to the car and by the time got there, he was exhausted and irate. I put the kids in the car and before we were out of the parking lot, Hunter was asleep. Of course we were right there by Panera but I just didn’t feel like stopping and dealing with the kids again, so I just went home. John was home when I got there and I just put the kids on the couch and flopped in the recliner and didn’t move much for the rest of the evening!
TUESDAY’S JOURNAL:
I decided to keep Ciara home one more day because her tummy hurts when she sits up because of her infected feeding tube. So, she is just going to relax and be the little princess that she is today. After I sent Hunter off to school I hooked Ciara up to the feeding pump while she was still sleeping. We stayed home all day, Ciara slept all day long, poor little thing. When Hunter came home from school I got him a snack and some juice and he watched some cartoons. I got Ciara up and in her Tumble Form chair and she was happy and watched cartoons also. Mason came over after school, he is still limping around from when he got hurt at school last week playing basketball, he really looks pitiful. I popped dinner in the oven and then took Mason home around 4:00 so he could get his homework done before his dad got home. When dinner was finished Hunter and John ate, I fed Ciara and then John had to go to his fire dept meeting at 7:00. Ciara sat in her chair for a couple of hours which surprised me because since her feeding tube has been infected, it hurts her to sit up for a long time. I put her back in the recliner so she could lay down and she was happy. Hunter and I watched TV and goofed around. John came home a little after 9:00 and then his cousin stopped by for a few minutes. Well, that was about it, then we all went to bed.
WEDNESDAY’S JOURNAL:
Today Ciara went back to school, I hope she does alright. Her tummy looks much better and isn’t oozing nearly as much, it isn’t as red and she doesn’t flinch as much when I plug in her feeding tube, so she must be getting a little better. After the kids were off to school, I had to run and out do a few errands for my mom, then I went back home and did a little cleaning. The kids came home around 2:30 and then Mason came over when he got out of school so I sent him into the office with the computer for a while because I had somebody coming over to see about getting Ciara a bath chair. I don’t know if I had mentioned it before, but it has become very hard to give Ciara a bath lately. She will be sitting up just fine and then all of a sudden she will throw herself backward and become stiff as a board. Well, I have lost her underwater a couple of times when she has done this and it is just not safe anymore. I try to wait until John is home to give her a bath, but sometimes I don’t want to wait that late. So, they are ordering her a bath chair and then I asked about getting a harness-type thing for Ciara for the car. It is like the one that Hunter wears on the school bus, but it is made specifically so that Ciara can lay down on the back seat and still be buckled in. That would make her very happy because she can’t sit for a long time and we take several long trips a year and have to stop all the time for her so that would make every body happier. My sister stopped by to see Mason on her way to work and then the therapist left and I took Mason home. John came home around 6:00 so I made dinner and we watched some TV. Ciara has been much happier today, but Hunter has been grumpy lately, not sure why. My sister came over after she got off work and we watched some TV and then around 10:00 I drove her home and then we all went to bed.
Friday is our 10th anniversary and we actually have a babysitter to watch the kids so we can go out! Debbie is taking the kids to a halloween party, she is a brave woman! I just updated our soy journal, Bennett Children's Soy Journal It’s not looking like we will make it to the MPS Conference. We only have 2 weeks left and we just don’t have the money to go, we still need $800. If you can help out, please visit our website by clicking here: http://www.helpachild.net/ and just click on the “Contribute” button. THANKS!
Hugs To All, and ^^Angel^^ 
Wednesday, October 26, 2005 11:13 PM CDT
SUNDAY’S JOURNAL:
We were all exhausted this morning so everybody slept in. My sister came over early because when she got to work, they said that they didn’t need her so she needed a ride home. As we were pulling out of the drive way, I noticed that we had a flat tire. So, we got out of the car and John put the spare on, apparently on our way home from Los Angeles last night we picked up a nail in the tire. I swear that Tommy had his little finger plugging that leak in the tire the whole 7 hour drive home because as soon as we got home, it went completely flat, thanks Tommy! In the afternoon John’s brother came over with some computer stuff for John. The kids and I relaxed all day and just watched TV and really didn’t do a darned thing. Around 5:00 we had to drive to Lodi to get John’s work truck and then we went back home and I made dinner. John has a big test on Tuesday at school so after dinner he went to the fire dept to study, it quiet there. The kids had a good night, but Ciara was a little fussy because of her tummy, the feeding tube is infected and we have a doctor’s appointment tomorrow.
MONDAY’S JOURNAL:
Today was a bad day, from beginning to end! After I sent Hunter to school this morning I took Ciara with me to get the flat tire fixed before we had to drive to Sacramento for her doctor’s appointment this afternoon. Apparently every body else in town also had flat tires today so there was a 2 hour wait. That was pushing it because I was supposed to pick Hunter up at school at noon so that we could get to Sacramento. So, we waited, and waited, and waited and after an hour and a half, Ciara was crying and wiggling around in her wheelchair because her belly hurt. Other people that were waiting actually kept yelling at the tire people to get our car done first because Ciara was in a lot of pain and didn’t need to be waiting, but that didn’t hurry them along. After two hours, it was our turn, but of course they didn’t have the tire size I needed. So after waiting another 45 minutes, they finally found one, but by now it was lunch time and there was only one guy working on the cars. Ciara and I went outside and stood there and watched him, or should I saw glared at him, because she was crying and I was very mad. He just couldn’t get the tire to balance, but after about 15 minutes of trying, somebody came back from lunch and it only took him 20 seconds to balance it, thank God! So, the first guy takes the spare tire off the car and somehow cuts his hand so he leaves. Now we have to wait for him to some back so when he does, Ciara and I went back inside to sit down because I figured that he was almost done. Well, we waited and waited and Ciara was just beyond crying, she really hurt. I picked her up and held her in my lap, like a baby, and she seemed to like that and quieted down. The lady next to me asked me some questions about Ciara, it seems that she was going to be going into the special education field, but she wasn’t sure what she wanted to do yet. We talked for a bout 30 minutes but then I looked out the window to see if they were finished with my car yet and it was still in the bay. After another 10 minutes I got up, still carrying Ciara like a little baby, and waited to ask them how much longer it would be. Guess what, my car was finished 25 minutes ago and they didn’t even tell me, I was only sitting 5 feet from them and they could hear Ciara screaming and the people telling them to get my car finished now, I was livid! So, I put Ciara in the car and went to get Hunter from school, it was 1:00 now. I decided to drive to Sacramento right away and maybe they could get Ciara in sooner because she was crying and in pain. For some reason when we got to the hospital, they had half of their handicapped parking spaces roped off so we had to park all the way out back. That is a long way for Hunter to have to walk and by the time we got to the front of the hospital, he was yelling and screaming and having a very hard time walking. Just as we got up to the second floor and were about to open the door to the doctor’s office, he had it, he fell to the floor and couldn’t walk any more. I got Ciara into the office and then went back to get Hunter and sat him down on the chair. Ciara was past Ciara’s feeding time so I plugged her feeding tube in which really hurts her and she was went insane, screaming and crying very loud, she hasn’t cried like that in 7 months. Now for some reason the formula wouldn’t flow thru the tube very fast, it usually takes 5-10 minutes, but this time after 15 minutes, only 2 ccs had gone in. So, since I was attached to Ciara with the feeding tube, Hunter thought that it would be a great time to run free since I couldn’t chase him. He kept dancing in the middle of the office, running back to the nurses station and then opening the office door and trying to escape, all the while throwing his juice cup around the room. There was a very nice older man there and he kept getting Hunter for me, he was wonderful! So, we sat there for a hour and a half, Ciara screaming the whole time, before they took us back. We put her on the scale, but I forgot to ask what she weighed because Hunter was fussing again. The doctor came in and looked at Ciara and was very happy to see how chubby she has gotten since her surgery. She said that there was a little infection, but it was mostly granulation so she put some silver nitrate sticks on it to burn it off and that hurts a lot so Ciara was whaling and flailing around, I felt so bad for her. Before Ciara had her feeding tube put in they did that pinch test for body fat and she measured 4 cm and today she is 6 cm, but I don’t really know what that means, oh well. She called in a couple of prescriptions for Ciara so we went down to the pharmacy to wait, they said it would be about 20 minutes until they were ready. By this time Hunter and Ciara were crying and I seriously thought about going home and coming back tomorrow to get the prescriptions but I didn’t. I sat Hunter in the back of the pharmacy in a little love seat and blocked him in with Ciara’s wheelchair. He kept grabbing and poking Ciara so she was crying which made him cry and I was surprised that nobody in the pharmacy sitting by us complained, they were all very nice people. Finally our prescriptions were ready so I left Hunter sitting here because he had finally calmed down. As I was paying, all of a sudden I hear “Hunter, NO! No Hunter! Hunter! Hunter! Hunter!” Everybody in the pharmacy knew his name and was yelling because he was grabbing Ciara again and making her cry. By this time all I could do was laugh or I would have started to cry. Hunter was not happy about having to walk back to the car and by the time got there, he was exhausted and irate. I put the kids in the car and before we were out of the parking lot, Hunter was asleep. Of course we were right there by Panera but I just didn’t feel like stopping and dealing with the kids again, so I just went home. John was home when I got there and I just put the kids on the couch and flopped in the recliner and didn’t move much for the rest of the evening!
TUESDAY’S JOURNAL:
I decided to keep Ciara home one more day because her tummy hurts when she sits up because of her infected feeding tube. So, she is just going to relax and be the little princess that she is today. After I sent Hunter off to school I hooked Ciara up to the feeding pump while she was still sleeping. We stayed home all day, Ciara slept all day long, poor little thing. When Hunter came home from school I got him a snack and some juice and he watched some cartoons. I got Ciara up and in her Tumble Form chair and she was happy and watched cartoons also. Mason came over after school, he is still limping around from when he got hurt at school last week playing basketball, he really looks pitiful. I popped dinner in the oven and then took Mason home around 4:00 so he could get his homework done before his dad got home. When dinner was finished Hunter and John ate, I fed Ciara and then John had to go to his fire dept meeting at 7:00. Ciara sat in her chair for a couple of hours which surprised me because since her feeding tube has been infected, it hurts her to sit up for a long time. I put her back in the recliner so she could lay down and she was happy. Hunter and I watched TV and goofed around. John came home a little after 9:00 and then his cousin stopped by for a few minutes. Well, that was about it, then we all went to bed.
WEDNESDAY’S JOURNAL:
Today Ciara went back to school, I hope she does alright. Her tummy looks much better and isn’t oozing nearly as much, it isn’t as red and she doesn’t flinch as much when I plug in her feeding tube, so she must be getting a little better. After the kids were off to school, I had to run and out do a few errands for my mom, then I went back home and did a little cleaning. The kids came home around 2:30 and then Mason came over when he got out of school so I sent him into the office with the computer for a while because I had somebody coming over to see about getting Ciara a bath chair. I don’t know if I had mentioned it before, but it has become very hard to give Ciara a bath lately. She will be sitting up just fine and then all of a sudden she will throw herself backward and become stiff as a board. Well, I have lost her underwater a couple of times when she has done this and it is just not safe anymore. I try to wait until John is home to give her a bath, but sometimes I don’t want to wait that late. So, they are ordering her a bath chair and then I asked about getting a harness-type thing for Ciara for the car. It is like the one that Hunter wears on the school bus, but it is made specifically so that Ciara can lay down on the back seat and still be buckled in. That would make her very happy because she can’t sit for a long time and we take several long trips a year and have to stop all the time for her so that would make every body happier. My sister stopped by to see Mason on her way to work and then the therapist left and I took Mason home. John came home around 6:00 so I made dinner and we watched some TV. Ciara has been much happier today, but Hunter has been grumpy lately, not sure why. My sister came over after she got off work and we watched some TV and then around 10:00 I drove her home and then we all went to bed. Friday is our 10th anniversary and we actually have a babysitter to watch the kids so we can go out! Debbie is taking the kids to a halloween party, she is a brave woman! I just updated our soy journal, Bennett Children's Soy Journal It’s not looking like we will make it to the MPS Conference. We only have 2 weeks left and we just don’t have the money to go, we still need $800. If you can help out, please visit our website by clicking here: http://www.helpachild.net/ and just click on the “Contribute” button. THANKS!
Hugs To All, and ^^Angel^^
Saturday, October 22, 2005 3:01 AM CDT
MONDAY AM: Ciara has a doctor’s appointment this afternoon so check back tonight for an update. I am hoping that it is just something she needs antibiotics for and nothing worse. I might even get the kids’ their flu shots while we are there.
FRIDAY’S JOURNAL:
John had to go to work at 4:00 this morning so that he would be done in time for us to drive to Los Angeles for the MPS Run. I woke up around 6:00 so I started packing and I hooked Ciara up to her feeding pump. A couple of days ago, Mason had an accident at school so now he is on crutches so I picked him up and took him to school. I went back home and finished packing the car and around 9:30 the kids and I headed out to Stockton to pick John up at his work. We headed out to Los Angeles, it is about a six hour drive so I was hoping that the kids would do alright, especially Ciara. We had to take our dog with us, I don’t think she was too happy with that idea, but she did great on the ride and so did the kids. We got to the hotel around 4:00 and I tossed the kids in the bath tub. We were out of wipeys so luckily there was a Target near the hotel so I called my friend Kim to see if they wanted to go with us. Kim lives about an hour away from us, her son Scotty has MPS-II. We all went to Target and Hunter was very grumpy, I think he had a long day and was very tired. After we roamed around the store for a while, Kim, Scotty, and her friend went back to the hotel and we went to Sizzler for dinner. Hunter ate so much we thought he was going to explode, and Ciara REALLY enjoyed her chocolate pudding. When we were finished we went back to the hotel, I fed Ciara, we changed their clothes and Hunter and John were reading in bed. Ciara and I went downstairs to visit with some MPS friends for a little bit. Thanks for the Kool-Aid Jen! Ciara and I went back to our room and went to bed, it was late and we have to be at the run at 7:30 in the morning.
SATURDAY’S JOURNAL:
I woke up early and fed Ciara, then we got dressed and were off to the MPS run. We got there early so I registered and we just waited for the other MPS families to arrive. Hunter was still tired from the day before so he was a little grumpy, but Ciara was having a great time. She loved to watch every body and was very alert and happy. She was a little grumpy at times, I think it is because her feeding tube is infected and it hurts. I called the doctor on Thursday but they couldn’t get her in until Monday so I am cleaning it and hoping she will be alright until then. If it gets worse, we will take her to the ER here in LA. Once the other families started to arrive, things picked up and we were having a great time visiting with every body. If we don’t get to go to the MPS Conference, at least we got to visit with friends at the run today. Some of the kids were putting MPS Ribbon tattoos on people, it was cute, even Hunter got one! The runners started their race and then about half an hour later, it was our turn to start the 1 mile walk. Hunter fell asleep on the walk, but Ciara really liked it and it was fun to see all the houses decorated for Halloween. When we got to the end of the walk, Ciara and Hunter actually walked across the finish line and then we walked over to the area by the podium and waited for them to announce the winners. Ciara and Hunter got a medal with their names on them and I was surprised that they had one for Tommy with his name on it. Tami, than you so much for doing that, you have no idea how much that meant to me! Once the people started to leave, it was time for the MPS Family Party. The caterers started to set up the food so we sat at a table while there was still some seats left and talked with friends. Priscilla sat with us, her son Joey has Sanfilippo and today is his birthday and she flew in from Cape Cod for the run. Robin was there too, her brother also has Sanfilippo and he is 26 years old, he lives in Texas. After we finished eating, it was time for us to leave because we had a long drive ahead of us. On the way home we are going to stop in Monterey to visit my dad and his wife and some friends, their daughter has Sanfilippo. We stopped with visit Jacqueline first and we ended up staying for dinner. Ciara was very happy to get out of the car and she fell asleep on their couch as soon as we got there. Hunter and Jacq were playing, but Hunter was grumpy again, until it was time for dinner, then he was happy again. We left their house around 7:30 and went over to visit my dad. They haven’t seen the kids since right before Ciara got her feeding tube in March. My dad was surprised at how tall Hunter has gotten and how much weight Ciara has gained. Of course both kids fell asleep when we got there, but around 9:00 we had to hit the road, it was still another 3 hour drive home. We got home around 12:30 and both kids went right to bed and we did too!
I just made a slide show with pictures from the MPS run so just click here to see it: MPS RUN PICS We still don’t have enough money to go to the MPS Conference. I had to send in the registration fees last week, but I still don’t know if we will be able to make it, we still need $800. If you can help out, please visit our website by clicking here: HELPACHILD.NET and just click on the “Contribute” button. THANKS!
Hugs To All, and ^^Angel^^ 
Thursday, October 20, 2005 12:17 AM CDT
Last week I had mentioned some MPS kids in need of your prayers. As you know, Brooke passed away a few days ago. BUT, Kelley and BJ are doing better and will hopefully be discharged during this next week so keep up the prayers, they are working!
THURSDAY 8:00 PM: There is another Sanfilippo child at Duke for transplant right now. I have mentioned her before, her name is Graciela. Here is the email that I received from her parents:
Thank you all so much for your hard work love and support of Graciela. She is now inpatient at DUKE on the Bone Marrow Unit. She has been recieing Chemo since early Monday and will through her infusion of new cells next week. Her caringbridge site Graciela's Journal was updated with her new photo's of her without hair. Please continue to support her with your prayers, love and support and please get involved if you are able, she really needs your help. We love you all and are eternally grateful for the beautiful gift of this little angel God has shared with us for a season.
God Bless you,
Sergio, Naomi, Graciela, and Baby Rachel
This Week’s Journal:
Ciara and Hunter went back to school this week, thank God! I don’t know what I would do if I had to care for Ciara 24/7, it is so much work! At least I get a little break when they are at school. I was giving the kids a bath on Sunday and I don’t know what happened, but Ciara couldn’t sit up, all of a sudden her body went straight and stiff as a board and I couldn’t hold on to her and get the shampoo off her head and I lost her under the water a couple of times. I was on the verge of tears because I couldn’t do anything with her. Ten months ago we ordered her a bath chair, before she ever needed it, and we still don’t have it because of the damned insurance. We ordered her wheelchair and air bed at the same time and we don’t have those yet either. I don’t understand why it takes so long to get things that we need immediately for our children. Are the insurance companies just hoping that we will go away and not fight for it? Are they hoping that if they deny us the necessary items to care for our children, that the children will die and they won’t have to pay? I DON’T GET IT!!! Can you tell I am angry?! Anyway, the kids have had a good week. Ciara doesn’t like to lay down, she wants to be sitting up all the time but that causes her to get bed sores on her behind so I fight with her all day because I have to keep changing positions and she doesn’t like it too much. Hunter has been falling more often, but it might be because I took them off the soy for a few days. Ciara was acting funny about the same time I added a few things to their diets so I just stopped it all and am starting things again one at a time to see how they do. We are leaving Friday (tomorrow) to go to Los Angeles for the MPS RUN LA and we are so excited! We will be coming home on Saturday evening so I will try to post an update and pictures on Sunday so check back then! We still don’t have enough money to go to the MPS Conference. I had to send in the registration fees last week, but I still don’t know if we will be able to make it, we still need $800. If you can help out, please visit our website by clicking here: HELPACHILD.NET and just click on the “Contribute” button. THANKS!
Hugs To All, and ^^Angel^^ 
Monday, October 17, 2005 11:02 AM CDT
MONDAY 5:00 PM UPDATE: Brooke just earned her angel wings. I don't know what else to say.
I just put up some new pictures so check them out!
In my last journal entry I had mentioned some MPS kids in need of prayers. They are still all holding on and they still need your prayers so keep them up! We still don’t have enough money to go to the MPS Conference. I had to send in the registration fees last week, but I still don’t know if we will be able to make it, we still need $800. If you can help out, please visit our Conference website by clicking here: MPS Conference Donations Website
and ^^Angel^^ 
Sunday, October 16, 2005 1:40 AM CDT
and ^^Angel^^
Sunday, October 16, 2005 1:40 AM CDT
and ^^Angel^^ Sunday, October 9, 2005 4:26 PM CDT
WEDNESDAY UPDATE: I just wanted to let you all know that the professor in Poland has officially started his study on Genestein (Soy) with Sanfilippo children today. I will keep you all up to date on what happens with his study! This is very exciting news!!! We still don’t have enough money to go to the MPS Conference. I had to send in the registration fees last week, but I still don’t know if we will be able to make it, we still need $800. If you can help out, please visit our Conference website by clicking here: MPS CONFERENCE DONATION WEBSITE
I just updated our soy journal, you can visit it by clicking here: BENNETT CHILDREN'S SOY JOURNAL and ^^Angel^^ 
Saturday, October 8, 2005 6:07 AM CDT
SATURDAY 6:15 AM UPDATE: Ciara just had a seizure, it was a fairly good one and lasted about 3 minutes. Thursday night I told a friend that I wouldn't be surprised if Ciara had a seizure in the next 24 hours, unfortunately I was right. But, she is back to her old self now and watching cartoons. This week has been a very busy week so I will post an update tonight, right now I am off to the tri-tip booth for the fire dept and John is on his way to the fire dept chili cook-off!
THURSDAY UPDATE: I just heard from a friend who's 10 year old son has MPS-II, Hunter's Syndrome. They lost everything in Hurricane Katrina and had to evacuate to Texas. They are all OK, but she needs some things for her son. If you can help out, please let me know. He needs Depends diapers size small/medium, T-shirts and pajamas size 14/16 or XL, and boys socks size 9 1/2-2. The other problem is that since they are not in the state and have no place to return to, the state said that if they don't return to the state ASAP, they are cutting off his Medi-caid, so now she can't pick up his prescriptions for his antibiotics and his heart meds so if you are able to help with any money to send them to get his meds, please let me know and I will get the address to you. I can't imagine what I would do if I lost all of the kids' things, had no diapers or clothes for them. Having lost everything and on top of that to have an MPS child who doesn't know what's going on, I just can't comprehend what this family is going thru.
Hugs To All, and ^^Angel^^ 
Sunday, October 2, 2005 3:33 PM CDT
THURSDAY UPDATE: I just heard from a friend who's 10 year old son has MPS-II, Hunter's Syndrome. They lost everything in Hurricane Katrina and had to evacuate to Texas. They are all OK, but she needs some things for her son. If you can help out, please let me know. He needs Depends diapers size small/medium, T-shirts and pajamas size 14/16 or XL, and boys socks size 9 1/2-2. The other problem is that since they are not in the state and have no place to return to, the state said that if they don't return to the state ASAP, they are cutting off his Medi-caid, so now she can't pick up his prescriptions for his antibiotics and his heart meds so if you are able to help with any money to send them to get his meds, please let me know and I will get the address to you. I can't imagine what I would do if I lost all of the kids' things, had no diapers or clothes for them. Having lost everything and on top of that to have an MPS child who doesn't know what's going on, I just can't comprehend what this family is going thru.
OK, I want to warn you all, I have finally posted pictures from Tommy's funeral. There are some pictures of him in the casket, so I just wanted to let you know. It has been almost 2 years since we lost our little buddy, but I feel that I can share these with you now, here is the link: Tommy's Funeral Pictures
This Week’s Journal:
This past week has been a very sad time, as you know Jillian passed away on Wednesday and it was and still is very hard on me. Her funeral was yesterday and I really wanted to go, but there was just no way we could have. We are still trying to get enough money to go to the MPS Conference next month but we still need $1000 to go. I have to send the money in by October 10 so I am praying that we can get it somewhere. We are also going to the Los Angeles area in 3 weeks for the MPS run so that will be fun too.
Ciara and Hunter have been doing very well this past week. It was so cute, on Tuesday morning Hunter woke up and jumped up and ran over to the recliner where Ciara was laying down (I had her hooked up to her feeding pump) and he climbed up into the chair and sat almost on top of her, facing her, and just played with her hands, it was so sweet. Tuesday evening we went to the fire department meeting. Wednesday I had to take my mom to her doctor in Sacramento and when I got home, I got the message that Jillian has just passed away. I spent the rest of the day and evening on the phone and computer with everybody. John is still going to school on Tuesdays and Thursdays and he really likes it, he is going to be an emergency room nurse. That was pretty much it for the week, I haven’t really done much, but think of all the special angels in heaven.
Hugs To All, and ^^Angel^^ 
Monday, September 26, 2005 2:48 PM CDT
THURSDAY 8:45 PM UPDATE: Below are the funeral arrangements for Jillian Fitzpatrick. If you have any questions, just send me an email.
Saturday October 1, 2005
Viewing is at 10:30 AM
Carlson Funeral Home
www.carlsonfuneralhomes.com
You can order flowers from this website, they are part of the funeral home www.baywindowflorist.com
Funeral is at 11:00 AM
St. Francis Xavier Catholic Church in Medina Ohio
http://stfrancisxavier.info/parish/Index.html It is with a very sad heart that I tell you that Jillian earned her angel wings a little before 1:00 this afternoon. I honestly don't know what to say, Jillian took a piece of my heart the day we met her at Duke. As most of you know, she and Tommy were transplanted together, Jillian was the 5th Sanfilippo child transplanted and Tommy was the 6th. For a year I spent every day with Jillian, Tommy just loved to baby her, he thought he was her mother and helped her eat and it was so cute! I know that Tommy was there to guide her to Heaven today and right now they are watching Dora together. We all miss you both terribly! I have a few Jillian pictures still up in our photo album so if you would like to take a look, here is the link: TRANSPLANT FRIEND'S PHOTOS
Words from an Angel
I have not turned my back on you,
So there is no need to cry.
I'm watching you from Heaven,
Just beyond the morning sky.
I've seen you almost fall apart,
When you could barely stand.
I asked the Lord to comfort you,
And watched him take your hand.
He told me you are in more pain,
Than I could ever be.
He wiped his eyes and swallowed hard,
Then gave your hand to me.
Although you may not feel my touch,
Or see me by your side.
I've whispered that I love you,
While I wiped each tear you cried.
So please try not to ache for me,
We'll meet again one day.
Beyond the dark and stormy sky,
A rainbow lights the way.
TUESDAY 4:00 PM JILLIAN UPDATE: I just talked to Michelle and the doctors think that Jillian only has 48 hours left, if that. Without oxygen her pulse ox is 73 percent and when she is on 2 liters of oxygen it is at 80 percent. Her lungs sound junky so they think that they are infected. Please keep checking in for further updates and don't stop your prayers!
Last Week:
Last week as a very sad week, we lost several MPS children and there are a few MPS and transplant friends that aren’t doing very well today. I would like to start today’s journal by updating you all about Jillian. Michelle called me yesterday to tell me that Jillian has an infection in her kidney and she isn’t doing very well. They decided that Jillian has been thru enough and they have stopped giving her any med, other then Morphine for pain, they have stopped giving her blood and they have changed her feedings so now she will be getting something thru her feeding tube so she isn’t dehydrated, but that is all. The doctor’s don’t know how long it will be before Jillian gains her angel wings, it could be 24 hours or it could be a week. So, please pray for Jillian and her family and you can leave a message in their guestbook by clicking here: Jillian's Journal 
OK, on to what we were up to last week. Ciara and Hunter have been doing very well this week. On Tuesday we went to the fire dept meeting and the guys trained on gasoline tanker fires. It was a little freaky because as they were training, it was raining and lightening and we were all praying that the lightening didn’t hit the tanker the guys were crawling all over. After the training was over we all went back to the fire dept to finish the meeting. The chief pulled out two new tool sets to put on the engines to break into cars when people lock their keys inside with their kids in the car. It was about that time that John and some of the guys had to leave on a fire call, caused by lightening, so I stayed and talked for a while. I had the kids in the car with the dog and left it running right in front of the fire dept where we were all standing, but when I went to leave, the car was locked. Apparently John had hit the lock button on his keys before they left on the fire call so my car was running with Hunter, Ciara, and S’More inside. Needless to say, the guys had to get to work with their new tools to break into my car. Just as they got it open, John came back and we all had a good laugh and then I took the kids home while John stayed for a while. Thursday was John’s birthday so while the kids were at school, he and I went out to lunch. Ciara gave him the best birthday present, as we were watching TV in the evening, she started laughing and giggling and having a great time! When the kids came home from school on Friday I read the note the teacher sent home and she said that Ciara was very lively at school today. Hunter has been very happy and laughs a lot lately too. On Saturday John and his cousins went hunting so the kids and I went out to the grocery store and then we watched a couple of movies when we got home. John didn’t get home until late that night and he said that the only deer they saw was the one they almost hit on their way home. Well, that was our week, I hope things get better with these little kiddos, I honestly don’t know how much more we can all take.
Hugs To All, and ^^Angel^^ 
Monday, September 26, 2005 2:48 PM CDT
Last Week:
Last week as a very sad week, we lost several MPS children and there are a few MPS and transplant friends that aren’t doing very well today. I would like to start today’s journal by updating you all about Jillian. Michelle called me yesterday to tell me that Jillian has an infection in her kidney and she isn’t doing very well. They decided that Jillian has been thru enough and they have stopped giving her any med, other then Morphine for pain, they have stopped giving her blood and they have changed her feedings so now she will be getting something thru her feeding tube so she isn’t dehydrated, but that is all. The doctor’s don’t know how long it will be before Jillian gains her angel wings, it could be 24 hours or it could be a week. So, please pray for Jillian and her family and you can leave a message in their guestbook by clicking here: Jillian's Journal
OK, on to what we were up to last week. Ciara and Hunter have been doing very well this week. On Tuesday we went to the fire dept meeting and the guys trained on gasoline tanker fires. It was a little freaky because as they were training, it was raining and lightening and we were all praying that the lightening didn’t hit the tanker the guys were crawling all over. After the training was over we all went back to the fire dept to finish the meeting. The chief pulled out two new tool sets to put on the engines to break into cars when people lock their keys inside with their kids in the car. It was about that time that John and some of the guys had to leave on a fire call, caused by lightening, so I stayed and talked for a while. I had the kids in the car with the dog and left it running right in front of the fire dept where we were all standing, but when I went to leave, the car was locked. Apparently John had hit the lock button on his keys before they left on the fire call so my car was running with Hunter, Ciara, and S’More inside. Needless to say, the guys had to get to work with their new tools to break into my car. Just as they got it open, John came back and we all had a good laugh and then I took the kids home while John stayed for a while. Thursday was John’s birthday so while the kids were at school, he and I went out to lunch. Ciara gave him the best birthday present, as we were watching TV in the evening, she started laughing and giggling and having a great time! When the kids came home from school on Friday I read the note the teacher sent home and she said that Ciara was very lively at school today. Hunter has been very happy and laughs a lot lately too. On Saturday John and his cousins went hunting so the kids and I went out to the grocery store and then we watched a couple of movies when we got home. John didn’t get home until late that night and he said that the only deer they saw was the one they almost hit on their way home. Well, that was our week, I hope things get better with these little kiddos, I honestly don’t know how much more we can all take.
Hugs To All, and ^^Angel^^
Tuesday, September 27, 2005 2:48 PM CDT
Last Week:
Last week as a very sad week, we lost several MPS children and there are a few MPS and transplant friends that aren’t doing very well today. I would like to start today’s journal by updating you all about Jillian. Michelle called me yesterday to tell me that Jillian has an infection in her kidney and she isn’t doing very well. They decided that Jillian has been thru enough and they have stopped giving her any med, other then Morphine for pain, they have stopped giving her blood and they have changed her feedings so now she will be getting something thru her feeding tube so she isn’t dehydrated, but that is all. The doctor’s don’t know how long it will be before Jillian gains her angel wings, it could be 24 hours or it could be a week. So, please pray for Jillian and her family and you can leave a message in their guestbook by clicking here: Jillian's Journal
OK, on to what we were up to last week. Ciara and Hunter have been doing very well this week. On Tuesday we went to the fire dept meeting and the guys trained on gasoline tanker fires. It was a little freaky because as they were training, it was raining and lightening and we were all praying that the lightening didn’t hit the tanker the guys were crawling all over. After the training was over we all went back to the fire dept to finish the meeting. The chief pulled out two new tool sets to put on the engines to break into cars when people lock their keys inside with their kids in the car. It was about that time that John and some of the guys had to leave on a fire call, caused by lightening, so I stayed and talked for a while. I had the kids in the car with the dog and left it running right in front of the fire dept where we were all standing, but when I went to leave, the car was locked. Apparently John had hit the lock button on his keys before they left on the fire call so my car was running with Hunter, Ciara, and S’More inside. Needless to say, the guys had to get to work with their new tools to break into my car. Just as they got it open, John came back and we all had a good laugh and then I took the kids home while John stayed for a while. Thursday was John’s birthday so while the kids were at school, he and I went out to lunch. Ciara gave him the best birthday present, as we were watching TV in the evening, she started laughing and giggling and having a great time! When the kids came home from school on Friday I read the note the teacher sent home and she said that Ciara was very lively at school today. Hunter has been very happy and laughs a lot lately too. On Saturday John and his cousins went hunting so the kids and I went out to the grocery store and then we watched a couple of movies when we got home. John didn’t get home until late that night and he said that the only deer they saw was the one they almost hit on their way home. Well, that was our week, I hope things get better with these little kiddos, I honestly don’t know how much more we can all take.
Hugs To All, and ^^Angel^^
Monday, September 19, 2005 9:34 AM CDT
MONDAY 7:30 AM UPDATE: I am sorry that I haven't updated yet, but I will update our journal this evening. I just wanted to let you all know that Asher gained his angel wings yesterday, but Maddie is still holding her own so keep up the prayers!
THURSDAY UPDATE: Today is John's birthday so I just wanted to wish him a wonderful birthday, I LOVE YOU!
SATURDAY’S JOURNAL
John was supposed to work this weekend, but the plant cancelled the loads so he has the weekend off. So, we all slept in this morning which was very nice. When I woke up I hooked Ciara up to the feeding pump and then watched a little TV until everybody else woke up. Then I fed everybody and we relaxed for a bit. We did make a trip to Wal-Mart and then met John’s cousin at the furniture store, then we went back home. I fed Ciara again while the kids watched some cartoons. John had to go over to his cousin’s house to help him set up his new computer so he will be gone for hours. I watched a couple of movies on TV, the kids and I had dinner and that was about it for the night. After everybody was asleep, I had a little talk with Tommy and I told him to come and visit me tomorrow.
SUNDAY’S JOURNAL HAPPY BIRTHDAY TOMMY!
Today would have been Tommy’s 6th birthday, I can’t believe that two birthdays have gone by without my little angel face. This morning John was at his cousin’s trying to get his computer to work so the kids and I spent the morning taking it easy. After breakfast we watched a movie on TV and Hunter played with his trucks while Ciara watched TV with me. They are both having a pretty good day so far, they are happy and content. When John came home he went to the fire department to do his homework so he was gone for a couple of hours or so. When he came home he mowed the lawn then it was time to go out and celebrate Tommy’s birthday. John’s dad took us out to dinner to our favorite Mexican restaurant which Tommy loved! Thanks Smoky! After dinner we went over to the cemetery, we brought Tommy some flowers and Hot Wheels cars. I hate going there, I don’t go very often. I don’t like to think of him there, I know that where every we are, Tommy is with us and I talk to him all the time, so I don’t feel the need to visit the cemetery a lot, I would rather remember him with a smile then go and cry. After we left the cemetery John went back to his cousin’s to try and get the computer working again and I took the kids home. We watched a little TV and then they both went to bed early!
MONDAY’S JOURNAL
Ciara and Hunter were both very happy when I sent them off to school this morning. After I had some breakfast, I had to take my sister out to take care of a few things, then I went back home. I put together a photo album for the fire department and then John came home from work. A few minutes later Ciara and Hunter came home and then my sister and Mason stopped by so we watched a movie. After the movie they went home and John went to the fire department to study for his Chemistry test tomorrow morning. So, for the rest of the evening it was just the kids and myself, we had dinner and watched some TV until John came home around 7:30. Ciara and Hunter were both very happy today and the teacher said that they had a great day at school. I was surprised when they both were asleep by 10:00 tonight, that was very nice!
Well, I made the hotel reservations for the MPS Conference, but I don’t know if we are going to make it. We still need $1,000 to cover the expenses and we only have a couple of weeks left before I have to pay for the registration fees which are non-refundable so I don’t know what we are going to do. We really want to go and see our friends, but so far it doesn’t look like it will work out. Plus, Caringbridge won’t let me use the donation links I had on here so I had to take those off. If anybody is interested in helping out, just send me an email. Thanks!
Hugs To All, and ^^Angel^^ 
Monday, September 19, 2005 9:34 AM CDT
SATURDAY’S JOURNAL
John was supposed to work this weekend, but the plant cancelled the loads so he has the weekend off. So, we all slept in this morning which was very nice. When I woke up I hooked Ciara up to the feeding pump and then watched a little TV until everybody else woke up. Then I fed everybody and we relaxed for a bit. We did make a trip to Wal-Mart and then met John’s cousin at the furniture store, then we went back home. I fed Ciara again while the kids watched some cartoons. John had to go over to his cousin’s house to help him set up his new computer so he will be gone for hours. I watched a couple of movies on TV, the kids and I had dinner and that was about it for the night. After everybody was asleep, I had a little talk with Tommy and I told him to come and visit me tomorrow.
SUNDAY’S JOURNAL HAPPY BIRTHDAY TOMMY!
Today would have been Tommy’s 6th birthday, I can’t believe that two birthdays have gone by without my little angel face. This morning John was at his cousin’s trying to get his computer to work so the kids and I spent the morning taking it easy. After breakfast we watched a movie on TV and Hunter played with his trucks while Ciara watched TV with me. They are both having a pretty good day so far, they are happy and content. When John came home he went to the fire department to do his homework so he was gone for a couple of hours or so. When he came home he mowed the lawn then it was time to go out and celebrate Tommy’s birthday. John’s dad took us out to dinner to our favorite Mexican restaurant which Tommy loved! Thanks Smoky! After dinner we went over to the cemetery, we brought Tommy some flowers and Hot Wheels cars. I hate going there, I don’t go very often. I don’t like to think of him there, I know that where every we are, Tommy is with us and I talk to him all the time, so I don’t feel the need to visit the cemetery a lot, I would rather remember him with a smile then go and cry. After we left the cemetery John went back to his cousin’s to try and get the computer working again and I took the kids home. We watched a little TV and then they both went to bed early!
MONDAY’S JOURNAL
Ciara and Hunter were both very happy when I sent them off to school this morning. After I had some breakfast, I had to take my sister out to take care of a few things, then I went back home. I put together a photo album for the fire department and then John came home from work. A few minutes later Ciara and Hunter came home and then my sister and Mason stopped by so we watched a movie. After the movie they went home and John went to the fire department to study for his Chemistry test tomorrow morning. So, for the rest of the evening it was just the kids and myself, we had dinner and watched some TV until John came home around 7:30. Ciara and Hunter were both very happy today and the teacher said that they had a great day at school. I was surprised when they both were asleep by 10:00 tonight, that was very nice!
http://photobucket.com/albums/v412/oshabb/Icons/th_spongebob_020.gif Well, I made the hotel reservations for the MPS Conference, but I don’t know if we are going to make it. We still need $1,000 to cover the expenses and we only have a couple of weeks left before I have to pay for the registration fees which are non-refundable so I don’t know what we are going to do. We really want to go and see our friends, but so far it doesn’t look like it will work out. Plus, Caringbridge won’t let me use the donation links I had on here so I had to take those off. If anybody is interested in helping out, just send me an email. Thanks!
Hugs To All, and ^^Angel^^ 
Sunday, September 18, 2005 1:10 PM CDT
Today would have been Tommy's 6th birthday, but to me he will always be 4 years old. So, I thought that I would post a poem that our friend Kelly wrote for Tommy on his 4th birthday. Here it is:
"Turning Four"
Little Tommy Bennett
is turning four today,
so I thought that I would
write a poem
as I have a few things to say
I met this special child
just over a year ago,
he has found his way to my heart
and even makes it glow
He has a smile and hands that clap
when he throws you a ball,
he's cuddly, sweet and handsome
and definitely not tall!
He loves his sister Ciara,
he loves her with all of his heart,
when she cries he retrieves her toy
he really is very smart
His older brother named Hunter
is also his very best friend,
they play together from morning til night
and start all over again
He spends his time at the hospital
for they are treating him at Duke,
there are a lot of nurses there
who really thinks he's cute!
His parents, Alicia and John Bennett
who both have hearts of gold,
are doing what they can to do
to raise alittle dough
For they want to save their child
and do anything they can,
for they want to see Tommy
grow up to be a man
I wish I had a cure,
I wish I knew just how,
all I have to offer
is for him to come see the cows
And don't forget the tractor,
Tommy loves to sit on the seat,
and don't forget "the green machine"
He thought that was pretty neat!
So, Mr. Tommy Bennett,
I hope that this is the year,
I hope your transplant is a success
and good health is very near
I love you very dearly
I love your family too
please tell your mom and daddy
if there's ANYTHING I can do!
HAPPY BIRTHDAY TO YOU!!!!
WE WILL BE RELEASING BALLOONS FOR TOMMY ON SUNDAY. WE WOULD LOVE IT IF YOU WOULD RELEASE A BALLOON FOR HIM AS WELL. PLEASE TAKE A PICTURE OF YOUR BALLOON RELEASE AND SEND IT TO ME, I WOULD LIKE TO PUT THEM UP IN OUR JOURNAL!
and ^^Angel^^ 
Sunday, September 18, 2005 1:10 PM CDT
Today would have been Tommy's 6th birthday, but to me he will always be 4 years old. So, I thought that I would post a poem that our friend Kelly wrote for Tommy on his 4th birthday. Here it is:
"Turning Four"
Little Tommy Bennett
is turning four today,
so I thought that I would
write a poem
as I have a few things to say
I met this special child
just over a year ago,
he has found his way to my heart
and even makes it glow
He has a smile and hands that clap
when he throws you a ball,
he's cuddly, sweet and handsome
and definitely not tall!
He loves his sister Ciara,
he loves her with all of his heart,
when she cries he retrieves her toy
he really is very smart
His older brother named Hunter
is also his very best friend,
they play together from morning til night
and start all over again
He spends his time at the hospital
for they are treating him at Duke,
there are a lot of nurses there
who really thinks he's cute!
His parents, Alicia and John Bennett
who both have hearts of gold,
are doing what they can to do
to raise alittle dough
For they want to save their child
and do anything they can,
for they want to see Tommy
grow up to be a man
I wish I had a cure,
I wish I knew just how,
all I have to offer
is for him to come see the cows
And don't forget the tractor,
Tommy loves to sit on the seat,
and don't forget "the green machine"
He thought that was pretty neat!
So, Mr. Tommy Bennett,
I hope that this is the year,
I hope your transplant is a success
and good health is very near
I love you very dearly
I love your family too
please tell your mom and daddy
if there's ANYTHING I can do!
HAPPY BIRTHDAY TO YOU!!!!
Hugs To All, and ^^Angel^^
Friday, September 16, 2005 11:33 PM CDT
WEDNESDAY’S JOURNAL
Ciara woke me up at 5:15 this morning when I heard her having a seizure. It was a moderate seizure and lasted a couple of minutes, but then she went right back to sleep and so did I. I woke up again a half hour later, but I wasn’t sure if I was going to send her to school today. About another half hour later I decided that she was looking good and alert so I hooked her up to her feeding pump and then got the kids dressed and Hunter watched Barney while we waited for the school bus to come. I told the bus driver that Ciara had a seizure earlier, but she seemed to be alright now so off they went. About 5 minutes later I got a phone call from the bus saying that Ciara was having another seizure and I told them to bring her back home. I brought her inside and put her on the couch and she took a nap, poor little thing. My mom called and said that my sister ran out of gas so I had to go help them. I put Ciara in the car and off we went to pick up my mom. While I had her in the car I stopped at the grocery store so she could stay in the car with Ciara while I ran in. After we got her car running I went back home with Ciara. Hunter came home around 2:45 and when we got back inside, he and I had a snack. Ciara took it easy all afternoon, but she was awake so that was good, and no more seizures! When John came home in the evening we had dinner and then Hunter and I played for a while, he is so silly and I just love his dimples! Ciara sat up in her Tumble Form chair for a long time tonight, several hours and she was “talking” so she is definitely feeling better. Hunter went to bed around 10:00 and Ciara finally fell asleep around 11:00.
THURSDAY’S JOURNAL
When I was putting the kids on the school bus this morning I found out that it was Christina’s birthday today, she is Ciara and Hunter’s friend. Her mom stopped by to drop off Christina’s feeding tubes and she said that they were having a party at school this afternoon, so I will be there! Around 11:00 I sat down in the recliner and I was only going to sit there for about 15 minutes, then I was going to get the rest of my things done for the day. Well, that didn’t work out because before I knew it, I had fallen asleep and when I woke up it was 1:05! I ran out of the house and went to the school for the party. When I got there Ciara and Hunter were eating a cupcake and they were both very happy. Christina opened her presents and handed out party bags and then the buses came for the kids. I put Ciara and Hunter in my car and we went home. I talked to John and he said that he wouldn’t be home until at least midnight tonight so it’s just the kids and myself for the rest of the day. After we had dinner, I put on some cartoons for the kids and I was talking on the phone. Ciara was sitting in her Tumble Form chair Tumble Form Chair and I was talking on the phone. Out of the corner of my eye I saw her slowly take her hand out of her mouth and she slowly extended her arm out in front of her. What really got my attention was the look on her face, at first I thought she might be having a seizure, but then I realized what was happening. She was concentrating very hard because our dog was standing in front of her and she was reaching out to pet the dog. When she reached her arm out, her fingers uncurled a little bit too and she leaned forward, but then the dog took a few steps and Ciara’s arm followed the dog, but she was still a couple of inches away from touching her, then the dog moved too far away. I was on the phone with another MPS mom when this happened and I started screaming because I was so happy and then the other mom was so excited too! Ciara hasn’t done that in over a year so that was a BIG night that she had! Of course I brought the dog over to her and rubbed her hands all of the dog, she earned it! That was about it for the evening, Hunter went to sleep early and Ciara fell asleep around midnight. John called and said that he won’t make it home, he was still in Nevada and out of hours so he will be home tomorrow.
FRIDAY’S JOURNAL
Ciara just did not want to wake up this morning, she was like a little rag doll when I had to get her ready for school. I was a little concerned because she is usually awake before I get up and she just wouldn’t wake up. But, when I started to brush her hair, that made her mad and she was wide awake and yelling at me, she hates to get her hair brushed! Hunter was pretty happy this morning and helped me push Ciara out to the school bus. After they were on their way, I got ready and headed out to start my long Friday. After I went to Stockton and came back home I stopped by our house to make sure that the school didn’t call before I headed out again. As I was walking out the front door, the back of my flip-flop got caught under the door as I was closing it and I stumbled down the front steps, but at least I didn’t fall. I grabbed by shoes and as I started to walk to the car, my foot really started hurting. When I stumbled, I kind of rolled on the side of my foot. So, I got in the car and went to Sacramento. When I got to where I was going, I got out of the car and that is when I realized that I had broken my little toe, OUCH! It was hurting so bad and it was black, so I know it is broken, of course there is nothing you can do for a broken toe, so I will just have to limp along. By the time I got home it was really hurting, darn it. So, I did a little house cleaning before the kids came home. They got home around 2:45 and they both seemed very happy, and Hunter was very stinky. I brought them inside and changed Hunter, got him some juice and he watched some cartoons for a little bit while Ciara sat in her recliner and watched. When I was at the grocery store, they had tri-tips on sale, so that is what I am making for dinner, a garlic and butter tri-tip so John will be happy when he gets home. He wasn’t able to come home last night because he was stuck in Nevada and the two times that I talked to him today, I lost him on his cell phone because he was up in the mountains, but he did say that he would be home in the late afternoon. So, I started dinner so that it would be ready by 5:00, but John still wasn’t home and he wasn’t answering his cell phone. He finally called be around 6:30 and said that he was stuck at a plant in Stockton and had been helping then dig out their equipment that broke so that put him a few hours behind, poor guy. So, eventually he made it home and I got his dinner for him and then he went to bed. Ciara had a very good evening, she sat in her Tumble Form chair for a long time and was just happy. Hunter had a good time too, bouncing around the couch and playing with his truck. Hunter fell asleep early, and as soon as I put Ciara in her recliner, she curled up and went to sleep too.
Well, I made the hotel reservations for the MPS Conference, but I don’t know if we are going to make it. We still need $1,000 to cover the expenses and we only have a couple of weeks left before I have to pay for the registration fees which are non-refundable so I don’t know what we are going to do. We really want to go and see our friends, but so far it doesn’t look like it will work out. Plus, Caringbridge won’t let me use the donation links I had on here so I had to take those off. If anybody is interested in helping out, just send me an email. Thanks!
Jillian is still holding her own, but she still needs blood. For some reason she just can't hold on to her red blood cells and the doctors have no idea why. She has one more week of the experimental drug that she is on, but if it doesn't work, then they are talking about sending Jillian back to Duke to see if they can figure out what is going on. On the bright side, Jillian is happy and doing great, but it's just the blood issue. She has been in the hospital for 3 months now so please say a prayer that this drug works, we should know something next week. We don't want Jillian to go to Duke because the Adenovirus is up on the unit and that is what killed Tommy, not to mention many other children so PRAY PRAY PRAY!
I just updated our soy journal to check it out! BENNETT CHILDREN'S SOY JOURNAL WE WILL BE RELEASING BALLOONS FOR TOMMY ON SUNDAY. WE WOULD LOVE IT IF YOU WOULD RELEASE A BALLOON FOR HIM AS WELL. PLEASE TAKE A PICTURE OF YOUR BALLOON RELEASE AND SEND IT TO ME, I WOULD LIKE TO PUT THEM UP IN OUR JOURNAL!
This coming Sunday would have been Tommy's 6th birthday. If you would like to make a donation in his memory to the National MPS Society, you can either make one on-line by clicking here: MPS ON-LINE DONATIONS or you can mail a donation to this address:
THE NATIONAL MPS SOCIETY
C/O DONATIONS
P.O. BOX 736
BANGOR, ME 04402-0736
Don't forget to write "In memory of Tommy Bennett's Birthday."
Hugs To All, and ^^Angel^^ 
Friday, September 16, 2005 11:33 PM CDT
WEDNESDAY’S JOURNAL
Ciara woke me up at 5:15 this morning when I heard her having a seizure. It was a moderate seizure and lasted a couple of minutes, but then she went right back to sleep and so did I. I woke up again a half hour later, but I wasn’t sure if I was going to send her to school today. About another half hour later I decided that she was looking good and alert so I hooked her up to her feeding pump and then got the kids dressed and Hunter watched Barney while we waited for the school bus to come. I told the bus driver that Ciara had a seizure earlier, but she seemed to be alright now so off they went. About 5 minutes later I got a phone call from the bus saying that Ciara was having another seizure and I told them to bring her back home. I brought her inside and put her on the couch and she took a nap, poor little thing. My mom called and said that my sister ran out of gas so I had to go help them. I put Ciara in the car and off we went to pick up my mom. While I had her in the car I stopped at the grocery store so she could stay in the car with Ciara while I ran in. After we got her car running I went back home with Ciara. Hunter came home around 2:45 and when we got back inside, he and I had a snack. Ciara took it easy all afternoon, but she was awake so that was good, and no more seizures! When John came home in the evening we had dinner and then Hunter and I played for a while, he is so silly and I just love his dimples! Ciara sat up in her Tumble Form chair for a long time tonight, several hours and she was “talking” so she is definitely feeling better. Hunter went to bed around 10:00 and Ciara finally fell asleep around 11:00.
THURSDAY’S JOURNAL
When I was putting the kids on the school bus this morning I found out that it was Christina’s birthday today, she is Ciara and Hunter’s friend. Her mom stopped by to drop off Christina’s feeding tubes and she said that they were having a party at school this afternoon, so I will be there! Around 11:00 I sat down in the recliner and I was only going to sit there for about 15 minutes, then I was going to get the rest of my things done for the day. Well, that didn’t work out because before I knew it, I had fallen asleep and when I woke up it was 1:05! I ran out of the house and went to the school for the party. When I got there Ciara and Hunter were eating a cupcake and they were both very happy. Christina opened her presents and handed out party bags and then the buses came for the kids. I put Ciara and Hunter in my car and we went home. I talked to John and he said that he wouldn’t be home until at least midnight tonight so it’s just the kids and myself for the rest of the day. After we had dinner, I put on some cartoons for the kids and I was talking on the phone. Ciara was sitting in her Tumble Form chair Tumble Form Chair and I was talking on the phone. Out of the corner of my eye I saw her slowly take her hand out of her mouth and she slowly extended her arm out in front of her. What really got my attention was the look on her face, at first I thought she might be having a seizure, but then I realized what was happening. She was concentrating very hard because our dog was standing in front of her and she was reaching out to pet the dog. When she reached her arm out, her fingers uncurled a little bit too and she leaned forward, but then the dog took a few steps and Ciara’s arm followed the dog, but she was still a couple of inches away from touching her, then the dog moved too far away. I was on the phone with another MPS mom when this happened and I started screaming because I was so happy and then the other mom was so excited too! Ciara hasn’t done that in over a year so that was a BIG night that she had! Of course I brought the dog over to her and rubbed her hands all of the dog, she earned it! That was about it for the evening, Hunter went to sleep early and Ciara fell asleep around midnight. John called and said that he won’t make it home, he was still in Nevada and out of hours so he will be home tomorrow.
FRIDAY’S JOURNAL
Ciara just did not want to wake up this morning, she was like a little rag doll when I had to get her ready for school. I was a little concerned because she is usually awake before I get up and she just wouldn’t wake up. But, when I started to brush her hair, that made her mad and she was wide awake and yelling at me, she hates to get her hair brushed! Hunter was pretty happy this morning and helped me push Ciara out to the school bus. After they were on their way, I got ready and headed out to start my long Friday. After I went to Stockton and came back home I stopped by our house to make sure that the school didn’t call before I headed out again. As I was walking out the front door, the back of my flip-flop got caught under the door as I was closing it and I stumbled down the front steps, but at least I didn’t fall. I grabbed by shoes and as I started to walk to the car, my foot really started hurting. When I stumbled, I kind of rolled on the side of my foot. So, I got in the car and went to Sacramento. When I got to where I was going, I got out of the car and that is when I realized that I had broken my little toe, OUCH! It was hurting so bad and it was black, so I know it is broken, of course there is nothing you can do for a broken toe, so I will just have to limp along. By the time I got home it was really hurting, darn it. So, I did a little house cleaning before the kids came home. They got home around 2:45 and they both seemed very happy, and Hunter was very stinky. I brought them inside and changed Hunter, got him some juice and he watched some cartoons for a little bit while Ciara sat in her recliner and watched. When I was at the grocery store, they had tri-tips on sale, so that is what I am making for dinner, a garlic and butter tri-tip so John will be happy when he gets home. He wasn’t able to come home last night because he was stuck in Nevada and the two times that I talked to him today, I lost him on his cell phone because he was up in the mountains, but he did say that he would be home in the late afternoon. So, I started dinner so that it would be ready by 5:00, but John still wasn’t home and he wasn’t answering his cell phone. He finally called be around 6:30 and said that he was stuck at a plant in Stockton and had been helping then dig out their equipment that broke so that put him a few hours behind, poor guy. So, eventually he made it home and I got his dinner for him and then he went to bed. Ciara had a very good evening, she sat in her Tumble Form chair for a long time and was just happy. Hunter had a good time too, bouncing around the couch and playing with his truck. Hunter fell asleep early, and as soon as I put Ciara in her recliner, she curled up and went to sleep too. Well, I made the hotel reservations for the MPS Conference, but I don’t know if we are going to make it. We still need $1,000 to cover the expenses and we only have a couple of weeks left before I have to pay for the registration fees which are non-refundable so I don’t know what we are going to do. We really want to go and see our friends, but so far it doesn’t look like it will work out. Plus, Caringbridge won’t let me use the donation links I had on here so I had to take those off. If anybody is interested in helping out, just send me an email. Thanks! Jillian is still holding her own, but she still needs blood. For some reason she just can't hold on to her red blood cells and the doctors have no idea why. She has one more week of the experimental drug that she is on, but if it doesn't work, then they are talking about sending Jillian back to Duke to see if they can figure out what is going on. On the bright side, Jillian is happy and doing great, but it's just the blood issue. She has been in the hospital for 3 months now so please say a prayer that this drug works, we should know something next week. We don't want Jillian to go to Duke because the Adenovirus is up on the unit and that is what killed Tommy, not to mention many other children so PRAY PRAY PRAY! WE WILL BE RELEASING BALLOONS FOR TOMMY ON SUNDAY. WE WOULD LOVE IT IF YOU WOULD RELEASE A BALLOON FOR HIM AS WELL. PLEASE TAKE A PICTURE OF YOUR BALLOON RELEASE AND SEND IT TO ME, I WOULD LIKE TO PUT THEM UP IN OUR JOURNAL!
This coming Sunday would have been Tommy's 6th birthday. If you would like to make a donation in his memory to the National MPS Society, you can either make one on-line by clicking here: MPS ON-LINE DONATIONS or you can mail a donation to this address:
THE NATIONAL MPS SOCIETY
C/O DONATIONS
P.O. BOX 736
BANGOR, ME 04402-0736
Don't forget to write "In memory of Tommy Bennett's Birthday."
Hugs To All, and ^^Angel^^ 
Friday, September 16, 2005 11:33 PM CDT
WEDNESDAY’S JOURNAL
Ciara woke me up at 5:15 this morning when I heard her having a seizure. It was a moderate seizure and lasted a couple of minutes, but then she went right back to sleep and so did I. I woke up again a half hour later, but I wasn’t sure if I was going to send her to school today. About another half hour later I decided that she was looking good and alert so I hooked her up to her feeding pump and then got the kids dressed and Hunter watched Barney while we waited for the school bus to come. I told the bus driver that Ciara had a seizure earlier, but she seemed to be alright now so off they went. About 5 minutes later I got a phone call from the bus saying that Ciara was having another seizure and I told them to bring her back home. I brought her inside and put her on the couch and she took a nap, poor little thing. My mom called and said that my sister ran out of gas so I had to go help them. I put Ciara in the car and off we went to pick up my mom. While I had her in the car I stopped at the grocery store so she could stay in the car with Ciara while I ran in. After we got her car running I went back home with Ciara. Hunter came home around 2:45 and when we got back inside, he and I had a snack. Ciara took it easy all afternoon, but she was awake so that was good, and no more seizures! When John came home in the evening we had dinner and then Hunter and I played for a while, he is so silly and I just love his dimples! Ciara sat up in her Tumble Form chair for a long time tonight, several hours and she was “talking” so she is definitely feeling better. Hunter went to bed around 10:00 and Ciara finally fell asleep around 11:00.
THURSDAY’S JOURNAL
When I was putting the kids on the school bus this morning I found out that it was Christina’s birthday today, she is Ciara and Hunter’s friend. Her mom stopped by to drop off Christina’s feeding tubes and she said that they were having a party at school this afternoon, so I will be there! Around 11:00 I sat down in the recliner and I was only going to sit there for about 15 minutes, then I was going to get the rest of my things done for the day. Well, that didn’t work out because before I knew it, I had fallen asleep and when I woke up it was 1:05! I ran out of the house and went to the school for the party. When I got there Ciara and Hunter were eating a cupcake and they were both very happy. Christina opened her presents and handed out party bags and then the buses came for the kids. I put Ciara and Hunter in my car and we went home. I talked to John and he said that he wouldn’t be home until at least midnight tonight so it’s just the kids and myself for the rest of the day. After we had dinner, I put on some cartoons for the kids and I was talking on the phone. Ciara was sitting in her Tumble Form chair Tumble Form Chair and I was talking on the phone. Out of the corner of my eye I saw her slowly take her hand out of her mouth and she slowly extended her arm out in front of her. What really got my attention was the look on her face, at first I thought she might be having a seizure, but then I realized what was happening. She was concentrating very hard because our dog was standing in front of her and she was reaching out to pet the dog. When she reached her arm out, her fingers uncurled a little bit too and she leaned forward, but then the dog took a few steps and Ciara’s arm followed the dog, but she was still a couple of inches away from touching her, then the dog moved too far away. I was on the phone with another MPS mom when this happened and I started screaming because I was so happy and then the other mom was so excited too! Ciara hasn’t done that in over a year so that was a BIG night that she had! Of course I brought the dog over to her and rubbed her hands all of the dog, she earned it! That was about it for the evening, Hunter went to sleep early and Ciara fell asleep around midnight. John called and said that he won’t make it home, he was still in Nevada and out of hours so he will be home tomorrow.
FRIDAY’S JOURNAL
Ciara just did not want to wake up this morning, she was like a little rag doll when I had to get her ready for school. I was a little concerned because she is usually awake before I get up and she just wouldn’t wake up. But, when I started to brush her hair, that made her mad and she was wide awake and yelling at me, she hates to get her hair brushed! Hunter was pretty happy this morning and helped me push Ciara out to the school bus. After they were on their way, I got ready and headed out to start my long Friday. After I went to Stockton and came back home I stopped by our house to make sure that the school didn’t call before I headed out again. As I was walking out the front door, the back of my flip-flop got caught under the door as I was closing it and I stumbled down the front steps, but at least I didn’t fall. I grabbed by shoes and as I started to walk to the car, my foot really started hurting. When I stumbled, I kind of rolled on the side of my foot. So, I got in the car and went to Sacramento. When I got to where I was going, I got out of the car and that is when I realized that I had broken my little toe, OUCH! It was hurting so bad and it was black, so I know it is broken, of course there is nothing you can do for a broken toe, so I will just have to limp along. By the time I got home it was really hurting, darn it. So, I did a little house cleaning before the kids came home. They got home around 2:45 and they both seemed very happy, and Hunter was very stinky. I brought them inside and changed Hunter, got him some juice and he watched some cartoons for a little bit while Ciara sat in her recliner and watched. When I was at the grocery store, they had tri-tips on sale, so that is what I am making for dinner, a garlic and butter tri-tip so John will be happy when he gets home. He wasn’t able to come home last night because he was stuck in Nevada and the two times that I talked to him today, I lost him on his cell phone because he was up in the mountains, but he did say that he would be home in the late afternoon. So, I started dinner so that it would be ready by 5:00, but John still wasn’t home and he wasn’t answering his cell phone. He finally called be around 6:30 and said that he was stuck at a plant in Stockton and had been helping then dig out their equipment that broke so that put him a few hours behind, poor guy. So, eventually he made it home and I got his dinner for him and then he went to bed. Ciara had a very good evening, she sat in her Tumble Form chair for a long time and was just happy. Hunter had a good time too, bouncing around the couch and playing with his truck. Hunter fell asleep early, and as soon as I put Ciara in her recliner, she curled up and went to sleep too. Well, I made the hotel reservations for the MPS Conference, but I don’t know if we are going to make it. We still need $1,000 to cover the expenses and we only have a couple of weeks left before I have to pay for the registration fees which are non-refundable so I don’t know what we are going to do. We really want to go and see our friends, but so far it doesn’t look like it will work out. Plus, Caringbridge won’t let me use the donation links I had on here so I had to take those off. If anybody is interested in helping out, just send me an email. Thanks! Jillian is still holding her own, but she still needs blood. For some reason she just can't hold on to her red blood cells and the doctors have no idea why. She has one more week of the experimental drug that she is on, but if it doesn't work, then they are talking about sending Jillian back to Duke to see if they can figure out what is going on. On the bright side, Jillian is happy and doing great, but it's just the blood issue. She has been in the hospital for 3 months now so please say a prayer that this drug works, we should know something next week. We don't want Jillian to go to Duke because the Adenovirus is up on the unit and that is what killed Tommy, not to mention many other children so PRAY PRAY PRAY! WE WILL BE RELEASING BALLOONS FOR TOMMY ON SUNDAY. WE WOULD LOVE IT IF YOU WOULD RELEASE A BALLOON FOR HIM AS WELL. PLEASE TAKE A PICTURE OF YOUR BALLOON RELEASE AND SEND IT TO ME, I WOULD LIKE TO PUT THEM UP IN OUR JOURNAL!
This coming Sunday would have been Tommy's 6th birthday. If you would like to make a donation in his memory to the National MPS Society, you can either make one on-line by clicking here: MPS ON-LINE DONATIONS or you can mail a donation to this address:
THE NATIONAL MPS SOCIETY
C/O DONATIONS
P.O. BOX 736
BANGOR, ME 04402-0736
Don't forget to write "In memory of Tommy Bennett's Birthday."
Hugs To All, and ^^Angel^^
Tuesday, September 13, 2005 11:36 PM CDT
WEDNESDAY 8:30 AM UPDATE: Ciara had a seizure at 5:15 this morning, but she seemed to be doing just fine so I sent her off to school on the bus at 7:40. About 5 minutes later the bus called and said that she was having another seizure so I told them to bring her back home. It is now 8:50 and she is sleeping on the couch. I pray that she doesn't have any more seizures today!
SUNDAY’S JOURNAL
We had to get up early this morning because today is the September 11 ceremony at the fire department. We got there around 7:30 and helped get everything set up and people started arriving around 8:00. At 8:45 the fire chief started his speech and then the fire doors opened and the Honor Guard (which includes John) marched out. Two guys carried shiny silver fire axes and one guy carried the American flag and John raised the flag. The fire chief sounded the fire alarm two times to symbolize the two towers that fell. He finished his speech and then invited everybody into the fire house for doughnuts and juice and to look at our display. The display is what we spent all week working on, it was 10 story boards that showed everybody what the fire department goes thru every day. John and a few of the other fire fighters had to leave early, the high school asked if they would bring a fire engine up to the football game for a tribute. After everybody had left we cleaned up the fire house and then John and the others came back. We were all very tired so everybody went home and took it easy. We really didn’t do much for the rest of the day. Hunter and Ciara had a good day, they were both happy and watched cartoons and goofed around. In the evening I made dinner and that was about it.
MONDAY’S JOURNAL
I got up around 5:45 and hooked Ciara up to her feeding pump. I made their lunches, and John’s too. After I sent everybody of their way, I made some breakfast and watched a little TV. I ran out to get a few things done and then I stopped by the school around noon to drop off some cereal and fruit for Ciara. They had just taken her temperature and it was a little over 99 so I took her home with me, she can relax on the couch and take it easy for a while. I was surprised when I got home and John was there, he had a short day at work. My sister came over for a while and then Hunter came home on the bus and he was very happy and all smiles. Later on in the afternoon Ciara still had a slight fever so I gave her some Motrin and Sudafed and a little while later she was cool and happier. That was about it for the evening, we had dinner and watched some TV and everybody went to bed early.
TUESDAY’S JOURNAL
I woke up around 5:45 this morning, but I didn’t get up until 6:15 because Ciara isn’t going to school today. Since she had a fever yesterday, I wanted to keep her home one more day to make sure they was alright. Hunter was very happy as we walked to the bus this morning so he should have a great day. I went back inside and hooked Ciara up to her feeding pump and then I grabbed a bite to eat. Since Ciara is home today, I didn’t go out anywhere. I did a little house cleaning, that was about it. Hunter came home around 2:45 and Mason walked over after school. After Mason had a snack, I drove him over to his dad’s house because he said that he wanted to “chill.” Ciara had a great day today, she didn’t have any more fevers, but she is trying to cough up some junk. I was worried that she might be getting pneumonia, but her chest sounds clear to me, which is odd because she is always rattling. I will just have to keep an eye on her. She did sit in her Tumble Form chair for several hours today so that was good. John came home right after I took Mason home, but he left right away, he is helping a friend put on a new roof. He came back home around 5:30, the roofing guy never showed up. So, I made dinner and then we had to go to the fire department. They are doing a controlled burn tonight so I have to take pictures, I am the official fire department photographer now. Once the sun went down, I really couldn’t get any good pictures so after about an hour of taking pictures, I took the kids home. I hooked Ciara up to her feeding pump and got Hunter a snack, but he was asleep by 9:00. I gave Ciara a bath, put her jammies on and she laid on the couch and watched TV with me. John came home around 9:45 and then we all went to bed, we are still exhausted from last week, not to mention we all have had this cold that is going around. This coming Sunday would have been Tommy's 6th birthday. If you would like to make a donation in his memory to the National MPS Society, you can either make one on-line by clicking here: MPS ON-LINE DONATIONS or you can mail a donation to this address:
THE NATIONAL MPS SOCIETY
C/O DONATIONS
P.O. BOX 736
BANGOR, ME 04402-0736
Don't forget to write "In memory of Tommy Bennett."
Hugs To All, and ^^Angel^^ 
Tuesday, September 13, 2005 10:36 AM CDT
WEDNESDAY 8:30 AM UPDATE: Ciara had a seizure at 5:15 this morning, but she seemed to be doing just fine so I sent her off to school on the bus at 7:40. About 5 minutes later the bus called and said that she was having another seizure so I told them to bring her back home. It is now 8:50 and she is sleeping on the couch. I pray that she doesn't have any more seizures today!
SUNDAY’S JOURNAL
We had to get up early this morning because today is the September 11 ceremony at the fire department. We got there around 7:30 and helped get everything set up and people started arriving around 8:00. At 8:45 the fire chief started his speech and then the fire doors opened and the Honor Guard (which includes John) marched out. Two guys carried shiny silver fire axes and one guy carried the American flag and John raised the flag. The fire chief sounded the fire alarm two times to symbolize the two towers that fell. He finished his speech and then invited everybody into the fire house for doughnuts and juice and to look at our display. The display is what we spent all week working on, it was 10 story boards that showed everybody what the fire department goes thru every day. John and a few of the other fire fighters had to leave early, the high school asked if they would bring a fire engine up to the football game for a tribute. After everybody had left we cleaned up the fire house and then John and the others came back. We were all very tired so everybody went home and took it easy. We really didn’t do much for the rest of the day. Hunter and Ciara had a good day, they were both happy and watched cartoons and goofed around. In the evening I made dinner and that was about it.
MONDAY’S JOURNAL
I got up around 5:45 and hooked Ciara up to her feeding pump. I made their lunches, and John’s too. After I sent everybody of their way, I made some breakfast and watched a little TV. I ran out to get a few things done and then I stopped by the school around noon to drop off some cereal and fruit for Ciara. They had just taken her temperature and it was a little over 99 so I took her home with me, she can relax on the couch and take it easy for a while. I was surprised when I got home and John was there, he had a short day at work. My sister came over for a while and then Hunter came home on the bus and he was very happy and all smiles. Later on in the afternoon Ciara still had a slight fever so I gave her some Motrin and Sudafed and a little while later she was cool and happier. That was about it for the evening, we had dinner and watched some TV and everybody went to bed early.
TUESDAY’S JOURNAL
I woke up around 5:45 this morning, but I didn’t get up until 6:15 because Ciara isn’t going to school today. Since she had a fever yesterday, I wanted to keep her home one more day to make sure they was alright. Hunter was very happy as we walked to the bus this morning so he should have a great day. I went back inside and hooked Ciara up to her feeding pump and then I grabbed a bite to eat. Since Ciara is home today, I didn’t go out anywhere. I did a little house cleaning, that was about it. Hunter came home around 2:45 and Mason walked over after school. After Mason had a snack, I drove him over to his dad’s house because he said that he wanted to “chill.” Ciara had a great day today, she didn’t have any more fevers, but she is trying to cough up some junk. I was worried that she might be getting pneumonia, but her chest sounds clear to me, which is odd because she is always rattling. I will just have to keep an eye on her. She did sit in her Tumble Form chair for several hours today so that was good. John came home right after I took Mason home, but he left right away, he is helping a friend put on a new roof. He came back home around 5:30, the roofing guy never showed up. So, I made dinner and then we had to go to the fire department. They are doing a controlled burn tonight so I have to take pictures, I am the official fire department photographer now. Once the sun went down, I really couldn’t get any good pictures so after about an hour of taking pictures, I took the kids home. I hooked Ciara up to her feeding pump and got Hunter a snack, but he was asleep by 9:00. I gave Ciara a bath, put her jammies on and she laid on the couch and watched TV with me. John came home around 9:45 and then we all went to bed, we are still exhausted from last week, not to mention we all have had this cold that is going around. This coming Sunday would have been Tommy's 6th birthday. If you would like to make a donation in his memory to the National MPS Society, you can either make one on-line by clicking here: MPS ON-LINE DONATIONS or you can mail a donation to this address:
THE NATIONAL MPS SOCIETY
C/O DONATIONS
P.O. BOX 736
BANGOR, ME 04402-0736
Don't forget to write "In memory of Tommy Bennett."
Hugs To All, and ^^Angel^^ 
Tuesday, September 13, 2005 9:09 AM CDT
LAST WEEK:
Last week was a very busy week. I spent a lot of time at the fire department working on the September 11 ceremony that will be held this Sunday. Speaking of the fire department, we had to go in front of the Ione City Council on Tuesday. Ken Mackey, the fire chief, presented John with his Captain’s badge and I got to pin it on him. We are all very proud of John! Wednesday Hunter got a fever and was very tired so I didn’t send him to school the next day. Ciara had diarrhea on Thursday so I kept her home one day, but by Friday they were both feeling better. On Saturday we were supposed to go to a birthday party, but by the time I ran all over town to get things for Sunday’s ceremony, I was too tired to go to the party. Besides, we would be seeing them all this evening at the fire department so I figured they would rather have me there working then at the party. Sunday morning we were at the fire department bright and early to get everything set up, the ceremony started at 8:45. John was on the Honor Guard and let me tell you, when they sounded the alarm two times, to signify both towers that collapsed, it really got to me. After everything was over and cleaned up, we went home, around 11:00, and we all took a much needed nap. This coming Sunday would have been Tommy's 6th birthday. If you would like to make a donation in his memory to the National MPS Society, you can either make one on-line by clicking here: MPS ON-LINE DONATIONS or you can mail a donation to this address:
THE NATIONAL MPS SOCIETY
C/O DONATIONS
P.O. BOX 736
BANGOR, ME 04402-0736
Don't forget to write "In memory of Tommy Bennett."
Hugs To All, and ^^Angel^^ 
Sunday, September 11, 2005 1:17 PM CDT
AS MOST OF YOU KNOW, JOHN IS ON THE IONE FIRE DEPARTMENT. THIS MORNING WE HELD A CEREMONY TO HONOR THE MEN AND WOMEN WHO LOST THEIR LIVES ON SEPTEMBER 11, 2001. THEY WERE BRAVE AND LOVED THEIR JOBS AND THEY DIED DOING WHAT THEY LOVED. PLEASE TAKE A MOMENT TODAY TO SAY A PRAYER FOR THE VICTIMS AND FAMILIES THAT WERE AFFECTED BY THE TERRORIST ACTS ON SEPTEMBER 11, AND ALSO SAY A PRAYER FOR THE FIREFIGHERS WHO ARE STILL HERE, SAVING LIVES EVERY DAY.
A SIGHT TO SEE
You should have seen us
All that we could be
You should have been there
We were a sight to see
Riding tall
Back in the saddle again
Conquering flames and eighty-four floors
Giving every bit of all we can
Walking the high wire, balancing a tightrope
Battling that beast back into its cage
Capturing it, reeling it in
Putting up invisible walls around its rage
You should have seen us
Marching those eighty-four floors
Doing all that could be done
Daring to do even more
Climbing that beanstalk
On shuddering, wavering limbs
Running on past those escaping
Willing ourselves not to give in
We ascended all the way
To where the beast made its home
Vowing we would defeat it
We’d overturn every stone
We’d not stop till it was vanquished
Till there was nothing left
Not a whisper of flame
We fought that good fight
Till that fiery end came
And you should have seen us
All that we could be
If you had been there, you’d have known
We were a sight to see
Riding tall, riding proud
Back in the saddle again
Conquering flames and those eighty-four floors
We’d give everything not to give in
And we ascended all the way
To where the beast made its home
We waged battle in its lair
But in the end we were lost and alone
Fighting hard
But losing the war
Holding fast
But defeated to the core
You should have seen us
And all that we could be
If you had been there, then you would know
There we were
A sight to see
A FATHER'S PRAYER
Another fireman was found today
and I wonder if it's my missing son.
I can't take much more of the hope and pain,
it's been a hard, tough road for everyone.
He was a fireman, like his old man,
but a father shouldn't outlive his boy.
He should be here with his mama and me,
but fighting fires is what brought him joy.
Then came that sad, awful september day,
I'd slept in--didn't get to say goodbye.
He was caught when the trade towers collapsed
O, God...why did all those boys have to die?
I hope they're resting in Your Arms, O, Lord.
I hope they're getting tender loving care.
They died saving others the way they wanted.
Find him soon...my baby...that is my prayer..
I just put up some pictures from today's ceremony so check them out!
Hugs To All, and ^^Angel^^
Saturday, September 3, 2005 11:51 PM CDT
I am so sorry that I haven’t updated sooner. I am posting the last couple of days and I will post the rest tomorrow so check back again later on Sunday. Thanks!
FRIDAY’S JOURNAL
John’s alarm went off at 5:30 this morning, so I got up and started Ciara’s feeding pump, then I fell back asleep. I didn’t wake up again until 6:50 so I really had to rush to get the kids dressed, lunches made, and ready for the school bus at 7:15. After they drove away, I got dressed and had a quick little snack before I had to start out on my errands for the day. I drove to Stockton to get John’s paycheck, then when I got back home I went to the bank and the grocery store. I had to rush to put the groceries away because I had to be at the fire department at noon for a meeting. The school called and said that Ciara had just had a seizure, but she was doing OK and I didn’t need to pick her up. She hasn’t had a seizure in a while so she has been doing much better lately. The meeting lasted about an hour so I grabbed some lunch and waited for the kids to come home from school. The bus driver said that Hunter and Ciara were both a little fussy on the ride home. Hunter looked like he was almost asleep when I went to get him off the bus, so that is probably why he was cranky, he was tired. After I got them both settled in the house with some juice and cartoons, they were both happy. I did a little cleaning around the house and then John came home from work. After we all had dinner, we watched some TV and went to bed, pretty boring.
SATURDAY’S JOURNAL
This morning we all got to sleep in, yippee!! When I got up I made breakfast for John before he had to go to work. By the time he left, Ciara and Hunter were just getting up, so I got them each a Spiru-tein shake and then they watched cartoons for a little while, then I got them some breakfast. John isn’t coming home tonight, or tomorrow night, so the kids and I are probably just going to stay home this weekend. We didn’t do much all afternoon, just watched some movies and relaxed. In the evening we were pretty bored, so we went for a little drive and then ran into the grocery store. On the way home I decided to stop off at the restaurant my sister works at so that Hunter could get something for dinner, besides, I just didn’t feel like going home and being bored right away. Hunter ate his dinner and Ciara watched everybody in the restaurant. John’s cousin Ellen and her niece were there, so we sat by them. When we were all finished eating we went home and I fed Ciara and Hunter watched some cartoons. He was looking pretty tired and kept dozing off. Around 11:00 I changed his diaper and he felt very warm to me. I gave him some Tylenol and hopefully he will be feeling better soon, poor little guy. Ciara had a pretty good day today, she was happy and she was asleep by 11:00 tonight. We are still planning on going to the MPS Conference in November, but I don’t think it is going to happen. We just don’t have the money to go, especially since John started going back to school, so he won’t be working as much. If anybody can help us by doing a fundraiser, please let me know. We also have a donation website for the conference which is located up at the top of our journal. Thanks! For more information about the conference, you can click here: MPS CONFERENCE WEBSITE
Hugs To All, and ^^Angel^^ 
Saturday, September 3, 2005 11:51 PM CDT
I am so sorry that I haven’t updated sooner. I am posted the last couple of days and I will post the rest tomorrow so check back again later on Sunday. Thanks!
FRIDAY’S JOURNAL
John’s alarm went off at 5:30 this morning, so I got up and started Ciara’s feeding pump, then I fell back asleep. I didn’t wake up again until 6:50 so I really had to rush to get the kids dressed, lunches made, and ready for the school bus at 7:15. After they drove away, I got dressed and had a quick little snack before I had to start out on my errands for the day. I drove to Stockton to get John’s paycheck, then when I got back home I went to the bank and the grocery store. I had to rush to put the groceries away because I had to be at the fire department at noon for a meeting. The school called and said that Ciara had just had a seizure, but she was doing OK and I didn’t need to pick her up. She hasn’t had a seizure in a while so she has been doing much better lately. The meeting lasted about an hour so I grabbed some lunch and waited for the kids to come home from school. The bus driver said that Hunter and Ciara were both a little fussy on the ride home. Hunter looked like he was almost asleep when I went to get him off the bus, so that is probably why he was cranky, he was tired. After I got them both settled in the house with some juice and cartoons, they were both happy. I did a little cleaning around the house and then John came home from work. After we all had dinner, we watched some TV and went to bed, pretty boring.
SATURDAY’S JOURNAL
This morning we all got to sleep in, yippee!! When I got up I made breakfast for John before he had to go to work. By the time he left, Ciara and Hunter were just getting up, so I got them each a Spiru-tein shake and then they watched cartoons for a little while, then I got them some breakfast. John isn’t coming home tonight, or tomorrow night, so the kids and I are probably just going to stay home this weekend. We didn’t do much all afternoon, just watched some movies and relaxed. In the evening we were pretty bored, so we went for a little drive and then ran into the grocery store. On the way home I decided to stop off at the restaurant my sister works at so that Hunter could get something for dinner, besides, I just didn’t feel like going home and being bored right away. Hunter ate his dinner and Ciara watched everybody in the restaurant. John’s cousin Ellen and her niece were there, so we sat by them. When we were all finished eating we went home and I fed Ciara and Hunter watched some cartoons. He was looking pretty tired and kept dozing off. Around 11:00 I changed his diaper and he felt very warm to me. I gave him some Tylenol and hopefully he will be feeling better soon, poor little guy. Ciara had a pretty good day today, she was happy and she was asleep by 11:00 tonight. We are still planning on going to the MPS Conference in November, but I don’t think it is going to happen. We just don’t have the money to go, especially since John started going back to school, so he won’t be working as much. If anybody can help us by doing a fundraiser, please let me know. We also have a donation website for the conference which is located up at the top of our journal. Thanks! For more information about the conference, you can click here: MPS CONFERENCE WEBSITE
Hugs To All, and ^^Angel^^
Sunday, September 4, 2005 1:37 AM CDT
I am so sorry that I haven’t updated sooner. I am posted the last couple of days and I will post the rest tomorrow so check back again later on Sunday. Thanks!
FRIDAY’S JOURNAL
John’s alarm went off at 5:30 this morning, so I got up and started Ciara’s feeding pump, then I fell back asleep. I didn’t wake up again until 6:50 so I really had to rush to get the kids dressed, lunches made, and ready for the school bus at 7:15. After they drove away, I got dressed and had a quick little snack before I had to start out on my errands for the day. I drove to Stockton to get John’s paycheck, then when I got back home I went to the bank and the grocery store. I had to rush to put the groceries away because I had to be at the fire department at noon for a meeting. The school called and said that Ciara had just had a seizure, but she was doing OK and I didn’t need to pick her up. She hasn’t had a seizure in a while so she has been doing much better lately. The meeting lasted about an hour so I grabbed some lunch and waited for the kids to come home from school. The bus driver said that Hunter and Ciara were both a little fussy on the ride home. Hunter looked like he was almost asleep when I went to get him off the bus, so that is probably why he was cranky, he was tired. After I got them both settled in the house with some juice and cartoons, they were both happy. I did a little cleaning around the house and then John came home from work. After we all had dinner, we watched some TV and went to bed, pretty boring.
SATURDAY’S JOURNAL
This morning we all got to sleep in, yippee!! When I got up I made breakfast for John before he had to go to work. By the time he left, Ciara and Hunter were just getting up, so I got them each a Spiru-tein shake and then they watched cartoons for a little while, then I got them some breakfast. John isn’t coming home tonight, or tomorrow night, so the kids and I are probably just going to stay home this weekend. We didn’t do much all afternoon, just watched some movies and relaxed. In the evening we were pretty bored, so we went for a little drive and then ran into the grocery store. On the way home I decided to stop off at the restaurant my sister works at so that Hunter could get something for dinner, besides, I just didn’t feel like going home and being bored right away. Hunter ate his dinner and Ciara watched everybody in the restaurant. John’s cousin Ellen and her niece were there, so we sat by them. When we were all finished eating we went home and I fed Ciara and Hunter watched some cartoons. He was looking pretty tired and kept dozing off. Around 11:00 I changed his diaper and he felt very warm to me. I gave him some Tylenol and hopefully he will be feeling better soon, poor little guy. Ciara had a pretty good day today, she was happy and she was asleep by 11:00 tonight. We are still planning on going to the MPS Conference in November, but I don’t think it is going to happen. We just don’t have the money to go, especially since John started going back to school, so he won’t be working as much. If anybody can help us by doing a fundraiser, please let me know. We also have a donation website for the conference which is located up at the top of our journal. Thanks! For more information about the conference, you can click here: MPS CONFERENCE WEBSITE
Hugs To All, and ^^Angel^^
Friday, August 26, 2005 1:04 PM CDT
I just wanted to let you all know that there is another Sanfilippo child at Duke. Her name is Graciela and she is there for testing right now. You can follow her by clicking here: GRACIELA'S JOURNAL
SUNDAY’S JOURNAL
When the kids woke up this morning I got them something to eat and then they watched some cartoons for a little while. Today John’s company is having their family picnic at Micke Grove Park, so we got the kids dressed and we headed out around noon. Ciara is very happy today so she will enjoy being outside and watching all of the people. Hunter was grumpy before we left the house, so I gave him some Tylenol and hopefully he will have a good day too. When we got there, we talked to some people and Hunter walked around for a while, then it was time for lunch. They had chicken and steaks and all the other things that go along with a BBQ. Hunter ate his chicken and some French bread, then I tube fed Ciara. We talked with the people at our table for a while, but then Hunter didn’t want to be sitting any longer, so I took him for a walk. Of course he was the center of attention and all the women sat by him and loved his red hair. By this time they were starting the raffle and Hunter won a dump truck and Ciara got a radio and head phones. It was time to leave now, the kids were getting a little fussy. On the way home there was a medical aid call for the fire dept, so we were going to meet them when the medical helicopter landed so I could take some pictures, but just as we got to the landing site, they cancelled the helicopter, so we went back to the fire dept. We all talked for a while, then we went back home. I fed Ciara and Hunter had some juice and they relaxed and were happy. John decided that he wanted to go fishing, so off he went while I took the kids to the swimming pool. As soon as we got there and I took Hunter out of the car, he saw where we were and he started laughing, he just loves to go to the pool! We stayed for about an hour, but by 8:15, it was getting pretty cold, so we all went home. I got the kids into some dry jammies and I made some popcorn for Hunter to munch on while we watched TV. John came home and he said he caught one trout so he was happy. Ciara was in a great mood tonight, she was just chatting away, I wish I knew what she was saying though!
MONDAY’S JOURNAL
This morning I woke up and got the kids off to school. Mason called and asked if I could give him a ride to school because he woke up late, so I did. I went back home, had some breakfast and then I ran out to the store. When I got back home I started working on a project for the fire dept. until the kids came home around 2:45. They were both happy once I got them settled in with some juice, snack, and cartoons. I hooked Ciara up to her feeding pump and that was about it for the rest of the afternoon. When John came home in the evening, I made dinner and we watched some TV and everybody went to bed early!
TUESDAY’S JOURNAL
john went to school this morning, came home at 1:00, I ran out to get more Spiru-tein, wal-mart, then home. The kids came home and I got them something to drink. They watched cartoons and goofed around, I was exhausted so I tried to take a nap, but that didn’t work out very well. Ciara spent several hours sitting in her Tumble Form chair and was happy while Hunter bounced around the couch and watched some cartoons. John came home in the afternoon, he went to school today. We stayed in for the rest of the day and then in the evening I made dinner and John went to his fire meeting around 7:00. Hunter was a little cranky tonight, I think he is tired, but Ciara is very happy and she has been laughing and giggling tonight!
WEDNESDAY’S JOURNAL
Ciara was laughing this morning while I was getting her ready for school, Hunter didn’t want to wake up this morning so I hope he has a happy day and not a grumpy one. After they headed off to school, I had to run to the grocery store and the cemetery is on the way. As I was driving the by the cemetery, it hit me. Everything happened so fast, one day the boys were diagnosed, 4 days later I heard about the transplants at Duke, and everything became such a fast blur that all of a sudden we were at Duke and things were so crazy, then Tommy died and again, things were even more blurry and unreal. Sometimes it feels like it was all a dream, like I never even had Tommy and he was just a wonderful dream that I had. Thank God for all the pictures and videos to prove that this wonderful little angel really was here and blessed us with 4 wonderful years. I miss him so much, but it hurts to talk about him so that is why I don’t talk to much. OK, on with our day. The kids came home around 2:30 and Hunter was crying and yelling when I went out to get him. He was not happy and I don’t know what is bothering him. I brought the kids inside and Hunter continued to cry for an hour before I could calm him down. I gave him some Tylenol and that seemed to help. Ciara was happy and sat up watching cartoons and looking around, she was very happy today. John came home not long after that, but he had to leave again right away because he had to go to school, which is an hour away, to get a book from their library to study for his test tomorrow. The kids and I had dinner in the evening and that was about it, pretty boring.
THURSDAY’S JOURNAL
John went to school around 6:00 this morning, and the kids and I got up around 7:30. I fed them, tossed them in the bath and then got them dressed. They aren’t going to school today because they have a doctor’s appointment in Sacramento this morning. Since John was already down that way, he met us at the doctor’s office. The appointment went very well, Ciara has gained 10 lbs since he saw her almost 5 months ago. You can read our soy journal for a little more info. After the appointment, we had to drive over to Raleigh Field to pick up a donation for the MPS run. After that we were all hungry so we stopped and had a bite to eat before we headed home. We were all tired by the time we got home so we just sat around and didn’t do much for a few hours. In the evening I made dinner and then John’s cousin came over for a while. John was helping him order a new computer and then John had to leave for a fire call so Donny and I talked for a while, then he went home, it was 9:00 already! I changed the kids, fed Ciara, got Hunter some juice and they went to sleep.
FRIDAY’S JOURNAL
This morning I had too many things to send to school with the kids and I didn’t want to put it all on the bus with them, so after then left for school, I grabbed a bite to eat and then loaded things into the car and went to school to drop it all off. Ciara and Hunter were about to eat when I got there and Hunter was being very silly. He was smiling and laughing and having a great time. Ciara was in a good mood too, she is too cute with her little pixie face! I stayed and played with Hunter, actually, he wouldn’t let me go, he kept playing and laughing and how could I leave him when he flashed his dimples at me? I did leave and I started on my errands. I had to go to Stockton to get John’s paycheck, then I ran to Elk Grove to look for some items that we need for the fire dept’s 9-11 ceremony. While I was there I stopped to see John’s sister, so we talked for a little bit, but then I had to get back home before the kids got home. I did have time to run into the grocery store on the way, so now we have something for dinner. When the school bus came, I went outside to get the kids, and this time I heard Hunter laughing and laughing, it was funny. The bus driver said that he was being silly and laughing the whole bus ride. While Hunter and I waited for them to get Ciara off the bus, Hunter didn’t want to stand still, so he pulled me up and down the street several times, he just wanted to go go go. I brought the kids inside and settled them down with some juice and cartoons. I talked to John, he isn’t coming home tonight. I will call him again later, his phone won’t work after 6:00 tonight because he is out in the desert and there is no signal, so I will call him before he loses it. Around 4:00 my friend called and said we are swimming at 5:30 so I hooked Ciara up to her feeding pump, got Hunter a snack and then put his floaty suit on him and we were off to the pool. It was 102 degrees here today so I sprayed the kids with sun screen and we swam for a couple of hours. By 7:30 it was getting cooler so we all went home. I fed Hunter and Ciara was sitting in her recliner watching TV and “talking.” By 10:00 Hunter was getting grumpy so I put him in the bedroom with some cartoons on and shut the door and 20 minutes later, he was asleep. Ciara was still wide awake, I think she went to sleep around midnight. 
I just updated our soy journal so pop on over and see how Ciara and Hunter are doing with the latest Sanfilippo treatment! BENNETT CHILDREN'S SOY JOURNAL We are still planning on going to the MPS Conference in November, but I don’t think it is going to happen. We just don’t have the money to go, especially since John started back to school this week so he won’t be working as much. If anybody can help us by doing a fundraiser, please let me know. We also have a donation website for the conference which is located up at the top of our journal. Thanks! For more information about the conference, you can click here: MPS CONFERENCE INFO
Hugs To All, and ^^Angel^^ 
Friday, August 26, 2005 1:04 PM CDT
SUNDAY’S JOURNAL
When the kids woke up this morning I got them something to eat and then they watched some cartoons for a little while. Today John’s company is having their family picnic at Micke Grove Park, so we got the kids dressed and we headed out around noon. Ciara is very happy today so she will enjoy being outside and watching all of the people. Hunter was grumpy before we left the house, so I gave him some Tylenol and hopefully he will have a good day too. When we got there, we talked to some people and Hunter walked around for a while, then it was time for lunch. They had chicken and steaks and all the other things that go along with a BBQ. Hunter ate his chicken and some French bread, then I tube fed Ciara. We talked with the people at our table for a while, but then Hunter didn’t want to be sitting any longer, so I took him for a walk. Of course he was the center of attention and all the women sat by him and loved his red hair. By this time they were starting the raffle and Hunter won a dump truck and Ciara got a radio and head phones. It was time to leave now, the kids were getting a little fussy. On the way home there was a medical aid call for the fire dept, so we were going to meet them when the medical helicopter landed so I could take some pictures, but just as we got to the landing site, they cancelled the helicopter, so we went back to the fire dept. We all talked for a while, then we went back home. I fed Ciara and Hunter had some juice and they relaxed and were happy. John decided that he wanted to go fishing, so off he went while I took the kids to the swimming pool. As soon as we got there and I took Hunter out of the car, he saw where we were and he started laughing, he just loves to go to the pool! We stayed for about an hour, but by 8:15, it was getting pretty cold, so we all went home. I got the kids into some dry jammies and I made some popcorn for Hunter to munch on while we watched TV. John came home and he said he caught one trout so he was happy. Ciara was in a great mood tonight, she was just chatting away, I wish I knew what she was saying though!
MONDAY’S JOURNAL
This morning I woke up and got the kids off to school. Mason called and asked if I could give him a ride to school because he woke up late, so I did. I went back home, had some breakfast and then I ran out to the store. When I got back home I started working on a project for the fire dept. until the kids came home around 2:45. They were both happy once I got them settled in with some juice, snack, and cartoons. I hooked Ciara up to her feeding pump and that was about it for the rest of the afternoon. When John came home in the evening, I made dinner and we watched some TV and everybody went to bed early!
TUESDAY’S JOURNAL
john went to school this morning, came home at 1:00, I ran out to get more Spiru-tein, wal-mart, then home. The kids came home and I got them something to drink. They watched cartoons and goofed around, I was exhausted so I tried to take a nap, but that didn’t work out very well. Ciara spent several hours sitting in her Tumble Form chair and was happy while Hunter bounced around the couch and watched some cartoons. John came home in the afternoon, he went to school today. We stayed in for the rest of the day and then in the evening I made dinner and John went to his fire meeting around 7:00. Hunter was a little cranky tonight, I think he is tired, but Ciara is very happy and she has been laughing and giggling tonight!
WEDNESDAY’S JOURNAL
Ciara was laughing this morning while I was getting her ready for school, Hunter didn’t want to wake up this morning so I hope he has a happy day and not a grumpy one. After they headed off to school, I had to run to the grocery store and the cemetery is on the way. As I was driving the by the cemetery, it hit me. Everything happened so fast, one day the boys were diagnosed, 4 days later I heard about the transplants at Duke, and everything became such a fast blur that all of a sudden we were at Duke and things were so crazy, then Tommy died and again, things were even more blurry and unreal. Sometimes it feels like it was all a dream, like I never even had Tommy and he was just a wonderful dream that I had. Thank God for all the pictures and videos to prove that this wonderful little angel really was here and blessed us with 4 wonderful years. I miss him so much, but it hurts to talk about him so that is why I don’t talk to much. OK, on with our day. The kids came home around 2:30 and Hunter was crying and yelling when I went out to get him. He was not happy and I don’t know what is bothering him. I brought the kids inside and Hunter continued to cry for an hour before I could calm him down. I gave him some Tylenol and that seemed to help. Ciara was happy and sat up watching cartoons and looking around, she was very happy today. John came home not long after that, but he had to leave again right away because he had to go to school, which is an hour away, to get a book from their library to study for his test tomorrow. The kids and I had dinner in the evening and that was about it, pretty boring.
THURSDAY’S JOURNAL
John went to school around 6:00 this morning, and the kids and I got up around 7:30. I fed them, tossed them in the bath and then got them dressed. They aren’t going to school today because they have a doctor’s appointment in Sacramento this morning. Since John was already down that way, he met us at the doctor’s office. The appointment went very well, Ciara has gained 10 lbs since he saw her almost 5 months ago. You can read our soy journal for a little more info. After the appointment, we had to drive over to Raleigh Field to pick up a donation for the MPS run. After that we were all hungry so we stopped and had a bite to eat before we headed home. We were all tired by the time we got home so we just sat around and didn’t do much for a few hours. In the evening I made dinner and then John’s cousin came over for a while. John was helping him order a new computer and then John had to leave for a fire call so Donny and I talked for a while, then he went home, it was 9:00 already! I changed the kids, fed Ciara, got Hunter some juice and they went to sleep.
FRIDAY’S JOURNAL
This morning I had too many things to send to school with the kids and I didn’t want to put it all on the bus with them, so after then left for school, I grabbed a bite to eat and then loaded things into the car and went to school to drop it all off. Ciara and Hunter were about to eat when I got there and Hunter was being very silly. He was smiling and laughing and having a great time. Ciara was in a good mood too, she is too cute with her little pixie face! I stayed and played with Hunter, actually, he wouldn’t let me go, he kept playing and laughing and how could I leave him when he flashed his dimples at me? I did leave and I started on my errands. I had to go to Stockton to get John’s paycheck, then I ran to Elk Grove to look for some items that we need for the fire dept’s 9-11 ceremony. While I was there I stopped to see John’s sister, so we talked for a little bit, but then I had to get back home before the kids got home. I did have time to run into the grocery store on the way, so now we have something for dinner. When the school bus came, I went outside to get the kids, and this time I heard Hunter laughing and laughing, it was funny. The bus driver said that he was being silly and laughing the whole bus ride. While Hunter and I waited for them to get Ciara off the bus, Hunter didn’t want to stand still, so he pulled me up and down the street several times, he just wanted to go go go. I brought the kids inside and settled them down with some juice and cartoons. I talked to John, he isn’t coming home tonight. I will call him again later, his phone won’t work after 6:00 tonight because he is out in the desert and there is no signal, so I will call him before he loses it. Around 4:00 my friend called and said we are swimming at 5:30 so I hooked Ciara up to her feeding pump, got Hunter a snack and then put his floaty suit on him and we were off to the pool. It was 102 degrees here today so I sprayed the kids with sun screen and we swam for a couple of hours. By 7:30 it was getting cooler so we all went home. I fed Hunter and Ciara was sitting in her recliner watching TV and “talking.” By 10:00 Hunter was getting grumpy so I put him in the bedroom with some cartoons on and shut the door and 20 minutes later, he was asleep. Ciara was still wide awake, I think she went to sleep around midnight. I just updated our soy journal so pop on over and check it out! We are still planning on going to the MPS Conference in November, but I don’t think it is going to happen. We just don’t have the money to go, especially since John started back to school this week so he won’t be working as much. If anybody can help us by doing a fundraiser, please let me know. We also have a donation website for the conference which is located up at the top of our journal. Thanks! For more information about the conference, you can click here: MPS CONFERENCE INFO
Hugs To All, and ^^Angel^^
Friday, August 19, 2005 11:17 PM CDT
THURSDAY 6:00 AM: I just wanted to let you all know that I will update the journal this evening. The kids have a doctor's appointment today, so I wanted to wait until tonight so that I can tell you all what the doctor said.
FRIDAY’S JOURNAL
After I sent the kids off to school I ran out to get everything done before the kids came home from school. I had to go to Stockton to get John’s paycheck, then off to get everything else and I made it home around 2:00. The kids came home around 2:40 and Ciara is happy but Hunter was tired and grumpy. I brought them inside and got them a snack and they watched some cartoons. John called and said that he wouldn’t be home until late tonight so we just stayed home for the rest of the afternoon. Around 7:00 we headed over to the pool and Ciara sat and watched everybody while Hunter splashed his feet in the pool and played with his toys. We left the pool and got back home around 9:00 so I changed Hunter into some dry clothes and got him a snack. I hooked Ciara up to her feeding pump and then I watched a little TV. John finally came home around 11:00 so I got him something to eat, we watched the news and then everybody went to bed.
SATURDAY’S JOURNAL
I got up when John went to work this morning, but the kids slept until 8:00 or so. I made them something to eat and they watched a few cartoons. In the afternoon we went to Wal-Mart and then back home. Hunter was grumpy today so we stayed home for the rest of the day, that way nobody else had to hear him yelling. When John came home in the evening I made dinner. John went over to his dad’s house for a while and that is when Ciara started giggling, I think Tommy was tickling her feet! She continued to giggle and then the giggles turned into laughter. She continued for the next few hours. When John came home she was still laughing,, it was so cute! John went out with his cousin so the kids and I watched some TV. Ciara was still laughing and by 1:30 in the morning, the laughs had turned into a full-blown belly laugh and she couldn’t catch her breath she was laughing so hard. I couldn’t help but laugh along with her. When it was all said and done, that little girl laughed for almost 6 hours straight!
SUNDAY’S JOURNAL
We all got to sleep in this morning, we all needed it too! When the kids woke up I fed them and they relaxed for a while. After I ate, I got dressed and then dressed the kids. John’s cousin called and wanted us to go furniture shopping with him, so around noon we headed out to Stockton. We didn’t really find anything exciting, so we went home with nothing. We got home around 6:00 and we were going to go swimming, but nobody else wanted to go, so we stayed home. That was it for the evening, we had dinner, watched TV and went to bed.
MONDAY’S JOURNAL
I woke up around 5:30 so that I could get the kids fed, dressed, and off to school this morning. After they left, I helped John get his things ready and they he headed off to school. I ran out to the grocery store and then went back home. When the school bus brought the kids home, Hunter was sleeping and wasn’t happy when I woke him up. Ciara was in a good mood, so that was nice. When I got them in the house, I fed Ciara and got Hunter some juice. John came home around 5:00 or so, but he didn’t get the classes he needed so he will have to go back tomorrow and see what he can get. That’s all we needed, another day off work, oh well. After dinner we played some games, watched some TV and both kids were asleep by 10:00.
TUESDAY’S JOURNAL
Hunter didn’t want to wake up this morning, he has been very tired since school started. When the bus came this morning, Ciara was very happy and was smiling when I put her on the bus. After they left, I talked to Patty for a while and then John went off to school. Today is the first day of college and he is going to see if he can get the classes that he needs. He tried to sign up on-line, but the classes were full so hopefully he can get the ones he needs. He is going back to school because he wants to be a nurse. The kids came home around 2:45 and seemed happy, but a little tired. They went inside and watched some TV and I hooked Ciara up to the feeding pump. John came home around 5:00 and got the class that he needed so he is happy. I made dinner and then John had to leave for the fire dept meeting. The kids and I didn’t really do much for the rest of the evening. John didn’t get home until late and by that time, the kids were asleep, yippee!
WEDNESDAY’S JOURNAL
After I sent the kids off to school, I had a bite to eat and then ran out to the grocery store. I stopped by the school, just as they were heading out to recess, so I took Hunter out and he ran around and had a good time. Ciara stayed in the classroom because it was time for her to eat. When I left the school I went home and had some lunch before the kids came home. They both seemed happy when I got them off the bus, but Hunter seemed a little tired. They both sat on the couch and watched some cartoons for a while. John came home from work around 5:30 so I made dinner and that was about it for the evening. It was very nice, the kids were asleep by 10:00!
THURSDAY’S JOURNAL
Hunter didn’t want to wake up again this morning, not even for Barney! After I fed the kids and got them dressed, I sent them off to school. John had to leave for school at 6:00 this morning, but he was back home by 10:00. We went over to the fire department to start planning the 911 ceremony and open house. We were there for about an hour, then we ran over to Wal-Mart and then I went back home while John went over to get some things out of storage. He stopped by my mom’s to visit for a while, then he came home. The kids didn’t get home until almost 3:00 today, but they were both happy. After I got them both settled, I fed Ciara and got Hunter a snack and they watched cartoons for a while. John brought some boxes in and we started sorting things out, we ended up throwing most of it out. We decided to go to the pool this evening but it was cooler today so I didn’t put Ciara’s swim suit on her, I didn’t want her to be cold. After I put Hunter’s suit on him, we started walking out to the car and he started laughing, he was so happy that we were going to the pool, he just loves it! We swam from 6:00 to about 7:30 and then we ran back home to get into some dry clothes and then we went out with some friends. When we got back home, I fed Ciara, Hunter had some juice and he was asleep by 10:00.
FRIDAY’S JOURNAL
Hunter and Ciara both woke up before I did this morning, so I got them both fed and dressed and Hunter was laughing and watching Barney while we waited for the bus to come. After they headed off to school and John went to work, I grabbed a quick bite to eat and then I headed out to get my errands done. I ran to Stockton to get John’s paycheck, then I had to go to Sacramento to get some papers signed by Ciara’s doctor for the school, around 1:00 I grabbed a taco and headed back home. I got home about 20 minutes before the kids got home. My sister called and asked if I could pick up Mason from school so when Ciara and Hunter came home, I put them in the car and drove over to Mason’s school. Again, when I went to get Hunter off the bus, he walked down the steps! I took Mason with me to the bank, so he could stay in the car with the kids, then I took him home and we went to our house. I fed Ciara, Hunter had a snack, and we watched TV for a while. 
It is with great sorrow that I tell you all that our little friend Cody became an angel yesterday. He fought very hard for many years, but his body couldn’t take it anymore.
I just updated our soy journal, so stop by and see how the kids have been doing! BENNETT CHILDREN'S SOY JOURNAL We are still planning on going to the MPS Conference in November, but I don’t think it is going to happen. We just don’t have the money to go, especially since John started back to school this week so he won’t be working as much. If anybody can help us by doing a fundraiser, please let me know. We also have a donation website for the conference which is located up at the top of our journal. Thanks! For more information about the conference, you can click here: MPS CONFERENCE INFO 
Hugs To All, and ^^Angel^^ 
Thursday, August 11, 2005 10:31 AM CDT
I have another urgent request, our friend Cody is very sick and he isn't going to make it. Please stop by his journal and let his family know that you are praying for them. CODY'S JOURNAL
HAPPY BIRTHDAY JILLIAN!!! Today is Jillian's birthday, unfortunately she is still in the hospital. Michelle has been updating their journal so stop by to see how Jill is doing and to wish her a happy birthday! JILLIAN'S JOURNAL
SATURDAY’S JOURNAL
I woke up around 7:00 this morning so I made John’s lunch for work and then he left. Ciara was just waking up so I fed her and then relaxed for a few minutes. Hunter woke up around 9:00 so I got him something to eat and we watched some TV while I made myself something to eat. I talked to Patty for a while and then it was time to start getting the kids dressed. My mom called and asked if I could take her to the pharmacy so I told her I would pick her up around 2:00. After the pharmacy, I ran into Wal-Mart to pick up some door knob covers so that Hunter can’t open the front door and escape anymore. I also grabbed a storage bin with drawers so that I can get Ciara’s medical supplies organized, there are just too many now and they are everywhere. When we got back home, we relaxed for a couple of hours, but then around 6:00 I put on their swim suits and we went to the pool. John isn’t coming home tonight, so it is just the kids and myself and then some friends met us at the pool. When we got there I sat Hunter on the edge of the pool with his pool noodle and then I took Ciara in the water with me. She wasn’t very happy about that and protested for about 10 minutes so I put her back in her wheelchair. I took Hunter in with me and he did pretty good. After about 5 minutes, he started to fuss, so I sat him back on the edge of the pool. Later on I took Hunter back in the water with me and I decided that I was going to try and put him underwater. I dunked him a couple of times and he did great, he didn’t fuss or kick so I was happy. I figure if I continue to get him in the pool and keep it on his level, where he is in control, then we will be doing pretty good. I am still surprised that he is even near the pool, let alone in the pool and enjoying it! Around 8:00 we were done swimming and my friend asked if I wanted to go get some dinner with her and her two boys, so we went home and got into some dry clothes and then met up at the Mexican restaurant. Ciara was a little fussy, I think she was sitting too long, but Hunter had a good time and ate some nachos and French fries. After dinner we went back home and I fed Ciara and then we watched some TV before it was time for bed.
SUNDAY’S JOURNAL
I think I got up around 7:30 this morning and Ciara woke up not long after that. I hooked her up to the feeding pump and then we watched a little TV, then Hunter woke up. I got him some juice and something to eat and then I started a little cleaning. Around noon I talked to John and he said that he would be home around 1:30 so the kids and I just stayed home and relaxed. It is still hot today, yesterday it was 110 here in Ione and today it is supposed to be 105 so I really don’t feel like taking the kids out anywhere. After John came home from work we had dinner and then went to the pool around 6:00. Ciara had a bad day at the pool and was flopped over and crying and wiggling around, I have no idea what was bothering her. When we got back home, I changed the kids into their jammies and I noticed that Ciara had a sore behind her knee from rubbing on the wheelchair seat when she was wiggling around at the pool. So, I fed Ciara and Hunter had a snack and then we went to bed.
MONDAY’S JOURNAL
I honestly can’t remember what we did today, so I am not going to type anything, sorry!
TUESDAY’S JOURNAL
The kids and I slept in again this morning and it was nice. We did the usual morning things, fed the kids, got them dresses, watched cartoons. Around noon I had to take my mom to run her errands so we didn’t get back home until almost 4:00. I fed the kids and we just sat and relaxed for a while. John called and said that he isn’t coming home tonight and since there is a fire dept meeting at 7:00, we won’t be going swimming today. It is still hot here so we didn’t go out or do anything for the rest of the day. I made dinner and we watched some TV, played some games with Hunter and then the kids went to sleep around midnight.
WEDNESDAY’S JOURNAL
The kids and I didn’t get up until late this morning so I fed them and we watched some cartoons. Around noon I had to run out to Wal-Mart to pick up some things for school, it starts tomorrow. I really didn’t want to do this because the store was packed and Hunter was not happy, he screamed and cried the whole time we were in there. When we were out of the store, I got us something to eat and then we went home. I hooked Ciara up to the feeding pump and when it was finished, it was time to put the kids back in the car to pick my mother up from the hair dresser. We took her home and then went back to our house. I put on some cartoons and started dinner because John would be home soon. I decided to make a big pot of chili so that I won’t have to cook for a few days and I am going to freeze some. I still had some hamburger left over so I made some hamburger patties and when John came home, he had chili cheeseburgers. Around 7:00 we were just about to go over to the pool when John got a call on his fire dept pager. He was gone for a couple of hours and when he came home he said that it was for a 70 year old man who wrecked his motorcycle. Apparently this man had the accident around 1:00 but nobody saw him on the empty little back road so he laid there for 6 hours on the hot pavement with a broken femur and other injuries. It was so hot today and I just couldn’t imagine what that poor man went thru. So, since we didn’t get to go swimming, we just stayed in, watched some TV, played some games and the kids were asleep by 11:00.
THURSDAY’S JOURNAL
YIPPEE, school starts today!!! I got up and hooked Ciara up to the feeding pump and then made Hunter and John’s lunches. After I got the kids dressed, I put them on the bus and they were off. I love them, but it will be very nice to have a few hours to myself again! I made some breakfast, watched a little TV and then went thru a few things and mailed them off to some friends. While I was out I stopped by the school to see if they needed anything for Ciara, but they had everything so I got a bite to eat and then headed back home. When the bus brought them home, Ciara was happy and Hunter was sleeping. He has been used to staying up late and sleeping late in the morning so it is good that he will be back on his regular schedule again. We didn’t really do much for the rest of the afternoon. I called John to see what he was up to, he isn’t coming home tonight. He told me that the man in the motorcycle accident died this morning. I had been thinking of this man all afternoon and that was so sad. The kids had a snack and watched cartoons for a while. Around 7:00 I took them to the pool, but it is getting cooler, still hot, but by 8:00 it is cooling off, so I didn’t put Ciara’s swim suit on her because I didn’t want her to get cold. Hunter sat on the edge of the pool and splashed and laughed, he had a good time. We left the pool around 8:45 and went back home. I changed the kids, got them a little snack, hooked Ciara up to the pump and we watched some TV for about an hour. I talked to John around 9:30 and he said that he still have 2 hours of driving to do before he could stop and get a motel room, poor guy. By this time, Hunter was sleeping in the recliner, still clutching his cup. I took Ciara out of her Tumble Form chair and laid her down and we went to sleep.
One of our MPS buddy’s in need of your prayers today. Bryan is 19 years old and has Hunter’s. He went into surgery on Wednesday to have a shunt placed in his head, but yesterday everything went down hill. He had to be rushed back into surgery because of a brain bleed and as of this morning, his organs are shutting down and it doesn’t look good. You can visit his website by clicking here: Bryan's Journal
I will be updating our SOY JOURNAL this evening to stop on over and check it out!
It is getting to be that time of year again. Time for the MPS Society’s MPS Runs which take place in October. We will be attending the MPS Walk/Run LA again this year and we can’t wait to have fun and see our friends, old and new. If you are near the Los Angeles area, or would like to come anyway, here is the website with the info MPS RUN/WALK LA
Hugs To All, and ^^Angel^^ 
Friday, August 5, 2005 1:28 AM CDT
SATURDAY SOY UPDATE: Please visit our soy journal for some new information that we just received from the Professor. It is very important for you to read if your children are on the soy! BENNETT CHILDREN'S SOY JOURNAL
SATURDAY AM UPDATE: Ciara had a big seizure this morning at 8:00, but she seems to be doing alright since then. It is now 11:30 and she is tired, but awake and watching TV. I just heard that Jillian is back in the hospital for the same problem. She can't hold on to her platelets or blood. I will post more later this afternoon after I talk to Michelle. You can visit Jillian's journal by clicking here, JILLIAN'S JOURNAL.
TUESDAY’S JOURNAL
I was surprised when I woke up this morning and looked at the clock, it was 9:30! The kids slept until 10:00 so I got Hunter some juice and hooked Ciara up to her feeding pump, that was 10:00. Three minutes later Ciara had a seizure, but it didn’t last long at all and as soon as it was over, she was back to normal. After Hunter and I had a bite to eat, I got the kids dressed and we drove to Sloughhouse to get some corn for the BBQ tonight. When we got back home I hooked Ciara up to the feeding pump again and then my sister came over for a little bit. When she left, I shucked all the corn and started boiling it. John came home around 5:00 so he relaxed for a while and then at 6:00 we headed out to the pool for the BBQ and fire dept meeting. Ciara was happy and Hunter ate a hot dog and a cheeseburger and a little watermelon, then it was time to swim. While John was listening to the meeting, I sat Hunter on the edge of the pool and he kicked his feet and played while I took Ciara in the pool with me. She loved it, she kicked her feet and watched everybody. After about half an hour, John took her out and I brought Hunter in and I was surprised that he was smiling and having a good time. I only let him in for about 5 minutes, any longer and I was afraid that he would get scared so I sat him back up on the edge to splash around. The meeting was over so everybody jumped in the pool and I did bring Hunter in again, but not for long. We stayed until almost 10:00, then we headed back home and the kids went to sleep.
WEDNESDAY’S JOURNAL
The kids and I got up around 8:00 this morning so I fed them and we watched a little TV. Around noon we picked up my mom and ran some errands, then I dropped her off at her house and we went back home. I made something to eat and we relaxed because it is hot again today. Hunter has still been a little grumpy and Ciara is still not acting right, I am not sure what is going on. Make sure and read our soy journal for more information! John isn’t coming home tonight so I took the kids to the pool at 7:00 but I didn’t take Ciara swimming and Hunter just wanted to sit on the edge and kick his feet in the water. We got back home around 9:00 so I hooked Ciara up to her feeding pump and got Hunter some juice and a snack and we watched TV, but the kids didn’t go to sleep until midnight.
THURSDAY’S JOURNAL
I woke up around 7:00 this morning, but the kids didn’t get up until almost 10:00 so that was very nice. After I fed them, we watched some cartoons for a while. In the afternoon I went out to run some errands and then went back home. It is hot again today, the news said it was supposed to be 105 for the next week, yuck! When we got home I fed both kids and Ciara relaxed in her recliner while Hunter bounced around the living room for a while. This evening we are supposed to go to a birthday party, but John isn’t going to get home in time and I don’t feel like taking the kids out in the heat so I don’t know if we will go. I talked to John and he said he would be home around 7:30 so I put the kids in the car and went over to the party to drop off the present and then went back home to start John’s dinner. When we got back home, Ciara actually walked from the car to the house which she hasn’t been able to do for several days so that was great to see! When John came home he ate and then I ran back to the party while he watched the kids. I went back because I wanted to be there when Calista got her big present. It was her 16th birthday and they got her a new car! After that, I went back home and got the kids a snack and watched some TV before it was time for bed.
FRIDAY’S JOURNAL
I woke up around 7:00 this morning so I made John’s lunch for him to take to work. Patty called so we talked for a while and then Ciara woke up, but Hunter didn’t get up until 10:30, when I woke him up. I had already fed Ciara to I got Hunter a bite to eat, got them both dressed and we headed out to get our errands done before it got too hot. When we got back home I stopped by Mason’s house to give him some balloons and his birthday present, he is 13 today. Lord help us, he is a teenager now! I took the kids back home and we watched some TV while I fed Ciara. I was going to take the kids to the pool at 7:00, but John surprised us by coming home. So, I made dinner and got Hunter’s swim suit on him and we headed out to the pool around 7:30, but when we got there, nobody was there, so we had to go home. I ran to the grocery store and when I got back home, John said that Hunter opened the front door twice and got outside. We have to watch that kid like a hawk these days! For the rest of the evening we just watched TV and played some games. It is now 11:30 and Ciara just fell asleep, but Hunter is still. I am going to hook Ciara up to her feeding pump right now and I think Hunter will fall asleep soon, he is getting cranky so I know he is tired.
I just updated our soy journal so pop on over and see how the kids have been doing! There is also some VERY important information in our journal for those of you who are giving your kids the soy so please go on over and read it.BENNETT CHILDREN'S SOY JOURNAL I have some sad news to share. I don’t know if you have heard about Jim Kelly’s son, Hunter, who was born with Krabbe’s Disease. Jim Kelly is a Hall Of Fame Quarterback and he started Hunter’s Hope to find a cure for Krabbe. Well, Hunter earned his angel wings today and I know that he is at peace now. Our heartfelt prayers go out to Hunter’s family. You can read an article about Hunter here HUNTER'S STORY and visit Hunter’s Hope website by clicking here HUNTER'S HOPE WEBSITE
It is getting to be that time of year again. Time for the MPS Society’s MPS Runs which take place in October. We will be attending the MPS Walk/Run LA again this year and we can’t wait to have fun and see our friends, old and new. If you are near the Los Angeles area, or would like to come anyway, here is the website with the info LA MPS RUN WEBSITE
Hugs To All, and ^^Angel^^ 
Friday, August 5, 2005 1:28 AM CDT
TUESDAY’S JOURNAL
I was surprised when I woke up this morning and looked at the clock, it was 9:30! The kids slept until 10:00 so I got Hunter some juice and hooked Ciara up to her feeding pump, that was 10:00. Three minutes later Ciara had a seizure, but it didn’t last long at all and as soon as it was over, she was back to normal. After Hunter and I had a bite to eat, I got the kids dressed and we drove to Sloughhouse to get some corn for the BBQ tonight. When we got back home I hooked Ciara up to the feeding pump again and then my sister came over for a little bit. When she left, I shucked all the corn and started boiling it. John came home around 5:00 so he relaxed for a while and then at 6:00 we headed out to the pool for the BBQ and fire dept meeting. Ciara was happy and Hunter ate a hot dog and a cheeseburger and a little watermelon, then it was time to swim. While John was listening to the meeting, I sat Hunter on the edge of the pool and he kicked his feet and played while I took Ciara in the pool with me. She loved it, she kicked her feet and watched everybody. After about half an hour, John took her out and I brought Hunter in and I was surprised that he was smiling and having a good time. I only let him in for about 5 minutes, any longer and I was afraid that he would get scared so I sat him back up on the edge to splash around. The meeting was over so everybody jumped in the pool and I did bring Hunter in again, but not for long. We stayed until almost 10:00, then we headed back home and the kids went to sleep.
WEDNESDAY’S JOURNAL
The kids and I got up around 8:00 this morning so I fed them and we watched a little TV. Around noon we picked up my mom and ran some errands, then I dropped her off at her house and we went back home. I made something to eat and we relaxed because it is hot again today. Hunter has still been a little grumpy and Ciara is still not acting right, I am not sure what is going on. Make sure and read our soy journal for more information! John isn’t coming home tonight so I took the kids to the pool at 7:00 but I didn’t take Ciara swimming and Hunter just wanted to sit on the edge and kick his feet in the water. We got back home around 9:00 so I hooked Ciara up to her feeding pump and got Hunter some juice and a snack and we watched TV, but the kids didn’t go to sleep until midnight.
THURSDAY’S JOURNAL
I woke up around 7:00 this morning, but the kids didn’t get up until almost 10:00 so that was very nice. After I fed them, we watched some cartoons for a while. In the afternoon I went out to run some errands and then went back home. It is hot again today, the news said it was supposed to be 105 for the next week, yuck! When we got home I fed both kids and Ciara relaxed in her recliner while Hunter bounced around the living room for a while. This evening we are supposed to go to a birthday party, but John isn’t going to get home in time and I don’t feel like taking the kids out in the heat so I don’t know if we will go. I talked to John and he said he would be home around 7:30 so I put the kids in the car and went over to the party to drop off the present and then went back home to start John’s dinner. When we got back home, Ciara actually walked from the car to the house which she hasn’t been able to do for several days so that was great to see! When John came home he ate and then I ran back to the party while he watched the kids. I went back because I wanted to be there when Calista got her big present. It was her 16th birthday and they got her a new car! After that, I went back home and got the kids a snack and watched some TV before it was time for bed.
FRIDAY’S JOURNAL
I woke up around 7:00 this morning so I made John’s lunch for him to take to work. Patty called so we talked for a while and then Ciara woke up, but Hunter didn’t get up until 10:30, when I woke him up. I had already fed Ciara to I got Hunter a bite to eat, got them both dressed and we headed out to get our errands done before it got too hot. When we got back home I stopped by Mason’s house to give him some balloons and his birthday present, he is 13 today. Lord help us, he is a teenager now! I took the kids back home and we watched some TV while I fed Ciara. I was going to take the kids to the pool at 7:00, but John surprised us by coming home. So, I made dinner and got Hunter’s swim suit on him and we headed out to the pool around 7:30, but when we got there, nobody was there, so we had to go home. I ran to the grocery store and when I got back home, John said that Hunter opened the front door twice and got outside. We have to watch that kid like a hawk these days! For the rest of the evening we just watched TV and played some games. It is now 11:30 and Ciara just fell asleep, but Hunter is still. I am going to hook Ciara up to her feeding pump right now and I think Hunter will fall asleep soon, he is getting cranky so I know he is tired. I just updated our soy journal so pop on over and see how the kids have been doing! BENNETT CHILDREN'S SOY JOURNAL I have some sad news to share. I don’t know if you have heard about Jim Kelly’s son, Hunter, who was born with Krabbe’s Disease. Jim Kelly is a Hall Of Fame Quarterback and he started Hunter’s Hope to find a cure for Krabbe. Well, Hunter earned his angel wings today and I know that he is at peace now. Our heartfelt prayers go out to Hunter’s family. You can read an article about Hunter here HUNTER'S STORY and visit Hunter’s Hope website by clicking here HUNTER'S HOPE WEBSITE It is getting to be that time of year again. Time for the MPS Society’s MPS Runs which take place in October. We will be attending the MPS Walk/Run LA again this year and we can’t wait to have fun and see our friends, old and new. If you are near the Los Angeles area, or would like to come anyway, here is the website with the info LA MPS RUN WEBSITE
Hugs To All, and ^^Angel^^
Monday, August 1, 2005 2:45 AM CDT
I just put up some new pictures so go check them out!
TUESDAY 10:03 AM UPDATE: Ciara just had a seizure, but it didn't last long and she is doing fine right now. Hopefully this will be the only one she has today.
FRIDAY’S JOURNAL
This morning when we all got up, I fed everybody, John went to work and the kids watched cartoons for a little while. Around 9:30 we were out the door and on our way to Stockton to get John’s paycheck. On the way home I stopped at Burger King and got Hunter some of their new chicken fries, have you seen those? They look like French fries, but they are made of chicken. He was excited when he saw them, but I sure wish I new what he was thinking when he took that first bite. Hmm, they look like a French fry, but they taste like chicken!? So, he munched on those all the way home. When we got home I talked to my sister and she said that she was taking Mason over to the county fair, so I decided to go with, the kids need to get out and they will have fun. We got there around noon and went over to see how Mason’s picture did. He entered a photo that he took of his brother and sister, and he won first place! After that we stopped to get something to eat, I hadn’t had a bite all day, and then my sister had to leave for work so the kids and I headed out to Sacramento. I picked up what I needed and started back home. That is when Hunter started screaming and crying. He cried all the way home, which with the traffic as bad as it was today, it took over an hour to get home. When we got home I tried everything I could think of to make him happy, but nothing worked so he just kept on crying. After I fed the kids we headed out to the pool, that was around 7:00 tonight. John is doing an over night haul so he won’t be home. Hunter sat on the edge of the pool and kicked his feet, he seemed to be happy. But that only lasted about half an hour, then the crying started up again. He actually got up twice and wanted to run away, so I really have no idea what his problem is. We left the pool around 8:30 and went back home were he continued to fuss for a while. I put his jammies on and got him some juice and he was asleep fast. Ciara seems happier tonight so hopefully she will sleep well too.
SATURDAY’S JOURNAL
Ciara woke up around 4:00 this morning, whining a little, so I changed her diaper and she went back to sleep. Hunter slept until 8:00 this morning and was a little fussy when he got up, but not too bad. He did have a big poop, so maybe that is why he was crying yesterday, I just don’t know. Ciara seems happier this morning too so I have her hooked up to her feeding pump and they are both watching “Maggie and the Ferocious Beast.” It is now noon and Hunter has been happy all morning. Ciara just started fussing, so I changed her diaper and she has some bad diaper rash so maybe that is what has been bothering her? After I changed her, she was happy and they are both on the couch watching Blue’s Clues. In the afternoon I took the kids to the grocery store and then we went back home. It was really hot again today so we aren’t doing much. John came home around 6:00 so I fed him, Hunter ate a little bit later. The past couple of nights I have been trying something different with Ciara when I feed her. She doesn’t like certain things anymore, like applesauce, etc, when I feed her, she makes a face. So, I bought some stage 3 baby food like pears, fruit salad, custard because I thought maybe the regular applesauce was too coarse and she didn’t like the texture. I also have stage 2 baby food like turkey with sweet potatoes, etc, because stage 2 isn’t chunky or lumpy, but she doesn’t eat the stage 2. What I have been doing is in the evening she will eat about 2/3 of the large stage 3 fruit and then what’s left over I will dump into her feeding bag, add in a little stage 2 meat and veggie, mix in some water to thin in out and I just run it thru her feeding tube. That way she will be getting her meat, veggies, fruit, etc instead of just her formula. But I always let her eat the dessert by mouth, a girl has to have some fun! OK, on with the evening. We watched some TV and I think both kids were asleep by 11:00 and they both had a great day today!
SUNDAY’S JOURNAL
Once everybody woke up this morning, I made breakfast. Everybody got a bath and then we got dressed and went to Wal-Mart, then we went home. While the kids watched cartoon, John and I did a little work around the house. In the evening we took the kids to the pool, but it was a little too cool to take the in the pool, I didn’t want them to get cold. Ciara sat in her wheelchair and Hunter dangled his feet in the pool. We left around 8:30 and went home. I changed the kids, fed Ciara and they were asleep by 11:00.
MONDAY’S JOURNAL
The kids didn’t sleep at all last night so that means I didn’t sleep at all last night. John went to work around 4:00 this morning and I was hoping to get some sleep, but it just didn’t happen. I talked to John and he said that he wasn’t coming home tonight so the kids and I stayed in for most of the day. In the afternoon we went out to the post office, grabbed a pizza and then Mason needed a ride to his friend’s house, then we went back home. Hunter and I ate some pizza and I hooked Ciara up to her feeding pump. The wheelchair company called and said that they finally got approval for Ciara’s wheelchair, thank God! We had ordered it in January, but it took this long for the insurance to decide if they were going to pay for it or not, so we should be getting it in about 4-6 weeks. Hunter was a little cranky this afternoon, but not too bad, considering he didn’t sleep last night. In the evening we had dinner and watched TV. Around 8:00 I made some popcorn and Hunter and I ate it and watched the Cosby Show. I was very happy when both kids fell asleep around 11:30!
This little pic is for you Kelly, it made me think of you. How is everything going and you have to tell me about the wedding! I don’t have your email address anymore so will you please email me, thanks! It is getting to be that time of year again. Time for the MPS Society’s MPS Runs which take place in October. We will be attending the MPS Walk/Run LA again this year and we can’t wait to have fun and see our friends, old and new. If you are near the Los Angeles area, or would like to come anyway, here is the website with the info MPS RUN LA WEBSITE 
I do not need a special day
To bring you to my mind
The days I do not think of you
Are very hard to find.
Each morning when I awake
I know that you are gone
No one knows the heartache
As I try to carry on.
My heart still aches with sadness,
And the secret tears still flow,
What it meant to lose you
No one will ever know.
My thoughts are always with you,
Your place no one can fill,
In life I loved you dearly,
In death I love you still.
There will always be a heartache,
And often a silent tear,
But always a precious memory
Of the days when you were here.
If tears could make a staircase,
And heartaches make a lane,
I’d walk the path to Heaven
And bring you home again.
I hold you close within my heart,
And there you will remain,
To walk with me throughout my life
Until we meet again.
Our family chain is broken now,
And nothing seems the same,
But as God calls us one by one
The chain will link again.
Hugs To All, and ^^Angel^^
Wednesday, July 27, 2005 10:32 PM CDT
MONDAY 2:30 PM: In case you are not aware, our friend Cody has to be sent to PICU and put on a ventilator. Things are not looking good and they are trying to get him stable and sent to Duke. His little body has been through so much and obviously it's taking a toll on the entire family. Eleasha has asked that a 24 hour prayer vigil be organized for Cody. It will be broken up into 15 minute segments throughout the day. Because I know people are busy, this should be a short enough time frame for people to be able to commit to. If you have more than 15 minutes to pray, please feel free to take as many time slots as you would like. If you have a preferred (15-60 minute) period of time, please let me know that. If not, please just let me know you'd like to participate and I will send you a time according to the time slots that are not currently filled. All times should be submitted, and will be assigned in EDT since that's where Cody is right now. I've emailed so many of you because we need to get this done ASAP. I know you are praying already, but it would mean so much to this family to know that they are being covered in prayer around the clock. So, the time slots will be on the hour, 15 after, 30 after & 45 after each hour. You can reach me at this email address, khalita@yahoo.com, or by phone at (336)250-9175. If you know of someone who is not on this list who would like to/be willing to participate, please, please forward the information to them. All that is required is a heart that loves God, considers Jesus Christ as Savior and Lord, and is willing to devote a specific period of time each day to fulfill a suffering family's request for 24 hour prayer. Thank you in advance for your help. You can visit Cody's journal by clicking here: Cody's Journal
Thanks,
Khalita
I just updated our soy journal so pop on over and check it out! BENNETT CHILDREN'S SOY JOURNAL
SATURDAY’S JOURNAL:
Ciara woke me up around 5:30 this morning when she was having a coughing attack. After about 5 minutes of some pretty bad coughing, I gave her some cough medicine and she stopped right away and we went back to sleep. I woke up again around 7:00 this morning and turned on the TV. Patty called so we talked for a little while and then Hunter and Ciara woke up. After I fed everybody, we didn’t do much for the rest of the morning. It was hot again today and I just didn’t feel like going anywhere or taking the kids out, so we just stayed home and relaxed. In the evening we went to the pool with our friends. Hunter let us take him in the pool again, he even let John put him in the little rubber boat. Usually when we put Ciara in the pool she isn’t too happy about it, but tonight she was smiling and kicking her feet, she had a great time! I think I kept her in the pool for half an hour, it was so funny to see her so happy. When we got back home I changed their clothes and not soon after that, they were both asleep.
SUNDAY’S JOURNAL:
We all slept in the morning so when we got up, I made breakfast. It is another hot hot day, blah! Today we are going to John’s dad’s house because as you may remember, John’s mother passed away in September and tomorrow would have been her birthday. So we are all going over to his dad’s to spend the day with him. Before we went over, I made a couple of lasagna’s and we were off to his house. John’s brother and sister’s were there with all their kids so Hunter was very happy and laughed and danced around. Ciara was tired so she took a little nap while everybody else ate. Usually when I give Hunter lasagna or spaghetti, he only eats a few bites, but today he ate his whole piece of lasagna and all of his bread, I think he would have eaten more if I let him, but their carpets are very light, almost white, so I didn’t want to push it. When Ciara woke up I decided to see if she would eat some apple pie and she did, she loved it. Hunter was very happy when I gave him some carrot cake. It was time to head back home so that we could meet up with our friends at the pool. John had a headache so he dropped the kids and I off at the pool and went home for an hour. Hunter kicked his feet in the water, but cried when I tried to take him in the pool so I just left him alone to play and splash, I don’t want to scare him and have him afraid of the water again. John came back around 9:00 and we went home. I got Hunter some juice and fed Ciara and we went to bed.
MONDAY’S JOURNAL
We did the usual morning routine, fed the kids and put on cartoons. John isn’t working today so around noon, we headed out to Sacramento to get a few things, then we went back home. Today it was 107 degrees so when we got home, we didn’t leave the house again. John decided to mow the lawn and wash the cars, but at least he was out there with the water. After he finished washing the cars, I guess the neighbors chicken decided that our driveway looked like a nice cool wet place for them to hang out, not to mention the cut grass laying around which was a tasty treat for them so they all came over and hung out in our driveway. Once the neighbors rounded up their chickens, we went back inside, it was funny to watch though. I made dinner, watched a little TV and we all went to bed.
TUESDAY’S JOURNAL
Around 4:00 this morning, the phone rang and it was somebody’s fax machine screeching in my ear. A few minutes later the phone rang again, same thing, ahh!!! I had a hard time falling back to sleep, but eventually I did. Ciara and I woke up again around 7:00 so I fed her and got her settled for a while, then Hunter woke up. I got him something to eat and drink and he watched cartoons, happy as a clam. John went to work, he won’t be coming home tonight, so I made myself something to eat and watched a little TV myself. In the afternoon the kids and I ran out to the grocery store, but then went back home. In the afternoon I debated on whether I wanted to take the kids to the city pool. I was hot outside, but I just didn’t want to take them by myself, so we stayed home. That was about it for the rest of the evening, we just stayed home and tried to stay cool. My mom came over for a couple of hours this evening so we had dinner and then she went home. Hunter even went to bed around 9:30 tonight!
WEDNESDAY’S JOURNAL
This morning the kids and I got up around 8:00 and Hunter was looking for something to drink so I got him some juice and hooked Ciara up to her feeding pump. We watched some TV, had a bite to eat and just took it easy. Hunter has been in a great mood today, just happy and very content. Ciara has been alert and active today, I wish I had a stander or something that I could put her in because it seems like she wants to stand and walk all the time. In the afternoon my sister and Mason stopped by for a few minutes, they will be back later this evening. Around 4:00 I got Hunter something to eat and hooked Ciara up to the pump again, after she ate some vanilla custard which she really seemed to enjoy, I will have to get her some more of that. I talked to John and he said that he should be home around 6:00 this evening so I have to decide what to make for dinner. Some friends called and said that they were going to the pool around 8:00 tonight so when John came home, I made dinner, got the kids dressed and we went to the pool. I didn’t put Ciara in today because it wasn’t as hot and I didn’t want her to get cold. Hunter sat on the edge and played in the water and kicked his feet, but I didn’t get him in the pool either. John came back to get us around 9:00 and we went home. I hooked Ciara up to the feeding pump and when it was finished, she started fussing. She hasn’t fussed for weeks now so I am wondering what is bothering her. Hunter was tired and went to bed around 10:00, but Ciara was still fussy and whined half the night. One of our friends is in great need of your prayers today. Lindsey is 7 years old and has Sanfilippo. I got to know this family while Tommy was at Duke and Lindsey has been thru so much, she is an amazing little girl. Seven months ago her family took her home from the hospital after they were told that she wouldn't live much longer, hours, days, weeks. It now looks like her time is coming and I know how hard it is for Mark and Karen right now so please, pray for Lindsey to be comfortable and pray for her family to get thru this difficult time. You can visit Lindsey's journal by clicking here: LINDSEY'S JOURNAL
As most of you know, Tommy’s picture was in the US News & World Report a couple of weeks ago, but his picture is still up on the Children’s Miracle Network website! It is down in the lower right corner, it is Tommy and Dr. Kurtzberg. CHILDREN'S MIRACLE NETWORK WEBSITE It is getting to be that time of year again. Time for the MPS Society’s MPS Runs which take place in October. We will be attending the MPS Walk/Run LA again this year and we can’t wait to have fun and see our friends, old and new. If you are near the Los Angeles area, or would like to come anyway, here is the website with the info MPS RUN LA WEBSITE DON'T FORGET TO SIGN OUR GUESTBOOK AND LET US KNOW YOU WERE HERE, IT REALLY MEANS A LOT TO US!
Hugs To All, and ^^Angel^^ 
Friday, July 22, 2005 11:59 PM CDT
I have a favor to ask all of you. Since my computer crashed, I can't get any of my phone #'s, mailing addresses, or email addresses that I had. I would really appreciate it if those of you who I have emailed, called, etc. would PLEASE email me your phone #'s, addresses, and/or email addresses. I just feel lost now that I can't contact anybody. This means family too, I don't have anybody's info! THANKS!!!
TUESDAY’S JOURNAL:
I got up around 6:00 and hooked Ciara up to the feeding pump, made lunches, got the kids dressed, the kids off to school and John was off to work. I did my usually routine, made breakfast and watched a little TV before I ran out to get my errands done before the kids came home from school. I had just walked into Wal-Mart when I got a pleasant surprise. I was standing at the front of the store when I saw these little stick legs coming around the corner of a rack of clothes and then I saw Ciara. The class took a little shopping field trip which Ciara likes, she likes to get out and watch people. After I left the store I had to run home because the kids would be there soon. John isn’t coming home tonight so I ordered a pizza for dinner which made Hunter very happy, we haven’t had pizza for a while. Both kids were happy when they got home and they had a snack and watched cartoons for a while. In the evening we ate the pizza and that was about it, kind of a boring day. Both kids were asleep by 10:30, woohoo!
WEDNESDAY’S JOURAL:
The kids went to school this morning and after I had some breakfast, I ran out to the store and then went back home but I stopped by Mason’s house to see what he was doing and if he needed anything. When the kids came home they were both in a good mood so I put on some cartoons for them and we just took it easy. John didn’t get home until late tonight so we watched the news and then the kids went to bed.
THURSDAY’S JOURNAL
I got up around 6:00 and hooked Ciara up to her feeding pump and then make Hunter’s lunch/snack for school. John left for work and then I got the kids dressed and sent them off to school. I made myself something to eat and then it was time to head over to the school. Today is the last day of summer school and I told the teacher that I wanted to take the class to McDonalds for lunch. So, I went over to the school and then we all went to McDonalds and the kids were so excited. We ate outside in the play yard and the kids ate their lunches, even Ciara ate a few french fries, and then the boys got the biggest kick out of feeding the birds some French fries, it was funny. After lunch they all played and then it was time to head back to school, but I took Ciara and Hunter with me. We stopped at the store and then headed home. John isn’t coming home tonight so we really didn’t do much for the rest of the day. In the evening I made dinner and we watched some cartoons. Hunter fell asleep around 10:00, but Ciara was still awake at 11:00 and just chattering away and having a great time.
FRIDAY’S JOURNAL
Around 2:20 this morning I woke up because I heard Ciara having a seizure. It wasn’t a very big one, and afterwards she went back to sleep. The kids and I slept in this morning and then had some breakfast and watched a little TV. Around 10:30 I put them in the car and we headed out to get our errands done and take my mom to the grocery store. When we finally got home in the afternoon I was tired so the kids and I relaxed, I hooked Ciara up to her feeding pump, Hunter had some juice and a snack, and we just sat around and watched some TV. The weather has been much nicer today, it was only 95 degrees instead of the 103 it has been for the past 2 weeks. John came home from work around 6:00 so I made dinner and everybody was happy. John’s cousin called and needed his help with something so John left for a while. When he came home, around 10:00, he was surprised that Hunter was already asleep, but it only lasted about an hour, they he was jumping on the couch again. I finally got him back to sleep around 1:30 this morning.
I updated our Soy Journal so pop on over to see how the kids are doing, just click here: BENNETT CHILDREN'S SOY JOURNAL JILLIAN UPDATE: Jillian was discharged from the hospital on Thursday. The doctor’s still don’t know why she is losing her platelets and blood, but they have her on a large dose of steroids which seems to be helping. I will let you know more when I hear something!
Hugs To All, and ^^Angel^^ 
Friday, July 22, 2005 11:59 PM CDT
TUESDAY’S JOURNAL:
I got up around 6:00 and hooked Ciara up to the feeding pump, made lunches, got the kids dressed, the kids off to school and John was off to work. I did my usually routine, made breakfast and watched a little TV before I ran out to get my errands done before the kids came home from school. I had just walked into Wal-Mart when I got a pleasant surprise. I was standing at the front of the store when I saw these little stick legs coming around the corner of a rack of clothes and then I saw Ciara. The class took a little shopping field trip which Ciara likes, she likes to get out and watch people. After I left the store I had to run home because the kids would be there soon. John isn’t coming home tonight so I ordered a pizza for dinner which made Hunter very happy, we haven’t had pizza for a while. Both kids were happy when they got home and they had a snack and watched cartoons for a while. In the evening we ate the pizza and that was about it, kind of a boring day. Both kids were asleep by 10:30, woohoo!
WEDNESDAY’S JOURAL:
The kids went to school this morning and after I had some breakfast, I ran out to the store and then went back home but I stopped by Mason’s house to see what he was doing and if he needed anything. When the kids came home they were both in a good mood so I put on some cartoons for them and we just took it easy. John didn’t get home until late tonight so we watched the news and then the kids went to bed.
THURSDAY’S JOURNAL
I got up around 6:00 and hooked Ciara up to her feeding pump and then make Hunter’s lunch/snack for school. John left for work and then I got the kids dressed and sent them off to school. I made myself something to eat and then it was time to head over to the school. Today is the last day of summer school and I told the teacher that I wanted to take the class to McDonalds for lunch. So, I went over to the school and then we all went to McDonalds and the kids were so excited. We ate outside in the play yard and the kids ate their lunches, even Ciara ate a few french fries, and then the boys got the biggest kick out of feeding the birds some French fries, it was funny. After lunch they all played and then it was time to head back to school, but I took Ciara and Hunter with me. We stopped at the store and then headed home. John isn’t coming home tonight so we really didn’t do much for the rest of the day. In the evening I made dinner and we watched some cartoons. Hunter fell asleep around 10:00, but Ciara was still awake at 11:00 and just chattering away and having a great time.
FRIDAY’S JOURNAL
Around 2:20 this morning I woke up because I heard Ciara having a seizure. It wasn’t a very big one, and afterwards she went back to sleep. The kids and I slept in this morning and then had some breakfast and watched a little TV. Around 10:30 I put them in the car and we headed out to get our errands done and take my mom to the grocery store. When we finally got home in the afternoon I was tired so the kids and I relaxed, I hooked Ciara up to her feeding pump, Hunter had some juice and a snack, and we just sat around and watched some TV. The weather has been much nicer today, it was only 95 degrees instead of the 103 it has been for the past 2 weeks. John came home from work around 6:00 so I made dinner and everybody was happy. John’s cousin called and needed his help with something so John left for a while. When he came home, around 10:00, he was surprised that Hunter was already asleep, but it only lasted about an hour, they he was jumping on the couch again. I finally got him back to sleep around 1:30 this morning. I updated our Soy Journal so pop on over to see how the kids are doing, just click here: BENNETT CHILDREN'S SOY JOURNAL JILLIAN UPDATE: Jillian was discharged from the hospital on Thursday. The doctor’s still don’t know why she is losing her platelets and blood, but they have her on a large dose of steroids which seems to be helping. I will let you know more when I hear something!
Hugs To All, and ^^Angel^^
Monday, July 18, 2005 10:33 PM CDT
I am asking you all to keep Alyssa in your prayers. She has been going thru a very difficult time the past couple of days. I really don't want to get into it here, but she was assaulted by somebody that she trusted and he is saying that it was all her fault, but he is wrong. He better thank his lucky stars that I am not in Florida right now!
THURSDAY’S JOURNAL:
I got up around 6:00 this morning so I made lunches and got the kids dressed and off to school. When the kids got to school, I got a phone call from the teacher. She said that Ciara threw up on the bus so I needed to come get her. When I got to the school they said that right after they talked to me, Ciara had a seizure. She was laying down when I got there, the teacher had just massaged her with lotion and she was very relaxed and comfy. I put her in the car and we went out to run some errands, then we went home. Hunter came home from school around 12:30 and I got him some juice and he watched cartoons. I started getting things together for our camping trip this weekend. John came home around 5:00 so I made dinner and we tried to stay cool. Around 7:00 we headed over to the swimming pool and stayed there until 10:00, it was so nice! Again, Hunter got in the water and he even let me put him on his tummy and he kicked his feet a few times before he got scared, I was shocked! When we got home I changed the kids, got them some juice and they were asleep by 11:00.
FRIDAY’S JOURNAL:
I woke up around 7:00 and started packing and getting everything together for our trip while John went to work for a few hours. When he came home we packed up the van and hit the road. We stopped in Sacramento so I could get some Panera soup and bread to take with us and then we had to stop at Target to get a couple of things, then we were off to Lake Shasta. When we got to Antlers camp ground, I was surprised that there were 2 Antlers cam grounds because the last time I was there, there was only one. Of course when I made our reservations on-line, I made them at the wrong one, not the one that we used to stay at. So, the one that we will be staying at doesn’t have anything, no store, no pool, so lake access, even though we are right next to the lake we can’t get to it. So, we started to unpack and set the tent up but it was so hot and Ciara wasn’t looking too good. We put her in John’s chair and she just wilted, she looked like a flower that hasn’t had water for a week. She was just flopped to the side, her face was red and her eyes were rolled into the back of her head, I was worried about her. After the tent was up and we had things under control, I put Ciara in the tent so that she could lay down on the air mattress and she was happier. I made dinner and then we just sat around and prayed that it would cool down soon. Ciara had fallen asleep around 10:00 and I went in the tent with her and watched a DVD while John and Hunter relaxed outside where it was cooler, not much, but cooler then in the tent. Around 11:00 Hunter came into the tent and within 2 minutes, he was asleep.
SATURDAY’S JOURNAL:
I woke up around 7:00 so I got up and grabbed a bite to eat. When John and Hunter woke up I made their breakfast and finally the little princess woke up so I fed her too. It was about 10:00 and it was already hot and I just wasn’t looking forward to spending another hot day so we went over to the other camp ground which was only a couple of minutes up the road. We drove around the property and we saw that they had a pool but it was only for the cabin guests, not even for the people staying at the camp sites. I went into the office and told them that I had thought I had made reservations at their camp ground but we were at the other one instead. I told the lady that we had 3 disabled kids that couldn’t go in the lake and would it be possible to use their pool today, I didn’t care how much it cost me. She said no problem and handed me a key to the pool, she was so nice and I was surprised that I didn’t have to pay anything. When we got back to our camp site, Shaun and Zach (Zach has MPS-I) were already there, they made it down from Oregon and it was only 10:30, you can visit Zach's journal by clicking here Zach's Journal. They set up their tent and then while we waited for John’s sister Kathy to arrive, we drove to the lake. Zach was so excited to get in the lake and swim and John was excited to get his little rubber boat in the lake. After we blew it up and John got in, Zach had to give him a few shoves to get him into the lake and then they both floated around the lake. Around 12:30 we headed back to the camp site and had lunch, that is when Kathy arrived. We got Ciara and Hunter into their floaty suits and went over to the pool. It was wonderful because nobody else was there, we had to pool all to ourselves! We put Ciara in the water, but she didn’t like it so we took her out and sat her in the shade with Aunt Kathy. Hunter spent the next several hours in the pool, sitting on the steps and playing with his toys, this is a huge step because he has always been terrified of water. At one point he even fell backwards off the step and just grabbed the side of the pool and held on until John swam over to get him and he never cried or fussed or made a peep, I was shocked! Zach became John’s shadow and everywhere John went, Zach was right behind him. Zach wanted John to get out of the pool and jump in with him so they jumped a couple of times but then John decided to do a cannon ball. Now, keep in mind the pool was only 5 ft deep so when John jumped in, his rear end smashed into the bottom of the pool. Needless to say, he sat out for a few minutes but got back in. It was so funny because all we heard from Zach was “jump John, jump, jump John, jump!” So he and Zach were jumping again and then John dove into the pool and yep, crashed his noggin into the bottom of the pool and came up holding his head, which had a nice big red bump on his forehead. So, he sat out for a while and I jumped in with Zach. We took Ciara into the pool a few times to cool her off and she liked it better then the first time. I had bought a noodle to play with in the pool so I grabbed Hunter off the step and put the noodle around him and we went all the way to the deep end and back to the steps and he didn’t even fuss once, he is becoming quite the little fish! We finally decided to head back to the camp site around 4:30 so I changed the kids and Ciara took a nap while we ate dinner. Zach was exhausted so he went to bed early and the rest of us just sat around and talked. When it got dark John started a camp fire, but it was way to hot outside to get near the fire so they just ate the marshmallows without toasting them, hehe. I think we went into the tent around 11:00 or so, not really sure, but Hunter wouldn’t go to sleep until I laid down next to him and then he was out like a light!
SUNDAY’S JOURNAL:
Hunter and I got up around 7:00 this morning so while he rolled around the tent, I took the dog for a walk. We went back in the tent, but not for long because Zach and Shaun were up so Hunter and I went out to join them. Eventually John and Ciara joined us so I fed Ciara and then we started packing up and by 11:00 we were ready to head home. About 15 minutes after we left the camp ground I saw the temperature, it was 111 degrees, ugh! On the way home we stopped a couple of times to get gas and give the dog some water and we finally made it home by 3:00. Hunter was happy because he got to watch cartoons and Ciara got to relax in her recliner. We all took it easy for a few hours and then we started to unpack the van and put things away. I made dinner and every body was exhausted and asleep by 10:00.
MONDAY’S JOURNAL:
I didn’t get up until 6:30 this morning so I had to rush to get Ciara fed before the bus came. I made lunches for the kids and John, got the kids dressed and off to school on the bus. Patty called so we talked for a while and then I went out to get some errands done. I had turned in my film to the one hour photo so while I was waiting for that I stopped by the school to see what they were doing. Ciara was taking a nap, but they were getting ready to go out on a little shopping trip so they will enjoy that. I got back home around 12:30 so I just finished putting the groceries away when the bus pulled up. This morning the news said that it was supposed to be 108 degrees today, but the Delta breeze came in and it is in the upper 90’s so it was nice today, still hot, but nice. Mason asked me to pick him up at 1:30 so he could come over, that surprised me because he hasn’t been over since the last day of school, he must really be bored. I was on the computer and he saw me signing somebody’s guest book and he saw me type “^^Angel^^ Tommy” and then he started thinking about the last time he saw Tommy before he died, he said he was trying to save some memories. I swear, every now and then he just catches me off guard, he is such a good kid. My sister came over around 3:00 and then she and Mason left, shortly before John came home. Ciara has been happy and alert today and Hunter has been smiling and just being very calm, it is so nice. In the evening we had dinner and watched some TV. By 10:00 Hunter was almost asleep and Ciara was curled up in John’s lap.
JILLIAN UPDATE: Jillian is still in the hospital and will be there for a while still. She is looking good and not hooked up to anything, but she is still losing her platelets. They are waiting for a test to come back and if that test if negative, they will get in touch with Dr. Kurtzberg to see what she thinks is going on. Jillian's Journal It is getting to be that time of year again. Time for the MPS Society’s MPS Runs which take place in October. We will be attending the MPS Walk/Run LA again this year and we can’t wait to have fun and see our friends, old and new. If you are near the Los Angeles area, or would like to come anyway, here is the website with the info MPS Walk/RUN LA Website!
I just wanted to let you all know that I changed my email address. For now I am still receiving emails at our other email address, but I can't send any so I am switching over to this new one at the bottom of this page. I put up some new pictures so check them out!
We are planning on going to the MPS Society's Family Conference in November, but we were hoping to get some financial assistance from the MPS Society. We applied for a scholarship, but I got an email today and we didn't get it. So, now we have to raise the money ourselves and pray that we can make it. We are really looking forward to going and seeing our friends, old and new, and hearing what the doctors have to say and the lastest in research. If you can help out with a donation or a fundraiser, please visit our donation website by clicking here: MPS Conference Donations Website
Hugs To All, and ^^Angel^^ 
Tuesday, July 12, 2005 1:55 AM CDT
SUNDAY 5:00 PM UPDATE: My computer is broken and I can't get it fixed for a while, so if anybody has sent me an email at Lumberhead@twinwolf.net since Thursday, please resend it to me at mps3mom@hotmail.com. I will try to update our journal in the morning after the kids go to school.
We just got home from spending the weekend camping with another MPS family. I will tell you all about it tomorrow!
Tommy's picture is in the new issue of "US News & World Report" so go buy one and check it out!!! I went to the store to get one, and they don't sell it in the rinky dink town we live in. :0(
Alyssa just emailed me the article so you can see it by clicking here: US NEWS ARTICLE
SUNDAY’S JOURNAL:
I woke up around 8:00 and then Patty called so we talked for a little while. When everybody else woke up I made breakfast and then got the kids dressed. While the kids were watching cartoons I decided to eat so I made myself some soup. Even though Hunter had JUST finished eating, apparently he was still hungry because he stuck his slimy little hand in my bowl of soup, eww! Needless to say he got something else to eat and I made myself another bowl of soup. John worked out in the yard for a while and then he set up our tent, to make sure we had all the pieces. We have never used it before and I didn’t realize how big it was so I am happy because I am claustrophobic and wasn’t looking forward to sleeping in a little tent with everybody. This coming weekend we are taking the kids on their first camping trip. We are going to Lake Shasta and meeting up with some other MPS families, one coming all the way from Oregon. It should definitely be an interesting trip because Hunter is afraid of water (Lake Shasta) and the dark and no electricity which means no cartoons. OK, later on the in evening we ran to Wal-Mart and then when we got back home I made dinner and Hunter was asleep by 10:00. Right about that time, Ciara started chatting and was very alert but she finally fell asleep around midnight.
MONDAY’S JOURNAL:
I woke up around 6:00 this morning so I made lunches for the kids to take to school and for John to take to work. Then I got the kids dressed and sent them off to school. After John left for work I had some breakfast and then Mason called and asked if I could bring him something to drink. After I visited with Mason for a little while I ran out to do a couple of errands before the kids came home. They got home around 12:30 and after I got them settled down with drinks and cartoons, I read the notebook from the teacher. You will have to read our Soy Journal to see what happened! We just took it easy for the rest of the afternoon because it is so hot. I was watching the news and they said that it will be 103 degrees for the rest of the week and we don’t have an air conditioner, just a swamp cooler so it is still hot in our house, just a little cooler then it is outside so I am not looking forward to the rest of the week. Around 5:00 my mom and sister came over and we went to Mason’s baseball game. Ciara and Hunter did great at the game, they were both happy and liked to watch everybody. Mason’s team was winning, but at the last minute the other team won by one run so they won’t be going to the Championship game but I am proud of him, he did a great job! After the game we went home and flopped on the couch and cooled off. I made dinner, we watched TV, the kids got a bath and Hunter was asleep by 10:00, Ciara fell asleep around midnight.
TUESDAY’S JOURNAL:
I didn’t get up until 6:30 so I had to rush around to get Ciara fed and everything ready before the school bus came. Hunter was in a very happy mood this morning and danced out to the school bus with a big grin on his face, he is so funny. After they left I made myself some breakfast and then ran out to the grocery store. I stopped by the school to drop off a book that the teacher let me borrow. Hunter was having lunch and Ciara was off on a little shopping trip with the teacher and a few other kids so I know she enjoyed that! I ran back home and relaxed for about an hour before the kids came home. They were both happy when the bus brought them home so I took them inside and turned on some cartoons and turned the fan up, boy is it hot today! Around 4:00 Mason called and asked if I could drive him to his baseball game. I was surprised because I thought he didn’t have any more games since they lost yesterday. He said that they have a double elimination so if they lose a second time, then they are out of the running for the championships. I dropped him off with his Gatorade and his water and went back home. It is way to hot today and I really don’t feel like dragging the kids around so I don’t think I will go to today’s game but if they win this one, they will have another game tomorrow. Unfortunately it is supposed to be 106 degrees tomorrow, ugh! John came home around 5:30 so I made dinner and then he had to go to the fire dept for helicopter training. The kids and I watched cartoons and then they fell asleep at 10:00 so I made my dinner. John came home around 9:30 or so and then we went to bed. It is getting to be that time of year again. Time for the MPS Society’s MPS Runs which take place in October. We will be attending the MPS Walk/Run LA again this year and we can’t wait to have fun and see our friends, old and new. If you are near the Los Angeles area, or would like to come anyway, here is the website with the info MPS Walk/RUN LA Website! I just updated our Soy Journal so stop by and see how the kids are doing! Bennett Children's Soy Journal I just wanted to let you all know that I changed my email address. For now I am still receiving emails at our other email address, but I can't send any so I am switching over to this new one at the bottom of this page. I put up some new pictures so check them out! We are planning on going to the MPS Society's Family Conference in November, but we were hoping to get some financial assistance from the MPS Society. We applied for a scholarship, but I got an email today and we didn't get it. So, now we have to raise the money ourselves and pray that we can make it. We are really looking forward to going and seeing our friends, old and new, and hearing what the doctors have to say and the lastest in research. If you can help out with a donation or a fundraiser, please visit our donation website by clicking here: MPS Conference Donations Website
Hugs To All, and ^^Angel^^ 
Friday, July 9, 2005 11:00 AM CDT
TUESDAY 9:00 AM JILLIAN UPDATE: I just talked to Michelle and Jillian is going into surgery any minute now to get a port put in and for a bone marrow biopsy. Her fevers have stopped, but she is losing blood and platelets again and they don’t know why. Keep checking back for an update! TUESDAY 8:00 AM: I just updated our Soy Journal so stop by and see how the kids are doing! Bennett Children's Soy Journal MONDAY 11:00 PM: I just put up some new pictures so check them out!
WEDNESDAY’S JOURNAL:
The kids didn’t want to sleep last night so they were up until 4:30 this morning, so was I. I got up around 6:15 and hooked Ciara up to the feeding pump, their school lunches, got them dressed and sent them on their way. I made some breakfast for myself and just relaxed. My eye is feeling better today, but I am afraid to put my contact lens back in this early so I am going to try and keep it out for as long as I can today. But that makes it hard to see so this will be interesting. John called and said that he won’t be home tonight. The kids came home around 1:00 and we watched some TV and had a snack. The teacher sent a note home and said that Ciara had a small seizure at schoool, but everything is alright. Right now she seems to be acting normal, not sleepy like she usually is so that is great. Around 3:00 I fed Ciara and put on some cartoons for Hunter. He is very angry this afternoon, I think it is because he didn’t get any sleep last night, but I can’t get him to take a nap so he will just be grumpy all night, lucky me. It is a good thing that John isn’t coming home tonight because he wouldn’t get any sleep with Hunter screaming and yelling like he is. I have given him Tylenol, food, juice, cartoons, and tried to lay him down, but nothing is making him happy. He and Ciara were both up until 4:30 this morning, ugh!
THURSDAY’S JOURNAL:
I got up at 6:30 this morning so I had to rush around to get Ciara fed, lunches made, and kids dressed before the school bus came. After they left for school I went to the grocery store, stopped by my moms, and then went to the school to drop off some cupcakes. I ran back home so that I could get a few things done before the kid came home at 12:45. The teacher sent a note home and said that Ciara went in the swimming pool today and loved it! After I got them settled in, my sister came over, she was going to Mason’s baseball game. It is too hot and I don’t feel like taking the kids out again today so we will have to miss this game. A few hours later John came home so I made dinner for him and Hunter and fed Ciara thru her tube. Just as John was finished eating he had to run out on a couple of fire calls so the kids and I watched TV and waited for him to come back. Hunter fell asleep around 10:00, but Ciara was up until midnight or so.
FRIDAY’S JOURNAL:
Hunter didn’t wake up until 9:30 this morning, when I made him get up. Ciara also slept all night long and was happy this morning and she woke up. I fed them both, dressed them and we were off to start our long day. First we went to Stockton to get John’s paycheck, then when we got back into town we went to the bank. My mom called and asked if I could take her to a few places so we were off again. When I dropped her off at home, the kids and I went to Sacramento. Hunter was laughing and having a great time and Ciara was doing great for having to sit in the car for hours. We went back home and grabbed a bite to eat, by this time it was around 5:00. Hunter and Ciara watched Barney and Hunter danced around. John isn’t coming home tonight so I was very happy when both kids were asleep by 10:00!
SATURDAY’S JOURNAL:
Hunter woke up around 5:30 this morning and was playing with Ciara while she slept, little twirp. He just loves to sit by her, sometimes on her, and play with her hands, it’s funny. I got him something to eat and he watched cartoons. When Ciara woke up I fed her and then got them both dressed. My mom and sister came over so that they could help me with the kids. We are going to Mason’s baseball game and I need help pushing two wheelchairs. It was hot today so I parked the kids under a tree and we watched the game. I can’t remember if I mentioned this before, but Mason made the All-Star team and today is their 3rd game. This game went very fast, it only lasted an hour. Our pitcher just kept striking the other team out and we won! So, they will play one more team on Monday and if we win, Mason’s team goes to the Championships, he is very excited! After the game we went to the store and then back home. I hooked Ciara up to her feeding pump and Hunter had some lunch and that was about it for a couple of hours. I decided to clean out the van so I vacuumed it and then cleaned the carpets, boy was it hot!!! When I finished I came inside and got a cold drink and sat in front of the fan. After I cooled down I did a little cleaning inside and then John came home from work. Ciara was laughing and smiling up a storm tonight, she is just too cute! I made dinner and we watched TV for a while. Hunter and Ciara were both asleep by 10:00, yippee!
We are planning on going to the MPS Society's Family Conference in November, but we were hoping to get some financial assistance from the MPS Society. We applied for a scholarship, but I got an email today and we didn't get it. So, now we have to raise the money ourselves and pray that we can make it. We are really looking forward to going and seeing our friends, old and new, and hearing what the doctors have to say and the lastest in research. If you can help out with a donation or a fundraiser, please visit our donation website by clicking here: MPS Conference Donations. You can also make a donation with a credit card or bank account by clicking the "DONATE" button towards the to of our journal. Thank you all very much! I would like to thank all of you for signing our guest book. I can't tell you how much it means to us to hear from you. It really helps to know that you are all out there and care about us!
Hugs To All, and ^^Angel^^ 
Tuesday, July 5, 2005 12:48 AM CDT
FRIDAY 5:45 PM JILLIAN UPDATE: I just talked to Michelle and she said that Jillian didn’t have to go to surgery today. Yesterday they did an MRI of her brain and the lesions were almost gone so she didn’t have to go in for brain surgery today! Of course the doctors can’t explain why, but who cares, Jilly is doing better. She is still having fevers, but when she was in surgery they noticed that she had the beginning of a pneumonia in her left lung so that may be the cause of the fevers. So, it seems that the antibiotics are slowly working and Jillian is getting better. She is on the surgery schedule for Tuesday to get a port put in, but if she continues to get better, she won’t need it and will be able to go home Tuesday on oral antibiotics. If she does need the port, she will be in the hospital for about another week on IV antibiotics before they let her go home. Michelle won’t be able to use a computer until Monday, but you can still visit Jillian’s website by clicking here: Jillian's Journal
SATURDAY’S JOURNAL:
John isn’t coming home tonight so the kids and I just stayed in today. When we all woke up I fed Hunter and hooked Ciara up to her pump. We watched some movies and just goofed around, it is hot here and I don’t feel like dragging the kids out into the heat. Hunter had a happy day today, as did Ciara. In the afternoon Ciara was sitting in the corner of the couch and her legs were stretched out in front of her and boy is that girl long! We didn’t do anything for the rest of the day and evening. Just had dinner, watched TC and Hunter went to bed around 10:30 but Ciara was up until 1:00 am.
SUNDAY’S JOURNAL:
When I got up at 8:00 this morning, Ciara was already awake but Hunter didn’t get up until 10:30. After I fed everybody we just goofed around. Ciara has been very alert and chatting today, it is so cute. John came home from work around 2:30 so I ran to the grocery store while he stayed with the kids. In the evening John went to his dad’s house so while he was gone I made dinner. Later in the evening John’s cousin Don came over for a while and the kids finally fell asleep around midnight.
MONDAY’S JOURNAL:
I got up at 9:00 this morning and before I could even feed the kids, Hunter had a diaper problem so I tossed him in the bath tub. When he was done I washed Ciara and then made breakfast. John isn’t working today and nobody is home so we are just taking it easy today. I did some cleaning while John worked outside. The kids had a great day today and Hunter was happy because he got to watch cartoons all afternoon. In the evening I made cheeseburgers and Hunter ate his while he and Ciara watched TV. By this time it was 8:30 so my sister came over to watch the fireworks with us. I usually buy a bunch of fireworks, but Mason isn’t with us this year and Ciara and Hunter could care less about them so I only bought some sparklers and a couple little fireworks to do. Our neighbors across the street always have a huge party and spend hundreds of dollars on their fireworks so we just sit out on our driveway and watch theirs. Hunter wasn’t happy at first, it always scares him, but he calmed down and did OK. Ciara was watching the flashing lights and sparks and having a good time. When it was over my sister went home and Hunter was asleep by midnight, Ciara was still up at 1:00.
TUESDAY’S JOURNAL:
I woke up at 6:00 this morning so I hooked Ciara up to the feeding pump and then made their lunches for school. After I got the kids dressed I put Ciara in her wheelchair but Hunter just didn’t want to wake up, he just kept smiling and stretching. He has been going stir crazy in this house for the past 4 days so he will be very happy to be at school today. John and I went to Wal-Mart to pick up a few things and then we went back home. He went to get his haircut and then off to Sacramento. The kids came home from school around 12:45 and they were both in a great mood. When I put my contact lens in my eye, there must have been something on my finger because it burned so bad and now my eye feels like it is raw and it hurts so bad, light makes it even worse. I can’t put my contact back in so I am not doing much this afternoon because I can’t see anything. I baked some chocolate chip cookies to take to the fire dept meeting this evening, but Hunter and John tested them to make sure they were edible, they were. When we got to the fire dept everybody was amazed at how well Ciara was doing, for more info on this check out our soy journal. We had chicken and hot dogs, Hunter ate two hot dogs, and then the kids and I went home and John stayed for the meeting. I was exhausted but I didn’t get any sleep tonight because Hunter and Ciara were both up until 4:30 am! I just wanted to let you all know that I am keeping a daily journal for the doctor in Poland that is doing the soy study for Sanfilippo. I will continue this journal, but I wanted to keep a separate journal for our soy study. You can follow that journal by clicking here: Bennett Children's Soy Journal
Hugs To All, and ^^Angel^^ 
Friday, July 1, 2005 1:52 AM CDT
SUNDAY 9:30 PM UPDATE: I just talked to Jillian’s dad and she made it out of surgery. They took a bunch of fluid off her brain, but they still don’t know what was causing this or the loss of platelets. I will let you know more tomorrow after I talk to Michelle. Keep up the prayers, they are working! I just put up some new pictures of Tommy and Jillian while they were at Duke!
SATURDAY 10:00 PM UPDATE: I still haven't heard anything about Jillian which worries me. I am hoping that I will hear something in the morning. Please continue to pray!
SATURDAY 1:00 PM UPDATE: I have some terrible news about our little friend Jillian. Most of you will remember that she ws transplanted with Tommy. I have been trying to get a hold of Michelle but I wasn't able to. Well, today I found out why. Jillian is in very serious condition right now and she is in surgery as I am typing this. They think she has an infection in her brain and she is having brain surgery. This is a very dangerous surgery because Jillian's platelet count is only one. The doctors told Michelle and Steve that Jilly's chances of making it were very slim. Please pray for Jillian, she needs them right now very badly. Please stay tuned for further updates. You can leave your prayers for Jillian at her journal by clicking here Jillian's Journal 
TUESDAY’S JOURNAL:
Last night Hunter’s nose started running and he seemed a little tired so I didn’t send him to school today, just Ciara went. Hunter and I stayed home, we didn’t go out anywhere. His nose is still running, but he seems happy and “normal” so that is a good thing. When Ciara came home she was fussing a little, but when I brought her inside and put her in the recliner, she was happy as could be. I was surprised when I saw the UPS truck stop at our house, they brought Ciara’s suction supplies, but no suction machine. Hopefully that will be coming soon. Around 2:00 I hooked Ciara up to her feeding pump and Hunter was watching cartoons. A little while later the Medical Supply truck pulled up and brought me the suction machine, yippee! I put it together but I haven’t had to use it so far. In the evening I made dinner, we watched some TV and went to bed around 11:30 or so.
WEDNESDAY’S JOURNAL:
After I sent the kids off to school I went out to get some errands done. Before I headed home I decided to stop by the school and see how everything was going. Ciara had just finished eating and Hunter was fussing so it was time to feed him. I gave him his lunch and when he was finished, we went outside. They had just put up a swimming pool so Hunter splashed around in the water and I put Ciara out in the sun, near a little tree so she was happy too. When I got home I relaxed for about half an hour, then the kids came home. Ciara was happy today when I got her off the bus and Hunter was too. It is getting hotter around here so I got Hunter some juice and also gave Ciara some to drink, she was happy with that idea. We watched some TV and then I got Hunter a snack and hooked Ciara up to her feeding pump. It has been very quiet around here without Mason around. He is at camp this week, but I know he is having a blast, but I still can’t wait for him to get home on Sunday! John didn’t home until late this evening so I made his dinner, we watched a little TV and then he had to go to bed because he has to get up early in the morning for work.
THURSDAY’S JOURNAL:
I woke up around 5:30 so I hooked Ciara up to the pump and then made their lunches for school and John’s for work. I had to turn on the air conditioner at 6:00 because it was already hot in the house so it is going to be miserably hot today. My sister called and said that she would pay me to do her laundry so around 9:00 I went out to the laundry mat and spent a few hours there. After I dropped it off for her I realized that it was noon and the kids were getting out of school. I decided that since it is 100 degrees today, I didn’t want them sitting on the hot bus for an hour so I stopped by the school to get them. They were just putting them on the bus so I put them in the car and we went home. We actually don’t have an air conditioner, we have a swamp cooler so when we got home, the house was still hot, but just a tad cooler then outside so I stripped the kids down and we just laid around for the rest of the day trying to stay cool. John isn’t coming home tonight so I just made Hunter a TV dinner so I wouldn’t have to heat up the oven and the house even more. After the kids fell asleep, I noticed that Ciara was moving herself around in her sleep. Usually she just lays in whatever position I put her in, but tonight she was wiggling herself around.
FRIDAY’S JOURNAL:
Ciara was awake most of the night, she wasn’t fussing or making any noise, she was just awake so I didn’t get more then 45 minutes sleep in a row. I got up around 7:30 and, of course, Ciara finally went to sleep around 7:45. Today I have a lot of things to get done so she didn’t get to sleep for very long. I fed both kids, got them dressed and around 9:30 we were on our way to Stockton, to get John’s paycheck, which is about an hour drive. We were about 15 minutes into the drive when I heard Ciara making noises and I thought that she was fussing. That is when I realized that I forgot to give her her Methadone this morning. I didn’t want to go back home again so I was going to see how she did. We have cut her down from 5cc 3 times a day to ½ cc 3 times a day. Tomorrow would have been the day to stop it completely so I guess we will see how she does without it today. On the trip back home she started making noises again but when I looked in the mirror to see what she was doing, she was laughing her little head off. Once in a while she will start laughing, but today it was a different laugh, it was a REAL laugh and it was so funny. I pulled over to the side of the road and watched her, it was so cute! When we got back into town I picked up my mom and took her to run her errands. I didn’t get back home until 2:30 so I got Hunter some juice and hooked Ciara up to her pump. It is 100 degrees again today and it isn’t any cooler in the house then it is outside, it is miserable! Ciara has continued to be happy and very vocal today. John came home around 5:00 and Hunter & Ciara were watching a Pooh Bear movie. There wasn’t anything good on TV tonight so John and I played a few games of Uno and then I had some dinner. Ciara was laying on the couch and all of a sudden she rolled herself onto her side. I sat her up and she twisted her hips and flipped herself around again. She hasn’t been able to do that in a long time so I am going to have to keep an eye on that girl!
PLEASE DON'T FORGET TO 
AND LET US KNOW YOU WERE HERE! I just wanted to let you all know that I am keeping a daily journal for the doctor in Poland that is doing the soy study for Sanfilippo. I will continue this journal, but I wanted to keep a separate journal for our soy study. You can follow that journal by clicking here: Bennett Children's Soy Journal
Hugs To All, and ^^Angel^^ 
Monday, June 27, 2005 11:07 AM CDT
SUNDAY’S JOURNAL:
I think I got up around 7:00 this morning and Ciara was already awake so I fed her. Hunter woke up around 8:30 so I got him some juice and something to eat and we watched a movie. Around 9:00 John had to run out on a wild land fire so he will probably be gone for a while. My mom called and wants me to take her to the grocery store so I am getting the kids dressed right now. After I put Hunter in the car I went back to get Ciara. I held her hands and made her walk out to the car and the same thing when we got back home, I held only one hand and she walked up to the house. I fed both kids and then we watched some TV. Hunter was in the bedroom watching TV but about 10 minutes later he was asleep. The nap didn’t last long, only about 20 minutes. John came home around 1:30, he had been out fighting fires all morning so I made his lunch and we just stayed in for a while. In the evening we headed out to K-Mart to look at their camping items, but they really didn’t have any so I will have to go to Wal-Mart next week and get what we will need for our up coming trip to Lake Shasta. When we got back into town we stopped by John’s cousin’s house, one cousin is moving in with his other cousin so we were going to see if they needed help, but they were done for the day. Hunter walked around their yard and Ciara even did some walking but then it was time to go. We took the kids to the playground and Hunter went down the slide and played with the wood chips. It was now time to go back home because John and I were starving! After we ate it was time to give the kids a bath . Today is National Chocolate Pudding Day so of course I gave Ciara some of her chocolate Boost pudding, she thought that was a wonderful idea! I was very surprised when Hunter ate some chocolate pudding, he usually doesn’t like things of that consistency but of course it was chocolate so he ate it.
MONDAY’S JOURNAL:
Hooray, the kids went to school today!!! The kids and I got up around 6:30 this morning so I had to feed Ciara very fast before the school bus came. After they left I ran to Sacramento to pick up Ciara’s prescription, she has a fungus under her fingernail, then I went back home. Since I ran out before I had breakfast, I was starving when I got home but I didn’t want to make something because the kids were coming home any minute so I waited for them. When they came home they both watched cartoons while I ate. That was about it for the afternoon, and since John isn’t coming home tonight, it’s just the kids and me for the rest of the evening. Yesterday when Hunter woke up he felt a little warm to me, but he was fine for the rest of the day. But tonight his nose started running so he is getting sick and I am praying that Ciara doesn’t get it too. 
I just noticed the July 13 is National French Fry Day so you all know what that means! My little red headed french fry addict will get fries all day long! I just wanted to let you all know that I am keeping a daily journal for the doctor in Poland that is doing the soy study for Sanfilippo. I will continue this journal, but I wanted to keep a separate journal for our soy study. You can follow that journal by clicking here: Bennett Children's Soy Journal
Hugs To All, and ^^Angel^^ 
Friday, June 24, 2005 0:22 AM CDT
THURSDAY’S JOURNAL:
Ciara was awfully gurgly this morning when she woke up, I had to keep checking her to make sure she wasn’t choking on her phlegm. I got up and made their lunches for school and John’s lunch for work and then he left. I got the kids dressed and was putting Ciara in her wheelchair when I saw the school bus outside so I had to hurry to get her strapped in. After the bus drove away with the kids I went back inside and realized that I forgot to give Ciara her poopy medicine, she hasn’t pooped in 2-3 days so I have a feeling today will be a bad day. A little while later I ran out to Wal-Mart to pick up some dog food, grabbed a bite to eat and went back home. When the school bus pulled up I heard Ciara crying, apparently she had a rough day at school. She needs to poop and she will feel better. I brought her inside and as soon as I put her in the recliner, she was happier. I gave her the medicine and within an hour she pooped, thank God! I know, you really don’t want to hear about this but it is what we deal with every day. Hunter keeps climbing into the recliner and sitting with her, he doesn’t want to sit anywhere else, it is so cute. Mason came over around 4:00, before his baseball practice. He had his uniform with him but it was dirty so we washed it and then I dropped him off at his practice and went back home. Ciara has had a really hard time with gagging and choking on her phlegm this afternoon. She was sitting in her Tumble Form chair so I gave her some juice to drink. She gagged every time I put some in her mouth and it just drooled out onto her shirt, she couldn’t swallow it. About 5 minutes later she coughed up this huge guck bubble, poor little thing. I called Kaiser to see where the suction machine was, they had told me it would be here by the middle of this week. Well, they didn’t have any idea what I was talking about, they haven’t received an order from the doctor. So, I called CCS and they said that they just got the paperwork together and they were sending it off to CCS and then they would contact me for more information. I asked her what I was supposed to do in the mean time because Ciara has been choking for the past couple of weeks and I HAVE to have that machine NOW. She said that she will call me tomorrow when she finds out how long it will be, but knowing Kaiser, it will be weeks. We ordered Ciara’s new wheelchair 6 months ago and we still don’t have it. I know that Kaiser finally approved payment for it in late April so I called the wheelchair company to see what was going on. They said that they are waiting for Medi-Cal to approve payment for the co-pay which is $650.00. So, if Medi-Cal won’t pay for it then we will have to and we don’t have that much money so I am praying that they will pay and pay soon because Ciara needs that wheelchair now, actually she needed it 6 months ago. I will wait to see what they say tomorrow and if I don’t have a machine in my house by Monday, Kaiser heads are going to roll! OK, on with our day. John came home around 6:30 so I made dinner while he worked out in the yard. Hunter ate his dinner and was very happy. Ciara fell asleep around 8:30, she looked very tired all afternoon. Around 9:30 or so, John went out on a vehicle accident for the fire department. Hunter was looking sleeping, but then Barney came on TV and he perked right up and was jumping around again. I think he will be asleep soon after Barney is over. There is no school tomorrow so we can all sleep in, yippee!!!
FRIDAY’S JOURNAL:
The kids don’t have school today so we got to sleep in, well sort of. I got up around 5:00 when John was going to work, I made his lunch and went back to sleep. The kids and I woke up around 8:30, but Ciara and Hunter still dozed off a little bit. When we were all awake I fed them, got them dressed and then headed out to Stockton to get John’s paycheck. When we got back home we went to Wal-Mart with my mom and went home again. John was already home when we got there so he stayed with the kids while I ran to the grocery store. I stopped by Mason’s house to make sure he didn’t need anything before I went home. He is leaving for summer camp so today will be the last day I will see him for a while. When I got back home it was time to give the dog a bath, she wasn’t to happy about that idea. After her bath, John took her outside and he did some yard work. Hunter has been in a fairly good mood today, but Ciara is doing much today then she was yesterday. She is gurgly at all and has been happy. In the evening I made dinner, tacos and burritos. Monday I had called and ordered Ciara's feeding supplies and as usual, today they came and Kaiser sent the wrong feeding tubes. We go thru this every month, they always send tubes that are too small and they never send the 60cc syringes. We always have to fight about it when I call them, I don't understand why it is so hard to just send out the right thing? Kaiser Stinks!!! Ciara and John went into the bedroom to watch some TV while Hunter and I watched in the living room, cartoons of course. John went back outside to finish up the back yard so I brought Ciara back out to the living room and she was just chatting away. Hunter was very angry tonight, crying and screaming. I tried to calm him down but nothing worked, except when I put in a Little Bear DVD, then he was dancing across the couch and having a great time. It is now after 10:00 but it doesn’t look like he will be asleep soon. Ciara is hooked up to her feeding pump, but she will probably be asleep within the hour. Today I cut her Methadone dose down to .5cc so by next weekend she will be completely off all drugs, yippee! I just wanted to let you all know that I am keeping a daily journal for the doctor in Poland that is doing the soy study for Sanfilippo. I will continue this journal, but I wanted to keep a separate journal for our soy study. You can follow that journal by clicking here: Bennett Children's Soy Journal
Hugs To All, and ^^Angel^^ 
Friday, June 24, 2005 0:22 AM CDT
THURSDAY’S JOURNAL:
Ciara was awfully gurgly this morning when she woke up, I had to keep checking her to make sure she wasn’t choking on her phlegm. I got up and made their lunches for school and John’s lunch for work and then he left. I got the kids dressed and was putting Ciara in her wheelchair when I saw the school bus outside so I had to hurry to get her strapped in. After the bus drove away with the kids I went back inside and realized that I forgot to give Ciara her poopy medicine, she hasn’t pooped in 2-3 days so I have a feeling today will be a bad day. A little while later I ran out to Wal-Mart to pick up some dog food, grabbed a bite to eat and went back home. When the school bus pulled up I heard Ciara crying, apparently she had a rough day at school. She needs to poop and she will feel better. I brought her inside and as soon as I put her in the recliner, she was happier. I gave her the medicine and within an hour she pooped, thank God! I know, you really don’t want to hear about this but it is what we deal with every day. Hunter keeps climbing into the recliner and sitting with her, he doesn’t want to sit anywhere else, it is so cute. Mason came over around 4:00, before his baseball practice. He had his uniform with him but it was dirty so we washed it and then I dropped him off at his practice and went back home. Ciara has had a really hard time with gagging and choking on her phlegm this afternoon. She was sitting in her Tumble Form chair so I gave her some juice to drink. She gagged every time I put some in her mouth and it just drooled out onto her shirt, she couldn’t swallow it. About 5 minutes later she coughed up this huge guck bubble, poor little thing. I called Kaiser to see where the suction machine was, they had told me it would be here by the middle of this week. Well, they didn’t have any idea what I was talking about, they haven’t received an order from the doctor. So, I called CCS and they said that they just got the paperwork together and they were sending it off to CCS and then they would contact me for more information. I asked her what I was supposed to do in the mean time because Ciara has been choking for the past couple of weeks and I HAVE to have that machine NOW. She said that she will call me tomorrow when she finds out how long it will be, but knowing Kaiser, it will be weeks. We ordered Ciara’s new wheelchair 6 months ago and we still don’t have it. I know that Kaiser finally approved payment for it in late April so I called the wheelchair company to see what was going on. They said that they are waiting for Medi-Cal to approve payment for the co-pay which is $650.00. So, if Medi-Cal won’t pay for it then we will have to and we don’t have that much money so I am praying that they will pay and pay soon because Ciara needs that wheelchair now, actually she needed it 6 months ago. I will wait to see what they say tomorrow and if I don’t have a machine in my house by Monday, Kaiser heads are going to roll! OK, on with our day. John came home around 6:30 so I made dinner while he worked out in the yard. Hunter ate his dinner and was very happy. Ciara fell asleep around 8:30, she looked very tired all afternoon. Around 9:30 or so, John went out on a vehicle accident for the fire department. Hunter was looking sleeping, but then Barney came on TV and he perked right up and was jumping around again. I think he will be asleep soon after Barney is over. There is no school tomorrow so we can all sleep in, yippee!!!
FRIDAY’S JOURNAL:
The kids don’t have school today so we got to sleep in, well sort of. I got up around 5:00 when John was going to work, I made his lunch and went back to sleep. The kids and I woke up around 8:30, but Ciara and Hunter still dozed off a little bit. When we were all awake I fed them, got them dressed and then headed out to Stockton to get John’s paycheck. When we got back home we went to Wal-Mart with my mom and went home again. John was already home when we got there so he stayed with the kids while I ran to the grocery store. I stopped by Mason’s house to make sure he didn’t need anything before I went home. He is leaving for summer camp so today will be the last day I will see him for a while. When I got back home it was time to give the dog a bath, she wasn’t to happy about that idea. After her bath, John took her outside and he did some yard work. Hunter has been in a fairly good mood today, but Ciara is doing much today then she was yesterday. She is gurgly at all and has been happy. In the evening I made dinner, tacos and burritos. Monday I had called and ordered Ciara's feeding supplies and as usual, today they came and Kaiser sent the wrong feeding tubes. We go thru this every month, they always send tubes that are too small and they never send the 60cc syringes. We always have to fight about it when I call them, I don't understand why it is so hard to just send out the right thing? Kaiser Stinks!!! Ciara and John went into the bedroom to watch some TV while Hunter and I watched in the living room, cartoons of course. John went back outside to finish up the back yard so I brought Ciara back out to the living room and she was just chatting away. Hunter was very angry tonight, crying and screaming. I tried to calm him down but nothing worked, except when I put in a Little Bear DVD, then he was dancing across the couch and having a great time. It is now after 10:00 but it doesn’t look like he will be asleep soon. Ciara is hooked up to her feeding pump, but she will probably be asleep within the hour. Today I cut her Methadone dose down to .5cc so by next weekend she will be completely off all drugs, yippee! I just wanted to let you all know that I am keeping a daily journal for the doctor in Poland that is doing the soy study for Sanfilippo. I will continue this journal, but I wanted to keep a separate journal for our soy study. You can follow that journal by clicking here: Bennett Children's Soy Journal
Hugs To All, and ^^Angel^^
Friday, June 24, 2005 0:16 AM CDT
THURSDAY’S JOURNAL:
Ciara was awfully gurgly this morning when she woke up, I had to keep checking her to make sure she wasn’t choking on her phlegm. I got up and made their lunches for school and John’s lunch for work and then he left. I got the kids dressed and was putting Ciara in her wheelchair when I saw the school bus outside so I had to hurry to get her strapped in. After the bus drove away with the kids I went back inside and realized that I forgot to give Ciara her poopy medicine, she hasn’t pooped in 2-3 days so I have a feeling today will be a bad day. A little while later I ran out to Wal-Mart to pick up some dog food, grabbed a bite to eat and went back home. When the school bus pulled up I heard Ciara crying, apparently she had a rough day at school. She needs to poop and she will feel better. I brought her inside and as soon as I put her in the recliner, she was happier. I gave her the medicine and within an hour she pooped, thank God! I know, you really don’t want to hear about this but it is what we deal with every day. Hunter keeps climbing into the recliner and sitting with her, he doesn’t want to sit anywhere else, it is so cute. Mason came over around 4:00, before his baseball practice. He had his uniform with him but it was dirty so we washed it and then I dropped him off at his practice and went back home. Ciara has had a really hard time with gagging and choking on her phlegm this afternoon. She was sitting in her Tumble Form chair so I gave her some juice to drink. She gagged every time I put some in her mouth and it just drooled out onto her shirt, she couldn’t swallow it. About 5 minutes later she coughed up this huge guck bubble, poor little thing. I called Kaiser to see where the suction machine was, they had told me it would be here by the middle of this week. Well, they didn’t have any idea what I was talking about, they haven’t received an order from the doctor. So, I called CCS and they said that they just got the paperwork together and they were sending it off to CCS and then they would contact me for more information. I asked her what I was supposed to do in the mean time because Ciara has been choking for the past couple of weeks and I HAVE to have that machine NOW. She said that she will call me tomorrow when she finds out how long it will be, but knowing Kaiser, it will be weeks. We ordered Ciara’s new wheelchair 6 months ago and we still don’t have it. I know that Kaiser finally approved payment for it in late April so I called the wheelchair company to see what was going on. They said that they are waiting for Medi-Cal to approve payment for the co-pay which is $650.00. So, if Medi-Cal won’t pay for it then we will have to and we don’t have that much money so I am praying that they will pay and pay soon because Ciara needs that wheelchair now, actually she needed it 6 months ago. I will wait to see what they say tomorrow and if I don’t have a machine in my house by Monday, Kaiser heads are going to roll! OK, on with our day. John came home around 6:30 so I made dinner while he worked out in the yard. Hunter ate his dinner and was very happy. Ciara fell asleep around 8:30, she looked very tired all afternoon. Around 9:30 or so, John went out on a vehicle accident for the fire department. Hunter was looking sleeping, but then Barney came on TV and he perked right up and was jumping around again. I think he will be asleep soon after Barney is over. There is no school tomorrow so we can all sleep in, yippee!!!
FRIDAY’S JOURNAL:
The kids don’t have school today so we got to sleep in, well sort of. I got up around 5:00 when John was going to work, I made his lunch and went back to sleep. The kids and I woke up around 8:30, but Ciara and Hunter still dozed off a little bit. When we were all awake I fed them, got them dressed and then headed out to Stockton to get John’s paycheck. When we got back home we went to Wal-Mart with my mom and went home again. John was already home when we got there so he stayed with the kids while I ran to the grocery store. I stopped by Mason’s house to make sure he didn’t need anything before I went home. He is leaving for summer camp so today will be the last day I will see him for a while. When I got back home it was time to give the dog a bath, she wasn’t to happy about that idea. After her bath, John took her outside and he did some yard work. Hunter has been in a fairly good mood today, but Ciara is doing much today then she was yesterday. She is gurgly at all and has been happy. In the evening I made dinner, tacos and burritos. Ciara and John went into the bedroom to watch some TV while Hunter and I watched in the living room, cartoons of course. John went back outside to finish up the back yard so I brought Ciara back out to the living room and she was just chatting away. Hunter was very angry tonight, crying and screaming. I tried to calm him down but nothing worked, except when I put in a Little Bear DVD, then he was dancing across the couch and having a great time. It is now after 10:00 but it doesn’t look like he will be asleep soon. Ciara is hooked up to her feeding pump, but she will probably be asleep within the hour. Today I cut her Methadone dose down to .5cc so by next weekend she will be completely off all drugs, yippee! I just wanted to let you all know that I am keeping a daily journal for the doctor in Poland that is doing the soy study for Sanfilippo. I will continue this journal, but I wanted to keep a separate journal for our soy study. You can follow that journal by clicking here:
Hugs To All, and ^^Angel^^
Wednesday, June 22, 2005 0:59 AM CDT
TUESDAY’S JOURNAL:
This morning we did our usual morning routine, tube feed Ciara, make school lunches, dress the kids and wait for the bus to come. After they left for school I did some laundry and ran to the grocery store, then went back home. When the school bus brought them home, Ciara was happy when they wheeled her off the bus. Hunter was in a better mood then he was yesterday, he was very grumpy yesterday. Later in the afternoon my sister and Mason came over for a while so we watched a video and then Mason had to leave for baseball practice. He is so excited, he made the All-Star team so he is very proud of himself, and so are we. In the evening I made dinner for myself and Hunter and hooked Ciara up to the feeding pump. John isn’t coming home tonight so I didn’t have to worry about cooking for him. Hunter and I watched TV and goofed around. Ciara has been very alert today and chatty. She looks so much better these days, she has some thighs and cheeks coming back so she is not as skinny as she was, she is just too cute! Hunter was getting grumpy so around 10:00 I put him to bed, but Ciara stayed up for a little while longer, but not much.
WEDNESDAY’S JOURNAL:
Hunter and Ciara both woke up about the same time I did this morning and they were both in a great mood. After I sent them off to school I just puttered around the house. Around 9:00 I heard John’s fire dept pager go off, there was a fire alarm at their school. Of course there wasn’t anybody there when I called, they were all outside, but I didn’t get a hold of them a little while later and everything was fine, it was just a fire drill. I had to run a couple of errands for my mom so I put the dog in the car with me and we went out. When I got home I grabbed a quick bite to eat before the kids came home from school. Ciara has been in a great mood since she came home, Hunter has been a little grumpy, nothing seems to make him happy these days. I think he might be bored, but who knows. I did some dishes and then around 5:00 I had to pick up Mason and take him to his baseball practice, then we went home. When John came home from work I made dinner, Hunter ate very well, and Ciara ate some Boost pudding. She has been very content tonight but Hunter has been grumpy, I think he is tired. He finally fell asleep around 11:00 and I think Ciara will be asleep soon too. I just wanted to let you know that Tommy will be mentioned in the US News & World Report, along with his picture, on July 11. It is a story about the Children's Miracle Network and Dr. Kurtzberg. I just wanted to let you all know that I am keeping a daily journal for the doctor in Poland that is doing the soy study for Sanfilippo. I will continue this journal, but I wanted to keep a separate journal for our soy study. You can follow that journal by clicking here: Bennett Children's Soy Journal
Hugs To All, and ^^Angel^^
Monday, June 20, 2005 0:39 AM CDT
I just wanted to let you all know that I am keeping a daily journal for the doctor in Poland that is doing the soy study for Sanfilippo. I will continue this journal, but I wanted to keep a separate journal for our soy study. You can follow that journal by clicking here: Bennett Children's Soy Journal
SUNDAY’S JOURNAL:
Ciara didn’t go to sleep until after 3:00 this morning which means that I didn’t go to sleep until after 3:00 this morning. For some reason I woke up at 5:00 but I went back to sleep and got up at 8:00 this morning. I got up and made John’s lunch for work, he isn’t coming home tonight. When the kids got up I fed them and they watched cartoons. We didn’t go anywhere all afternoon, just stayed inside. In the evening I made dinner and Hunter ate everything. I gave them a bath, which is so hard. Hunter is easy, but Ciara can’t sit up by herself and since John wasn’t home, it was very hard to scrub her down and not let her fall under the water. After they got out of the bathtub I noticed that Hunter had a cookie wrapper in his mouth. He is always putting paper in his mouth so when he sees me coming at him, he always opens his mouth and lets me take it. Well, after I took it out this time, I thought that I saw a little piece still in there, so I went back to fish it out and he bit my finger so hard that I started to cry. Now, I never cry, but he has never bitten me before and I can’t tell you how bad it hurt. After I calmed down, the kids went to sleep and I wasn’t far behind them.
MONDAY’S JOURNAL:
I woke up at 6:00 this morning and hooked Ciara up to the feeding pump. Today they start summer school so I made their lunches, got them dressed and Hunter watched Barney as we waited for the bus to come. After they left for school I got ready and stopped by the school. They don’t have Ciara and Hunter’s regular teacher or aides, only one person there knows my kids, so I just wanted to stop in to make sure everything was OK. When I left the school I stopped at the store and then went home. I made some lunch and waited for the kids to come home. John came home around 12:30, I wasn’t expecting him that early so I was surprised. His friends Kevin stopped by so we sat out on the porch and waited for the school bus. It finally got here around 1:00 so I brought the kids inside and got them some juice. That was about it for the rest of the afternoon. In the evening I made dinner and the kids and I watched some TV. Hunter has been very grumpy since he came home from school, not sure what his problem is. Around 10:00 tonight Ciara started laughing so hard, it was so funny. She was also moving all over the place, I haven’t seen her move around like that is a long time, it was so great. I had ordered the Soy pills on Friday and they came in the mail today so I started the kids on their new Soy program today. I will keep track of what changes I see in them. I am so excited about this new treatment for Sanfilippo. The doctor is Poland is now actually doing a study on children because it worked so well on the lab rats. I talked to the kids’ doctor and Dr. Kurtzberg at Duke and they both said that it would be alright to start them on the soy so I am hoping to see some great changes in them. Last night Hunter bit my finger and the tip of my finger is still kind of numb. I am wondering if he did some damage to it, little rat. It is now 10:30 and I am hoping that the kids will go to sleep soon, I am exhausted!
I would like to thank all of you who sent us the sugar-free grape Kool-Aid last year. We are just now on the last box so they lasted a long time! I still can't find any around here so keep your eyes open and let me know if you find any in your stores!
Hugs To All, and ^^Angel^^
Saturday, June 18, 2005 11:57 PM CDT
FRIDAY’S JOURNAL:
I don’t know why, but I woke up at 5:00 this morning and couldn’t get back to sleep. Ciara was also awake, which surprised me, so we watched some TV and just lazed about. When Hunter woke up I fed him and hooked Ciara up to her pump. Around 9:30 I got them dressed and we headed out to get our errands done. We went to Stockton to get John’s paycheck, stopped at the bank, and then did a few things for my mom and went back home. It wasn’t raining today, just cloudy and cool, so we just stayed home for the rest of the day. Ciara is having a good day today, not really fussing at all, so that is wonderful. John came home in the evening so I made dinner and we watched TV and went to bed early, we are still exhausted from out trip to Yosemite!
SATURDAY’S JOURNAL:
We all woke up around 8:00 this morning so I immediately hooked Ciara up to her feeding pump and got Hunter some juice and something to eat and they watched cartoons. After a while we got the kids dressed and around noon we headed out to Sacramento. John’s computer died yesterday so we had to go get a new power supply for it. We stopped for lunch and then walked around downtown Sacramento which made Hunter very happy. He was laughing and dancing as we walked around. It was now time to head back home, Ciara was getting fussy. When we got home I fed her again and we worked on the computers for a little bit. Since John won’t be here tomorrow, he is doing an overnight haul tomorrow, we decided to do Father’s Day today. I called John’s brother and he met us at Baskin Robbins Ice Cream with his dad. We sat outside and ate our ice cream and talked for about an hour, but Ciara was fussing again so it was time to go. I ran into the grocery store to get some wipeys and then we went home. It is now 9:30 and Ciara is still fussing a little and Hunter is jumping on the couch and watching BooBah. I have a feeling that he will be asleep by 10:00, he looks like he is tiring out.
Daddy, I Love You 
Daddy, I love you
For all that you do.
I'll kiss you and hug you
'Cause you love me, too.
You feed me and need me
To teach you to play,
So smile 'cause I love you
On this Father's Day.
Hugs To All, and ^^Angel^^ 
Thursday, June 16, 2005 11:55 PM CDT
WEDNESDAY’S JOURNAL:
Ciara woke me up at 4:00 this morning when I heard her having a seizure. It wasn’t a very big one and she went back to sleep when it was over. I woke up again at 6:00 and fed Ciara and then got the kids dressed. We are going to Yosemite today so we left the house around 7:00 but we had to take our dog up to John’s dad’s house and then we were off to Yosemite. Growing up, we went to Yosemite twice a year, but I haven’t been there is a long time so I was excited about going back and seeing the places and we used to go. On the way up there we stopped at a gas station so I ran in to get some batteries for the camera, we borrow one from John’s brother, and some OFF because they said that the mosquitoes are really bad up there and I really don’t want us to get the West Nile virus. When I was looking up some things on Yosemite’s website about handicap access I saw that they have a Golden Access Passport. This passport is free to disabled people and it is good for their lifetime. So we won’t have to pay the $20 fee to get in to Yosemite and it is good for all Federal Entrance Fee Areas for free and 50 ff of camping fees and cave tours. Agencies administering Federal recreation areas where the Golden Access Passport is honored are Bureau of Land Management, Fish and Wildlife Services, Bureau of Reclamation, National Park Service, Forest Service, and Tennessee Valley Authority. This Passport is good for all across the country so for those MPS families out there, go get one, it’s worth it! We are going camping at Lake Shasta next month with several MPS families and it will only cost us $27 for the weekend because we have this passport. OK, on with our trip, when we got to Yosemite, our first stop was Bridal Veil Falls. We walked most of the way up to the falls, but it is so wet that we didn’t take the kids all the way, I didn’t want Ciara to get soaking wet and cold. Before we put Ciara back into the car, I tube fed her while she was in her wheelchair, then we were off to Curry Village. Growing up we stayed at Curry Village a lot so I was looking forward to going there again. When we got there it was around 2:00 so we had some lunch and looked around. The buffet dinner didn’t start until 5:30 so after we ate our pizza we decided to drive around to some more waterfalls and trails and then come back for dinner before we headed home. The other good thing about Yosemite is that they have a Temporary Access Placard which will let disabled vehicles enter places that others can’t so we were able to drive right up to falls and lakes that other would have to walk a mile or so to get to. We drove right up to Mirror Lake and walked around. Hunter absolutely hates water so I was surprised when he walked up to the lake with me and tapped his toes in the water. He really had a great time today but every time we took out the camera, he would start crying so it looks like he hated every thing, but he really had a lot of fun. After Mirror Lake we drove over to Yosemite Falls and as we were walking to the falls we ran into Ciara and Hunter’s teacher from the beginning of the school year. Talk about a small world, it was funny. As we were talking, the mosquitoes started biting so we ran back to the car to get the Off spray and sprayed all of us down very well. Yosemite is in the process of making the waterfalls and other attractions handicap accessible so I was pleasantly surprised that we were able to walk right up to the bottom of the waterfalls. As we were walking back we ran into a couple who was training an assistance dog. They were from Scottsdale and that is where this years MPS conference will be so maybe we can visit with them when/if we can go to the conference. By this time it was around 5:30 so we headed back to Curry Village for the buffet dinner. Hunter are so much that I am surprised he didn’t explode! Ciara was starting to fuss but she had been sitting since 7:00 this morning and that is a long time for her so after I ate a little bit I held her on my lap so that she didn’t have any pressure on her tailbone because she is close to getting a bed sore there. After dinner it was around 7:00 so we headed home. We stopped once to get gas and let Ciara stretch out her legs. We finally got home around 9:30 and Ciara was very happy to be in her recliner so I fed her and every body was asleep by 10:30.
THURSDAY’S JOURNAL:
I woke up around 6:00 this morning when John got up to go to work. Ciara was awake too, I was surprised because she had such a big day yesterday that I thought she was sleep in. After I made John’s lunch, he left for work and I watched a little TV. When Hunter woke up I got him some soy milk and a bite to eat and then around noon we headed out. I picked up my mom and took her to run some errands. I stopped at the grocery store and picked up some soy yogurt and I also found some soy flax waffles that have a lot of soy isoflavons so I got those too. When I dropped her off at her house I drove up to John’s dad’s house to pick up our dog. She was very happy when she saw me. Every time we leave her there she thinks we are never coming back because she stayed there for a long time while we were at Duke. We went home and we got there just in time because it started raining. I was very happy it started raining today instead of yesterday when we were at Yosemite. My sister stopped by on her way to work but that was about it for the rest of the day. John isn’t coming home tonight and it is raining so we just stayed in. In our last journal I mentioned the latest Sanfilippo research in Poland concerning soy. The researcher was approved to start testing on humans so that is exciting! There are several of us Sanfilippo moms that will be doing our own "trial" and sending samples and info to the doctor in Poland for his study so I will keep you all updated when new info arrives. I actually got to take a little nap in the evening, that never happens. In the evening I fed the kids and I am hoping they will be asleep soon. I JUST PUT UP NEW PICTURES FROM OUR TRIP TO YOSEMITE SO CHECK THEM OUT!
Hugs To All, and ^^Angel^^
Tuesday, June 14, 2005 1:36 AM CDT
MONDAY’S JOURNAL:
I got up this morning when John went to work so I could make his lunch, he isn’t coming home tonight. The kids slept in again so that was great because I got to eat in peace. When they woke up I fed them and then they watched cartoons and Hunter was so happy! Mason called and asked me to give him a ride someplace so I took him. He has poison oak on his arm so I brought him back to my house and fixed him up and then dropped him off at his friend’s house. Later in the afternoon I had to take my mom to the grocery store and Hunter didn’t want to walk by the time we got thru the store, but he did a great job. Ciara was happy to get out of the house and she was talking to me. When I got home I hooked Ciara up to the feeding pump and got Hunter something to eat and we watched a little TV. Around 3:30 I heard some loud banging outside and guess what, they are FINALLY fixing the sink hole in my driveway! Thank God because it has been there for about a month now! In the evening I fed both kids and then later on I hooked Ciara up to the feeding pump. This is when it happened, I over fed Ciara. I got distracted and forgot to stop the pump and she got almost twice the amount she should have. I heard her crying and kicking her legs and then it dawned on me, oh crap! So I grabbed a bowl and a big syringe and started pulling the formula out of her stomach and then she was happy. I am kind of surprised that this is the first time I have done this. I wish the pump had a setting to where it just stopped when it pumped the right amount, but it doesn’t. I remember when Hunter had his feeding tube, he was a year old, and I overfilled him. I know I over filled him because as I was pouring it into his tube, it was coming out of his mouth. But since Ciara has a Nissen Wrap, that means that nothing from her stomach came come back up, she couldn’t throw up and she was like a water balloon. OK, on with the evening. Hunter and I played for a while and both kids went to bed around 11:00. OK, that didn’t last long. They were both up again around midnight, Ciara was laughing and Hunter was up until the early morning hours just watching TV.
TUESDAY’S JOURNAL:
HAPPY FLAG DAY!!!
Ciara and I woke up around 8:30 this morning but Hunter was finally sleeping, so I just left him alone. He finally woke up around 9:30 so I got him something to eat and he was happy. It is so hot here, as soon as I woke up this morning I had to turn on the air conditioner. Yesterday it was 95, not sure what it is going to be today. Later on in the morning I gave the kids a bath, which was very brave of me! I always wait until John is home to give Ciara a bath because I can’t do it by myself. She can’t sit up on her own and I can’t hold her up and wash her at the same time, let alone try to get her out of the tub with my bad back. Today she was like a Weeble in the tub, rocking and rolling all over the place, shew that was tough! After their bathes they watched cartoons. Around 1:00 Ciara started crying, she has been very fussy the past several days, but I am not sure what her problem is. I called Mason to see if he needed anything and he said he was hungry so I brought him some lunch and went back home. Hunter has been very happy today, just relaxing and watching cartoons. Around 3:00 I picked up Mason and dropped him off at my sister’s house so he could play with his friends. My sister and I took the kids to Wal-Mart so that I could get a few things for our trip tomorrow. John and I are taking the kids to Yosemite for the day so that should be fun! Of course I don’t have a camera so I don’t know if I will have any pictures to share with you all, but I will try. On the way back we stopped and got Hunter some McDonalds, dropped my sister off and then went home. Hunter ate but Ciara is still fussy so I gave her some laxative, maybe that is her problem. We didn’t do much for the rest of the evening. When I changed Ciara’s diaper I noticed that she was getting a bed sore on her tailbone, it’s not a sore yet, but getting very close, so I brought her into the bedroom and put her on her side, so she watched TV and then fell asleep for about an hour. I am so careful with positioning her all day long, I move her from the recliner to her Tumble Form chair, to the couch and I have her laying in all sorts of positions because I don’t want her to get any sores. I know that she will be sitting a lot tomorrow on our trip so I am hoping she will do OK. Patty called me to ask if we were OK because she heard that we had a major earthquake in Northern Calif. We are fine, it wasn't very close to us, but patty heard it 45 minutes before it was on our news and she lives in Maryland, now what's up with that? Hunter fell asleep around 9:45 and Ciara was up and talking until 11:30. John didn’t get home until 10:30 or so, he had a long day. It is now 11:45 and everybody is asleep.
I just wanted to let you all know that my email address will be changing soon. I will change it here in our journal (down at the bottom), but I just wanted to let you all know. I am not exactly sure when, but it will be in about a week. SANFILIPPO RESEARCH UPDATE: I just wanted to let you all know about some research that has been going on in Poland and possible soon in the UK concerning Sanfilippo. It is about Genistein which is found in soy. Basically, Genistein acts as a substrate reduction therapy in the case of MPS. (He's working on MPS1,2 ,3A and 3B.) The body normally produces far too much Heparin sulphate for it's needs so it's the excess that is not being broken down in our children but is stored in the lysosomes of every cell. If we can limit the production of Heparin sulphate to the amount the body needs, the storage will stop, possibly even reduce. If it just stops, the brain for example takes about 7 years I believe, to completely renew the cells ie. for them to become completely normal. Ultimately the aim is to get the exact extract of Einstein in the right quantities to be able to stop the storage of Heparan sulphate altogether.
(This info is from the doctor in Poland) Regarding our work on Genistein as a potential drug for treatment of MPS, we have now new results, which indicate that in cells (fibroblasts) from MPS patients, which were cultured in vitro and treated with Genistein, levels of mucopolysaccharides not only was not increased, but decreased significantly. We assume that this could be the effect of cell divisions (mucopolysaccharides were diluted when their synthesis was impaired) and residual activity of a deficient enzyme. These results encouraged us to initiate experiments on animal model - we have MPS IIIB mouse available. I hope we will start experiments in a few weeks. Obviously, from the point of view of patients the problem is time. Even considering that animal experiments are successful, they must be conducted at least for a year or so, and then clinical trials are necessary. Genistein is not available as a drug now. However, what we found in our cell culture experiments is that soy extracts, enriched in isoflavones (not soy proteins !!), work also quite well. Such extracts are commercially available (at least in Poland, where I live) in pharmacy shops. Thus, one could perhaps try to use these extracts for treatment of MPS patients. I would not expect any serious side effects caused by these natural products, but obviously nobody can be sure. Considering concentrations that work in our in vitro experiments, similar Genistein (soy isoflavone) concentrations could be potentially achieved in a body when administered at the dose of 5 mg per 1 kg of body weight. Well, this perhaps (theoretically) will not be as efficient as pure Genistein could be, but at the moment nobody can propose anything more - further studies and clinical trials are necessary to test the pure compound. One more interesting thing is a recent discovery that Genistein can cross the brain-blood barrier in rat. We suspect this previously but did not have a proof. Now we know that the efficiency of crossing is about 10 percent but this still should be sufficient to observe effects on synthesis of mucopolysaccharides in neurons. This gives a hope that Genistein might be efficient in treatment of not only somatic but also neurological symptoms of MPS.
Best Regards,
Grzegorz
PLEASE talk to your doctor before you make any changes to your child’s meds and diet. But, I your doctor says that it is alright, here is a link to what we are talking about: Life Extension Website but you can get is cheaper here: Ultra Soy Website but only take one pill per day!
Hugs To All, and ^^Angel^^ 
Monday, June 13, 2005 10:42 AM CDT
THURSDAY’S JOURNAL:
I woke up around 6:00 this morning so I hooked Ciara up to the feeding pump and then made their lunch for school. I got them dressed and Hunter watched some Barney while we waited for the bus to come. After they left I had some breakfast and then ran out to the grocery store. On the way home I stopped by the school to make sure everything was alright and then I went home. I talked to some friends on the phone and then the kids came home at 12:30. I had forgotten that it was a half day at school today! My sister and Mason came over for a little while. My sister had to leave for work but Mason wanted to stay and play on the computer for a while. His best friend is graduating from the 8th grade today so around 6:00 I dropped him off at the school so he could watch the graduation. My sister said that she would get us a pizza where she works so I stopped by there on the way home. Hunter ate 2 pieces of pizza while I made John’s dinner. We had to run out to Wal-Mart for something, but I can’t remember what it was. When we got home the kids watched some TV and then Hunter fell asleep around 10:00 but Ciara was still up at midnight, just talking and laughing.
FRIDAY’S JOURNAL:
Today is the last day of school so after I sent the kids off on the bus, I ran to the grocery store to pick up some cupcakes. I dropped them off at school for their party and then went home. John was already home from work when I got home so we ran to the grocery store and then I made him some breakfast when we got home. The kids came home from school around 12:30 so I hooked Ciara up to her feeding pump and got Hunter some juice and they watched some cartoons. Mason walked over after school which surprised me, I didn’t know he was coming over. He goofed around for a while and then he showed me his awards he got at school. He got Honor Roll and Perfect Attendance so that was great! I took him to his dad’s house around 4:00 so that he could get ready for his last baseball game today. Around 5:00 we put the kids in the car and headed out to the park to watch Mason’s game but when we got there, nobody else was there. I called Mason’s house and Mason said that the game didn’t start until 6:30. So, since we had the tennis rackets and balls in the back of the van, we played a little tennis until the game started. It was so hot outside so when we were finished, we sat in the van with the air conditioner for a few minutes. That is when John’s fire department pager went off for a vehicle accident so he left. I t got the kids out of the car and we sat by the dugout so we could see Mason, he is the catcher. John got back after the game started, but just in time to see Mason up at bat. Ciara was getting a little fussy so John walked around the park with her while Hunter munched on his potato wedges. We left the game half way thru and went home. Ciara has been chatting a lot today, she is too cute. I made dinner, we watched some TV and then went to bed.
SATURDAY’S JOURNAL:
John went to work early this morning so I made his lunch for him before he left. The kids slept in this morning, I think they were very happy about that, especially Hunter. When they woke up I made them some breakfast and they watched some cartoons. Hunter and I played around, he is in such a funny mood today, just laughing and playing. Ciara slept on and off for the rest of the morning. John came back home to get a change of clothes before he headed out to the desert so he won’t be coming home tonight. Around noon I got them dressed and we headed out to Stockton to pick up John’s paycheck. I ran into Target to get a few things and then we went home. I made a little something to eat and then we watched some TV. Ciara has been a little fussy today but I don’t know why. I cut back her Methadone this morning so I am wondering if it is a withdrawal thing or something else. One more week and she will be completely off of the Methadone, thank God, so she won’t be on any meds at all. It has been very boring today, we just stayed inside and watched TV. In the evening I made dinner, Hunter was still being silly and laughing. Every time I got near him, he would smack me and laugh. I was surprised when both kids were asleep by 10:30.
SUNDAY’S JOURNAL:
The kids slept in again this morning so I ate my breakfast before they got up. Once they woke up I fed them and they watched cartoons. Ciara is a little fussy again today, I am really wondering if it is withdrawals. Hunter was very playful again today and laughing all the time. It is hot outside so I don’t want to take the kids out, I am just not up to it, so we stayed inside and watched TV. John came home from work in the evening and he went out back to pick some plums. Other then jam, what can we do with all of these plums? Hunter was doing something so cute and I grabbed my camera to take a picture, but my camera has finally had it, it is broken. So, I won’t have any new pictures for you all to see until I can save enough money to buy a new camera. Again, we didn’t do much this evening and the kids were asleep by 10:00.
Hugs To All, and ^^Angel^^
Wednesday, June 8, 2005 0:52 AM CDT
TUESDAY’S JOURNAL:
The kids were very happy this morning when they woke up and headed off to school. After breakfast I did a little cleaning and went to the post office. Not much to do today so I chatted with some of my MPS friends on the computer. Thank God for the internet, I don’t know what all of us MPS families would do without it! It is so nice to know that there is somebody out there that knows what we are going thru and understands and will laugh, cry, and scream with us at any time. I just wanted to say thank you to all of my friends, you are all angels! OK, on with my day, I don’t know when John will be home so I popped a meatloaf in the oven and made spaghetti so at least I won’t have to cook for a couple of days.
The kids came home from school around 2:30 and came inside and watched cartoons. You know, I wish I had TiVo because I am so tired of watching cartoons! Mason has a baseball game today,
but it is about a 40 minute drive to the game and I just don’t feel like taking the kids up there today. John came home from work around 5:30 so I got his dinner and then we had to go to the fire department dinner/meeting at 6:00.
Hunter was very happy that they had pizza 
and Ciara just sat and watched everybody. After dinner the Ciara and Hunter ate some cake, Ciara was very happy with the cake. I know that he will kill me for telling everybody this, but I think it is wonderful. Our fire chief, Ken Mackey, was just voted Lodi’s Firefighter Of The Year! Below is a picture of Kenny and Ciara. The kids and I left the meeting at 7:00 but John stayed for the rest of it and then worked on their new computer for a while so he didn’t get home until 9:30. Hunter had just fallen asleep when he came home and I had just hooked Ciara up to her feeding pump. While her pump was running, Ciara was talking away, it was so cute. I think she finally fell asleep around 11:00 and I wasn’t far after her.
WEDNESDAY’S JOURNAL:
I got up at 4:00 this morning to make John’s lunch before he went to work, then I went back to sleep. My alarm went off at 5:45, but I turned it off and fell asleep again.
I finally got up around 6:30 so I had to rush to get Ciara fed, lunches made, and kids dressed, but we made it. Of course it is raining today because today the city is supposed to come and fix the sink hole in my driveway, it figures. After the kids left for school I made some breakfast and watched TV. I probably won’t go out today since it is raining. Around 1:00 I went to the post office and then went back home, it was still raining.
The school nurse called and said that Ciara’s feeding tube was infected and she was just having a seizure, but she was doing OK. I called Ciara’s GI doctor and made an appointment for later in the afternoon. The kids came home from school at 2:30 so I brought them inside, fed Ciara very fast, and then put them in the car and we were off to Sacramento.
As we were walking up to the office,
Hunter was marching along, having a great time and smacking everybody he passed, on the behind.
When we got up to the office, everybody was surprised at how well Ciara looks now, they were very happy. We weighed her and she has gained 10 pounds! They looked at Ciara’s feeding tube and it is not infected, just granulation which is normal. I had been putting a special cream on it which helped shrink it, but it wasn’t going completely away. They put some silver nitrate on it and hopefully it will be gone in a few days. They also gave me a prescription for an anti-fungal medication because Ciara has an infection under a few of her fingernails. We stopped by the pharmacy to pick that up and then headed home. I did stop and get Hunter some french fries and when we pulled into the drive-thru, he just started laughing, he knew what was coming. When we got home I fed everybody and we watched some TV. 
John isn’t coming home tonight so around 10:30 I put Hunter in bed and hopefully Ciara will be asleep soon too.
Hugs To All, and ^^Angel^^ 
Tuesday, June 7, 2005 0:36 AM CDT
WEDNESDAY 12:45 PM UPDATE: The school nurse just called and said that Ciara was about 4 minutes into a seizure, but she was just coming out of it. Last night at the fire dept I looked at Ciara and her mouth was small, like an O, and I just had a feeling that one might be coming. The nurse also said that she thinks Ciara's feeding tube area is infected so when she comes home I will see if I can get her into the doctor. Check back later for an update!
SATURDAY’S JOURNAL:
When I woke up at 8:00 this morning, Hunter was sitting in the middle of the living room floor watching cartoons. Ciara woke up a little bit later so I fed them and John went to work. Ciara sat in her Tumble Form chair for 5 hours today without screaming or fussing. Normally she couldn’t sit in there for more then 30 minutes so that tells you how well she is doing these days. Since John is at work, I didn’t feel like taking the kids out to the store so we just stayed in. In the afternoon Ciara was just chattering away, she has been “talking” every day and it is so cute! John came home from work around 5:30 but he didn’t stay long. He had to go over and help our friends with their new computer. While he was gone I talked to my friend Ellen, most of you know her, her son Andrew has Sanfilippo and was the 2nd child transplanted. When I called her, Simon answered the phone and I thought it was her husband Brian. I haven’t seen or talked to Simon since we were at Duke so it has been about 2 years and boy, he sounds like a man now! The kids were getting a little bored so I put them in the car and we drove over to my mom’s to drop off some dinner for her, then we went back home. By that time it was around 7:00 so I made dinner and we watched some TV. John came home around 9:30 so I fed him and then everybody went to bed.
SUNDAY’S JOURNAL:
I got up at 5:00 this morning so I messed around on the computer for a while. When the kids woke up I fed them and they watched cartoons for a while. In the afternoon I put Ciara in the bedroom on the bed and she took a nap. Hunter just sat very nicely on the couch and watched his favorite cartoon, “Maggie & The Ferocious Beast.” Around 2:00 John went out on a call for the fire department so I got on-line and talked to Shaun, her son also has MPS. On July 16 Shaun in driving down from Oregon and we are meeting at Lake Shasta. My friend Margie is coming with her daughters, they have Sanfilippo, and the Whitecottons are coming, their son has Hunter’s. It is going to be so much fun! It will actually be the first time we have gone camping with the kids so it should be VERY interesting! So, I had just finished feeding Ciara some mashed potatoes and gravy when my car alarm went off. I went outside but there wasn’t anything around that would have caused it to go off. John came out laughing, the dog had sat on his keys and hit the alarm button. Ciara has been very happy today, I have just been moving her from the recliner, to the bed, to the Tumble Form chair and she just is happy as can be. Hunter got a bloody nose this afternoon, I think he was picking it too much. After dinner Hunter fell asleep so I wasn’t going to wake him up for a bath so I just washed Ciara. I got her dressed, braided her hair while it was still wet, hooked her up to the pump and she went to sleep.
MONDAY’S JOURNAL:
I got up around 6:00 this morning so I hooked Ciara up to her feeding pump and made their lunches for school and John’s lunch for work. Hunter woke up with a big smile on his face, he is in a very good mood this morning. I got Ciara dressed and put some medicine on her feed tube site. She has what they call, granulation around the peg which is normal but it looks gross. The kids watched Barney as we waited for the bus to come. The transportation dept called around 7:30 and said that they were having bus problems so I will take the kids to school. Hunter was very happy when we got to school, he ran down the hall to the classroom. I went back home and did a little house cleaning and waited for them to come home. Last week I mentioned that we had a sink hole in the street, right in front of our driveway. It has been there for 2 weeks now, apparently there used to be a well there and it just gave way. A week ago the city people told me that they would have it fixed the next day. Well, the next morning they dug the hole even bigger and filled it with rocks. So, now the hole it 10 times the size it used to be which REALLY makes it hard to get in and out of the driveway, but they didn’t put any asphalt down so there is still a hole with safety tape around it. The school bus can’t even stop at our house for the kids, it is insane. I called the city to see what the heck was going on, but I just got a machine so hopefully somebody will call me back. The kids came home at 2:30 so I got them some juice and they are relaxing. My sister stopped by around 4:30 and Hunter was so excited to see her. They played for a little bit and then she went home. Patty called so we talked for a while and then I went back to doing dishes. When John came home from work I made dinner, which made Hunter very happy. He waved his food around and laughed and then coughed up a big chunk onto my leg, oh well. Ciara hasn’t fussed at all today, sometimes I forget she is here because she is just so content that she doesn’t make a peep. Again, that is a HUGE difference from the 24/7 crying that she has done for 2 years, WAY TO GO CIARA! It is now 10:30 and the kids are watching BooBah and I am hoping they go to sleep soon.
Hugs To All, and ^^Angel^^ 
Friday, June 3, 2005 10:23 AM CDT
WEDNESDAY’S JOURNAL:
Hunter was already awake and watching cartoons when I woke up so I got him something to eat and then hooked Ciara up to her feeding pump. I made their lunches and got them dressed and they were off to school. After I had some breakfast I had to run out and do a few things for my mom, then I washed my car and went home. I talked to my friend Shaun for a little bit, then the kids came home from school. I got them a snack and some juice and then Mason came over. John isn’t working today so the three of us played Nintendo, Mason thought it was wonderful because he beat me. John had to go on a call for the fire department so I took Mason home around 4:30 and then stopped at the fire department for a few minutes, then went home. Tomorrow Mason is going on a school trip to Water World and he needs a new swim suit so I left the kids at home with John and ran to Wal-Mart. I dropped it off at Mason’s house and then went home. He is so excited about tomorrow, it is a trip for honor roll students. I made dinner and the kids were asleep by 11:00
THURSDAY’S JOURNAL:
Ciara woke me up at 4:00 this morning because she was crying. I aired out her tummy and got a lot of air out, then she went back to sleep. She woke up at 6:00, smiling and laughing, she’s so funny. I got the kids dressed and off to school, then I ran to the grocery store. I stopped at their school to drop off some things for Ciara to eat and then went home. Their teacher called me around 12:30 and said that Ciara had a seizure, but she was doing fine. She said it lasted about 4 minutes total but I didn’t need to come get her. This was her first seizure at school this year, honestly I am surprised she hasn’t had any there before. Usually she has several at school and at least once an ambulance is called, so she must be doing pretty good. The school bus brought the kids home around 2:30 and John came home around 4:30. I was surprised that Mason came over around 5:30, I wasn’t expecting him. Today was his trip to Water World and when they dropped him off at school, he walked over to our house, even though his house his closer. He looked so tired, and sunburned, but he had a blast. John’s cousin called and wanted to look at something we have in storage so we took Mason over to his dad’s house and then went to our storage. We went back home, had dinner and the kids were asleep by 10:00.
FRIDAY’S JOURNAL:
Hunter woke me up at 4:00 this morning when he was sitting on me and watching cartoons. I finally got up at 5:00 and hooked Ciara up to the feeding pump and then around 6:15, Hunter went back to sleep. He wasn’t really grumpy when I had to wake him up to get him dressed and off to school. Of course Barney was on and that helped. Ciara woke up smiling again this morning. I can’t tell you how happy I am to see smiles in the morning instead of constant crying all day and all night. When the bus came I took them outside and they put Hunter in his seat and we tried to get Ciara on the lift, but the lift wouldn’t work. We had to wait for another bus to come, but eventually they got her on and they went to school. I grabbed a quick snack and then I had to go to Stockton to get John’s paycheck and then pick up my mom and take her to run her errands. I got back home around 1:30 so I chatted with several MPS moms until the kids came home at 2:20. I put Ciara in her recliner and she cried and fussed so I moved her over to the couch and she was happy, picky little thing. Hunter just sat on the couch and watched TV, I think he is tired because he woke up so early this morning. My sister came over on her way to work to pick up Mason’s drinks for his baseball game today. Since John isn’t coming home tonight, I am not going to the game, I can’t push both wheelchairs by myself, oh well. In the evening I made dinner and we watched a couple of movies. Hunter curled up on the couch around 9:30 and he was asleep in a couple of minutes. It is 10:00 now and Ciara is still awake, but I don’t think it will be long before she is sleeping too.
Hugs To All, and ^^Angel^^ 
Tuesday, May 31, 2005 1:44 AM CDT
"Tears are like rain.
They Loosen up our soil so we can grow in different directions"
SUNDAY’S JOURNAL:
Since I didn’t get to sleep until around 2:30 this morning, I was very happy that I got to sleep in until 9:30. When I woke up, the kids were already awake and watching cartoons. We didn’t really do anything all morning and afternoon. Around 4:00 John took Hunter over to his friend’s house to help them set up their new computer while my mom took Ciara and I to the movies to see “The Longest Yard.” I haven’t seen the first one but this one was hysterical! It was the funniest movie I have seen in a long time, from beginning to end. Ciara did alright for the first 20 minutes, but then she started fussing. I walked her around the back of the theater and then put her back in her wheelchair, she didn’t like that idea at all. I sat her on my lap and she was just as happy as could be. Later on I tried to put her in her chair again and she cried again so she sat on my lap for the rest of the movie. After the movie we stopped by our friend’s house to see how Hunter was doing. He was laughing and watching a Dragon Tails DVD. John said he was almost done so he would bring Hunter home soon. I dropped my mom off at her house and Ciara and I went home. John and Hunter came home about 10 minutes later. I made dinner, hooked Ciara up to the pump and then we watched a little TV. Hunter was just crazy tonight, hitting me, bothering Ciara, crying. We were put him in the Tumble Form chair, which we have only done once before, just so we could get a couple of minutes without him sitting on me and hitting me. Hunter didn’t like that idea, he started screaming and kicking and eventually rocked himself right out of the base. The chair was still strapped to him so he was crawling around with the chair on his back, like a turtle. After we laughed at him, I unbuckled him and he was running around again, then both kids were asleep by 10:30
MONDAY’S JOURNAL:
I woke up at 4:00 this morning when John left for work, but I went back to sleep. That is when I had a dream about Tommy, sort of. I guess we had cloned Tommy, but it was so great to squeeze that little face again! After breakfast we headed out to Sacramento. We decided to go and roam around the mall for a while, Hunter loves it. In fact, as soon as we walked in the door he started clapping, yelling, and smacking people on the rears. We walked around, had a bite to eat and then walked around a little more. When we got back out to the car I fed Ciara and then we went home. When we got home I put Ciara in the recliner and she was happy to lay down, although she did great all day today. John had to go load his truck for work so when he came home we had dinner. Hunter was just insane again tonight, I don’t know how much more I can take. He is just so hyper this weekend, he never stops moving, hitting, throwing, etc and it is just too much tonight. Eventually I just put him in the bedroom and shut the door. He had cartoons on but he was still so angry that I shut the door and he couldn’t get out. I just needed a few minutes to eat my dinner in peace. When John came home I ran to the grocery store to get some ice and when I came home, Hunter had continued his rampage of destruction. John just looked at me and said “It’s never going to get better is it?” I said “Nope.” What more can you say? Most of the time Hunter is fine, but when he gets in that mood/phase, he is just like the Tazmanian Devil, literally, and you can’t yell at him because he doesn’t understand so what can you do? Nothing, just pray that he calms down. Of course that happened around 10:30 when Teletubbies came on TV, then he was laughing and dancing, then he fell asleep, thank God!
TUESDAY’S JOURNAL:
I can’t tell you how happy I am that Hunter is going to school today! Now I can get a break. He was pretty happy this morning as he watched his cartoons and waited for the bus to come. Ciara seems in a good mood too. After they left I had some breakfast and then I ran out to Wal-Mart to look for something. I stopped at the grocery store to get Ciara’s cereal and then dropped it off at school, then I headed back home. There was a water leak in the pipes out under the street and Thursday it gave way and since then, we have had a sink hole right in front of our driveway. The city people came by today and said that they would fix it tomorrow. It has been such a pain in the butt to back out of the drive way and to get the kids on and off the school bus. The kids came home from school at 2:30 so I hooked Ciara up to the feeding pump and waited to see if Mason came over when he got out of school. My sister and my mom came over on their way to Mason’s baseball game but it turns out that the game was cancelled and Mason was over at a friend’s house swimming and having a BBQ so they went back home. It is so hot here today so it’s a good thing the game was cancelled. John came home around 6:00 so I made his dinner and then he had to go to the fire dept for a meeting at 7:00. They are doing wild land fire training for 2 hours and it is so hot here, I am glad it’s not me! Ciara sat in her Tumble Form chair for about 2 hours and didn’t fuss about it. She was happy as she watched TV and talked. Hunter was very good tonight, I think he needed to get back to school and get some energy out. Hunter fell asleep around 9:45 and I just finished feeding Ciara when John came home around 10:00, then she fell asleep. I just wanted to let you know that Tommy will be mentioned in the US News & World Report, along with his picture, on July 11. It is a story about the Children's Miracle Network and Dr. Kurtzberg.
Hugs To All, and ^^Angel^^
Friday, May 27, 2005 12:14 AM CDT
I just put up some new pictures so check them out!
WEDNESDAY’S JOURNAL:
After I sent the kids off to school this morning I had breakfast and then went to the grocery store. On my way home I stopped by the school and they were out of Ciara’s formula so I ran back to the store to get some, dropped it off at school and went home. The kids came home around 2:30 and Ciara was a little fussy. I hooked her up to her feeding pump and then Mason and my sister came over after school. She had to go to work but she brought us a pizza from her restaurant. Mason grabbed a piece and went out with his friends. We have a creek next to our house and they went swimming. I unhooked Ciara’s feeding tube and when I aired her tummy out, bile came back up into the tube, maybe that is why she is fussy, her tummy is upset. Around 6:30 I took Mason over to his dad’s house. Ciara is still fussing so I gave her a Tums, we’ll see if it works. Hunter had some pizza and watched cartoons. Ciara is still fussing so I guess the Tums didn’t work. John called, he isn’t coming home tonight. I also talked to my friend Shaun for a while and then it was time for bed.
THURSDAY’S JOURNAL:
After I sent the kids off to school, I ran out to the grocery store for my mom and then dropped the groceries off at her house and went home. The kids came home around 2:30 and they were both happy. When we got inside I put Ciara in her recliner and hooked her up to the feeding pump. She was fussy so I tried several things to make her happy but nothing worked. Mason & my sister came over after school but my sister only stayed a few minutes, she had to go to work. Mason goofed around on the computer for a while. I took him over to his dad’s around 4:30 and went back home. Ciara was happy in the car, but started fussing again when we got home. Hunter went into the bedroom and watched some cartoons for about an hour. I chatted on-line with some friends but the kids were both screaming by this point so that was all the fun I was allowed to have. John came home from work but then he had to go to the fire department to work on their computer, while he was there he had to go out on 2 calls. The computer mouse wasn’t working so when he came home to get another one, I had just finished making dinner so he grabbed his plate and took it back to the fire dept. I had moved Ciara over to the couch and she was much happier. I gave Hunter some chicken but he looked like he was about to fall asleep. I saw him eating it and then 10 minutes later he was sleeping. John came home around 9:00, just as I was about to hook Ciara up to the feeding pump. I put her in her Tumble Form chair and hooked her up and she just started waving her arms and laughing, it was so funny. I had sat down next to Hunter and I saw some chicken on his lip, but upon closed inspection I noticed that he had a mouth full of chicken. I was surprised that he hadn’t choked on it. When I moved him, several pieces of chicken fell out of his hands and he had about 6 pieces stuffed into his cheeks, but was apparently too tired to chew it before he fell asleep. Ciara fell asleep in her Tumble Form chair so when the pump was finished I put her to bed. It is now 12:30 and I am exhausted. Tomorrow their class is going on a field trip to the Sacramento Zoo, I am so excited!
FRIDAY’S JOURNAL:
Today the kids have a field trip for school, we are going to the zoo. I didn’t send them on the school bus this morning since I am going to drive them to the zoo. I fed them, dressed them and we were off to school. I didn’t know how to get to the Sacramento Zoo so I was going to follow the school bus there. We made it almost all of the way there, then it happened. We got separated and I ended up on my way to San Francisco! For those of you who know me, I HATE freeways and I am the MOST directionally challenged person on the face of the earth so I was about to cry. Of course since Hunter broke my cell phone and I don’t have enough money to buy a new one, I was on my own, again I was on the verge of tears. I have no idea where I was, but I got off the freeway and stopped at a gas station to get directions and eventually, I found the zoo. Of course every school within 200 miles was at the zoo and I didn’t see our school bus so I just parked, put the kids in their wheelchairs and pushed the chairs over to the front of the zoo. Their teacher was standing out front looking for us, thanks Lyn, so she pushed Hunter and we went into the zoo, they had just gotten there too. Ciara needed a diaper change so we did that and then walked around the zoo. Ciara had a great day today and Hunter favorite thing was the pink flamingos, he thought those were pretty funny. I got a picture of Hunter by the orangutans because he is my little orangutan. They are called ‘Wild People Of The Forest”, fitting don’t ya think? I also decided that Ciara is a giraffe. They both have long, skinny legs with big knobby knees and no butt. Of course the picture of took of Ciara and the giraffe didn’t come out. We had to leave at 11:30 so that the bus would get back to school in time so their teacher walked out to our car with me and then went back to get the other kids. I forgot to ask her were the bus was because I had no idea how to get home from there. I was going to pull up in front of the zoo and ask her, but there was no place to pull over until I was already out of the zoo. I stopped on the side of the road and waited and waited. Eventually I decided to turn around and go back into the zoo. Of course as I was at the stop light, about to turn into the zoo, the bus went by, I waved and they kept going, AAHHH!!! By the time the light changed and I got turned around, they were gone. Again, I was about to cry and my cell phone doesn’t work! I just said “screw it” and got on the freeway, hoping I was going in a direction that would get me somewhere that I knew. I don’t know how I did it, but I ended up on Howe Ave so of course we stopped at Panera to get some soup. I was starving since I hadn’t had time to eat anything all day and Hunter was eating his lunch that I packed in the car. While we were stopped there I tube fed Ciara and then we were off to Stockton to get John’s paycheck. Just as I was getting back into Ione I noticed that it was 2:50, time for Mason to get out of school so I picked him up, took him to get a drink and snack and then dropped him off at his dad’s house and finally we went home. Hunter was very happy to be home and Ciara was happy to be able to lay down, she was sitting for 7 hours which is a long time for her to sit up, but she did so much better then I thought she would. I hooked her up to the feeding pump and they watched cartoons. John isn’t going to be home until late tonight so later on, I made dinner for the kids. I talked to Michelle, Jillian’s mom, for a while. Jillian is doing great! Around 8:15 Hunter went into the bedroom and about 5 minutes later I looked in on him and he was asleep, he had a big day today! John came home late so I made his dinner and we watched a little TV. Ciara was sitting in her Tumble Form chair and she was laughing and waving her arms again. She is doing so much better and she is so much happier these days.
MEMORIAL DAY – by Michelle Keim
As we stand here looking
At the flags upon these graves
Know these flags represent
A few of the true American brave
They fought for their Country
As man has through all of time
Except that these soldiers lying here
Fought for your country and mine
As we all are gathered here
To pay them our respect
Let's pass this word to others
It's what they would expect
I'm sure that they would do it
If it were me or you
To show we did not die in vein
But for the red, white and blue.
Let's pass on to our children
And to those who never knew
What these soldiers died for
It's the least we can do
Let's not forget their families
Great pain they had to bear
Losing a son, father or husband
They need to know we still care
No matter which war was fought
On the day that they died
I stand here looking at these flags
Filled with American pride.
So as the bugler plays out Taps
With its sweet and eerie sound
Pray for these soldiers lying here
In this sacred, hallowed ground.
Take home with you a sense of pride
You were here Memorial Day.
Celebrating the way Americans should
On this solemnest of days. "THE PATRIOT" ~ *smile*
Memorial Day weekend was coming up,
and the nursery school teacher
took the opportunity to tell her class
about patriotism.
"We live in a great country," she said.
"One of the things we should be happy is that,
in this country, we are all free."
One little boy came walking up to her
from the back of the room.
He stood with his hands on his hips and said...
"I'm not free. I'm four."
Hugs To All, and ^^Angel^^ 
Tuesday, May 24, 2005 0:06 AM CDT
SATURDAY’S JOURNAL:
John worked an overnight haul last night so the kids and I slept in this morning. When the kids woke up I fed them and then Hunter went into the bedroom and spent the rest of the morning bouncing around in there and watching cartoons. We didn’t leave the house today, I just wasn’t up to it. My back hurts so much these days and just the thought of dragging them around and lifting the wheelchair in and out of the car, over and over, just didn’t appeal to me. John came home in the afternoon and we watched a movie. Around 5:30 he went over to his friend’s house to help them with their computer. When he came home I made dinner and that was about it for the evening, pretty boring.
SUNDAY’S JOURNAL:
I woke up around 6:30 this morning and 10 minutes later Ciara had a moderate seizure. When it was over, she went back to sleep. Patty called me and as I was talking to her, Ciara had another big seizure, that was around 8:00 this morning. Once everybody else woke up and had breakfast, John and I played a little Nintendo and then he had to go out on a call for the fire department. At 10:45 Ciara had another large seizure and she was pretty wiped out afterwards. In the afternoon we took the kids to Wal-Mart with my mom, then we got a bite to eat and went for a little drive. On the way home, Ciara had another seizure, that makes 4 seizures in 8 hours! We went back home and put her in her recliner and she was just a rag doll, poor little thing. She slept for most of the evening so the rest of us had dinner and watched TV. John went out running so while he was gone Ciara woke up and was looking pretty perky. I fed her some chocolate Boost pudding and she was very happy with that, this girl LOVES chocolate!
MONDAY’S JOURNAL:
After John went to work this morning, I got up and got Hunter ready for school. I am keeping Ciara home today, just to make sure she is alright. After I had breakfast and fed Ciara, we were off to Sacramento to pick up Ciara’s new seizure med. This one is to stop the seizures if they last longer then 5 minutes or if she has a bunch like she did yesterday. I stopped at Panera on the way home, I just love Panera! Ciara is doing very well today, I am surprised, I thought she would be a little dopey still. I ate lunch before Hunter came home while Ciara watched some cartoons. When I went out to the school bus, I heard Hunter “talking” and laughing while he was trying to smack the bus driver, it was funny. I brought him inside and as usual, he stopped on the stop step and did his “stink bug dance.” I call it the “stink bug dance” because he put his hands on the ground by his feet with his butt sticking up in the air, and taps his feet out behind him, it is so funny! My sister and Mason came over after school so we sat on the porch while Mason goofed around. Around 4:30 we headed out to meet my mom, today is her birthday. We met at Baskin Robbins and had some ice cream and she opened her presents. I took Mason to his dads and went home while my mom and sister went to the movies. When we got home Hunter watched some cartoons in the bedroom while Ciara and I were in the living room. John isn’t coming home tonight so it is a little boring here. After I fed the kids, Ciara got a little spunky and started talking and having a party, it was so cute! I called everybody so that they could hear her chatting. I think they were both asleep by 10:00, yippee!!! Well, I was wrong. Hunter was asleep, but Ciara woke up and laughing and chatted away until 1:00 this morning, she is such the little party girl these days!
TUESDAY’S JOURNAL:
Ciara woke up early with me this morning and she was in a great mood. I hooked her up to her feeding pump and then made their lunches and grabbed their clothes. While I was getting the little princess dresses, she started talking to me, so cute. Hunter was pretty happy this morning too. I dressed him while he watched Barney and then they were off to school. I got a new microphone for my computer so now I can talk to all of my MPS friends on-line and I don’t have to pay long distance charges, yippee!!! I chatted with Leslie this morning, she is graduating from high school today, congrats Leslie! I went out to the grocery store to get Hunter some fruit for his lunch tomorrow and then stopped by the school to drop of some formula for Ciara, then I went home. I chatted with Patty, Jesse’s mom, for a while and then the kids came home from school. My sister came over after she took Mason to his dad’s house so we watched TV and Hunter smacked her around for a while, then she went to Mason’s baseball game. John came home around 6:00 so I made dinner and we watched “The Contender” and “American Idol.” Ciara is a little fussy tonight, not sure why. It is now 10:00 and she is fussing, I just hooked her up to the feeding pump, and Hunter is watching “Teletubbies.”
THE ACHE WE HOLD INSIDE
When these children we loved are taken,
And the years pass slowly by,
You feel the grieving is over.
But the ache is still inside.
This life of ours must continue
And the tears we must learn to hide,
But you know it will never leave you,
This ache we feel inside.
Their siblings go on with their future,
And you know this is how it should be.
You share in their joys and sorrows,
But that ache won't let you free,
Where they rest, you visit less often,
And their voices are not as clear,
And our zest for life is returning,
But the ache is always near,
Our friends and families tell us,
How well we handled our grief,
If they only knew deep within us,
From this ache there is no relief,
When alone we talk to them often,
For we know they are still by our side,
And the warmth of our memories comfort,
But the ache will always abide,
As we continue this earthly voyage,
And the calm and the storms pass by,
We will cherish our precious memories,
And this ache we hold inside.
Author Unknown
Hugs To All, and ^^Angel^^
Friday, May 20, 2005 0:34 AM CDT
MONDAY 9:45 AM UPDATE: Ciara hasn't had anymore seizures, just the 4 yesterday. Did I say "just?" She ate some chocolate Boost pudding last night and has been awake and alert this morning, but I didn't send her to school. I am praying that the seizures are over! 
SUNDAY 2:30 PM UPDATE: Ciara just had her 4th BIG seizure today, I just don't know what's going on. She is so wiped out that she can't even sit up, she is just a ragdoll.
SUNDAY 10:45 AM UPDATE: Ciara just had another BIG seizure. John is out on a call for the fire dept so I will talk to him when he gets home. I just don't know if we should take her to the hospital, I don't think they will do anything for her, they never do. I'll keep you all posted!
SUNDAY 8:00 AM UPDATE: Ciara had two seizures this morning, the first one at 6:40 and then again at 8:00. The first one was a moderate one, but this last one was a big one and she is pretty out of it right now.
TUESDAY’S JOURNAL:
I woke up around 5:30 this morning so I hooked Ciara up to the feeding pump and then made their lunches for school. Around 6:45 I got them both dressed and they watched some Barney until the bus came. My mom called and asked if I could take her to the laundry mat so she met me there. While mine was washing I ran over to the school to see how the kids were doing, then I went back to the laundry mat. I kept getting the broken driers so my mom left when hers was done and I had to rush because I had to get home to get the kids off the bus. I called John and he isn’t going to be home until after 6:00 so I called my sister to see if she wanted to go to open house at school with me. I picked her up around 6:00 and we went over to the school. When we left the school I dropped my sister off and went home. John got home around 6:30 so I made dinner, we watched some TV and went to bed.
WEDNESDAY’S JOURNAL:
John isn’t working today so after I sent the kids off to school I made him breakfast in bed. He ran out to get a hair cut while I ran to the grocery store and then went back home. John had to go to Stockton to take care of something so I took my mom to the store and then rushed home to get the kids off the bus at 2:30. Mason came over after school and goofed around. John came back home around 5:00 so he stayed with the kids while I took Mason over to his dad’s house. I made dinner and then Hunter watched cartoons in the bedroom. Later on I gave Ciara some chocolate pudding while she watched some TV and then they both went to bed around 10:30.
THURSDAY’S JOURNAL:
Hunter woke me up at 4:00 this morning so I put on some cartoons, but he didn’t go back to sleep. I finally got up around 5:30 and got him something to eat and I hooked Ciara up to the pump. I watched a little TV before I had to make their lunch and get them dressed. After they left for school I had some breakfast and then John called and said that his company didn’t have anymore loads for him today and he was on his way home. When he came home we went to Sacramento to pick up a couple of things we needed and then went back home. About 30 minutes later it was time to leave again for the kids’ school. Today it was one of their classmates birthday and they were having a party for her at 12:30 so we grabbed her present and went to school. Ciara and Hunter both ate some chocolate cake and Deborah opened her present and then we left. John went up to his dad’s house and I picked up my mom and took her to the pharmacy and then took her back to her house. My sister was there and was going to Wal-Mart to get Mason some things he needed for a school project so I went with her and then took the things over to Mason’s house. When I was leaving his house I saw the school bus at Christina’s house, a few houses over, so I went over there and got Ciara and Hunter off the bus and then went home. John came home around 4:30, but he had to go back to work around 6:00 and load his truck for tomorrow. While he was gone I started dinner, I made enchiladas. I had just put the first pan in the oven and I went to check on the kids. I found Hunter sitting in my recliner with a big bucket of caramel apple dip. He had opened it and poured it all over himself, even his eyes were stuck shut with caramel! I grabbed the camera and took a picture, just as John walked in the door so he helped me clean him up and we tossed him in the bathtub. While John watched Hunter, I finished making dinner so when Hunter was dried off, everybody ate. In the evening John’s cousin came over so they sat on the porch for a while and I gave him some enchiladas to take home. When John came back in he helped me give Ciara a bath and then it was time for bed.
FRIDAY’S JOURNAL:
John had to leave for work around 3:30 this morning so I got up with him and made his lunch and then he left, he isn’t coming home tonight. I didn’t get up again until 6:30 this morning so I had to rush around and get the kids dressed and their lunch made. I also had to feed Ciara thru her tube, very fast, but we made it just in time for the school bus. After they headed off to school I watched a little TV and then headed out to Stockton to get some errands done before the kids came home. I got back home around noon and I was starving so I had some lunch and then waited for the kids to come home around 2:30. When they came home I brought them inside and hooked Ciara up to her pump while Hunter had some juice and watched cartoons in the bedroom. My sister came over before she went to work and then I put the kids in the car and picked up my mom and we went to Mason’s baseball game. We left the game around 8:00 and I took my mom home and then the kids and I went back home. We had dinner, watched some TV and then went to bed. Although right before I fed Ciara tonight she was sitting in her recliner, very alert, and just started chattering away, just talk, talk, talk, it was so cute! I just put up some new pictures so check them out!
Our little transplant friend, Annabelle, is in the latest issue of People Magazine, below is the article:
Dear MPS Society Members:
One of the bills currently endorsed by the MPS Society is H.R. 810 The
Stem Cell Research Enhancement Act of 2005. This bill calls for the
lifting of restrictions on research to permit federal funding of research
on embryonic stem cells with the following conditions:
The bill limits research to stem cells that meet the following ethical
requirements: (1) the stem cells were derived from human embryos donated
from in vitro fertilization clinics for the purpose of fertility treatment
and were in excess of the needs of the individuals seeking such treatment;
(2) the embryos would never be implanted in a woman and would otherwise be
discarded; and (3) such individuals donate the embryos with written
informed consent and receive no financial or other inducements.
This bill is gaining support in the House and has a good chance of
passing. The following is from the May 19th edition of the Washington
Post: James C. Greenwood, a moderate Republican who retired from Congress
last year to become president of the Biotechnology Industry Organization
(BIO), said he is "cautiously optimistic" that, given the large number of
co-sponsors, the House will pass the bill.
Washington Post Article Many of you will recall that Congressman Greenwood was an invaluable source of support to the MPS Society while he served in the House.
Please show your support of this bill by contacting your representative in
the House. The vote should occur early next week, so please act quickly.
Below is a sample letter of support. Copy and paste the letter to a new
document; add your representative's name and fax number to the top;
customize it in the generic areas and fax it to your representative's
Washington office. For fax numbers, or if you don't know who represents
you, go to www.house.gov or contact a committee member.
Please let us know if you get a response.
Thanks, as always, for your support.
Committee on Federal Legislation
Sissi Langford noniml@att.net
Kym Wigglesworth kwigglesworth@nc.rr.com
Denise Dengel ddengel@ncplus.net
Hugs To All, and ^^Angel^^
Sunday, May 15, 2005 0:57 AM CDT
IMPORTANT INFO: There is another Sanfilippo child trying to raise money for transplant. You an learn more about Frankie by clicking here, Frankie's COTA Website
THURSDAY’S JOURNAL:
When my alarm went off this morning, I turned it off but I fell back to sleep. I woke up again at 6:30 so I had to rush to get the kids dressed and lunch made and I didn’t have time to tube feed Ciara. I sent them off on the bus and called the classroom to tell them that they needed to feed her as soon as she got to school, and then again in the afternoon. I felt so bad, but at least she got fed and was happy. As soon as the bus drove away, I fell asleep again and didn’t wake up until 10:30, wow! I never get to sleep like that, I must have really needed it. So, I got dressed and then my sister called and asked if I could take Mason his backpack, he needed it as school. So, I drove to Sutter Creek to get his backpack, went back to Ione to drop it off at school, and then drove to Jackson so that I could pick up a birthday present for my sister and get Hunter some cantaloupe for his lunch tomorrow. While I was out, I grabbed a bite to eat and then headed back home. I passed the school bus on the way home, they had to pull over at the railroad crossing, and I saw Ciara sitting in the back of the bus. I waved as I went by, but they didn’t see me. When I got home I wrapped the presents and waited for the bus. The kids were both happy when they came home so I brought them inside and Hunter watched some cartoons in the bedroom and Ciara took a little nap on the couch. My sister and mom came over a little after 3:00 so I gave her her presents and then after a little bit, they left. Around 5:00 I hooked Ciara up to the feeding pump and she and Hunter watched “Jimmy Neutron” while I chatted on-line with a bunch of MPS moms, it was fun. Around 8:30 I changed their diapers and they were both asleep by 9:00.
FRIDAY’S JOURNAL:
After I sent the kids off to school, I went to Stockton to pick up John’s paycheck. I stopped at the grocery store, took my mom to get her car, and then went home. My sister came over before she went to work to pick up some drinks for Mason to take to his baseball game. I was going to eat a burrito, but when I turned around, Hunter had grabbed it and was enjoying it very much, little twirp. Patty called so we talked for a while. Around 7:00 Hunter fell asleep on the couch and then John came home from work around 7:30. I made dinner and then Ciara had a VERY tiny seizure so John held her in his lap and then she fell asleep. That was it for the evening, by 10:30, both kids were sleeping.
SATURDAY’S JOURNAL:
The kids and I got to sleep in today, John had to go to work early this morning. The kids and I watched a movie on TV and I made lunch. John came home around 2:15 so he helped me get the kids dressed and then he took Hunter over to his dad’s house. His brother and sisters were coming over for a BBQ so I took Ciara and my mom to the movies to see “Monster-In-Law.” Ciara did great thru the movie, I was surprised. On the way home I dropped my mom off and then I decided to drive up to John’s dad’s house. Of course everybody had just left a few minutes before I got there, but that’s OK. John said that Hunter ate two hotdogs and he was having a great time. We stayed for a little while, but Ciara was getting fussy so I took both kids home while John stayed with his dad and his brother. On the way home I stopped by Mason’s house to drop off a shirt that I bought for him and a movie he wanted to borrow. He asked if I could give him a ride to his friends house, so I did, then I went back home. I hooked Ciara up to her pump and then we watched TV. John came home around 8:00 or so and that was about it for the night.
SUNDAY’S JOURNAL:
I can’t remember what time I woke up this morning, I think it was around 7:00, but I didn’t get up right away. Hunter was already awake when I got up, but Ciara was still sleeping. I fed Hunter and hooked Ciara up to her feeding pump and then popped my breakfast in the oven. John was getting hungry so I made a pot of beef stew for lunch and after John ate, he went outside to mow the lawn. Hunter and Ciara both ate all of their stew and were very happy about it. Ciara looked so cute with gravy all over her face! We spent the afternoon doing laundry and cleaning a little bit. The weather here is very warm, but it looks like it is going to rain and it is muggy. If it isn’t raining later, we are going to go play a little tennis. Hunter watched cartoons on and off all afternoon while Ciara sat in her Tumble Form chair and watched with him. She is doing fantastic today, I can’t tell you how happy we are with how well she is doing these days. Just think, if we didn’t get the feeding tube for her, she won’t be here with us today, that is how bad she was. Now her doctor said that he doesn’t see why she won’t live another 10 years, that’s right, 10 YEARS! Isn’t that wonderful?! We always thought that she wouldn’t live past her 10th birthday and now she is 9 years old and doing so great! Hunter was jumping around on the recliner and fell and smacked his forehead into the hard part of the chair, of course, so he cried for a few minutes, but he is alright. Around 5:30 we ran out to the store and then stopped by my mom’s house to help her with something, then we went back home. We were going to play tennis, but it is raining, wouldn’t you know it. We had dinner, did a little more laundry and then went to bed.
I remembered, sort of, who wrote the poem about the kids and hopefully she will be able to send it to me again. But, I would still love to have some poems about Ciara and also for Hunter. I know this sounds morbid, but I just like to have everything together and ready, in case something happens to Ciara or Hunter. I have a few poems about Tommy, but I would love to have more if you would like. I know that when Tommy passed away, it was nice to have everything already done so I didn’t have to think about planning a funeral. For the past 5 years I have been saving songs, poems, etc. so I would love to have some poems about the kids, about what they mean to you and what you all love about them. Thanks!
PITCHER OF TEARS
MANY DAYS, A STRICKEN MOTHER,
TO HER LOSS WAS RECONCILED;
SHE WEPT, COMPLAINING,
"CRUEL DEATH HAS STOLEN MY CHILD."
BUT ONE NIGHT AS SHE WAS SLEEPING,
TO HER SOUL CAME A VISION,
SHE SAW HER LITTLE DAUGHTER
IN THE BLESSED FIELDS ELYSIAN.
ALL ALONE THE CHILD WAS STANDING;
A HEAVY PITCHER HOLDING.
THE MOTHER HASTENED TO HER,
AROUND HER ARMS UNFOLDING.
"WHY SO SAD AND LONELY?" ASKED SHE,
STROKING SOFT HER HAIR.
"SEE THE MANY MERRY CHILDREN
PLAYING IN THE GARDEN THERE?
"THEY'RE BECKONING, CALLING,
GO HELP THEM PICK THE FLOWERS.
PUT ASIDE THE HEAVY PITCHER.
DANCE AWAY THE SUNNY HOURS!"
FROM TENDER LIPS, A QUIVER;
THEN FELL THE ANSWER ON HER EARS:
"ON THE EARTH MY MOTHER'S WEEPING;
THIS PITCHER HOLDS HOLDS HER TEARS.
TEARS THAT TOUCH GOD'S BLOSSOMS,
SPOIL FLOWERS WHERE THEY FALL.
SO AS LONG AS SHE IS WEEPING,
I MUST STAND AND CATCH THEM ALL."
CRIED THE HEARTSICK MOTHER,
"RUN AND PLAY , SWEET CHILD OF MINE.
NEVER MORE SHALL TEARS OF SORROW
SPOIL YOUR HAPPINESS SUBLIME."
LIKE A BIRD RELEASED FROM BONDAGE,
SPED THE HAPPY CHILD AWAY.
THE MOTHER WOKE,
HER COURAGE STRENGTHENED,
EVERY SINGLE DAY.
Hugs To All, and ^^Angel^^ 
Tuesday, May 10, 2005 11:50 AM CDT
OK, I need some help! Quite a while ago, while we were still at Duke actually, somebody had written a poem about Ciara, Hunter, and Tommy. I have been looking everywhere for it and I just can't find it and I can't remember exactly who wrote it, darn it! If you know who it was, or it was you, can you please send it to me again? Or, if you would like to, please write a poem about the kids, it can be a poem for all three of them, or I am also looking for a poem about Ciara and a poem about Hunter, by themselves, I have plenty about Tommy, but I would love to have more if you would like. Thanks!
FRIDAY’S JOURNAL:
After I sent the kids to school, I ran to the grocery store to pick up a birthday cake. I dropped it off at the classroom and then ran to Stockton to pick up John’s paycheck. When I got back into town, I stopped at the store to pick up a few things for Ciara’s birthday party tomorrow. I ran into one of the aides and a couple of the kids from Ciara’s class, they were there to buy Ciara some presents, it was cute. When I got home, I wrapped some presents and then the kids came home from school. When I got to the bus I heard Ciara laughing, it was so funny. The bus driver said that she laughed the whole ride home. I brought the kids inside and my sister stayed with them while I picked up Mason from school. I got him a snack and then he finished his homework while I sewed some patches onto his baseball socks, he has a game today. Since John will be gone overnight and my sister has to work tonight, I don’t think I will be able to go to his game, I just don’t feel like doing it by myself, I am too tired this afternoon. In the evening we had dinner, watched some TV, and went to bed early.
SATURDAY’S JOURNAL:
HAPPY 9th BIRTHDAY CIARA!!!
I woke up around 8:00 this morning and as soon as I hooked Ciara up to her feeding pump, I started getting everything ready for Ciara’s birthday party today. We got out to the park around noon and set everything up. We are having her party at Howard Park and it just happens to be Ione Homecoming weekend so there are vendors and food, games, and a carnival, so it will be fun. My mom went down to talk to the man at the ticket booth for the rides to see if we could get a discount on the tickets. I was shocked when he gave us a free pass for the kids to ride all of the rides, that was very nice of him. Ciara and I rode the Spider, but that was all she rode. We grabbed some nachos and headed back up to the stage where we were having her party. When the other kids were done riding, we opened the presents and then had some cake. She got a lot of nice summer clothes, she really needed new dresses, and some toys that I know she will love. Thank you all! After the party we went home and took a nap. That was about it for the evening, John did have to go up to our storage to get something, but that was it. We had dinner, watched TV, and went to bed. Around 1:00 this morning John ran out for a fire call, but he was home soon after.
SUNDAY’S JOURNAL:
Happy Mother’s Day! 
I got to sleep in until 9:00 this morning!!! Once everybody was awake, I made breakfast and the kids watched some cartoons and played. Around 1:00 I ran out to Wal-Mart and then I picked up my mom and brought her to our house. She has been wanting to watch the movie “National Treasure,” so I got it for her and we watched it. John ran over to the fire dept. to see if they needed help cleaning up after the homecoming. My sister came over after work, but around 6:00 we headed out to dinner. We met up with a few people from the fire department and we had dinner. Ciara ate a lot, but Hunter was just a terror. He hasn’t acted that bad in a long time, several times I considered taking him home. After dinner, John took my mom home and I got the kids ready for bed.
MONDAY’S JOURNAL:
After I sent the kids off to school today I had to make a few phone calls. We had ordered Ciara’s new wheelchair over four months ago, but we haven’t heard a word from Kaiser about it. I have been calling for over a month, I just want to know where we stand, has it been approved or denied. Nobody every returned my phone calls, and every time I called, they transferred me to a machine. Finally, I got a hold of a REAL person this morning and she said that they approved her wheelchair on April 28. I was shocked because Kaiser doesn’t pay for wheelchairs, I just needed the denial so I can move on to our next insurance. So, Ciara should have her new wheelchair in 4-6 weeks, yippee!!! After the kids came home, I fed Ciara, got Hunter a snack, and then we stayed in until John came home. The weather has been stinky today, rain, rain, and a tornado! I have lived here 27 years and I have never seen a tornado in Amador County. John called and said that the sun was shining where he was, but the sky over Ione was black and black could be. Our power kept going out, which made Hunter made because he couldn’t watch cartoons. My sister came over after she took Mason to his friend’s house, she stayed until the weather calmed down a bit, then she made a mad dash for home. When John came home, we put the kids in the car and headed out to Sacramento, we are meeting a family for dinner. They had read about us in the LA Times when we were fighting Kaiser and they are here for a couple of days so we are going to meet them. On the way to the restaurant, I turned around in the car to see what Hunter was doing, he was eating a raw potato, yuck! By the time we got to the restaurant, it had stopped raining, although I did see a rainbow, thanks Tommy! Hunter was a little fussy, but not bad, Ciara was great during dinner. Hunter didn’t eat too much, but Ciara had some spaghetti, applesauce, and cheesecake. I was very nice to meet the Foullon family, they are so nice and their kids are so cute! I fell in love with Ben, he is Tommy’s age and looks like Tommy. I just wanted to take him home with me! They will be coming back this way in a week or so, we are planning on getting together again, I can’t wait! After dinner we went home and the kids went right to sleep.
TUESDAY’S JOURNAL:
I woke up around 5:30 this morning and hooked Ciara up to the feeding pump. I made their lunches and got them dressed and they were off to school. John went to work not long after that so I grabbed a quick bite to eat and then ran out to the dollar store and went back home. Ciara and Hunter came home around 2:30 and when I got to the bus, one of the little boys told me that he sang to Ciara. Every time she cries, Matt sings to her until she falls asleep. He usually makes up the songs, but he made one up for Ciara called “Go To Sleep My Angel,” it is so cute! Mason and my sister came over for a couple of hours. Mason and I had a potato gun fight, not really sure who won. Not long after they left, John came home from work so I made dinner. Ciara slept all evening long, I hope she isn’t getting sick again. Hunter got a little fussy and then all of a sudden he got off the couch and went into the bedroom. John turned on some cartoons for him in the bedroom and we didn’t see or hear from him again. A couple of hours later I went in to see what he was doing, he was curled up in bed, asleep. I put up some new pictures so check them out!
We are starting to make plans to attend this year's MPS Conference. It will be in November, but we need to start raising the funds now. If you can help out with donations or fundraiser, please let me know. If you would like to make a donation, there is a link towards the top of the journal. For more information about the Conference, you can visit the National MPS Soceity's Website Thanks!
I have a favor to ask of you all. I have mentioned our friend Jesse, he has Sanfilippo, his mom, Patty, is doing a booth at the “World of Possibilities/Disabilities Expo” in a couple of weeks. There will be about 14 families attending which is fantastic. But, they need some donations to help off-set the cost of the dinner, they are trying to keep the cost to about $10.00 per person. They have received a couple of donations already, but they still need more to help with the dinner and items for the children. You can visit Jesse’s website for more information on how to help out by clicking here, Jesse's Journal . You can also learn more about the Expo by clicking here Disabilities Expo Website
Hugs To All, and ^^Angel^^ 
Sunday, May 8, 2005 12:06 AM CDT
MY MOM IS A SURVIVOR
My mom is a survivor,
Or so I have heard it said.
But I can hear her crying
When all others are in bed.
I watch her lay awake at night
And go to hold her hand.
She doesn’t know I’m with her
To help her understand.
But like the sands upon the beach
That never wash away…..
I watch over my surviving mom,
Who thinks of me each day.
She wares a smile for others……
A smile of disguise .
But through heaven’s open door
I see tears flowing from her eyes
My mom tries to cope with my death
To keep my memory alive.
But to anyone who knows her
Knows it’s her way to survive.
As I watch over my surviving mom
Through heaven’s open door….
I try to tell her
Angels protect me forevermore.
I know that doesn’t help her….
Or ease the burden she bears.
So if you get a chance, talk to her….
And show her that you care.
For no matter what she says….
No matter what she feels.
My surviving mom has a broken heart
That time won’t ever heal.
HOW MOMS WERE MADE
By the time the Lord made mothers, he was into the sixth day working overtime. An Angel appeared and said "Why are you spending so much time on this one?" And the Lord answered and said, "Have you read the spec sheet on her? She has to be completely washable, but not plastic; have 200 movable parts, all replaceable; run on black coffee and leftovers; have a lap that can hold three children at one time and disappears when she stands up; have a kiss that can cure anything from a scraped knee to a broken heart; and have six pairs of hands." The Angel was astounded at the requirements for this one. "Six pairs of hands! No Way!" said the Angel. The Lord replied, "Oh, it's not the hands that are the problem. It's the three pairs of eyes that mothers must have!" "And that's on the standard model?" the Angel asked. The Lord nodded in agreement, "Yep, one pair of eyes are to see through the closed door as she asks her children what they are doing even though she already knows. Another pair in the back of her head are to see what she needs to know even though no one thinks she can. And the third pair are here in the front of her head. They are for looking at an errant child and saying that she understands and loves him or her without even saying a single word." The Angel tried to stop the Lord. "This is too much work for one day. Wait until tomorrow to finish." "But I can't!" the Lord protested, I am so close to finishing this creation that is so close to my own heart. She already heals herself when she is sick AND can feed a family of six on a pound of hamburger and can get a nine year old to stand in the shower." The Angel moved closer and touched the woman. "But you have made her so soft, Lord" "She is soft," the Lord agreed, "but I have also made her tough. You have no idea what she can endure or accomplish." "Will she be able to think?" asked the Angel. The Lord replied, "Not only will she be able to think, she will be able to reason, and negotiate." The Angel then noticed something and reached out and touched the woman's cheek. "Oops, it looks like you have a leak with this model. I told you that you were trying to put too much into this one." "That's not a leak," the Lord objected. "That's a tear!" "What's the tear for?" the Angel asked. The Lord said, "The tear is her way of expressing her joy, her sorrow, her disappointment, her pain, her loneliness, her grief, and her pride." The Angel was impressed. "You are a genius, Lord. You thought of everything for this one. You even created the tear!" The Lord looked at the Angel and smiled and said, "I'm afraid you are wrong again, my friend. I created the woman, but she created the tear!"
GOD BLESS THE GRIEVING MOTHER
God bless the grieving mother...
In January as the snow flakes fall...
And as a new year dawns...
For her memories will comfort her...
Through winter, spring, summer, and fall.
God bless the grieving mother...
In February during the month of love...
She sends her hugs..on the wings of a dove...
And her kisses are blown to the moon above.
God bless the grieving mother...
In March and on St Patricks Day...
A beautiful rainbow...a symbol of hope...
Which colors her world..in a magical way.
God bless the grieving mother...
On Easter In April as she stops to pray...
Thanking God for the gift of everlasting life...
Knowing she will be reunited someday.
God bless the grieving mother...
On Mothers Day and thru the month of May...
Whose memories are like threads of gold...
For they will never tarnish....or go away.
God bless the Grieving mother...
In June as her tears fall like the rain...
Please comfort her...and give her strength
and peaceful days to help ease the pain.
God bless the grieving mother...
In July as the fireworks light up the sky afar...
Just like her memories light up her heart...
And she wishes upon an evening star.
God bless the grieving mother...
In August...as the sun shines through...
Who's life moves on...thru ups and downs..
Whose heart is so tender and true.
God bless the grieving mother...
In September as the leaves turn and fall...
Her childs life forever etched in her heart..
Her childs name entered on the memorial wall.
God bless the grieving mother...
In October...with the harvest colors all around....
Please guide her on her journey of grief...
and keep her safe and sound.
God bless the grieving mother...
In November...a time to give thanks and pray...
Who is so thankful for each precious memory..
But wishes with all her heart...just for one more day
God bless the grieving mother...
In December as Christmas nears...
Please bless her with the gift of peace...
And many great friends to help dry her tears.
God bless the grieving mother...
Each day throughout the year...
As seasons come and go...
And time unfolds...
Day by day...
Month by month...
Year by year...
and especially today...on this Mother's day.
Thursday, May 5, 2005 0:18 AM CDT
SATURDAY UPDATE: YIPPEE!! Today is Ciara's 9th birthday! Happy Birthday Princess!!! I just put up some new pictures so check them out!
FRIDAY 5:00 PM UPDATE: When I got Ciara off of the school bus this afternoon, she was laughing and laughing. The bus driver said that she laughed the whole ride home. I brought her inside and she continued to laugh for two hours! I can't tell you how wonderful that was to hear that belly laugh again!
MONDAY’S JOURNAL:
John isn’t working today so once everybody was up, fed, and dressed, we headed out to Wal-Mart to get my tired fixed. It went flat a couple of weeks ago and they patched it, but it is leaking again and since we are going to San Francisco tomorrow, I want it fixed before we go. They took the van right in but they couldn’t fix it so they gave us a free tire, BONUS!!! We went back home and did some laundry and had lunch. Ciara got a birthday present in the mail, thanks Lia! Ciara was lounging in her recliner and around 4:00 she had a big seizure, but she is OK. Once it was over, she took a little nap. We decided that the dog needed a bath, the dog didn’t appreciate that idea! When she was done, John took her outside for a while. After dinner we were all sitting in the living room watching TV but Hunter was sitting on the couch, his head turned all the way to the right, the opposite direction of the TV. He did this for two hours, I would move him, turn his head, but he would end up doing to same thing. This worries me because this is what Ciara would do when she was having a seizure. If I yelled loud enough, or clapped loud enough, Hunter would look at me, which Ciara can’t do if she is having a seizure, so I am not sure what was going on with him, I am praying that he is not starting to have seizures. Ciara was very alert this evening, she sat in her Tumbleform chair and watched TV, I fed her and then we all went to bed.
TUESDAY’S JOURNAL:
I got up early this morning so I could get the kids fed and dressed and ready to go to San Francisco for their dentist appointment. We left the house around 11:30 and we got to San Francisco a couple of hours later. We went to UCSF Peds Dental, our appointment was at 2:30 but they didn’t take us in until 3:30. While we were waiting, Loren’s mom called to talk to me, Loren has Sanfilippo and was just transplanted in Arizona. They were great with the kids, they left them in their wheelchairs and looked in their mouths to see what needed to be done. Ciara didn’t make a peep and Hunter whined a couple of times, but he did great too. When we left the dentist we headed over to another Sanfilippo friend’s house. Cecilia is 6 years old and just too cute. John and I looked at each other and said that she looks so much like our friend Jesse, it was amazing. We stayed there for about an hour and half, I fed Ciara, Hunter watched cartoons with the kids, but he was getting fussy so it was time to leave. We drove over to Pier 39, grabbed a bite to eat and headed back home. As soon as we got home Hunter went to sleep, I fed Ciara and she was sleeping soon after.
WEDNESDAY’S JOURNAL:
I didn’t get up until 6:45 this morning so I considered not sending Hunter to school, because I only had about 15 minutes to get him ready and off to school, but I did and he went. I didn’t send Ciara to school, I want to take her to the doctor because she has had this fever, on and off, for a week. After I had a bite to eat, Ciara woke up so I fed her and then I noticed that she didn’t have a fever anymore. She was very alert and bright eyed this morning. I got her dressed and we went out to help my mom with her errands. A couple of days ago I sneezed and hurt my back again, not as bad as last time, but it is still bothering me. So, because of that, I didn’t want to drag Ciara’s wheelchair in and out of the car so I made her walk everywhere we went. My mom was shocked to see her walking, and walking so well. I had to hold onto her hands, but she did great! After we finished with my mom’s errands, she went home and Ciara and I went to school. They had called yesterday to see how she was doing so I thought we would drop by so they could see her. Ciara walked to the classroom and one of her classmates saw her and ran and told everybody that Ciara was here, it was so cute. They all love her so much! Hunter was having a great day at school. Most of the kids were out sick, so he had the aides to himself and was taking full advantage of them. They played and played, it was funny. I sat Ciara in a chair and we were all surprised at how well she sat there, straight up and just looking around. I showed the teacher Ciara’s tummy, when I lifted her shirt, there was a little bit of tummy popping over the top of her pants! It was time to go back home because she was starting to get a little fussy. When we got home I fed her and she took a little nap. Ciara got another birthday present in the mail today, thanks Stan! Hunter came home from school and then my sister came over. She stayed with the kids while I picked up Mason from school and got him a snack. Mason said that he had a lot of homework to do so we took him home and then went to Wal-Mart with the list of school supplies that he needed. I dropped my sister off at her house and then dropped Mason’s supplies at his house and we went home. I gave Hunter his dinner, but he only took a few bites and fell asleep on the couch, clutching his cheeseburger. Of course the dog took it from him, but he was just took exhausted to care, he slept for the rest of the night.
THURSDAY’S JOURNAL:
I woke up around 5:30 this morning so I hooked Ciara up to the feeding pump and watched a little TV while I tried to wake up. Around 6:45 I got the kids dressed and ready for school. It was so nice to see the school bus drive away with both of them! My friend Shaun called, her son has MPS too, so we talked for a couple of hours! When my phone battery finally died, I ran to the post office and then went back home. The kids came home around 2:30 and then around 3:30 my sister stopped by on her way to work. It has been raining very hard all day today. Patty called so we talked for a while and then John came home from work so I had to make dinner. We spent the rest of the evening watching TV and taking it easy. I have a favor to ask of you all. I have mentioned our friend Jesse, he has Sanfilippo, his mom, Patty, is doing a booth at the “World of Possibilities/Disabilities Expo” in a couple of weeks. There will be about 14 families attending which is fantastic. But, they need some donations to help off-set the cost of the dinner, they are trying to keep the cost to about $10.00 per person. They have received a couple of donations already, but they still need more to help with the dinner and items for the children. You can visit Jesse’s website for more information on how to help out by clicking here, Jesse's Journal . You can also learn more about the Expo by clicking here Expo Website
Hugs To All and ^^Angel^^ 
Sunday, May 1, 2005 2:47 AM CDT
MONDAY 4:00 PM UPDATE: Ciara just had a very big seizure and it just broke my heart. The faces that she makes, the weird positions her body gets into, it just makes me want to cry. I wish that I could change places with her, she doesn't know what is happening to her and it kills me!
I made this background in honor of Tommy. As most of you will remember, Tommy LOVED cheese, so I thought it would be cute to have him popped out of a piece of swiss cheese!
TUESDAY’S JOURNAL:
I woke up around 5:00 this morning so I hooked Ciara up to her feeding pump and then made Hunter’s lunch for school. I got the kids dressed and sent them off on the bus. I grabbed a quick bite to eat and then watched a little TV before I ran out to Wal-Mart. When I got home, the school nurse called and said that one of the kids in the class has a virus. That is what has been passed around the class from kid to kid for the past couple of weeks. She said that the virus causes diarrhea, which Ciara got yesterday, and is spread by coughing, which Hunter has been doing. So, she doesn’t want the kids to come back to school until they are diarrhea and cough free for two days. So, it looks like I won’t be doing much for the next few days. They kids came home on the bus around 2:30 and then I picked up Mason from school. He stayed for an hour or so, but then my sister came over and we went to his baseball game. We stayed for about an hour, but Ciara was starting to fuss, so we went home. John isn’t coming home tonight so I fed the kids, and then we didn’t do anything else, just went to bed later on.
WEDNESDAY’S JOURNAL:
Since the kids aren’t going to school today, they slept late this morning. We didn’t really do much today, just stayed in. Hunter’s nose is still running a lot and he has a bad cough. Ciara still has a fever, on and off, and diarrhea so they are just feeling blah. After school, Mason called me and said that he was at his friend’s house so I wouldn’t worry about him. A friend came over and bought a few things that we had left over from the yard sale so that was great! A little while later, Mason called again and asked if I could pick him up and take him over to his dad’s house, so I did. While John stayed with the kids, I ran to the grocery store and to the post office and then went back home. We had dinner, watched TV and then we went to bed.
THURSDAY’S JOURNAL:
The kids slept in this morning, yippee! When the kids finally woke up, I made them some breakfast and then we watched some TV. I don’t want to take the kids out today so we just stayed home all day. In the afternoon Libby, from Valley Mountain Regional Center, came over for the kids’ IPP. We didn’t really change anything, but she is going to put in a request to get Ciara a bath chair. Mason called me after school and asked if I could pick him up, he wanted to come over to our house for a few hours. I brought him back home and he goofed around for a while. I got a webcam yesterday so he played with that for a while. Alyssa has one too, so we got her on the internet and she and Mason goofed around with their cameras, he thought that was pretty cool. John came home from work and then at 5:30, the life insurance guy came over to bring us our new policies. After he left, I took Mason back to his dad’s house. That was pretty much it for the evening, we had dinner, watched TV and went to bed.
FRIDAY’S JOURNAL:
Again, I got up early this morning, for no reason. John isn’t working today so when he got up, he had to work on his car. It needs a lot of work and it will be an all day job so he took the car up to the shop where his brother works. In the afternoon I took the kids to Stockton to pick up John’s paycheck. My mom called and asked if I could take her to the grocery store so I picked her up. I dropped her back off at her house and then the kids and I went home. John came home around 7:00 so we had some dinner and watched TV before we went to bed.
SATURDAY’S JOURNAL:
I woke up around 5:00 this morning because Ciara woke up and wouldn’t go back to sleep. So, I packed John’s lunch for work and he left. He is doing an over night haul so he won’t be home until tomorrow. The kids and I stayed in, I didn’t feel like dragging them out. In the afternoon I had put Ciara in her Tumble Form chair and gave her a little toy to hold on to. She held it for a little bit and then dropped it in her lap. I was shocked when she reached down and picked it up and put it in her mouth, she hasn’t done that in a long time! My sister called and said that we were going to go out to dinner later so around 5:00 I put the kids in the car and we went to Jose’s Mexican Restaurant for dinner. My sister and my mom met us there and Hunter was very happy about it. The kids have been cooped up in the house all week and were going stir crazy. Ciara ate a french fry and some rice and beans so that made me happy. After dinner I took the kids home and we watched some TV before we went to bed.
SUNDAY’S JOURNAL:
The kids and I slept in this morning, I think I got up around 8:00 which was nice. When the kids woke up, I made them breakfast, hooked Ciara up to her pump, and we watched some cartoons. We were supposed to go out with my sister and Mason, but that didn’t work out, darn it. I decided to make some lasagnas instead. I made three of them, one for us, one for my mom, and one to send over to John’s cousin’s house. My sister stopped by on her way to work and then Ciara took a nap while Hunter fussed. I knew that it was going to happen, but Hunter has diarrhea. All of the kids in his class have this bug and Ciara had it last week so I wasn’t surprised. The problem is that now he has diaper rash really bad and he cries and just can’t get comfortable. I ran out to the store to get some cream for it and it helped a little bit. When John came home from work, I got him some lasagna and then he went over to his dad’s house. Ciara and Hunter both ate some lasagna too. John came back home, but not for long. He took one of the lasagnas over to his cousin’s house and stayed to visit for a little bit. It is now 11:00 pm and Hunter is finally asleep, Ciara is almost asleep.
Just a reminder, Ciara's birthday in on Saturday, May 7 and we are having a birthday party for her. It will be on Saturday at Howard Park in Ione so please come and celebrate with us!
I just wanted to let you all know that Hunter ate my cell phone so I don't have one anymore. I am hoping to get a new one in the next few days, but if you need to get a hold of me, just call the house. Yoiu can still call my cell phone and leave a message and I will return your call as soon as I can.
Hugs To All and ^^Angel^^ 
Sunday, April 24, 2005 3:57 AM CDT
SUNDAY UPDATE: I just wanted to let you all know that I am going to update the journal this evening, so please check back later on. I also would like to thank you all for continuing to stop by and visit us, it really means a lot to us!
FRIDAY’S JOURNAL:
Both kids went off to school this morning, yippee! We have a lot to do today so I am happy that I don’t have to drag them along with us. After we had breakfast, John went over to the storage while I went to Stockton to pick up his paycheck and then to Sacramento to pick up the kids’ prescriptions. When I got home, John was unloading the boxes from storage so that I could go thru them, we are having a yard sale tomorrow. Ciara and Hunter came home a little after 2:00 so I brought them inside and hooked Ciara up to the feeding pump and Hunter had some juice. When Ciara was done, we put them in the car and went back to the storage to get more stuff. When we got home it was time to go thru the boxes. The first couple of boxes were all of Tommy’s toys that he got for his birthday and Christmas, he never got to play with them. That was so hard to do, because Tommy would have loved them and also because Hunter and Ciara can’t play with most of them anymore. I am going to send some of them out to a few of our MPS friends, I know Tommy would want that. I also had to go thru some of his clothes, that was also a killer. I eventually go thru most of the boxes and we priced everything and set it outside. I made dinner and then we went to bed, it was a long day.
SATURDAY’S JOURNAL:
I woke up early this morning because we had to get everything set up for the yard sale and put up the signs around town. We had just set everything up when it started to rain so we had to move everything onto the porch. I made some breakfast and then my mom came over to help me while John went to the fire department, they were selling tri-tip sandwiches on Main Street. Hunter was eating a doughnut when he started to choke. He was breathing OK, but it was stuck in his throat and he was drooling A LOT. That is exactly what happened both times Ciara got something stuck in her throat and she had to go into surgery to get it out. I tried to give him some juice to wash it down, but he wouldn’t drink it. He just crawled over to me to let me know something was wrong and he started crying. I called John and told him to come home right away. There wasn’t really anything we could do, just hope that it would go down. We tried to force some water down him, but he fought that. Eventually he did take a sip of juice and a few minutes later he stopped crying and was smiling and watching cartoons again. John went back to the fire department while my mom and I took turns outside with the yard sale. The kids slept for most of the afternoon so I know that Hunter isn’t feeling well, he NEVER takes a nap. John came home around 5:30 so I took my mom home. People stopped coming to the yard sale around 7:00 so I made dinner and then I fell asleep for about an hour or so. When I woke up, John went over to his cousin’s house. The kids were still sleeping so after I fed Ciara, I watched some TV and then went to bed.
SUNDAY’S JOURNAL:
I woke up around 5:30 this morning when I heard Hunter watching cartoons. I tried to go back to sleep, but I couldn’t. We forgot to take down the yard sale signs around town so I had to rush to get dressed when people started coming by this morning. As soon as they left, I jumped in the car and drove around, taking down the signs. When I got back home we got the kids dressed and we went out to get something to eat and Ciara ate a lot. She had a bowl of chocolate pudding, some french fries, and a whole strawberry shortcake. After lunch we went to the Wal-Mart Super Center, I love that store! The groceries there are so much cheaper then a regular grocery store. On the way home we saw my dad and Gloria parked on the side of the road. They had stopped for lunch and were just about to head back to Monterey. We stopped and talked for a while and then we went home. Everybody took a nap and then in the evening we had dinner and watched a little TV. The kids got a bath but Hunter went right back to sleep. He still has a fever and has been sleeping a lot the past couple of days. It is now 1:30 am and Ciara just fell asleep a few minutes ago. 
Are You the Proud Parent of an "Angel"?
If you answer yes to any of these questions, the answer is more than likely a resounding yes!
Have you developed the quickest reflexes around...diving for the salt shaker that is about to fly off the table...or protecting yourself from a lightning quick elbow, hand or foot jab?
Do you have bruises all over your body from the slaps, kicks, pokes etc...that came so suddenly that even your extraordinary quick reflexes couldn't help defend yourself?
Do you find yourself grabbing the hands of other adult friends at the dinner table as they reach for a dish? And do you remember to apologize profusely as they look at you in horror?
Have you visited the ER because you are unable to see (your eye won’t stop watering!) after your angel’s aim was "right on"? If you haven’t ...be prepared! It’s called an abrasion on the cornea and it heals on its own in 24 to 48 hours! Don’t bother to seek help!
Do you push everything into one small corner of the table at a restaurant the minute you sit down and instruct the waiter to do the same?
Do you find yourself apologizing your life away to strangers who have been hugged, squeezed, grabbed, had their hair pulled etc...by your favorite angel?
Have you ever had to buy a replacement hot dog, popcorn, soda, etc....for another individual who had theirs snatched by the quick hands of your angel? For example, has a friend looked away for a moment and realized that his hot dog bun no longer contained a hot dog!!
Is the dust buster one of your best friends? Couldn't live without it, right?
Do unfamiliar people wave at you and you wonder who in the world they are!?! And do you later discover that your angel is busy greeting anyone and everyone from the back seat of the car?
Do you consider yourself a champion stain remover?
Do you think you hold the world record for hugging and kissing a child...especially a TEENAGE CHILD!
Have you become a speed reader...while rapidly turning the pages of a magazine to satisfy a very impatient angel? And do the dogs in those worn magazines have evidence of being firmly "poked"?
Do you find yourself thinking unkind thoughts about rude individuals? And...deciding to take the high road, do you smile politely or ignore the rudeness...when you’d REALLY like to say "**@@!!&!**!!!"
Do you find yourself fleeing for a closet, restroom, garage etc... when your angel has discovered that you’re taking an important phone call?
Have you forgotten what a good night's sleep feels like?
Are you greeted on a weekend morning (or when you’re really, really, really running late) by a very bad smell (and occasionally some giggles) coming from you know who's bedroom???
When you hear the sound of diabolical giggling...does your heart stop while (simultaneously) your legs fly in the direction of the sound?
Do you often hear the sound of water exploding from the faucet...followed by that diabolical giggling just mentioned?
Do you find yourself using food as a motivater...BECAUSE IT WORKS!!!???
Do you often discover that you have taken a bath with your angel even though you haven’t actually been in the tub?
Do you feel like you have spent a considerable amount of your adult life sitting in the restroom...facing the toilet???
Have you ever felt like you have taken on the role of "midwife" in the restroom?
And last but not least...
Do you sometimes feel so sad, fatigued, lonely and overwhelmed that you can’t imagine hanging in there much longer? And when you think about it for awhile... is it impossible to imagine life without the unconditional hugs and love from your angel? There's just something about that grin...and the joy that our angels express when they see us...that will help us endure.
Hugs To All and ^^Angel^^ 
Thursday, April 21, 2005 2:43 AM CDT
MONDAY’S JOURNAL:
After I sent the kids off to school this morning, I made something to eat and watched a little TV. I wrote out a few of Ciara’s birthday invitations, but around 8:30 I had to head out to the DMV to renew my driver’s license. I thought I would be there forever, but I got out of there pretty fast, I was surprised. Since Ciara was up crying all night and Hunter had a runny nose this morning, I decided to stop by the school to make sure they were OK before I went home. When I got there, Hunter had finished his snack and was playing around. The teachers said that when they changed Ciara’s diaper, there was some blood. They showed me the diaper she was wearing and I saw some blood, so we are not sure if she is starting her period or if it is something else. When I got home I called the doctor, we have an appointment this afternoon anyway, to let him know. He called the OB/GYN and they said to just chart what she does and we will have to wait and see what happens. Around 12:30 I went back to school to pick them up so that I could take them to Sacramento to see the doctor. Dr. Lipson hasn’t seen them for over 6 months so he said that Ciara looked much better then the last time he saw her. He is going to get her a patch to wear that will stop her constant drooling, yippee! We weighed Ciara and since her surgery she has gained 3 lbs! Hunter is still doing pretty well so I don’t think we really need to do anything for him. When we left Kaiser, I stopped at Panera and got some soup and bread and took it home for my dinner, I LOVE PANERA! When we got home I fed Ciara and Hunter watched some cartoons and played with his toys. I haven’t noticed anymore blood in Ciara’s diapers so we will just have to see what happens. John got home about an hour after we did, so I made dinner and we just took is easy for the rest of the evening.
TUESDAY’S JOURNAL:
Ciara didn’t sleep at all last night, she was up crying ALL NIGHT LONG! So, I decided not to send her to school and just as the bus came, she fell asleep. I put Hunter on the bus and then grabbed a quick bite to eat before I hooked Ciara up to her feeding pump. I didn’t do much for the rest of the day, Ciara slept all morning and didn’t wake up until Hunter came home at 2:00. Mason came over after school for a little bit, but then we had to leave for his baseball game. When we got there, it had just started to rain, so I parked by the fence and left the kids in the car with the heater going. A friend of mine from when I worked at the hospital was there, I haven’t seen her in years. I didn’t even know that her husband was killed in a motorcycle accident just a couple of months before Tommy passed away. I was great seeing her again! When the game was over I took the kids home, I think it was around 8:00 by the time we got there. We had some dinner, watched some TV and went to bed. John isn’t coming home tonight, he is doing another over night haul.
WEDNESDAY’S JOURNAL:
I woke up around 5:45 and hooked Ciara up to the pump and then started getting everything ready for school. After the kids left, I had some breakfast, watched Regis & Kelly, and then headed out to the grocery store. Just as I was putting the groceries in the car, the school called and said that Ciara got a fever and red splotches all over her, it just happened all of a sudden. So, I drove over to the school and by the time I got there, the redness was pretty much gone, but she still felt warm to me. I took her home and she fussed a little bit for the rest of the afternoon. Hunter was very happy when the bus brought him home from school. Mason and my sister came over when he got out of school and we dyed his hair blonde in the front, it looks so cool. John came home from work around 4:00 or so and Mason and my sister left about 5:00. I had just made John some dinner and before he could get a bite, his fire dept pager went off and he had to leave for a car accident. By this time Ciara was breathing very loud and I could hear her chest rattling. That worried me because she also has a fever so I am praying that she isn’t getting pneumonia again. Hunter’s nose is also running so I gave them both some decongestant and we watched at little TV and just took it easy. John didn’t come home for hours, but when he finally did, I heated up his dinner and then after a couple of games of Mario Kart, we all went to bed.
THURSDAY’S JOURNAL:
I decided not to send Ciara to school today, I am going to see if I can get an appointment at Kaiser, I just want to make sure she isn’t getting pneumonia again. Hunter woke up at 5:00 this morning and watched cartoons, I didn’t get up until 6:30. I got him dressed and made his lunch and then sent him off on the bus. At 8:25, Ciara had a big seizure, but she went back to sleep when it was over. John went to work and I just stayed in so that Ciara could sleep. I emailed her doctor at Kaiser and she called in a couple of antibiotic prescriptions for Ciara and Hunter, so I will have to pick those up tomorrow. Ciara slept all morning and afternoon. Hunter came home from school around 2:15 so he watched some cartoons and drank his apple juice. Mason walked over after school so he goofed around until 4:30, that is when I took him to his baseball practice. HE did say that he got a lot of compliments on his hair at school today, even the teachers liked it. Ciara finally woke up at 5:00 when I put her in the car, but she didn’t stay awake for very long. I took my mom to the store and then we went back home. I put Ciara on the couch, but she was a little fussy so I mover her over to the Tumble Form chair and she fell asleep. Hunter bounced from the couch to the recliner and was fairly happy, considering his poor little nose was running all over the place. Around 9:45 I hooked Ciara up to the feeding pump and gave them some decongestant and hopefully they will go to sleep soon. 
This Saturday, the city of Ione is having a City-Wide Yard Sale so we will be having a yard sale at our house, in case anybody is around.
Hugs To All and ^^Angel^^
Saturday, April 16, 2005 10:25 PM CDT
THURSDAY 8:25 AM UPDATE: Ciara just had a big seizure, but she is doing OK now, she is sleeping. I will update the journal this evening, sorry I haven't done it sooner, but everybody here has been sick.
TUESDAY’S JOURNAL:
Hunter didn’t want to wake up this morning so I had to dress him while he was sleeping and then help him as he stumbled to the school bus, poor little guy. After they left, I had to drive to Sacramento to pick up Ciara’s prescriptions at Kaiser. I called the refills in two weeks ago and last week I got a message that said they were ready. When I got to the pharmacy, they said that they didn’t have them because they were still waiting for the written prescription from the doctor. They said that I had to go to the doctor’s office and see if somebody there could write them, so that’s what I did. I told the receptionist what the problem was and she told me to have a seat and she would see what she could do. After a little bit, the nurse came out and said that the prescriptions were upstairs at the urgent care center, I have no idea why. I waited my turn and then the receptionist gave me the prescriptions, they were dated April 1. Why were they sitting up at the urgent care desk? I don’t get it. So, I went back to the pharmacy and turned them in and she said that it would be ready in 30 minutes. I waited, and waited, and waited and then Ciara’s name popped up on the screen so that meant that her prescriptions were ready. I got in the Pick Up line and waited again. I was almost to the front of the line when her name was taken off the screen, not a good sign. When I got up to the counter, they said that they didn’t have the drugs in stock. I know that it always takes a week for them to order the drugs so that is why I called the refills in two weeks ago, thank God I wasn’t low so she won’t run out, but they don’t know that. She said that it would be ready tomorrow, so fine, I’ll come back tomorrow. As I was leaving, she called me back and said it would be several days before they would be ready, what ever. KAISER SUCKS!!! I went back home a little bit before Hunter and Ciara came home from school. Ciara was a little fussy so I took her inside and started her feeding pump and she was happy. John didn’t get home until the evening, but he had to go back to work when they called and said they were ready for his load, they never called. Around 3:00 this morning John called them so he will have to leave in a couple of hours.
WEDNESDAY’S JOURNAL:
Today we are taking a trip to Lake Tahoe. John has been working a lot and I need to get out of the house so we are taking a little trip. John went to work early this morning so that he could be home by noon and I sent the kids to school. I spent the morning packing and getting ready and when John came home, we picked the kids up at school, dropped our dog at John’s dad’s house and we were off to Tahoe. We got there around 3:00 and we went up to our room. I must say, we got a great deal. We stayed at one of the casinos and we got the top floor, lake view, for only $30! Hunter jumped from bed to bed while I fed Ciara and John went down to check things out and see what was at the hotel/casino. When he came back up, I ran down, but I didn’t stay long because it was time for dinner. We went to the buffet downstairs and everybody ate very well. Ciara ate some watermelon and chocolate pudding and Hunter ate everything I put in front of him, plus he made three trips to the dessert bar. We went back up to the room and John stayed with the kids while I tried my luck with the slot machines. I was playing a machine when security paged me, uh oh! I called John and he said that Hunter was screaming so loud, that somebody called security to check it out and make sure John wasn’t killing him. I ran out to the van and grabbed the computer and DVDs so that Hunter would be quit. I stayed and watched my TV shows and John went downstairs for a while. He did very good at playing blackjack. He won what I lost so we came out about even for the trip.
THURSDAY’S JOURNAL:
When we woke up this morning we stayed in the room until around 10:00, then we checked out. We stopped to get something to eat and then started the two hour drive home. We stopped at the snow, but that was it, Ciara needed to stretch her legs. When we got home, Hunter was happy to watch cartoons again and Ciara was happy to lay down. John did some yard work outside and then in the evening, he went to load his truck for work. After dinner I gave the kids a bath and then it was time for bed.
FRIDAY’S JOURNAL:
Ciara woke me up around 5:00 this morning when she was having a seizure, but it wasn’t a very big one and she went right back to sleep. I decided not to send her to school, so I got Hunter dressed and he watched cartoons while we waited for the school bus. I was sitting at the computer, looking out the front window, when I had to sneeze. Now, my back had been hurting for a few days, but when I sneezed, I tweeked it very bad and I couldn’t move at all and the pain was shooting out to my lower leg. Of course, this is when the bus came and I didn’t know what I was going to do. I slowly got walked Hunter to the bus, but I couldn’t lift him up the steps and the bus driver couldn’t help because her back hurts to, so we just had to wait and pray that Hunter decided to go up the steps himself, which he did, eventually. I went back inside and sat in the recliner, that was a BIG mistake. I couldn’t move and I didn’t have the phone near so I was stuck laying there for about half an hour. Ciara was crying but there was nothing I could do for her, I was stuck. I finally was able to get up and I called John and told him that I couldn’t move because of my back. I was surprised when he called me back and said that he was on his way home, he said that I never cry so he knew that I was in a lot of pain so he is coming home to take care of the kids, thank God! My mom brought me some prescriptions for my back, but they didn’t help, darn it. My sister came over so she unhooked Ciara’s feeding pump for me and got Hunter off the bus when he came home and changed their diapers for me. Mason came over after school and we got some Chinese food. John had been out on a call for the fire department so I was happy that my sister was there to help. When John came home, Mason and my sister left and I took a nap while the kids watched some cartoons. That was about it for the evening, just relaxing and taking it easy.
SATURDAY’S JOURNAL:
When I woke up this morning, my back was feeling a little better, thank God, because John is going to be gone overnight so I have to lift the kids all day today. We were out of things to drink, so after I fed Ciara, I put the kids in the car. It was just about time for the baseball parade to start on Main Street, so I parked at the police dept. and we watched the parade, Mason was in it with his baseball team. I took some pictures of the team, but then I had to wait for the parade to be over so I could get my car out. I ran to the gas station to get some drinks and juice and we went back home. I got Hunter some breakfast and then my sister came over and we went to Mason’s baseball game. He did fantastic, both hitting and playing catcher! Hunter ate all of the snacks we brought and Ciara loved sitting in the sun, so much so that she fell asleep. After the game I took my sister to her friend’s house and then the kids and I went home. I hooked Ciara up to the pump and Hunter watched cartoons. We spent the evening watching TV and not doing much of anything. My back is feeling much better so I am happy. I just put up some new pictures so check them out!
Hugs To All and ^^Angel^^ 
Sunday, April 10, 2005 9:40 AM CDT
I hurt my back very bad this morning so I haven't been able to move. I was going to update the journal this morning, but I can't sit long enough to get it done. I am going to try and do it this evening so check back later on, thanks!
SATURDAY’S JOURNAL:
After the kids woke up this morning I fed them and got them dressed and we headed out to meet my mom and go to the store. When I left the store I went over to my dad’s, he is up for the weekend. He is at the lake so we went inside and talked for a while, but then we went out and sat on the deck. Ciara was on the lounger, just sunning herself like she was on the French Riviera while Hunter played on the porch. We stayed for a couple of hours so when it was around 5:00 we headed back home. I hooked Ciara up to the pump and watched a little TV. Later on Hunter and I had dinner and that was about it for the evening.
SUNDAY’S JOURNAL:
Ciara woke up early this morning, but she was in a good mood. Hunter was not going to wake up for anything, he was exhausted. John came home around 9:00 so I made breakfast and we played some Nintendo. He went out to mow the lawn so I did the dishes and started to get the kids dressed. By this time it was 12:00 and Hunter just woke up, was a lazy butt! I got him something to eat and then we put the kids in the car and went over to pick up my mom. Since it isn’t raining today and Ciara enjoyed being outside so much yesterday, we decided to go play some miniature golf. My mom called and asked what we were doing today and she said that she wanted to come with, she wants to play golf, so this should be pretty funny. We were all starving by the time we got to Sacramento, so we stopped for a bite to eat and then we went to Scandia to play. Of course they were busy, but everything moved along pretty well. I must say that I played fairly well, I got par on most of the holes, but John and my mom both got 2 hole in ones! Since tomorrow is my birthday, my mom tried to declare me the winner, but John wouldn’t have any of that, oh well. We got back in the car and headed back home. After we dropped my mom off, I ran into the grocery store to get some lunch items for school this week and we went home. I hooked Ciara up right away to her feeding pump and laid her down on the recliner. She was getting upset from sitting for so long so she was happy when we got home. Hunter was happy that he got to watch cartoons, that’s all he cares about. Later on we had some dinner and went to bed early.
Hugs To All and ^^Angel^^
Friday, April 8, 2005 5:25 AM CDT
TUESDAY’S JOURNAL:
Hunter didn’t want to wake up this morning for school, neither did I! I got up around 6:00 and fed Ciara, made their lunches and got them dressed. Hunter was grumpy when I put him on the bus, but Ciara was wide eyed and looking around and chatting. I honestly can’t tell you all how happy I am, I sit here with a smile on my face because she is so happy these days. After they left I had to go rent a carpet cleaner because the dog threw up on the floor. So I spent the morning cleaning and then I had to run out to do a few things for my mom. The kids came home around 2:30 and they were both happy as could be. I brought them inside and we goofed around for a while and John came home not long after that. I baked some chocolate chip and sugar cookies for the fire department dinner tonight. We got there at 6:00 and we had Mexican so Hunter was pretty happy with that and he ate a lot. He also ate several cookies. Ciara was very alert and watching everybody. I decided that I would try to give her a cookie. I have been wanting to try giving her solid foods again but I have been afraid. The doctor said that since they tied off her stomach so nothing could come back up, sometimes food can’t go down and it needed time to heal. Up until now, Ciara hasn’t even been able to chew, but since she has been doing so well, I wanted to try and see how she did, but I didn’t want to do it at home when I was alone, just in case she choked or something. So, I figured that since we were at the fire department and there were 20 firemen and medical people, I would give it a try. I took a chocolate chip cookie which was still soft and gooey from the oven and I gave her little tiny pieces and she loved it! I only let her eat half of the cookie but she did very well, I was so happy! After the dinner, it was time for their meeting so John told them about Ciara’s feeding tube and showed it to them, just so everybody knows about it in case they are called out to our house for something. I took the kids home while John stayed for the rest of the meeting. We watched TV and then after John came home, we all went to bed.
WEDNESDAY’S JOURNAL:
Hunter actually was awake and watched Barney before the bus came to get them this morning. After they left, I had some breakfast and then ran out to get some things done for my mom. When I got back home I did a little cleaning and then the kids came home. We didn’t really do much for the rest of the afternoon. We had some dinner and then John came home around 8:00 or so. We watched a little more TV and then everybody went to bed.
THURSDAY’S JOURNAL:
The kids went to school this morning and John isn’t working today so I didn’t do much all morning. We did go to the fire department to drop off some things for the fire chief and his son was having a birthday party there. I helped blow up the balloons and stuff and then around noon, John and I went out to get Kenny a present. We went to Wal-Mart and when we were getting back in the car, I noticed that we had a flat tire. We drove around the back of Wal-Mart to the tire center and we had to wait for them to fix it. Of course by the time they fixed it, we were late getting home to get the kids off the school bus and we missed the party. We called the bus and they brought the kids back home and then we ran by the fire department, but little Kenny was gone. We did get the kids’ pictures taken with Pluggie The Hydrant. Pluggie is a remote controlled little guy and he is so cute! We stopped by Kenny’s house to drop off his present and then we took the kids home. I hooked Ciara up to her feeding pump and Hunter had a snack and watched cartoons. John was doing something out in the backyard and then he came in with the cutest little kittens. They couldn’t have been more then a couple days old, they still had their umbilical cords on them. He found them under our shed so he put them back and is going to keep checking on them to make sure the mother is taking care of them. In the evening we had dinner, watched some TV and went to bed.
FRIDAY’S JOURNAL:
I didn’t wake up until 6:00 this morning so I had to rush around to get everything done. That is why I wasn’t paying attention to Ciara’s feeding and I over fed her, that didn’t make her happy. She was fussing because her tummy hurt, but there was nothing I could do about it now. I got Hunter dressed and sent them off to school. I had a quick bite to eat and then I had to get out and get some things done. I called the school to tell them that I over fed Ciara so she might be fussy and she didn’t sleep last night, but they said that she was happy and doing good. After I ran my errands, I came home and started making a stew for dinner. The kids came home early today, at 2:00, they usually don’t get home until 2:30. Hunter bounced around the room and watched TV while Ciara took a nap. I thought it was odd because she hasn’t taken a nap for almost 2 weeks so it concerned me. John came home for about half an hour, but then he had to go back to work, he isn’t coming home again until Sunday so the kids and I are taking it easy. Before he left he went out to see if the kittens were OK and the mother was with them and growled at him, but they were still there, then John left. The last thing that I remember is that it was about 8:00 and then I woke up at 2:00 this morning. Five minutes later, Ciara had a seizure, but not too bad. I changed their diapers and they both went back to sleep. While I was up, I hooked Ciara up to the feeding pump and then I watched some TV. I just put up new pictures so check them out!
Hugs To All and ^^Angel^^ 
Monday, April 4, 2005 10:09 AM CDT
I have some good news to share! I am sure that most of you will remember our little buddy Harmen who went thru transplant with Tommy, they are from the Netherlands. Well, Harmen has a new baby sister who was born todayand she is Sanfilippo free! Her name is Hanna so please stop by and send your congratulations Harmen's Journal
FRIDAY’S JOURNAL:
Ciara woke me up at 4:15 this morning when I heard her having a seizure. When it was over, she went right back to sleep. She had another one about an hour and a half later, this one was a little bigger, but again, she went right back to sleep. I got Hunter ready for school and sent him on the bus. While I had Ciara hooked up to the pump, she had a third seizure, this one was pretty big. When it was over, I unhooked her and she was just a rag doll. I don’t think that she has ever been like that before. She slept all day long but she hasn’t had any more seizures. When Hunter came home from school I got him a snack and he watched some cartoons. John came home so I picked up Mason from school and he stayed for a couple of hours. Later on I took him home and when I came back, Ciara was awake. She has been very alert and sitting up from a flat position which has always been very hard for her. After dinner she was sitting on the couch and chatting away, yeah!
SATURDAY’S JOURNAL:
Ciara woke up at 5:00 this morning, but she was happy. I hooked her up to the feeding pump and she watched some cartoons. John will be gone tonight so the kids and I don’t have any plans for the day. Ciara has been doing so good lately, I can’t even tell you the differences in her. She has been bright eyed and bushy tailed and so much fun! She has been talking and smiling, sitting on the edge of the couch watching TV, grabbing Hunter and making him mad and walking a lot. I think that if she keeps going on like this, she might even be able to take some steps on her own soon, without me holding on to her, she really seems like she wants to. I have been on cloud 9 because it's like I have Ciara back again. I don't know if it is a coincidence or not, but for the past three days I have been giving Ciara Glucosamine and Fish Oil so I don't know if that is why she is doing better or not, but I don't care, as long as she is happy, I am happy. Since she is so alert today I thought I would take the kids out of the house, but I didn’t feel like dragging them thru a store. I put them in the car and we went to Sacramento. Hunter fell asleep as soon as I put him in the car, but Ciara was looking out the windows and didn’t nap at all today. I grabbed a bite to eat and we went home. Ciara played and watched cartoons, I mean she REALLY watched the TV. In the evening we had dinner and around 9:00 I put Ciara in the recliner and hooked her up to the feeding pump and a few minutes later, she was asleep.
SUNDAY’S JOURNAL:
Hunter and Ciara woke up at 5:00 this morning so I put on some cartoons and I tried to get a little more sleep, didn’t really happen. John isn’t working today so we just stayed home and took it easy, it is raining today. Ciara is having another great day, but Hunter got a little grumpy in the afternoon, he was tired. In the evening we decided to watch a DVD so I put dinner in the oven and started the DVD and then it happened. Two minutes later the power went out. A huge storm passed over with thunder and lightening. Hunter is afraid of the dark and he goes insane if the TV isn’t on so we decided to go for a drive. We drove around and the whole town is out of power. We drove to Jackson to get something for dinner, since we couldn’t eat the raw steak in the oven. Martell was out of power and half of Jackson was too, it was a huge outage. We went thru the Taco Bell drive thru and then got Hunter something at McDonalds and we headed back home. Just as we were turning on to our street, the power came on, thank God! I took the steak out of the oven and I was surprised that it was cooked! I put it in the fridge so John could take it to work with him tomorrow. We didn’t do much for the rest of the night.
MONDAY’S JOURNAL:
After I sent the kids off to school this morning I went out to get a few things done. I also had to meet my mom and help her for a while too. I stopped by the school to drop off some goodies and everybody was surprised at how good Ciara looked and alert she was. Hunter was eating lunch when I got there so he didn’t want to be bothered. I went back home and waited for the kids to come home from school. When the bus pulled up, Ciara was looking around and happy. Hunter got off the bus laughing and chattering away. My sister came over so she stayed with the kids while I picked up Mason from school and got him a snack. She left but Mason stayed and goofed around for a while. At 5:00 I put everybody in the car and we headed to the movie theater. My sister and my mom met us there, they had free passes for the movie. We decided to try and see “Robots” again, Hunter screamed for 20 minutes last week when we went and we had to leave. Of course he screamed again this time so my sister took him for a walk. Ciara just stared at the screen, she had a great time! When we were walking out to the car, she started laughing and bouncing around, it was so funny. I took Mason back to his dad’s house and the kids and I took it easy for the rest of the evening.
Let us know you were here!
Hugs To All and ^^Angel^^
Tuesday, March 29, 2005 0:53 AM CST
SATURDAY 11:30 PM UPDATE: First off I would like to appologize for not updating sooner, but I have been sick and very tired for the past few days. But, for some good news, even though Ciara had three big seizures yesterday morning, she is doing very well. Last night she was very alert and sitting up from a flat position which has always been very hard for her. Today she woke up at 5:00 AM and didn't take a nap all day long. She has been bright eyed and bushy tailed and so much fun today! She has been talking and smiling, sitting on the edge of the couch watching TV, grabbing Hunter and making him mad and walking a lot. I think that if she keeping going on like this, she might even be able to take some steps on her own soon, without me holding on to her, she really seems like she wants to. I have been on cloud 9 all night because it's like I have Ciara back again. I don't know if it is a coincidence or not, but for the past three days I have been giving Ciara Glucosamine and Fish Oil so I don't know if that is why she is doing better or not, but I don't care, as long as she is happy, I am happy. I promise I will update the journal tomorrow evening.FRIDAY 11:00 AM UPDATE: Ciara had three big seizures this morning in a three hour period. They really wiped her out, I have never seen her like a rag doll before, it kind of scared me. I didn't send her to school today because I didn't know if she was going to have more. So far she hasn't and she is doing better. I JUST PUT UP SOME NEW PICTURES SO CHECK THEM OUT!
SUNDAY’S JOURNAL:
HAPPY EASTER!!!
As usual, I hooked Ciara up to the pump when I woke up this morning. Then I finished making the Easter baskets and stuffed the plastic eggs for the egg hunt later on. Around 10:00 we went out to breakfast with my mom and Ciara looked so good. She was sitting up straight and very alert, it was so good to see her like that again and she ate so fast! Hunter was pretty happy to be out of the house too and he ate very well also. After breakfast we took my mom home and then we headed out to Sacramento to John’s sister’s house for Easter. Ciara didn’t do the egg hunt, but Hunter found a few. He wasn’t too interested in it so we let him go back in the house and watch cartoons. Everybody had dinner and then Ciara ate a piece of strawberry pie and she loved it. We didn’t stay too long after that because Ciara was started to have those seizure-like episodes again so we went home. They got worse as the evening went on and by late that night, she was flapping her arms and kicking her legs a lot, but eventually I did get her to go to sleep.
MONDAY’S JOURNAL:
We woke up around 8:00 this morning so I started Ciara’s feeding pump and she and Hunter watched some cartoons. John is doing an overnight haul so he won’t be coming home today. The kids and I didn’t do much today. Around noon we went out to help my sister find the car keys that she lost the day before. It took a couple of hours, but we finally found them. I then drove back to Ione to pick up Mason and take him to her house, then I went back home. We didn’t do much of anything for the rest of the day. In the evening we had dinner and then I gave the kids a bath before I put them to bed.
TUESDAY’S JOURNAL:
I woke up around 5:15 this morning and started Ciara’s feeding pump so that she would be finished in time for the school bus. After she was done, I got the kids dressed, made their lunches and sent them on there way. I can’t tell you how happy I was to see that bus drive away and I actually have some time to myself today! Hunter has been home for the past two weeks because of Spring break, but Ciara has been home for two months so I can’t wait to get out of this house! I was starving so I put some fried rice in the microwave and then Mason called me and asked if I could take him to school because it was raining so I did. When I got home, I found the dog had opened the carton and ate my rice, I was so mad! I didn’t have time to make anything else to eat because I had to get to school and show them how to feed Ciara with her feeding tube. On the way, I stopped at McDonalds and grabbed an English muffin and then went to school. They were eating breakfast so I showed them how to feed Ciara and then I left. I ran to the grocery store and then went home. I made a big pot of chili and a meatloaf so I won’t have to cook for a few days, I put some chili in the freezer. The kids came home around 2:30 so I hooked Ciara up to her pump and finished putting the food away and washed the dishes. It was some time after 3:00 when I heard a knock on the door, it was Mason. Nobody picked him up from school so he walked over to our house, not sure why, his dad’s house is closer. Anyway, he came in and had a snack played on the computer and then we played some Nintendo. John came home a little after 5:00 so that is when I took Mason home. When I got back home I fed everybody and then I laid down because I wasn’t feeling well all of a sudden. I had the aches and I just felt like I was getting sick. About an hour later I was boiling hot and then another hour later, I was feeling a little better. I made myself some soup and watched “The Amazing Race” before I put the kids to bed. It is now 11:00 and I am hoping that Hunter will go to sleep soon, Ciara is already asleep.
Hugs To All and ^^Angel^^ 
Saturday, March 26, 2005 0:08 AM CST
TUESDAY 7:20 AM UPDATE: I just put the kids on the school bus, yippee!!! Hunter has been out of school for the past two weeks for the Spring Break. Ciara has been home for the past two months so I can't tell you how happy I am that they BOTH went off on the bus this morning! Ciara has been doing very well the past couple of days, although she had a very rough night on Easter. I am going to update the journal this evening and I will add some new pictures so be sure and check back later tonight!
FRIDAY’S JOURNAL:
TODAY IS HUNTER’S 7th BIRTHDAY!!!
Ciara didn’t have any seizures during the night and she has had only one since she woke up this morning so I am so happy that she is finally getting a little better. After we had some breakfast I got the kids dressed and we drove to Stockton to get John’s paycheck and then we went back home. My mom called and asked if I could take her to get a few things done, we I put the kids back in the car and we headed out to pick her up. My dad moved to Monterey a couple of weeks ago but he called and asked if I could pick up his prescriptions and mail them to him so I did that while we were out too. After we finished with our errands, I took my mom home and then took the kids home. I got Hunter a snack and hooked Ciara up to her feeding tube and we watched some TV and took it easy for a while. I got a few things ready for Hunter’s birthday party tomorrow and then in the evening we had dinner. Ciara has been doing very well today, she has had a few seizures, but nothing like it was for the past week so things are looking better. Around 9:30 tonight I was just standing next to Ciara, about to hook her up to her feeding pump, when I heard her make a noise. It startled me because she hasn't made a noise in a long time. I looked at her and she was giggling and smiling! She smiled a few more times, but I wasn't fast enough with the camera and I missed all of them, darn it. I can't tell you how happy I am to see that again! IT IS DEFINATELY A GOOD FRIDAY! After I finished feeding her and playing with her, she went to sleep but Hunter fussed for a while before he finally fell asleep.
SATURDAY’S JOURNAL:
Ciara didn’t have any seizures all night long, again!!! When she woke up I changed her diaper and she pooped, she hadn’t for a couple of days. This one was a “normal” one so it looks like things are working better for her and she is finally starting to digest her feedings so that makes me happy. Hopefully now she can gain some weight back. I ran to the grocery store to pick up a couple more things for the party bags. When I got there, they told me that Hunter won their Easter coloring contest! They made up an Easter basket for him, it is so cool! When the kids woke up, I fed them, put them in the bath tub, and dressed them. We left the house around 11:00 so I ran to the store to pick up a few things and then I had to pick up the birthday cake. After that we went to the bowling alley and got everything set up for the party. We had so much fun at the party! There were about 15 kids that came so they all bowled and then we had lunch, cake, and opened presents. By the time it was “present time”, Hunter was exhausted and looked like he was about to fall asleep at any moment. That was, until he noticed the Barney presents he got, then he woke up a little bit. By now it was 3:00 or so and it was time to go. I must say that our little friend Scotty is just too cute for words! Scotty has Hunter’s which is one of the MPS disorders and he just had so much fun bowling, it made my day to see him! We went back home and hooked Ciara up to her feeding pump and Hunter took a little nap. While he was sleeping, I ran to Wal-Mart to get some things for Easter. The bowling alley called and said that somebody from our party left a camera behind so I picked it up. If you are missing your camera, give me a call because I don’t know who it belongs to. Ciara fell asleep early and Hunter bounced around the living room all night watching cartoons. It is now 10:20 and I am going to see if I can get them to go to bed because tomorrow is going to be another big day!
THE JELLY BEAN PRAYER...
RED is for my love for you that will never sever....
For love is not measured by the time we had together...
but whats in our hearts forever.
GREEN is for memories that I always will treasure...
Although time may pass...our memories will last
...forever and ever and ever.
YELLOW is for Sunshine that you have gave to me....
You brightened up my life and made my world shine
And will continue to shine brilliantly for the rest of time.
ORANGE is for the candles flame I light in memory of you...
Flame that glows so bright as I speak your name in prayer...
Asking God to hold you close...until I join you there.
BLACK is for my grief from my broken shattered heart
Taking each day one at a time...as I keep your memory alive....
Life is different...I am different...but I CAN and WILL survive.
PURPLE is for tears I shed as I remember you....
Precious memories you left behind....preserved deep inside...
You will always live on through our family...forever by our side.
WHITE is for my hope and faith in God above...
The promise of resurrection....knowing we will reunite....
Above the clouds...over the rainbow....in His everlasting light.
PINK if for the signs you send from Heaven up above...
Lighting my path wherever I go...and whatever I may do...
My precious child...I will always love...and always remember you.
Remembering you on Easter....as always
Hugs To All and ^^Angel^^ 
Friday, March 25, 2005 10:41 AM CST
FRIDAY 9:30 PM UPDATE: I was just standing next to Ciara, about to hook her up to her feeding pump, when I heard her make a noise. It startled me because she hasn't made a noise in a long time. I looked at her and she was giggling and smiling! She smiled a few more times, but I wasn't fast enough with the camera and I missed all of them, darn it. I can't tell you how happy I am to see that again! IT IS DEFINATELY A GOOD FRIDAY!
Happy Birthday Hunter!
WEDNESDAY’S JOURNAL:
John went to work at 4:00 this morning and he said that when he left, Ciara was on the couch and watching TV, which is what she was doing when I woke up at 6:30. I noticed that she slept all stretched out last night instead of all curled up so I was very happy to see that. Plus, I know it sounds gross, but when she pooped this morning, it wasn’t runny like it has been for the past few days so I think that she is getting used to the new formula she started yesterday and they way that I changed the timing of her feedings, woohoo! She took a little nap so I fed her while she slept and then around 11:30 I fed her some yogurt and she sat on the edge of the couch all by herself. She was sitting straight up, not falling backwards or tipping over to the side, straight up, yippee!! Right now she is sitting on the edge of the couch, chewing on her finger, and watching Rugrats. I can’t tell you how happy I am to see her coming back to us!! We spent the day at home, John isn’t coming home tonight and it is raining so we are just staying in, although I did run to the grocery store. In the evening we had some dinner and watched some TV. Around 9:00 I was about to hook up Ciara to her feeding pump when I noticed that Hunter was sitting on the doorway of the bedroom, he was very quiet, so I knew something was up. I went in there and saw that he had some white mushy stuff in his mouth. I had no idea what it was, I couldn’t find anything. I tried to fish out what I could, but he had already swallowed it all. Finally it dawned on me, he ate my deodorant stick. I called Poison Control and they said that there was nothing to worry about. Even if he ate the whole stick, it wouldn’t hurt him. I gave him a cup of juice and he watched some cartoons before he went to bed. At 11:00 tonight Ciara started having those seizure-like episodes again. All night long she had them, every 5 minutes, and she didn’t get any sleep.
THURSDAY’S JOURNAL:
Ciara didn’t sleep at all last night and I think she finally got a couple of hours this morning. Hunter fussed all night too, but he was happy when he woke up this morning. I made some breakfast and he watched his cartoons. Ciara is still having the seizures, I am not sure what to do about it. John came home around noon, but he has to go back to work in a few hours. He is going out overnight again and he will also be gone tomorrow night so that he can be home in time for Hunter’s birthday party on Saturday. While he was home, I ran to the store and then dropped off some lunch for Mason and then when I got back home, John left for work again. Ciara is still having seizures and Hunter is still running around crazy. My mom wanted to take Hunter to the movies for his birthday so we decided to go today. We got to the theater at 5:00 and we were going to see “Robots.” Hunter was doing alright, until the preview for the new “Star Wars” movie came on and scared him. He screamed and cried and it didn’t stop when the movie started. We spent the first 30 minutes of the movie walking in the back of the theater and in the lobby, then I just decided to take him home. Nobody else needed to listen to him scream. I dropped my mom off at her house and we went home. We had some dinner and then I fed Ciara. I bought some baby food, mixed it with water to thin in out, and put some salt in it and then put it thru her tube. I haven’t tried it before, but it worked great. I remember when Tommy was in the hospital, the doctor said that low sodium can cause seizures and then a friend reminded me of that yesterday so I am going to give her some salt and see if it helps. Around 8:30 or so, Ciara’s seizures weren’t every 5 minutes anymore, they were just one long non-stop seizure for about an hour and a half. I don’t want to take her to the emergency room in Sacramento and have to deal with her and Hunter by myself, we would be there for hours and I just couldn’t do it. I called my friend so is a nurse at Kaiser and I talked to her, thanks Karen! I gave Ciara her night time seizure med and then around 11:00 or so, the seizures started to slow down and around midnight she was sleeping, seizure free. For those of you who live here, there is a new store that opened yesterday. The name of the store is “A Second Look” and the store will be donating a percentage of their sales to us, so stop by and see what they have, it is on Main Street in Ione! HUNTER'S 7th BIRTHDAY PARTY!!! Hunter's birthday is TODAY and we are having his birthday party tomorrow, March 26, at the Gold Country Lanes. For those of you who can come, Hunter is wearing a size 7 pant with elastic in the waist and size 7/8 shirts. You can also visit his Wish List by clicking here: Hunter's Wish List I have been having trouble getting this link to work so you can also click on the link down at the bottom of the page under LINKS where it says "Birthday & Holiday Wish List."
Hugs To All and ^^Angel^^ 
Tuesday, March 22, 2005 10:19 AM CST
THURSDAY 7:00 AM UPDATE: Last night at 11:00, Ciara started having those seizure-like episodes again. They happened every 5 minutes, all night long. I am going to increase her seizure meds today and see if it makes a difference, wish me luck!
WEDNESDAY 9:00 PM UPDATE: I just had to call Poison Control because I found Hunter sitting on the floor in the bedroom with white stuff in his mouth. Apparently he decided to eat my deodorant so I read the back of the stick and it said to call Poison Control. They said that he would be fine, he only ate a mouth full. They said that even if he ate the whole stick, it wouldn't hurt him, SHEW!!! I am afraid to find out what's going to happen around here next! WEDNESDAY 11:45 UPDATE: John went to work at 4:00 this morning and he said that when he left, Ciara was on the couch and watching TV, which is what she was doing when I woke up at 6:30. I noticed that she slept all stretched out last night instead of all curled up so I was very happy to see that. Plus, I know it sounds gross, but when she pooped this morning, it wasn’t runny like it has been for the past few days so I think that she is getting used to the new formula she started yesterday and they way that I changed the timing of her feedings, woohoo! She took a little nap so I fed her while she slept and then around 11:30 I fed her some yogurt and she sat on the edge of the couch all by herself. She was sitting straight up, not falling backwards or tipping over to the side, straight up, yippee!! Right now she is sitting on the edge of the couch, chewing on her finger, and watching Rugrats. I can’t tell you how happy I am to see her coming back to us!!
MONDAY’S JOURNAL:
Ciara woke me up at 5:45 this morning when I heard her having a seizure. It wasn’t a very big one and when it was over, she went right back to sleep and so did I. John went to work this morning and I watched a little TV before Ciara woke up again. Hunter was lazy this morning and he slept until 9:30 or so. After breakfast, and a little TV, I spent the rest of the day with Ciara. She is having seizure-like episodes every 5-10 minutes and she is crying and fussing a lot. In the afternoon my sister called and said that Mason wanted to go bowling so I met them at the bowling alley. Ciara did OK, but still had several episodes while we were there. Hunter was so happy to be out of the house, he was insane! He was laughing and chattering so loud, I thought we were going to get in trouble. I got him some french fries and we watched Mason and his friend bowl a couple of games. It was time to get Ciara back home, it was around 4:00 by this time. When I got her home I fed her, but she was just having such a hard time. I called John to tell him how Ciara was doing but he isn’t coming home tonight so I called my sister and asked her to come over and help me. It was raining very hard still but I needed to go to Sacramento to pick up the seizure meds the doctor just called in for Ciara. So my sister went with me so I didn’t have to take the kids into the hospital with me. When we got home I gave Ciara her new med, but she still had a lot of seizure activity going on all night long and she was crying and fussing.
TUESDAY’S JOURNAL:
Ciara didn’t get any sleep last night, she was awake because she was still having seizures every 5-10 minutes. I think she finally fell asleep around 6:00 so I didn’t wake her up at all, she was exhausted. While she was sleeping I hooked her up to her feeding pump. When Hunter woke up, had some breakfast and watched some TV. Around 11:00 I baked some sugar cookies and Hunter was pretty happy about that. I had put colored sugar on top of them with home colored sprinkles and he pulled off all of the sprinkles and ate them before he ate the cookie, he is so funny. A little while later, the UPS guy dropped off some boxes but I wasn’t expecting anything. I opened the big box and there were three removable trays for Ciara’s new wheelchair. We haven’t received the wheelchair yet, but I am hoping that this means it will be here soon. It is going to be the ugliest thing I have ever seen, but she will be so much more comfortable in it, especially when she goes back to school next week. In the afternoon we were watching some TV when the satellite went out, the power flickered, and the thunder started. It has been raining for a few days, but all of a sudden it hit hard. When the satellite came back on, I put the news on and the weatherman was showing the big orange storm that was hitting Ione. I lit some candles in case the power went out and hoped for the best. It hit pretty hard for a while, the dog was cowering in the office because of the thunder, but the power never went out, thank God! Ciara finally woke up around 4:00 this afternoon, she really needed some sleep. I got her up, changed her, and then fed her some applesauce and gave her the seizure med. What a difference a day, and the seizure med, makes. She looks more like Ciara again today. I know that the Terri Schiavo case has been on the news so next time they show it, I want you all to look at Terri’s hands, how they curl up. Ciara looked just like Terri, from head to toe for the past few days and it broke my heart to see her like that, Ciara just wasn’t there anymore. But, today she is sitting up and watching TV, looking around, and chewing on her fingers again. Her hands aren’t curled up anymore and she just looks so good, yippee!!! John came home around 5:00, just as I was putting Ciara in her Tumble Form chair, so I ran to the grocery store so I could get something to make for dinner. Around 6:00 John had to go load his truck for work so when he came home, I made dinner. Hunter had some more cookies after dinner and then I turned on some cartoons for him in the bedroom, that got him out of my hair for a little while. Ciara fell asleep again early so I hooked her up to the feeding pump and watched a little TV. Hunter was so tired but he just couldn’t fall asleep. He kept crying and fussing, I think he finally fell asleep around 2:00 this morning. 
Please let us know you were here! For those of you who live here, there is a new store opening on Thursday. The name of the store is “A Second Look” and the store will be donating a percentage of their sales to us, so stop by and see what they have, it is on Main Street in Ione! HUNTER'S 7th BIRTHDAY PARTY!!! Hunter's birthday is on March 25 and we are having his birthday party on March 26 at the Gold Country Lanes. For those of you who can come, Hunter is wearing a size 7 pant with elastic in the waist and size 7/8 shirts. You can also visit his Wish List by clicking here: Hunter's Wish List I have been having trouble getting this link to work so you can also click on the link down at the bottom of the page under LINKS where it says "Birthday & Holiday Wish List."
Hugs To All and ^^Angel^^
Sunday, March 20, 2005 11:27 PM CST
TUESDAY 1:00 PM UPDATE: Ciara didn't have a good day yesterday. She woke me up at 5:45 in the morning when I heard her having a seizure. It didn't last long and she went right back to sleep. For the rest of the day, she continued to have seizure-like episodes every 5-10 minutes. In the evening I drove to Sacramento to pick up her seizure meds at the pharmacy and I gave it to her when we got home. She didn't get any sleep last night because the seizures where happening about every 5 minutes. I think she finally fell asleep around 6:00 this morning and she is still sleeping right now, she must be exhausted. I will update the journal tonight so check back to see how she has done today. DON'T FORGET TO SIGN THE GUESTBOOK AND LET US KNOW YOU WERE HERE, THANKS! 
OK, I just can't sit here anymore without saying something about the Terri Schiavo case. I don't know this woman, but John and I sit here and cry every day for her. I am so angry with her husband for taking her feeding tube out. He never said one word about her "wanting to die" until 7 years after she became this way. He hadn't said anything until he won the $1 million suit. I saw how Ciara was for that week that she wasn't eating or drinking, I saw what she went thru and how she felt and I have seen the change in her since we got her feeding tube put in. I can't imagine what Terri is feeling right now and my heart breaks for her family. I know that I shouldn't say anything about this here, but I just can't help it. To let her starve is just cruel! To offer support for Terri and her family, please stop by their website and write them a little note, Terri's Fight Website
SATURDAY’S JOURNAL:
I don’t think I got to bed until 1:30 this morning because Ciara was fussing. She fussed on and off all night and then was awake and crying at 5:00 this morning. I did everything I could think of to make her happy, but nothing worked. Finally around 7:00, she fell asleep in the recliner. I decided to decrease the volume of her feeds. She will be getting the same amount, but just at a slower rate and hopefully that will help her tummy issues. John won’t be home until 5:00 or so and it is raining outside so the kids and I aren’t going anywhere today. Hunter and I watched DVDs all day and goofed around. Ciara slept all day, I had to check her several times to make sure she was breathing because she was just so quiet. I think that since I changed her feedings, she isn’t hurting as much and this is the first time that she has been comfortable enough to actually relax and get some sleep, so I just let her sleep all day. When John came home I made dinner and then after we watched some TV, he went over to his cousin’s house. I got the kids to go to sleep around 10:00 and I was sleeping not long after that.
SUNDAY’S JOURNAL:
I woke up around 8:00 this morning and it was great! After we had some breakfast, it was bath time. This was Ciara’s first bath since her surgery so it was very fast, I didn’t want her in the water too long. Around noon we headed out to Jackson because this weekend is Dandelion Days and since the kids have been in the house forever, they will be happy to get outside. Of course it hadn’t rained all day, but after we were there for 10 minutes, it started raining so we went back to the car. We took a little drive and then headed home. Ciara was a little fussy today, but not bad. Hunter has just been a pill today, he has been into everything and just being a pest. He hasn’t been bad, just very energetic and curious. We watched some TV, played some games, Ciara napped and then we had dinner. It is now 9:40 and Ciara is sleeping in the recliner while her feeding pump is running and Hunter is watching cartoons and bouncing from the recliner to the couch. As soon as the comforter comes out of the dryer, I am going to see if I can get my little red headed ball of fire to go to bed. For those of you who live here, there is a new store opening on Thursday. The name of the store is “A Second Look” and the store will be donating a percentage of their sales to us, so stop by and see what they have, it is on Main Street in Ione! HUNTER'S 7th BIRTHDAY PARTY!!! Hunter's birthday is on March 25 and we are having his birthday party on March 26 at the Gold Country Lanes. For those of you who can come, Hunter is wearing a size 7 pant with elastic in the waist and size 7/8 shirts. You can also visit his Wish List by clicking here: Hunter's Wish List I have been having trouble getting this link to work so you can also click on the link down at the bottom of the page under LINKS where it says "Birthday & Holiday Wish List."
Hugs To All and ^^Angel^^ 
Friday, March 18, 2005 1:32 AM CST
HUNTER'S 7th BIRTHDAY PARTY!!! Hunter's birthday is on March 25 and we are having his birthday party on March 26 at the Gold Country Lanes. For those of you who can come, Hunter is wearing a size 7 pant with elastic in the waist and size 7/8 shirts. You can also visit his Wish List by clicking here: http://amazon.com/gp/registry/30BAB08DWZ8BE I have been having trouble getting this link to work so you can click on the link down at the bottom of the page under LINKS where it says "Birthday & Holiday Wish List."
THURSDAY’S JOURNAL:
The kids and I woke up at 6:00 this morning so we watched some cartoons, took a bath, and then we were off to Sacramento to see the surgeon. I was told that the doctor would fit us in between patients so by the time that we got there, found a parking place, registered and walked to his office, it was 9:15. The nurse said that the doctor had just scrubbed into surgery so he would be about an hour. Ciara was fussing and I didn’t want to wait that long, but what choice did I have. Ciara pooped so I had to change her diaper and while I was doing that, the nurse called over to Dr. Cannon’s office and his nurse came over to see Ciara. She is the one that does all of the feeding tube stuff and I really like her. She took off one of the spacers from Ciara’s feeding tube so that should cause less irritation to her tummy. She also changed her formula to one with more calories and gave me a few other things for her and then we left. On the way home we stopped by John’s sister’s work to visit. Ciara was a little fussy, but Hunter had a good time. We didn’t stay too long because Ciara wasn’t happy so we went home. When I got home I had to call and make a doctor’s appointment for John because he called and said that his gland was swollen and it hurt. He came home a few minutes later and we played a game of Mario Kart and then he had to go to his appointment. Ciara was fussing this afternoon so I gave her some Motrin and she seemed a little better. In the evening we had dinner, and then I fell asleep in the recliner around 7:30 and then I woke up at 9:30 so I changed some diapers and everybody went to bed.
FRIDAY’S JOURNAL:
After the kids woke up, I fed Hunter and hooked Ciara up to her pump and we watched some TV. Around 9:00 I got everybody dressed and we headed out to Stockton to drop off some papers at John’s work. We were half way there when John called and said that he was going out overnight and he needed his overnight bag and some clean clothes so I went back home to get his things and then headed back out again. John met us at the yard so I dropped off the papers and then gave him his things. He headed out to Southern Calif. and the kids and I went back home. Ciara did very well in the car, she only got fussy when we were almost home, but she had been sitting up in the car seat for about 3 hours so that was great. I took her inside and changed her diaper and then we went out to the grocery store and then back home. I put her on the couch and then hooked her up to her feeding pump while Hunter watched some cartoon and ran around the living room. My mom called around 3:00 and said that she needed a ride home from the hair salon but I told her she had to wait until Ciara’s pump was done so around 3:45 I put the kids in the car and we picked her up and took her home. When we got back home I put Ciara in her Tumble Form chair and Hunter bounced around the house. I emailed the surgeon and Ciara has had diarrhea for the past couple of days, 4-5 times a day and I was wondering if that was normal. He said that it was probably normal and that about a third of the children develop what we call "dumping syndrome". In short, now that she is not continuously refluxing, the formula must go down (into her intestines) promptly with each feed. The intestines are not really used to that and the relatively rapid influx of formula results in distension, fluid shifts into the intestines, and often hypoglycemia. We see this clinically as sweating shortly after feeds, irritability during and after feeds, occasionally retching (dry heaves), and lastly diarrhea. Most of the time this passes within a few days to weeks. We had some dinner, watched some TV and then around 8:00 I fed Ciara and then hooked her up to her pump again. It is now 11:45 and I am going to see if I can get the kids to go to sleep. I have noticed that since Ciara got her feeding tube, she isn’t sleeping all the time, she isn’t even taking a nap during the day, so that is a good thing.
Hugs To All and ^^Angel^^ 
Tuesday, March 15, 2005 10:46 AM CST
THURSDAY 1:00 PM UPDATE: I took Ciara to see the doctor about the redness around her feeding tube. It is not an infection, thank God! I will update the journal this evening so check back for the full update, thanks!
WEDNESDAY 7:30 PM UPDATE: Ciara’s tummy around her feeding tube was a little red this morning so I called the doctor’s office and I got the answering machine. I hadn’t heard back all day but I finally got a hold of them at 4:30 this afternoon. By that time it had gotten more red so I have to bring her in at 9:00 in the morning. I will update when we get home. OK, now get this everybody. I just got a bill in the mail and apparently Tommy wasn’t feeling very well and on February 4, 2005 (last month), he went to see the doctor. They even billed an insurance company that we haven’t had for the past 5 years. I sure hope that Tommy is feeling better by now! Tomorrow I am going to call the doctor’s office and ask them how Tommy looked when they saw him and that next time they see him, they should call us because we want to see him too!
SUNDAY’S JOURNAL:
I woke up at 1:00 this morning and couldn’t go back to sleep but I couldn’t turn the TV on either so I was SOOOO bored!!! Ciara woke up a few minutes later, but she wasn’t fussy. She laid next to me and chewed on her IV arm board and was happy as can be. At 2:00 it was time for her pain meds and that usually puts her to sleep, but of course it didn’t this time. I was hungry and bored and I wanted to get out of the room for a little bit but I was hoping she would fall asleep. Finally, around 3:00 I asked the nurse if she would sit with Ciara while I took a break so I grabbed some goldfish crackers and my computer and sat in the lobby and watched my Friends DVDs for about half an hour. When I got back to our room, Ciara was still awake, but in a good mood. I got into bed with her and played a game on the computer and she finally went to sleep around 5:00 this morning. I think I fell back to sleep but it was only for 45 minutes, then the nurse woke me up. They started our discharge paperwork around 7:30 this morning so I called John and he and Hunter came to get us. We stopped at the McDonald’s drive-thru and headed home. I didn’t let the nurse give Ciara her last feeding in the hospital because I didn’t want her tummy to hurt on the ride home. After every feeding thru the tube, we have to let it “air out” which means we put a special tube into her button, and the air in her tummy escapes and she won’t get a tummy ache. But sometimes the Pediasure comes out too and since Ciara hasn’t sat up at all since her surgery, I just thought it would be best to drive home with an empty tummy. So, when we got home I hooked her up to the pump and she was happy. I fed her a little applesauce and then she took a little nap. While John was out mowing the lawn, I sat her up in her Tumble Form chair and she was pretty happy with that so she sat there for a long time. I gave her some Jello and she loved it! I can only give her applesauce, yogurt, etc because they tied off her stomach and they said that it might be up to 3 months before she can eat other things because they might get stuck. But it’s no big deal, that is all she eats anyway. She hasn’t really napped much today which surprised me so hopefully she will sleep good tonight. The good thing is that she hasn’t cried today so she must be feeling pretty good. Hunter has been wanting to play with her all day, but it scares me so I have been trying to keep him away from her, but he keeps sitting next to her and playing with her feet, he’s too cute! My mom and sister came over to see how Ciara was doing but they didn’t stay too long, they had to pick up Mason at his dad’s house. In the evening I made dinner, we watched some TV and then around 10:30 I started Ciara’s last feeding of the night. Hunter is VERY cranky, he is so tired, so I am going to put him to bed right now, wish me luck!
MONDAY’S JOURNAL:
Ciara was fussy when she woke up this morning. I fed her, changed her, and sat her up for a while, but she just kept fussing. John isn’t working today, they didn’t have any loads left darn it. He didn’t work last week because he had to help with Ciara in the hospital and taking care of Hunter. The week before that, they didn’t have any work for him, only a couple hours a day, so we haven’t had a paycheck in two weeks, I have no idea what we are going to do. Now, I don’t want to hear from anybody that we went out to eat last week, we had to. Ciara was in the hospital which is an hour away from our house so yes, we went to the drive-thru a few times while we were there. Don’t email me and say “how dare you”, I don’t want to hear it so save it for somebody else! OK, on with our day. In the afternoon we went to Wal-Mart to pick up some medical supplies that I need for Ciara but we went right back home. Around 4:00 I hook Ciara up to her pump and then at 5:00 John and Hunter went out for a walk. Hunter seemed to enjoy it, except when they were walking along the highway, that scared him a little bit. When they came home we had dinner, watched some TV and then went to bed. Ciara was still fussing most of the evening.
TUESDAY’S JOURNAL:
Ciara slept very well last night and as soon as she woke up this morning I hooked her up to the pump. John went to work around 6:00 so unless I have to, I don’t think the kids and I will go out today. When Hunter woke up, he found the box of doughnuts and helped himself, he was pretty happy with himself. John came home for about an hour, but then he had to go back to work. While he was home, I ran out to the grocery store. Ciara is having a great day today, after I gave her her tube feeding I gave her some chocolate pudding and she was very happy with that, this girls has always loved chocolate! I put her in her Tumble Form chair and she sat there for a couple of hours and didn’t make a peep. Hunter spent the afternoon watching some cartoons and bouncing around the living room. That was all we did today. John came home around 6:00 so I made dinner and we watched TV and went to bed. I just put up some new pictures!!!
SOMEWHERE OVER THE RAINBOW
It’s not a place you can get to by boat or a train…
It’s far far away…
Behind the moon…
Beyond the rain…
Somewhere over the rainbow
Way up high…
There’s a land that I heard of…
Once in a lullaby.
Oh yes…Heaven is a beautiful place
And I thank God for that everyday…
I know He is with me and guiding me…
As I continue my journey today.
Just like the twister in the Wizard of OZ
This disease came and tore my world apart…
So this long and lonely journey called grief
…has left me with a broken heart.
Dorothy’s journey continued over the rainbow…
So has my child’s…just a little past beyond…
The Wizard of Oz and grief have so much in common…
And so the story and my journey continue on…
Some days this journey seems long and winding
Just like the Yellow Brick Road.
Sometimes I feel I have lost my way…
And feel like I’m carrying such a heavy load.
Just like Dorothy met the Scarecrow…the Cowardly Lion…
And the Tin Man…as she went along her way…
I too have met many compassionate people along my way…
But I have also lost just as many who shied away.
Just like the Scarecrow wanted a brain…
I think I could use a bigger one too…
To hold my memories of sweet yesterdays…
And remember everything he used to do.
Just like the Tin Man wanted a heart…
I think I could use a new one too…
As mine is broken in a million pieces…
Some days I just don’t know what to do.
Like the Cowardly Lion who wanted some courage
I too want some courage…to help me climb this hill…
To help me keep moving through his world of grief
When the whole world seems to be standing still.
When the poppy flowers made Dorothy tired…
The Scarecrow was going to pull her along…
I too need friends to be by my side…
To listen and help me be strong.
If only this story was true
And my child could click his shoes three times or four…
And say there’s no place like home…
And he would be back in my arms once more.
If only I could also wake up from this bad dream
And go back in time…
And have my child here once more…
And leave this thing called grief behind.
But since life is not a fairy tale…
And my wishes cannot come true,
We will remember him and all that he was
My beautiful child…I will always love you.
I will continue on my journey with God by my side
And help the fight for a better cure…
Raise more awareness to MPS…
And all these precious children have had to endure.
Yes, my child is somewhere over the rainbow
Way up high…
In a place that I heard of…
Once in a lullaby.
Hugs To All and ^^Angel^^ 
Saturday, March 12, 2005 10:49 PM CST
SUNDAY 10:00 AM UPDATE: HIP HIP HOORAY!!! We are home!!! Ciara is doing very well and didn't fuss once on the hour ride home. Right now she is on the couch and watching TV.
FRIDAY’S JOURNAL:
Ciara fussed all night long and at 4:00 am, the nurse came in to get her blood pressure, etc so while she was awake, I changed her diaper, but I couldn’t get back to sleep. Around 6:00 they started to give her some Pedialyte thru her feeding tube which didn’t make her very happy. She kicked and fussed so I am assuming it hurts her tummy. I turned on some cartoons and she watched them for a while. She seems to be happier when I am laying in bed with her, but that is killing my back, but what ever makes the princess happy, I will do. Dr. DuBois, the surgeon, just came in and said that she looks really good. He is going to give her some Ativan to see if that will help with her being fussy and if it doesn’t, then we can increase her Morphine. John and Hunter came around 10:00 so John is going to stay with Ciara while I take Hunter back home so I can try and get a little nap, I am exhausted. On the way home, Hunter and I went thru the drive-thru and then headed home. He watched some cartoons while I tried to take a nap, but he wouldn’t let me. He was into everything! I have left 3 baskets of laundry, that I had just folded, in the living room and he threw them all over the room and got into a newspaper and emptied his bag of diapers so I only had about a 15 minute nap before I had to clean up the room. I baked a lasagna and then my sister came over for a few minutes but then she left. I put Hunter in the car and we drove back to the hospital. I called John and he met me down in the parking lot so we wouldn’t have to take Hunter and the wheelchair out. I went up to sit with Ciara while John and Hunter went to the book store and got something to eat. Ciara was doing very well when I got there, the nurse said she had just started fussing when John left but she had been doing great all day. I got into bed with her and she calmed down a little bit. I asked the nurse for some apple juice and Ciara drank half of it, I didn’t want her to drink the whole thing and make her tummy hurt. She was still a little fussy so I gave her a pacifier and it seems to help a little bit. An hour later she got some pain meds and she was feeling much better. Of course when then came to start her Pediasure, she fell asleep. But, she didn’t wake up and seemed very comfortable. John and Hunter came up and around 7:30, I took Hunter home again, John is staying the night with Ciara. Hunter and I watched a movie but he was very tired and cranky and didn’t fall asleep until very late.
SATURDAY’S JOURNAL:
John stayed with Ciara last night and he said that she slept most of the night, only fussing a few times. Around 9:00 Dr, DuBois came in to see her and said that she can go home tomorrow. We are also wondering if her fussing and kicking is being caused by her withdrawls from the Methadone that she has been on for the past two years. They won’t give it to her, or her Oxycodone, while she is in the hospital so they are giving her Morphine instead. I am not really sure why, we gave it to her when she was in there last month. Dr. DuBois said that he will start up her Methadone right now so I am hoping that will make her more comfortable. On the way to the hospital, Hunter and I grabbed some tacos and then went over to the hospital. Ciara was sleeping when I got there, the Methadone stopped the fussing and jitters, I knew that was the problem! John and Hunter went out for a while and then they came back and stayed for a little bit. They headed home around 5:00 or so and Ciara is doing great today! She isn’t crying and fussing and she even ate some jello. They have increased her tube feedings to 180 cc’s per hour and she seems to be doing alright with that. It is 9:00 and she is sleeping again so I am going to see if I can get some sleep too. The doctor is going to be here at 7:00 in the morning to discharge us, YIPPEE!!!!
Hugs To All and ^^Angel^^
Thursday, March 10, 2005 10:56 PM CST
SATURDAY 9:00 AM UPDATE: First I would like to thank all of you for the phone calls and wonderful words in our guestbook, you are all fantastic! John stayed with Ciara last night and he said that she slept most of the night, only fussing a few times. Around 9:00 Dr, DuBois came in to see her and said that she can go home tomorrow. We are also wondering if her fussing and kicking is being caused by her withdrawls from the Methadone that she has been on for the past two years. They won’t give it to her, or her Oxycodone, while she is in the hospital so they are giving her Morphine instead. I am not really sure why, we gave it to her when she was in there last month. Dr. DuBois said that he will start up her Methadone right now so I am hoping that will make her more comfortable.
FRIDAY 1:30 PM UPDATE: John came to sit with Ciara while I took Hunter home and tried to get a nap in, I am exhausted. I just called him to see how she was doing and he said that she is wonderful. They have been giving her Pedialyte thru her feeding tube all morning and she is doing great with that. She was needing Morphine every 2-3 hours but now it is only every 5-6 hours so that is also wonderful. The doctor saw her this morning and was very pleased with how she was doing and said that we should be able to come home on Sunday.
I FORGOT TO MENTION THAT WE ARE AT KAISER ON MORSE AVENUE, ROOM D5B. I can't get my emails while I am in the hospital so if you need me, please use mps3mom@yahoo.com , Thanks!
WEDNESDAY'S JOURNAL:
Ciara woke up around 6:00 this morning and immediately pulled her NG tube out of her nose, the little rat! It's not a big deal though, she is eating and drinking again and her surgery is tomorrow so I think it will be OK. I sent Hunter off to school today, it will be his last day because he will be with us for the next two days at the hospital and then the school is on break for two weeks. We gave out his birthday invitations and the kids were very happy about being invited so I hope that they can come, it will be a lot of fun! Plus, we have an MPS friend coming to his party, yeah! We met Scotty and his family at the MPS Conference, Scotty has Hunter's, and they live in Modesto so I am very excited that they will be coming. After Ciara woke up, we ran out to the grocery store, stopped by the school so everybody could see Ciara before her surgery, and then we were off to the DMV. I was dreading it because it always takes hours but I was shocked when I walked in and they took me right away, I didn't even have to take a number. When we were finished there, Ciara and I went out to lunch because I wanted to see if I could get her to eat something, but she couldn't. Every time I put a piece of tortilla or french fry into her mouth, it fell right out, then she fell asleep. I took her home and we waited for Hunter to come home. My sister came over so she sat with the kids while I picked up Mason from school. They stayed for a couple of hours and then Mason had to go to baseball practice so they left. When John came home we had dinner, watched some TV and went to bed.
THURSDAY'S JOURNAL:
Ciara had 3 seizures this morning around 2:00. The first two weren't bad at all, but the third one was a moderate one, not too bad. After the seizures, she wouldn't go to sleep, she kicked and cried for hours, even after I gave her her heavy duty pain meds and Benedryl. So, around 5:00 I gave her some Motrin and by 5:30 she was asleep. Unfortunately I was up at 7:00 so I only got 1 1/2 of sleep last night and I am exhausted. I started to pack up a few things for the hospital and then watched a little TV before it was time to give the kids a bath. We headed out to Sacramento at 10:30 and we stopped at Del Taco before we went to the hospital so that we would have something to eat while she was in surgery. We got to the hospital at noon and then had to wait for an hour before they took us up to the pre-op room. Ciara went into surgery at 2:00 and I was told that it would take two hours so we went out to the waiting room. After an hour, Hunter and I went down to the cafeteria and I ate my tacos and Hunter had a fruit bowl and then we went up to the waiting room again. The waiting room was packed with people but Hunter didn't care, he crawled around the floor making laps and friends along the way. Some of the people rememered us from all of the TV and newspaper stories that were done about Tommy and everybody fell in love with Hunter's red hair and freckles. By 4:30 we still hadn't heard anything about Ciara and at 5:00 I asked what was going on. The volunteer said that on the surgery schedule it said that the surgery would take 3 1/2 hours so that made me feel better. Around 6:00 Dr. DuBois came out and brought us back to see Ciara. He said that the surgery went well, but they had some trouble intubating her. He said that because they did a Nissen, tying her stomach so that nothing can come back up, she might have some trouble eating by mouth for a while, it might be hard for her to get the food to go down and it may take two weeks to three months before she can eat well. After a couple of minutes, Ciara started moaning and she was shaking a little bit but she was doing great and 10 minutes later, they took off her oxygen mask and she was sitting up and chewing on her fingers again, just like nothing had happened. The nurse had brought a TV in for Hunter to watch cartoons on while we waited so that was very nice, he was pretty happy about that. They took us up to a room at 7:00 and Ciara was back to sleep by 7:30. John and Hunter went home at 9:00 and Ciara got some Morphine to help with her pain.
Hugs To All and ^^Angel^^ 
Tuesday, March 8, 2005 8:10 AM CST
UPDATE:Hey everyone...this is Alyssa. I just talked to Alicia and Ciara went into surgery at 2:00pm PST and it should take about 3-4 hours and Alicia will update as soon as Ciara is up to her room. Thanks for your prayers...keep them coming! =)
THURSDAY 2:00 AM UPDATE: Ciara just had a seizure, but I am happy that it happened now instead of during the surgery. We have to be at the hospital at 12:00 so I will update when I can.
WEDNESDAY 7:00 AM UPDATE: I just walked past Ciara and I saw her NG tube hanging down from her face. Yep, she pulled it out, AAHH!!! Oh well, she seems pretty proud of herself and she looks like she is back to being "Ciara" again so I am happy. She is eating and drinking without the tube so she should be alright until her surgery tomorrow.
Ciara is going in for her surgery tomorrow (Thursday) so everybody please say a prayer for her. She has had problems with anesthesia before so I am very nervous about her going. I don't know what time she will be going in, they are going to call me today. Please stay tuned for updates tomorrow!
SUNDAY’S JOURNAL:
We woke up early and packed up everything we will need for our trip to Monterey. My friend Patty, her son Jesse has Sanfilippo Jesse's Journal , had talked to Jesse’s neurologist about Ciara and what she was doing so the doctor emailed me back. It just happened that he was coming out to Monterey this weekend for a metabolic conference and asked if we could meet up with him and he would take a look at her. Plus, our little friend Jacqueline, also Sanfilippo, lives in Monterey and my dad just moved there so it will be a fun trip. I tried to get Ciara’s pump to work but it just wouldn’t, I don’t think it was hanging high enough in the car and it wouldn’t flow right. So, I will have to feed her thru her NG tube by hand all day, but that’s alright. Hunter was very grumpy today, and so is Ciara, so I already have a headache and we haven’t left town yet! When we got to Monterey we grabbed a bite to eat and then we met up with our friends that live there. Their daughter, Jacqueline, has Sanfilippo and she is a year older then Ciara Jacqueline's Website . We took the kids to the beach and Ciara was still cranky so John held her on his lap and she was happy. Hunter was not happy about being there, he is afraid of water. I sat his in the sand next to Jacq and he cried for a few minutes, but they he realized that he was sitting in sand, and started playing. After the kids played for a while, we all got back in the car and headed over to Asilomar. We were going to see if we could catch up with Jesse’s doctor. We got a phone call from him and said to meet him at 4:45 so we took the kids for a walk along the beach until it was time. My dad called so he is going to meet up with us on the beach. We were putting the kids back in the car when he pulled up so we all went back to the conference center to meet up with Dr. Kahler who was attending a metabolic conference. Of course he spotted us as soon as we walked in the door and we chatted. He gave us a couple ideas of what might be bothering Ciara and I really like him! We talked for a long time but then we had to go. Jacqueline and her family left and we headed over to my dad’s to help him move a TV and then we headed home. Ciara screamed the whole drive home again, I wish I knew what was hurting her so bad. We didn’t get home until late so we all just went to bed.
MONDAY’S JOURNAL:
I woke up late so I had to hurry to get Hunter off to school on time. When Ciara woke up, I got her dressed and we ran out to the grocery store and then went back home. Ciara is doing great this morning, she sat straight up in her car seat and didn’t fuss at all while we were out. I asked the school to send Hunter home on the noon bus so that we could get to Ciara’s doctor’s appointment by 2:00. John came home early so he went with us. We talked to the nurse practitioner about the surgery and we told her about our concerns with the anesthesia, Ciara has had problems with it in the past. She called and had the anesthesiologist come up and look at her, I really liked him, and he said that he thinks he will be working with her during the surgery so that will make me feel better. I gave Ciara her juice cup, just to keep her busy, and she drank the whole thing in 30 seconds, I was shocked, but so happy. Today she seems to be back to her old self and it is so nice to see her like that again. When we left the hospital we stopped at Krispy Kreme and then went home, all munching on a doughnut. Ciara fussed on the way home, darn it. We changed their diapers and Hunter bounced around the living room and Ciara continued to fuss for the rest of the evening. After dinner we watched some TV and I fell asleep in the recliner around 9:00.
TUESDAY’S JOURNAL:
Ciara whined and fussed all night long so around 4:30, I gave her some Motrin and she went to sleep, thank God! I got up at 6:45 and had to rush around to get Hunter ready for school, Ciara was still sleeping. John came home early today because we had to get a physical, I hate doing that! It is now 1:00 and Ciara is still sleeping, I hope she isn’t getting sick again. John just ran out on a call for the fire department and I am starving. They took blood so we weren’t allowed to eat anything. I was just about to run out to the grocery store when John’s pager went off, darn it. Ciara woke up around 1:30 so I changed her, fed her, and sat her in the recliner with a juice cup and she seems to be happy. John called and said that the fire call he went on ended up being to his cousin’s house. She found her friend/roommate on the bed, not breathing. They tried CPR but they couldn’t save her. This is his same cousin whose husband just passed away in the car accident a few weeks ago, so please say a prayer for her, she is going thru a very difficult time right now. I called her brother to let him know what was going on and John stayed with her for a few hours. Around 2:30, my sister came over so she sat with the kids while I picked up Mason from school and ran to the grocery store. We were all hungry so we had a bite to eat and watched some TV while Mason played on the computer. Mason has baseball practice today so they had to leave around 4:00 and John came home around 5:00. A little bit later, we all had dinner, watched some TV and the kids went to bed very early. I fell asleep around 9:00 but I woke up at 1:00 so I fixed Ciara’s pump, it ran out of fluids, and went back to sleep. HUNTER'S 7th BIRTHDAY PARTY!!! Hunter's birthday is on March 25 and we are having his birthday party on MArch 26 at the Gold Country Lanes. You can visit his Wish List by clicking here: Hunter's Wish List
Hugs To All and ^^Angel^^
Thursday, March 3, 2005 0:52 AM CST
TUESDAY 7:00 AM UPDATE: Ciara had a good morning yesterday, but was fussy all evening and night long. She is sleeping right now. I wanted to ask you all to say a prayer for our buddy Cody. He is being admitted to the hospital, you can visit his website here, Cody's Journal
FRIDAY 5:00 AM UPDATE: Ciara just woke me up when I heard her having another seizure. It wasn't as bad as the last one and didn't last as long but it is now 6:45 and she is still awake and crying. I am going to give her her pain meds and some Motrin and hopefully she will go back to sleep. Stay tuned for further updates!
MONDAY’S JOURNAL:
I sent the kids off to school this morning and then I had to run out to the store. I didn’t do much for the rest of the morning. The kids came home at 2:30 and Ciara was crying so I brought them inside and tried to give her something to drink but he wouldn’t drink anything. She is still not eating or drinking anything, she just can't swallow or suck anything from her cup. I made an appointment for her tomorrow to see the doctor. I want them to put in an NG tube so that she can get some nourishment and liquids over the next 10 days until she has her surgery on March 10. Check back tomorrow afternoon for an update about what the doctor said. Hunter did his own thing for the rest of the evening while I tried to get something down Ciara, she worries me so much!
TUESDAY’S JOURNAL:
I sent the kids to school today, but I asked for them to come home on the noon bus so that we can make it to Ciara’s doctor’s appointment in Sacramento by 1:30. John came home from work early this morning so we ran out to get a few things done before the kids came home. The bus brought them home at 12:30 so I put Ciara in the car while John took Hunter to his dad’s for a visit. When we got to Kaiser, they took us right in, we didn’t even have to wait in line to register. They came in and put the NG tube up Ciara’s nose. It goes down into her tummy so that I can feed her until she has her surgery on March 10 for a permanent feeding tube. She did great while they were putting the tube in, she didn’t fuss or anything. When they finished, I had to take her over for an xray to make sure the tube was in her stomach and then we went back to the doctor’s office. Dr. Makram said that the tube needed to be pulled out 3 cm so they did that and then we went home. John and Hunter had just gotten home right before I did so I put Ciara on the couch and immediately gave her some Pediasure thru her NG tube and boy did that feel wonderful! Who would have thought that a tube up the nose would make me so happy? I only fed her 2 ounces very slowly and every time I would push a little into the tube, she would kick her legs and wave her arms so I think her tummy was bothering her, it just isn’t used to having anything in it. She went to sleep so the rest of us had dinner and watched a little TV before we went to bed. At 10:45 Ciara had a pretty big seizure but she seems to be doing alright. She is still a little twitchy but she is calming down and I am hoping that she will go to sleep very soon, which she did.
WEDNESDAY’S JOURNAL:
I sent Hunter off to school and then I fed Ciara while she was sleeping. After breakfast and a little TV watching, I got her dressed and we ran out to the store. John came home early so we did some house cleaning while Ciara slept most of the day. Hunter came home around 2:00 and he had a snack and watched some cartoons. The Home Health people said that they would be here this afternoon so I waited for them to come and John ran out to get a hair cut, boy did he need it. I called my mom and I heard my sister yelling in the background. Apparently Mason has to build a DNA model but didn’t tell anybody until now, it is due tomorrow. I told my mom to have them come over and I would help him, they were here in 15 minutes. They had bought some things but nothing that would work, and of course the stops here were closed so Mason and I went to the grocery store to see what we could find. I was afraid to go to Wal-Mart because I didn’t want to leave Ione when the Home Health hadn’t come yet. We ended up buying colored marshmallows, toothpicks, and sponges, Lord help us make this! They didn’t have any white marshmallows so we had to spray paint some colored ones. It took us a couple of hours, but eventually we were finished and Mason was very happy with the final result. He left it here and my sister took him home, I will bring it to him in the morning when I take him to school. He said that some of the kids bought a DNA kit but I think that he will get a better grade because we were creative with ours, I guess we will have to wait and see what happens. I made dinner, we watched some TV and everybody went to bed early.
THURSDAY’S JOURNAL:
We got up around 6:00 this morning and while I got Hunter ready for school, John left for work. He is doing an overnight haul so he won’t be home until tomorrow. Hunter was in a great mood this morning and he watched Barney while we waited for the bus to come. After he left, I took Mason to school and then went home and had a quick bite to eat. I fed Ciara thru her NG tube and then I tried to figure out how to work the IV pump that is supposed to pump the Pediasure into her 24 hours a day. I think I got it hooked up right but I am not sure so I will try it later on when we get back home. Her mouth looks so dry so I gave her a sippy cup and she was actually sucking from it, yippee!!! She was even trying to hold it so that is a great sign. I got Ciara dressed and then we had to go take my mom to run some errands. At our first stop, I didn’t feel like taking Ciara’s wheelchair out so I carried her into the shop and we sat in the chair until my mom was finished. I walked her around the room, which she hasn’t been able to do for a couple of weeks so that was great! We made a couple of more stops and then after my mom went home, I took Ciara to school so that they could see her, they worry about her too. Again, I didn’t want to drag her wheelchair out, besides, I had it blocked in with grocery bags. I carried her half way and then she walked the rest of the way to the class room. They were all surprised to see how wonderful she looks and the kids kept asking me when she was coming back, everybody misses her. I had to leave before my groceries melted so we walked back out to the car and went home. I put her on the couch and tried the pump but it wouldn’t work so I don’t know what I did wrong. I just opened the clamp and let gravity do the work, but I stopped it after she had 100cc. She took a nap so I watched a little TV and picked up around the house. Hunter was so happy when he came home, he is just too cute. We came inside and sat down at his TV and watched Barney, I didn’t hear him or see him for an hour. Mason and my sister came over after school and Mason said that he got an A on his DNA project so that made me so happy. We watched some TV and I fed Ciara again. My sister took Mason home for baseball try-outs and then she came back over. Tonight the fire dept is doing a pizza take-over night so we ordered a pizza and Hunter ate a lot while Ciara napped. 
Tomorrow, Friday, The Amador Dispatch is running a story about National MPS Day so don’t forget to check it out! You can read the story by clicking here: MPS News Story
Please pass the word on this wonderful promotion to help the Marrow Foundation -- and get two free wristbands for you! Saturn is promoting its "People first" wristbands on its Web site, and the proceeds from this promotion will go to The Marrow Foundation to help cover the costs of tissue typing new volunteers for the NMDP Registry. If you log on to the Saturn Web site (see below) between March 3 and March 8, you can order two FREE wristbands, and Saturn will contribute $.50 for each one ordered to The Marrow Foundation. Please do so and share this link and message with your family and friends. Saturn has made 69,000 wristbands available for this purpose with a potential value of $34,500 to The Marrow Foundation! Thank you for helping save lives! To get your wristbands, just click here: Free Saturn WristbandsHUNTER'S 7th BIRTHDAY PARTY!!! Hunter's birthday is on March 25 and we are having his birthday party on MArch 26 at the Gold Country Lanes. You can visit his Wish List by clicking here: Hunter's Birthday Wish List
Hugs To All and ^^Angel^^
Sunday, February 27, 2005 12:35 AM CST
The Ione Volunteer Fire Dept is having their annual Pizza Takeover Night this Thursday at Frank A’s Pizza! It will be from 5:00-8:00 PM. Order your pizzas early so that the fire dept has time to deliver them to you with the fire engines, 274-6313.
TUESDAY 10:45 PM UPDATE: Ciara just had a pretty big seizure but she seems to be doing alright. She is still a litle twitchy but she is calming down and I am hoping that she will go to sleep very soon.
TUESDAY 6:30 PM UPDATE: OK, I took Ciara to the doctor to get her an NG feeding tube, which is a tube that goes up her nose and into her tummy so that I can put her Pediasure into it so she doesn't get dehydrated or lose any more weight. She has been fussy since she came home from school, but I just put 60 cc's into her tummy and I will give her more in an hour or so. Stay tuned for further updates! MONDAY 3:30 PM UPDATE: Ciara is still not eating or drinking anything, she just can't swallow or suck anything from her cup. I made an appointment for her tomorrow to see the doctor. I want them to put in an NG tube so that she can gret some nourishment and liquids over the next 10 days until she has her surgery on March 10. Check back tommorrow afteroon for an update about what the doctor said.
I JUST PUT UP SOME NEW PICTURES TO CHECK THEM OUT!
FRIDAY’S JOURNAL:
I got Hunter up and off to school and then I started getting everything together for the party at school, today is National MPS/ML Day! The MPS Society and TKT were opening the NASDAQ today so I watched it, it was awesome! I kept Ciara home because she still isn’t doing too well but I did take her to the school for the MPS Day party. I brought the cookies, cupcakes, juice, snacks, etc and when I walked into the classroom, all the kid were already gathered around the table and they were all wearing purple and purple ribbons! They started off by playing a song game and then they went around the table saying what they liked best about Ciara and Hunter, it was cute. All of the kids made cut-outs for Ciara and for Hunter and we put them on the wall. Their teacher told the kids about MPS and then it was time to eat! The reporter from the Amador Ledger was there so he took some pictures and we talked for a little bit while Ciara ate and Hunter played with my sister. Hunter had such a great time today! The aides got Ciara to eat a cupcake and a can of Pediasure, yippee!! They wanted to keep her at school for the rest of the day so I let her stay. I had to go so I drove to Stockton to get John’s paycheck and then I went to the cemetery to bring Tommy some purple MPS Day flowers and a note. Tommy was such a brave, strong little boy so fought so hard against MPS and he changed the world for the better. Many, many children will have a better chance at life because of what Tommy did and I love him so much! When I left the cemetery I went back home and waited for the kids to come home from school. We didn’t do much for the rest of the day. John came home in the evening, we had dinner, and watched some TV before we all went to bed.
SATURDAY’S JOURNAL:
Everybody got to sleep in today, yippee! When the kids got up, we headed out and had some breakfast. Ciara ate a little bit and then fell asleep, but Hunter was so happy when we got Denny’s, it was so funny, that kid loves to eat! After breakfast John went over to his brother’s house and I took the kids to Mason’s basketball game. Ciara slept most of the time, but Hunter had a blast! He loves watching the kids run back and forth and he was clapping and laughing, it was so cute. After the game I took the kids back home and started cooking. I made a couple meatloaves and some baked potatoes so I will take some over to my mom’s. When John came home he spent the day working outside in the yard. In the evening we had dinner and then his cousin came over for a while. I think the kids actually went to bed around 11:00 tonight.
SUNDAY’S JOURNAL:
Ciara didn’t sleep well last night, she kept kicking and fussing. Hunter slept all night, I don’t even think he moved once. We had to wake him up around noon so that we could go out. While I fed Ciara, John’s brother came over to help him with the truck engine. I got Ciara to eat 2 cups of applesauce and she drank a whole cup of juice so that made me happy. Once Jim left, we put the kids in the car and we were off. We went to Merced to look at something, but when we got there, the place was closed. That made me very angry because I called them last night and they said that they were opened until 4:00 on Sundays and their sign said they were opened 7 days a week, LIARS! So, we headed back home but found another place to stop and it turned out for the best. We went back home and John finished mowing the lawn while I tried to get Ciara to drink more. In the evening I made dinner and Ciara ate a whole bowl of Malt-O-Meal and some juice and then she fell asleep. Hunter and I watched the Oscars and then some cartoons. It is now 12:30 am and I am going to bed!
For those of you who are living in the Edwardsville, IL area or if you would like to help out, I have a favor to ask of you. Our friend Kraig has MPS-II and he is having a bowling fundraiser to help raise money for the MPS Society. For more information you can visit the Klenke Bowl Website or stop by Kraig's Journal for more information. They are also looking for items for the raffle prizes and silent auction!
I have put together a list of some of the Caringbridge websites that I have been following over the past couple of years so I thought that I would pass it on to all of you. Friend's Website
Hugs To All and ^^Angel^^ 
Thursday, February 24, 2005 10:29 PM CST
TOMORROW (FRIDAY) IS NATIONAL MPS/ML AWARENESS DAY SO PLEASE WEAR SOMETHING PURPLE IN HONOR OF CIARA AND HUNTER AND IN MEMORY OF TOMMY!!! THE AMADOR DISPATCH IS COMING TO SCHOOL TOMORROW TO INTERVIEW US AND TAKE PICTURES SO KEEP YOUR EYES OPEN FOR THE NEXT EDITION ON WEDNESDAY!!!
MONDAY’S JOURNAL:
John and I got up around 6:30 this morning so I made his lunch and we was off to work. Hunter was already up when we woke up but Ciara was still sleeping. Hunter spent the day watching cartoons and he was very happy about it. He is obviously starting to feel better because he was dancing around the living room. He didn’t whine too much today and has started eating again. Ciara slept the whole day so I am worried about her. She isn’t eating much at all and she won’t drink anything. I think in the last 2 days, she has drank 2 cups of juice, if that. Tonight I had to take the stopper out of her sippy cup and squirt the juice into her mouth and I got her to drink 3 ounces. Whenever I try to feed her, gags and pushes the food out of her mouth with her tongue so I don’t know if her throat is sore or what. She has had a low fever today again too, darn it. That was pretty much our day, we didn’t go anywhere or do anything. It is now 10:00 and Hunter is almost asleep and I just put Ciara in her Tumble Form chair and I am going to try and get some more liquids down her. Wish me luck! Well, it is now midnight, Hunter is sleeping and I just woke Ciara up. She walked around a little bit and I just got her to drink another 5 ounces. She is now laying on the couch, waving her juice cup around. That is the most she has done in 2 days so I am hoping she is feeling a little better. I don't think she is going to school tomorrow, I want to keep her home so I can pump her full of fluids, but I think Hunter will go, he is feeling much better.
TUESDAY’S JOURNAL:
Ciara is staying home today but I sent Hunter off to school. After I got Hunter dressed, he watched some Barney while we waited for the bus to come. He wasn’t happy, but he wasn’t grumpy either when I put him on the bus so that made me happy. It was raining today so Ciara and I didn’t do much, we just stayed in and I tried to get her to eat and drink, but she wouldn’t. When I feed her, she gags and spits it out and she won’t suck on her juice cup. Hunter came home from school but the teacher said that he didn’t have a good day, he was a little cranky and very tired. My sister and Mason stopped by for a little bit. The kids and I spent the rest of the day at home and I spent every minute with Ciara. John went right from work, to his fire dept meeting at 7:00 so we didn’t see him until 9:00 when the meeting was over. By that time the kids were almost asleep and so was I.
WEDNESDAY’S JOURNAL:
I didn’t send the kids to school today, I figured that since Hunter had a bad day at school yesterday, I would keep him home one more day to make sure he was alright. Of course he spent the morning laughing and jumping around while he watched his cartoons. He must be feeling better because I found him with a package of doughnuts. He hasn’t eaten anything in a week so just the fact that he searched out food and opened it, I know he is better. Again, we didn’t do much today. I did have to take my mom to the store but we went right back home. Ciara still won’t drink anything but she did eat a little so that was good. When John came home we went for a drive and then back home again. We watched some TV and I fell asleep at 8:30.
THURSDAY’S JOURNAL:
I sent Hunter to school today but I kept Ciara home again. I just don’t know what I am going to do with her. I got her to eat a couple of cups of applesauce this morning and she drank 6 ounces of juice so that made me happy. She still can’t hold anything in her hands or sip from the cup. I still have the stopper out of her cup and I can dripping the juice into her mouth but I will do whatever I have to to make sure she doesn’t get dehydrated. I spent the morning baking cookies for the class tomorrow because it is National MPS/ML Day and they class is going to be celebrating. Later on in the morning I got her dressed and we headed out to the store and then back home. My sister came over so she took care of Ciara while I finished the cookies and baked the cupcakes. I also put together the purple MPS ribbons and MPS suckers for tomorrow. I ran out to pick up Mason from school and brought him back to my house. I have been putting off getting Hunter's hair cut for a while now because it is just so exhausting for me to take him. But, since the reporters are coming tomorrow, I figured I better do it today so that everybody could see his cute, freckled face. I took him to the place that I usually do but Robyn wasn't there. I love Robyn because her niece has CP and she is used to wild and crazy haircuts. The other lady said that she would do it so I warned her about him and she was still game. Now picture this, I sat in the chair and put Hunter on my lap and he instantly went crazy, crying, kicking and waving his arms around. Every time I get his hair cut, they ALWAYS use the shears because it is faster and they won't get cut but this lady used the scissor and cut his whole head that way. Boy was I impressed! Now, here is the funny part. We usually go into the back room and close the door so nobody can see us but this time she sat us in the front window on Main Street. I had Hunter in a head lock and people were gathering in front of the window and watching, giggling as they walked away. Then a lady came in with her little boy and if you could have seen the look on that little boys face when he saw Hunter flailing about, I just laughed. The mom and little boy walked out. But, at least I can see Hunter's face again! So, now I put Hunter back in the car and he was chattering away, happy as could be. We went back home so I took Mason to his dad’s house and dropped my sister off at her house and went back home. John called and said he wouldn’t be home tonight so Ciara slept for the evening and Hunter kept sneaking my MPS cookies, I think he eat about 7 of them. It is now 8:45 and I am going to toss them in the bath and watch The Apprentice.
Transkaryotic Therapies, Inc. TKT has made arrangements for several members of the National MPS Society and 4 representatives from their company to attend the NASDAQ market opening on Friday February 25th in honor of MPS Day. The Legislative Committee of the National MPS Society has also been working with members of congress proposing a Congressional Resolution to make February 25 “National MPS Awareness Day” and it was approved and now official!!!!
You can view the market opening by visiting the Nasdaq web-site here: Nasdaq Website scroll down towards the bottom of the page and read the instructions under the “Marketsite Live Webcam” section.
Hugs To All and ^^Angel^^ 
Sunday, February 20, 2005 1:23 PM CST
For those of you who knew Greg Anderson, his funeral will be Monday at 1:30 at the Calvary Chapel on Ridge Road.
FRIDAY’S JOURNAL:
At 2:50 this morning I woke up when I heard Ciara making strange noises, she was having a seizure. John had just come home from the fire department so he took Ciara and I fell asleep again. I woke up again at 5:00 so I watched some TV. I had to get Ciara up and off to school and then I grabbed a little bite to eat. When Hunter woke up, he was fussy and didn’t want to eat anything. John isn’t working today so in the afternoon we went out to Stockton to pick up his paycheck and then we went back home. I decided that I was going to make some lasagnas so that is what I did for the rest of the afternoon. I think I ended up making 5 of them so I sent one over to Ellen’s, one to my mom, my dad took one and then I have one to bring to John’s dad and I popped one in the freezer. Ciara came home around 2:30 and she was asleep when I went out to the bus to get her. I put her on the couch and she didn’t wake up for the rest of the day. Hunter still has a slight fever and is VERY whiny and still doesn’t want to eat anything but I did get him to drink a Pediasure. In the evening, John went over to help Ellen pack and move and I just stayed home and took care of the little sick ones.
SATURDAY’S JOURNAL:
Hunter was fussing all night long, he still has a low fever and a really bad cough but I don’t know what else is bothering him, but something is because he is crying all the time. Ciara was sleeping at 2:30 yesterday when the school bus brought her home and she is still asleep right now. Finally at noon, she woke up screaming and crying and burning hot, even her hands were flaming red. Hunter’s nose started running last night so I think he has the “bug” that is going around but since Ciara is getting over double pneumonia, I am more worried about her. I gave her some Tylenol and started getting the kids dressed while John called Kaiser and told them we were bringing the kids in. Kaiser told us to be there at 3:30 so that gave us enough time to pick up my laptop that was being repaired before we went to the hospital. FYI: Don’t purchase ANYTHING from Comp USA!!! When we bought the laptop, right before we went to Duke, we bought the extended warranty because the man told us that it would cover ANYTHING, even if the kids jumped up and down on the screen, it would be covered. Well, they lied and it is a long story but just don’t shop there. OK, so now we get to the hospital and they put the pulse ox monitor on Hunter and his O2 sat was 88 which surprised me because that I what Ciara’s was at last week when she was having so much trouble breathing and he seemed to be breathing fine. Ciara was still sleeping in her wheelchair so when they put the pulse ox on her, she was at 92 and then went down to 88. They moved us into a bigger room and put a continuous monitor on them and Hunter was still low so they put an oxygen mask on him which he really hated and was fighting to get off. They tried Ciara again but we sat her straight up this time and her pulse ox was 95 so that was great. The doctor said that her lungs sound great and since she has a fever, diarrhea, and a red throat, they are pretty sure she has the virus that is going around. The doctor listened to Hunter and said that she didn’t really hear too much in his lungs but she wanted an xray to make sure so we went downstairs. John took him in for the xray and then we went back up to the doctor’s office. After the doctor looked at the xrays she came in and said that Hunter has pneumonia in his right lung. He didn’t have the oxygen on while we went downstairs and right now his pulse ox was at 95 so that was a big improvement. She said that she is very comfortable with us taking the kids home and that we know what to look for so we were very happy. If I had to, I could stay in the hospital again with Ciara, but the thought of Hunter being in the hospital and all of the fighting he would be doing, I was exhausted just THINKING about it! We went downstairs to the pharmacy and then we went home. I tried to get them to eat but Ciara still wouldn’t because her throat hurt and Hunter was still fussy and cranky. I fell asleep in the recliner and the kids were on the couch so I woke up around 11:00 when I heard Ciara breathing weird. She also had a strange look to her so I am not sure if it was the end of a seizure or a pneumonia thing so John took her in bed with him so he could keep and eye on her and I took Hunter because he was just so unhappy. I did give them both more Tylenol, antibiotic, and Hunter got some decongestant before they went to bed.
SUNDAY’S JOURNAL:
The kids slept well all night and when they woke up this morning, they were looking a lot better. Neither one had a fever and Hunter wasn’t whining and crying. Ciara was very alert and she sat in her Tumble Form chair and watched cartoons, which she doesn’t do very often. After I fed the kids, we decided to take a drive to Sacramento and get them out of the house. We went out to lunch and then we went to Costco before we headed back home. Hunter didn’t eat much at lunch, but Ciara ate everything. When we got home the kids took a little nap while John went over to help his cousin finish moving. He and Donny came back around 8:30 or so and they sat out on the porch while I watched some TV. Hunter ate a little bit tonight but not much and Ciara ate a little too because she fell asleep. Hunter crawled up on the couch and his eyes were closing fast so I got him up, changed him and gave him his meds and then he went right to back to sleep. 
I have some wonderful news to share! I have mentioned Olivia before, she has Sanfilippo and is at Duke right now for her transplant. She has 100onor cells!!! Way to go Olivia!!! You can visit her website by clicking here Olivia's Website Transkaryotic Therapies, Inc. TKT has made arrangements for several members of the National MPS Society and 4 representatives from their company to attend the NASDAQ market opening on Friday February 25th in honor of MPS Day. The Legislative Committee of the National MPS Society has also been working with members of congress proposing a Congressional Resolution to make February 25 “National MPS Awareness Day”. Hopefully this will get approval soon.
You can view the market opening by visiting the Nasdaq web-site here: NASDAQ,scroll down towards the bottom of the page and read the instructions under the Marketsite Live Webcam section.
Hugs To All and ^^Angel^^
Tuesday, February 15, 2005 0:33 AM CST
SATURDAY 11:00 PM UPDATE: I just woke up and found Ciara breathing very strange so I am not sure if she was having some sort of seizure thing or pneumonia thing, it worries me. She is OK right now so I am going to see if I can get the kids back to sleep.
SATURDAY 7:40 PM UPDATE: We are back home now, thank God! The doctor said that Ciara's lungs sound great so she thinks that Ciara has a virus because her throat is red and she also has diarrhea. Hunter, on the other hand, is the one that had me worried today. The doctor sent him for an xray and, of course, HE has pneumonia, go figure! He was on oxygen for a while but he is doing a little better so they let us go home. This doctor remembered us from before we went to Duke and was familiar with the kids. She said that she is pretty sure that I know what signs to look for and felt comfortable with letting the kids go home. Thanks for checking in and I hope that I don't have to update like this again!
Saturday 5:20pm est. update: Hey...this is Alyssa again. Alicia did not ask me to update, but I wanted everyone to start their prayers up again. I just talked to her and Ciara's pulse ox is around 88 and Hunter's is 92....Not too great. They are not sure yet what is going on. Please pray and hopefully the next update will be from Alicia...at home..with her babies
SATURDAY NOON UPDATE: Hunter hasn’t been feeling well for a few days so he didn’t go to school. He has had a fever, on and off, and a junky sounding cough which is making me worry. Ciara has been doing very well, but she was sleeping on the bus when she came home yesterday and just now woke up, that also makes me worry. I woke her up last night to give her something to eat, but she ate it weird, like there was something stuck in her throat or something, then she went back to sleep. Now, Ciara only poops about 3 times a week so the teacher said she did it two times at school yesterday and then last night I got a huge, mushy one. It is now noon and she just woke up screaming and crying. I was going to sit her on my lap but she was burning up and she had another big, mushy diaper. I called John and he is on his way home from work and we are going to take them both to the hospital to make sure everything is OK. Keep checking in for an update and thank you all so much for supporting us! 
SUNDAY’S JOURNAL:
Ciara didn’t go to sleep until 2:30 this morning, she kept crying and crying until it dawned on me that she was hungry. They haven’t been feeding her while she has been in the hospital. They only give her hot tea and hot beef bouillon and she can’t have either of those. I fed her some applesauce I had brought from home and then she went to sleep. Kaiser never did get her meds so I don’t know what they were going to do, she can’t go without her Oxycodone and Methadone, she is basically addicted to them and can’t go without them. Thank God I brought hers from home so I gave them to her when she woke up and then I fed her some Jello and applesauce. John called and he and Hunter are on their way to the hospital. It is our nephew’s birthday party today so John is going to take Hunter since Ciara and I will still be in the hospital. I finally got to talk to a doctor and I was surprised when he said that Ciara could go home today, last I heard we would be there until Monday at the earliest. He said that he was surprised at how fast Ciara turned around and that she was doing wonderful. John’s sister Kathy called and said that she was on her way up to visit so when she walked in, John and Hunter were with her. I told them that Ciara was discharged so I packed up our things and we went down to the pharmacy to get her antibiotic and her breathing treatment. We put the kids in the car and we were off to the birthday party. We went to the movie theater because Russell wants to see “The Heffalump Movie.” Hunter and Ciara LOVED the movie. Ciara watched the whole movie and Hunter went nuts when it started. He loves the Pooh Bear videos but Rabbit is always his favorite character so when Rabbit came on the screen, Hunter was laughing so hard and chattering that John took him to the back of the theater. He still watched the movie but he was quieter. After the movie we took the kids to the park and then we were off to the pizza place. Hunter ate 3 pieces of pizza and Ciara ate a piece too and they both inhaled their birthday cake. It was getting late so we took the kids home. I was surprised by Ciara because she was sitting on the couch and she kept springing up and walking across the room. We couldn’t keep her down and I was afraid that she was going to fall, but she didn’t. I haven’t seen her move like that in a long time, it was great. She kept chattering and waving her arms around, she was having a great time. By now it was bath time and then the kids went to sleep, it had been a long day!
MONDAY’S JOURNAL:
Today is supposed to be Ciara’s last day at school, not happy about that, but I don’t want to talk about it until everything is straightened out and Ciara is back in school. I don’t want to school to use this journal against her in any way. OK, on with the day. I sent the kids off to school and then I grabbed a quick bite to eat before I headed out. I went to the school because I wasn’t sure what time the Valentine’s party was and I had the kids’ valentines and cupcakes. I stayed for a little bit, but the party wasn’t until noon so I ran out to the store to get a few things and then I went back to school for the party. The kids ate, checked out their Valentine’s and watched “Shark Tales.” I left the party around 1:00 so I could make a couple more stops before the kids got home. I stopped by the cemetery and bought Tommy some Valentine's things. I brought him a balloon from Alyssa and then I bought him one of those ice cream sundaes that is made out of carnations, I thought he would love that. I got a phone call from the Special Ed Dept and we set up another IEP for Ciara on Wednesday to discuss her getting back in school. I stopped by a friends’ house and she let me borrow her “Special Education Rights & Responsibilities” book that has EVERY law in it so that will help out, thanks Lisa! When the kids got off the bus, I put them in the car and I picked up Mason at school. My mom and my sister met us at my house and then we all went out to eat for Valentine’s Day. Ciara was a little cranky during dinner, but I didn’t bring her wheelchair with so she probably was uncomfortable sitting in the other wheelchair. After dinner I took Mason back home and it was about that time that my stomach started cramping. I sat down in the recliner and the next thing I remember was it was 8:00. I got up and changed the kids and then I fell asleep again, I wonder if I eat something weird.
TUESDAY’S JOURNAL:
Ciara woke me up around 5:00 this morning, she was a little fussy and I couldn’t get her to go back to sleep. I got up and started getting things ready for Hunter to go to school. When I got him up to dress him, Ciara had finally fallen asleep again. Hunter was very happy when I woke him up, usually he fusses a little and then goes back to sleep and then I have to drag him out to the bus. After I dressed him he watched some cartoons until the bus came. After he left for school, I had a bite to eat and Ciara was still sleeping. She woke up around 9:30 so I fed her, dressed her, and then we went out to the store, then back home. Ciara has been so good today, she hasn’t made a peep and she just looks wonderful and is VERY alert. I know that last week at school they have been working with her a lot and we have all noticed that she has been much more alert and responsive and that is wonderful. Hunter came home from school around 2:20 and he was happy when I got him off the bus. My sister and Mason came over and we watched a video. Mason needs new shoes so we had to rush over to the shoe store before they closed. He is so excited about his new Nikes, he is so funny. Oh, to be 12 again! I dropped him off at his dad’s house and then the kids and I went back home. I fed them dinner and then Hunter crawled up on the couch and fell asleep around 6:00 or so. Ciara didn’t go to sleep until 10:30, she hasn’t been sleeping as much lately which is a good thing, but man is it more work! February 25th is National MPS Day. I sent a letter to several newspapers but nobody has gotten back to me. I was hoping that somebody would do a story on that day but I will keep trying. MPS Day is a day to raise awareness of all the MPS disorders. It is a day to celebrate our children and to remember the family and friends that we have lost. TKT has arranged for the MPS Society together with a few reps from their offices to ring the bell for the Nasdaq market opening in honor of MPS Awareness Day on Friday, February 25th, how cool is that! I sent a letter to the school principal and he called me yesterday. He is going to put something in the school newsletter, telling the parents about MPS Day and asking them to send their kids to school on February 25 wearing purple, which is the MPS Society’s color, it is the color of COURAGE. You can read what he wrote in the school newsletter by clicking here, PRINCIPAL'S SCHOOL LETTER. I am going to give out the purple ribbons for everybody to wear and I am going to bring snacks for the class that day. I haven’t decided what to bring yet, but I have a feeling whatever it is, it will be purple! For those of you who are living in the Edwardsville, IL area or if you would like to help out, I have a favor to ask of you. Our friend Kraig has MPS-II and he is having a bowling fundraiser to help raise money for the MPS Society. For more information you can visit the KLENKE BOWL WEBSITE or stop by KRAIG'S JOURNAL for more information. They are also looking for items for the raffle prizes and silent auction!
Hugs To All and ^^Angel^^ 
Monday, February 14, 2005 10:23 PM CST
MONDAY 7:15 AM UPDATE: Ciara is doing wonderful! She ate pizza for dinner and a while piece of birthday cake. I couldn't keep her sitting down last night, she kept jumping off the couch and walking around the living room. I haven't seen her do that in a long time, she also kept waving her arms around and chattering up a storm. There is another problem that I haven't mentioned yet and I don't have time right now but I will tell you all about it tonight when I do my journal. Thursday we had Ciara and Hunter's IEPs and the school said that they don't want Ciara there anymore. Today is supposed to be her last day at school but I am going to fight it, she deserves to go to school! SUNDAY 10:45 AM UPDATE: The doctor just came in and said that he was surprised that Ciara has responded so well to the medications. He said that they are not doing anything here that I can't do at home so she is being discharged right now. YIPPEEE!!!!
SUNDAY 8:00 AM UPDATE: Ciara is still doing wonderful. I will post another update after I talk to the doctor and find out what's going on, I haven't seen one since we have been here.
SATURDAY’S JOURNAL:
The nurse woke me up at 6:00 this morning so I didn’t get much sleep last night, but then again, I am used to that. Ciara slept all night long, but her monitors kept going off so every few minutes, I was up looking at them to see what she was doing. She continued to sleep and I tried to wake her up several times, but she just wanted to sleep. Around 10:00 I sat her up and tried to feed her some applesauce. When I put the first spoonful in her mouth, she woke up and almost inhaled all of her applesauce, she was starving. She ate about half of it and because I had to take her oxygen mask off to feed her, her pulse ox went down to 82o I put her mask back on. Once it went back up, I finished feeding her and them she took a few sips of juice before I had to put the mask back on her. John took Hunter over to our friend’s house, the Mackey’s, so that he could come and spend the day at the hospital with us. John was here for about half an hour and then I went home to get a few things done because I don’t know when we will get to come home again. I called John to see how Ciara was doing and he said that she had been without the oxygen mask for an hour and was doing great, he just fed her again. I packed up a lunch for Hunter and brought it over to the Mackey’s so he would have some of his favorites to eat, he can be picky at times. When I got there, Hunter was sitting on the porch in his wheelchair and little Kenny was pushing him around, it was so cute. Little Kenny is Tommy’s age and he LOVES Hunter because he can play rough with Hunter and Hunter thinks it funny, the other kids always cry. Debbie said that they took Hunter to the soccer game and he loved it. He and little Kenny shared his snacks while they watched the game and then they went home. I stayed for a few minutes but then I had to get back to the hospital and Debbie was taking Hunter to another soccer game so I know that he is having a great day today. When I got back to the hospital, Ciara was sitting up in the bed and looking pretty good, she still didn’t need any oxygen. John said that the doctor came in and said that she got the pneumonia because she aspirated so he is going to see if they can push up her feeding tube surgery before she gets another pneumonia. John went out to get a pizza for lunch and while he was gone, his sister Julia stopped by for a visit. I was laying in bed with Ciara when she walked in so while we talked, Ciara fell asleep. When John came back with the pizzas we all ate and then Julia had to leave. Ciara is still doing very well, I am surprised at how fast she turned around this afternoon. Around 5:00 she fell asleep so John and I went in search of the cafeteria, but it was closed so we just got a couple sodas from the machine and then went back up to our room. Ciara was still sleeping so John went home to get Hunter. He decided not to work again tomorrow because we don’t know what to do with Hunter. Tomorrow is Russell’s birthday party so John is going to take Hunter to the party, they are going to see the new Pooh movie at the theater and then for pizza so Hunter will have fun. Around 7:00 I fed Ciara some dinner and she drank a cup of juice. She has been a little fussy today, I think that she has been in the bed too much so I got her up and put her in her wheelchair and she was happy. She has been sitting in it for about an hour, just watching the nurses and playing with her little toy. It is 8:30 and I am hoping that she will go to bed fairly early, but right now she is still in her wheelchair watching the nurses in the hall and having a good time. I took a few pictures but I will try to put them up tomorrow night when I do the journal again. I would like to thank all of your for the prayers, they are working and we love you all!
Hugs To All and ^^Angel^^ 
Saturday, February 12, 2005 0:20 AM CST
SATURDAY 3:00PM UPDATE: Ciara has been off of the oxygen for the past two hours and is doing great. I ran home and there was a message from the surgeon, her feeding tube surgery is scheduled for March 10. When I got back to the hospital, John said that the doctor thinks she got this pneumonia because she aspirated so that should push her surgery up sooner. If she continues to do this good, she should get to go home on Monday. Right now she is nibbling on popcorn chicken and potato wedges. Hunter is staying with some friends, the fire Chief, and he has been having a great day too!
SATURDAY 12:30 PM UPDATE: Ciara is still pretty much the same. They have turned down her oxygen a little bit but I haven't heard anything or seen a doctor since last night. I can tell you one thing, Kaiser is nothing like Duke! Who would have thought that I would be wishing to be back at Duke again? Anyway, I will keep you posted so keep checking in!
SATURDAY 8:00AM UPDATE: This is Alyssa, I just talked to Alicia and Ciara has bilateral pneumonia significantly in both lungs. She still has a slight fever and she had a seziure last night. She has been asleep most of the time she has been there. Either I or Alicia will update as we know more. Keep praying!
Just a quick update, I still don't really know anything. Yesterday when I went to school I noticed that Ciara wasn't breathing right. Last night she was doing the same thing and then again this morning she was doing it. I gave her some cold medicine this morning before she went to school, hoping it would help her breath better. As soon as she came home from school this afternoon she was really having a hard time breathing. She was laboring to breath and she was retracting so we took her to the hospital. They took an xray arond 5:00 but it is now 10:30 and I still don't have the results. They admitted her, started an IV antibiotic and she is on oxygen and breathing treatments. I am really having a hard time with this whole thing, being there with her just brought back all of the things that Tommmy went thru and I just cried all night. The hospital is an hour away from our house so John's sister Kathy is sitting with Ciara while we went home. John and Hunter will stay home while I grab Ciara's meds and some diapers, Kaiser doesn't have either for her, and I am going back to the hospital to stay with Ciara. I don't know if I will be able to get on-line while I am there but I will try. If you want to send me an email, please use mps3mom@yahoo.com or just sign the guestbook and I will get back to you. I don't think my cellphone works in the hospital but Ciara is in room 423 and the phone to the room is (916) 688-2926. February 25th is National MPS Day. I sent a letter to several newspapers but nobody has gotten back to me. I was hoping that somebody would do a story on that day but I will keep trying. MPS Day is a day to raise awareness of all the MPS disorders. It is a day to celebrate our children and to remember the family and friends that we have lost. TKT has arranged for the MPS Society together with a few reps from their offices to ring the bell for the Nasdaq market opening in honor of MPS Awareness Day on Friday, February 25th, how cool is that! I sent a letter to the school principal and he called me yesterday. He is going to put something in the school newsletter, telling the parents about MPS Day and asking them to send their kids to school on February 25 wearing purple, which is the MPS Society’s color, it is the color of COURAGE. You can read what he wrote in the school newsletter by clicking here, SCHOOL NEWSLETTER I am going to give out the purple ribbons for everybody to wear and I am going to bring snacks for the class that day. I haven’t decided what to bring yet, but I have a feeling whatever it is, it will be purple! For those of you who are living in the Edwardsville, IL area or if you would like to help out, I have a favor to ask of you. Our friend Kraig has MPS-II and he is having a bowling fundraiser to help raise money for the MPS Society. For more information you can visit the KLENKE BOWL WEBSITE or stop by KRIAG'S JOURNAL for more information. They are also looking for items for the raffle prizes and silent auction! I have put together a list of some of the Caringbridge websites that I have been following over the past couple of years so I thought that I would pass it on to all of you. FRIEND'S WEBSITE
Hugs To All and ^^Angel^^ 
Sunday, February 6, 2005 1:34 PM CST
UPDATE 6:00pm PST.....hey everyone this is Alyssa, updating for Alicia. Ciara is being admitted to the hospital...she is not breathing well and her pulse ox is at 86. Please pray...pray hard. Pray for Ciara and for Alicia as well. This is so hard for her. She just lost Tommy and....just please pray...thank you...i will update again as i have more info
FRIDAY 3:00 PM UPDATE: We are on our way to the hospital with Ciara. She has been having some trouble breathing and it really concerns me. I will update as soon as I know something. Thanks for the prayers!
FRIDAY’S JOURNAL:
The kids aren’t going to school today because Ciara has an appointment with the surgeon to discuss her feeding tube. When we got to the hospital we didn’t have to wait at all, I was surprised. The doctor and I discussed several options that Ciara has and we agreed that she DOES need a feeding tube but he wants to talk to Dr. Cannon first and then they will get her on the surgery schedule. Hunter was very good while we were there, he just sat in the chair next to me and listened. After we left the hospital I stopped to get the kids something to eat and then we were off to Stockton to pick up John’s paycheck and then we headed home. When I got home I stopped at the bank and then I had to meet my mom at the store, then I went back home. Ciara was a little fussy so I laid her on the couch and she took a nap. That was about all we did today. When John came home in the evening I made dinner, we watched some TV, the kids took a bath and then it was bedtime.
SATURDAY’S JOURNAL:
John went to work this morning so the kids and I slept in and then had some breakfast. We spent the morning watching TV and goofing around. In the afternoon I ran to the grocery store and then went home. John came home around 3:00 and we decided to take the kids to the school to play in the equipment. When we got there, there was a backhoe and they were putting in new wood chips so we went back home. I grabbed the tennis rackets and balls and we drove to Detert Park. When we got there, Hunter was sleeping so we parked right next to the tennis courts and left him in the car to nap. We put Ciara in her wheelchair and parked her by the fence so she could be outside and watch us play. It was around 4:30 when we got there so it was starting to get a little windy and cold so I went to put her in the car where it was warm. I was holding her hand and we were walking to the car when she stumbled backward and her hand, it was covered in drool, slipped out of mine and she fell backwards and hit her head really hard on the asphalt. Of course she was screaming and she has a lump on the back of her head and I feel aweful. I held her while John checked her out and then I put her in the car and she drank her juice and watched us play. When we were finished playing, Hunter was still sleeping so we just let him nap, it was getting dark so we will have to take him to the park tomorrow. We went back home and had dinner and Ciara ate a lot. She has been fussy for the past couple of days or so but I think it is because she hasn’t gone “#2” in 4-5 days. I have given her laxative 3 times but nothing happened yet, darn it. We watched some TV and went to bed early. February 25th is National MPS Day. I sent a letter to several newspapers but nobody has gotten back to me. I was hoping that somebody would do a story on that day but I will keep trying. MPS Day is a day to raise awareness of all the MPS disorders. It is a day to celebrate our children and to remember the family and friends that we have lost. TKT has arranged for the MPS Society together with a few reps from their offices to ring the bell for the Nasdaq market opening in honor of MPS Awareness Day on Friday, February 25th, how cool is that! I sent a letter to the school principal and he called me yesterday. He is going to put something in the school newsletter, telling the parents about MPS Day and asking them to send their kids to school on February 25 wearing purple, which is the MPS Society’s color, it is the color of COURAGE. You can read what he wrote in the school newsletter by clicking here, SCHOOL NEWSLETTER I am going to give out the purple ribbons for everybody to wear and I am going to bring snacks for the class that day. I haven’t decided what to bring yet, but I have a feeling whatever it is, it will be purple! For those of you who are living in the Edwardsville, IL area or if you would like to help out, I have a favor to ask of you. Our friend Kraig has MPS-II and he is having a bowling fundraiser to help raise money for the MPS Society. For more information you can visit the KLENKE BOWL WEBSITE or stop by KRIAG'S JOURNAL for more information. They are also looking for items for the raffle prizes and silent auction! I have put together a list of some of the Caringbridge websites that I have been following over the past couple of years so I thought that I would pass it on to all of you. FRIEND'S WEBSITE
Hugs To All and ^^Angel^^ 
Thursday, February 3, 2005 10:27 PM CST
TUESDAY’S JOURNAL:
After I got the kids up and dressed for school, I took them out to the school bus. Hunter sat up front like he always does, and after they strapped Ciara’s wheelchair in the back, Ciara grabbed Christina’s hand and wouldn’t let go. Christina is in her class and she is also in a wheelchair. It was so cute, Ciara just wanted to hold her hand on the ride to school. I ran out to get a few things done before the kids came home from school and then I went back home. John came home around noon or so and so did Hunter. When Ciara came home we put the kids in the car, picked up my mom, and we were off. I can’t tell you where we went right now, but we didn’t get back home until 8:30. We missed the fire dept meeting so we stopped by the fire chief’s house for a few minutes and then we went home. The kids had a snack, watched a little TV, and everybody went to bed.
WEDNESDAY’S JOURNAL:
When I got up this morning I made the kids’ lunches for school and then I got Hunter dressed. He didn’t want to wake up so after I got him dressed, he went back to sleep. I went into the bedroom to get Ciara ready for school and I heard her snorting and breathing funny. I turned the light on and saw that she was having a seizure. I picked her up and put her on my lap and held her until it was over. After 5 minutes I wasn't sure if it was over or not, she wasn't twitching anymore, but her body was still stiff as a board and her mouth was still making weird faces. I had to lay her back down so that I could get Hunter off to school but I just checked on her and she was trying to sit up. I made her lay down and I am keeping her home from school today. She kept sitting up in bed so I brought her out to the living room and fed her some breakfast. She ate a lot today, but has been cranky for most of the day. She doesn’t want to lay down or sit up, she just keeps fussing. She did take a nap so that was a nice little break for me. Hunter came home happy, the teacher said that he had a great day at school. We didn’t do much for the rest of the afternoon. John didn’t get home until 6:30 or so which surprised me, I thought he wasn’t coming home but they cancelled his load. I made dinner and everybody ate, but Ciara was still fussing all evening long. Ciara took a tiny nap and when she woke up, I tossed the kids in the tub, put their jammies on, and they were off to bed.
THURSDAY’S JOURNAL:
Last night I fell asleep in the recliner. Early this morning I woke up when I heard and felt something bump the table at the end of the couch. I looked up and I saw a short, white “thing” at the end of the couch. It moved past the couch and bumped into the table, I actually heard it and felt it. I thought it was John walking to the bathroom, I wasn’t fully awake, but when I yelled to him, he was in bed and the kids were asleep. I looked around but I didn’t see anything again so I went back to sleep. A couple of minutes later I had a dream about Tommy, I was watching videos of him running around and being silly. Tommy was the short, white energy ball that came to visit me! I told Alyssa what happened and she said that Tommy had been busy, he paid her a visit yesterday too. THANK YOU TOMMY, I LOVE YOU BABY!!!
After I got the kids dressed for school, Hunter danced around to Barney while we waited for the bus. When they left for school, I ran out to find a certain kind of juice cup for Ciara. I had to go to 5 stores before I found them. I stopped at the school to drop of Ciara’s weight gainer drink and then I went home. Hunter came home about 15 minutes later and he watched some TV. I fell asleep in the recliner, again, so I didn’t hear the bus pull up, until they honked the horn. I brought Ciara inside and she fell asleep on the couch. Mason and my sister came over for a little bit and after they left, the kids and I watched some cartoons. In the evening, after Ciara woke up, I made dinner and that was about it for the rest of the evening. Michelle, Jillian’s mom, called so we chatted for a little while. Today is Michelle’s birthday so stop by and send her your birthday wishes! JILLIAN'S JOURNAL Tomorrow Ciara has an appointment with the surgeon to discuss her feeding tube surgery. They don’t want to do the surgery until she gains some weight, but she can’t gain any weight until she gets the feeding tube, that is the whole purpose of it. I am going to be fighting them, again, so wish me luck! I also put up some new pictures of the kids yesterday so check those out. There are a few pictures that show how skinny Ciara is now. Some of you have asked how Ryan is doing since his car accident. He is still in the ICU and here is the latest from his mom:
As for Ryan, we had a very rough and scary Tuesday evening and night. I went up to Amador County Tuesday to help the Stark family get started on the arrangements for Travis and returned about 8pm to see Ryan. What I found was Ryan was in the middle of some kind of mild stoke or unexplained neuro event. Ryan's right pupil was "blown" or as big as it can get, not responsive to light and slightly cloudy. He was drooling and listing to the right, but was moving his arms in the same manner he had been. He was rushed down for CT scan that didn't show any significant changes from the previous one. He experienced at least 3 minor seizures after returning from CT. The doctors checked him out and all they could say was that he is stable and they really don't know what was going on. The doctor changed some of his meds to see if that would help with his fever which was still out of control running around 102. This brings us to today. His pupils are back to normal and he is starting to track to the left. His fever is 100 and holding. While I was in there just a short time ago, he was focused on me and tried to touch my face with his right hand. As we all know, Ryan is truly an amazing kid!!!! February 25th is National MPS Day. I sent a letter to several newspapers but nobody has gotten back to me. I was hoping that somebody would do a story on that day but I will keep trying. MPS Day is a day to raise awareness of all the MPS disorders. It is a day to celebrate our children and to remember the family and friends that we have lost. TKT has arranged for the MPS Society together with a few reps from their offices to ring the bell for the Nasdaq market opening in honor of MPS Awareness Day on Friday, February 25th, how cool is that! I sent a letter to the school principal and he called me yesterday. He is going to put something in the school newsletter, telling the parents about MPS Day and asking them to send their kids to school on February 25 wearing purple, which is the MPS Society’s color, it is the color of COURAGE. You can read what he wrote in the school newsletter by clicking here, SCHOOL NEWSLETTER I am going to give out the purple ribbons for everybody to wear and I am going to bring snacks for the class that day. I haven’t decided what to bring yet, but I have a feeling whatever it is, it will be purple! For those of you who are living in the Edwardsville, IL area or if you would like to help out, I have a favor to ask of you. Our friend Kraig has MPS-II and he is having a bowling fundraiser to help raise money for the MPS Society. For more information you can visit the KLENKE BOWL WEBSITE or stop by KRAIG'S JORNAL for more information. They are also looking for items for the raffle prizes and silent auction! I have put together a list of some of the Caringbridge websites that I have been following over the past couple of years so I thought that I would pass it on to all of you. FRIENDS WEBSITE
Hugs To All and ^^Angel^^ 
Monday, January 31, 2005 10:16 PM CST
I just put up some new pictures so don't forget to check them out! WEDNESDAY 3:00 PM UPDATE: Ciara hasn't had any more seizures today and she has slept for most of the day so far. Right now she is awake so I am going to get her something to eat. Thank you all for signing in and sending your best wishes for Ciara!
WEDNESDAY 6:30 AM UPDATE: I went into the bedroom to get Ciara ready for school and I heard her snorting and breathing funny. I turned the light on and saw that she was having a seizure. I picked her up and put her on my lap and held her until it was over. After 5 minutes I wasn't sure if it was over or not, she wasn't twitching anymore, but her body was still stiff as a board and her mouth was still making weird faces. I had to lay her back down so that I could get Hunter dressed for school but I just checked on her and she was trying to sit up. I made her lay down and I am keeping her home from school today. I will keep you posted.
WEDNESDAY’S JOURNAL:
I got the kids up and off to school and then I just made myself some breakfast and watched a little TV before I headed out. I ran out to the grocery store and then ran a couple errands for my mom and then headed back home. Hunter looked tired when the school bus brought him home but when I brought him inside, he had snack and watched cartoons while we waited for Ciara to come home. Mason stopped by for a little while before he went over to my sister’s house. John is doing an overnight haul so the kids and I didn’t do much for the rest of the day. In the evening I fed them dinner, Hunter is eating again and Ciara ate well also. We watched some TV and Ciara and I went to bed fairly early, Hunter was up all night long.
THURSDAY’S JOURNAL:
After I got the kids dressed and ready for school, I made a pot of chili while we waited for the bus to come, now I dinner will be ready whenever John gets home. I spent the morning running around getting a few things done before the kids get home. Hunter was awake and happy when he came home from school. He has been having a lot of trouble walking these days. His right foot is really causing problems for him. He is always falling and spends most of his time crawling instead of walking because his foot is turning inward and he can’t bare much weight on it. It breaks my heart to watch him because he has always been running everywhere and now he can’t. Ciara came home and she was sleeping so I brought her inside and put her on the couch and she continued to sleep. Not much happened for the rest of the day. John came home in the evening so I made dinner and he and Hunter ate, Ciara was still sleeping. Eventually I woke her up so I could feed her a little something and give her her meds and she went right back to sleep.
FRIDAY’S JOURNAL:
I decided to keep Ciara home today, just to make sure she was alright. Hunter didn’t want to wake up so I had a hard time getting him out to the school bus. After I sent him off, I had something to eat and then I got Ciara up and fed her. Around 10:00 I put her in the car and we headed out to Lodi and then went back home. It was raining so hard that I couldn’t even see the road. When we got home I stopped at the grocery store but I forgot to put Ciara’s wheelchair in the back of the van so she will have to walk thru the store. It was still pouring rain, but when I pulled up to the store, one of the bag boys came running out with an umbrella and carried it over us as we walked into the store, it was very nice. Ciara walked thru the whole store, she only started fussing when we were waiting to check out. When we were on our way out to the car, the bag boy came rushing over with his umbrella and carried it over us as we walked to the car and then while I was putting Ciara in the car, he ran back into the store and brought our groceries out and put them in the car too. I must say, it was very nice of him and they weren’t doing that for anybody else either. We went home and I put the groceries away while Ciara took a nap on the couch. Hunter came home and he was in a happy mood, he was even playing with the bus driver and he didn’t want to get out of the seat. I brought him inside, gave him a snack, and then he took a little nap too. Mason and my sister stopped by after school but they left after an hour or so. Ciara’s prescriptions are ready, finally, so I put the kids in the car and drove to Sacramento to pick them up. It was still raining but I asked Tommy to send me a rainbow if he was with me. A minute later, there it was, thanks Tom Tom! I picked up her prescriptions and it only took 10 minutes and we were on our way home. John was already home by the time we got there around 6:00 so I made some dinner and we watched a little TV and then went to bed.
SATURDAY’S JOURNAL:
John went to work early this morning and I got to sleep in until 8:00 which was wonderful. The kids woke up around 10:00 or so and watched a little TV while I got them something to eat. A little bit later I got them dressed and I took them to Mason’s basketball game. I wasn’t sure how I was going to do that since I was by myself and I had two wheelchairs to push, but I guess I will figure it out when I get there. When I got to the school I put the kids in their chairs and pushed them, side by side up to the gym. Thank God the door was open so I just pushed them thru and we watched the game, Mason’s team won! I left right before it was over because I had to pick up John and we had a few things to take care of. When we were finished we went for a drive, it was a beautiful day today. On the way home we stopped at my dad’s to see what they were up to. Ciara was sleeping but Hunter roamed around. I was surprised to see how much water was in the lake, last time I was there the lake was very low. It was starting to get dark so we headed home and I made dinner. Ciara took a nap, but Hunter wasn’t done eating, he got into the chocolate doughnuts and the Oreos. By the time he was finished, his face was covered in chocolate, but he was happy. John was tired and not feeling well so he went to lay down and we never saw him again. Around 10:00 I put their jammies on them, got their meds for them and it is now 11:00 and they are still awake, but looking sleepy. I was working on the computer for about half an hour and then I went over to sit in the living room where Ciara was laying on the couch. I noticed that she was slumped to the side a little and her arm was waving over her head. I tried to sit her up straight and she was very stiff and a little shaky. I am not sure if she was having a seizure or not because I put her juice cup in her mouth and she started drinking it, which she couldn’t do if she was having a seizure, but she was acting like she was having one, except that she was alert.
SUNDAY’S JOURNAL:
We had planned on doing a few things today but John was sick so we had to go to Kaiser in Sacramento to see the doctor. We were almost to the hospital when Ciara started coughing and then she threw up. 
When we got to the hospital I stayed in the car with the kids while John went in to see the doctor. I was certain he had bronchitis or strep throat but the tests came back negative. The doctor said it was most likely a virus and he would have to wait it out. I felt really bad for him, his throat was killing him and he couldn’t eat anything. We did stop and get him a shake and stopped to get Ciara something to wear since she was covered in you-know-what, and then we headed back home. By this time it was 6:00 so I got Hunter something to eat, but not Ciara. Everytime she would cough, she would scream, I think her throat is hurting too, poor little thing. She went right to sleep when we got home so I just let her rest. John went to bed early because he still isn’t feeling well and he has to go to work at 3:00 in the morning. Ciara woke up around 10:00 last night so I fed her and she went back to sleep, so did Hunter.
MONDAY’S JOURNAL:
I sent Hunter off to school, but I am keeping Ciara home one more day, just to make sure she is feeling better. When Ciara woke up I gave her some juice and she drank the whole cup. I got her dressed and we went out to the store to get Hunter some melon for his lunch. We stopped by the school to drop it off for him and they asked if Ciara could stay. Since she was feeling good and very alert and happy, I let her stay. I had to stop by my mom’s and then I went back home. Hunter was happy when he got off the bus and he was walking a little bit better. He watched cartoons, as usual, and then Ciara came home at 2:30. She was crying when I went out to get her but she was happy when I brought her inside and gave her some juice. I had to put the kids in the car to pick up Mason from school and then we went to Jackson to meet my mom at the laundry mat. When she was finished I took her home and then the kids and I went home. I was surprised that John was home already, I thought he was doing an overnight. He still isn’t feeling well so he took it easy for the rest of the evening. I fed the kids dinner and gave them a bath 
and it was bed time. February 25th is National MPS Day. I sent a letter to several newspapers but nobody has gotten back to me. I was hoping that somebody would do a story on that day but I will keep trying. MPS Day is a day to raise awareness of all the MPS disorders. It is a day to celebrate our children and to remember the family and friends that we have lost. TKT has arranged for the MPS Society together with a few reps from their offices to ring the bell for the Nasdaq market opening in honor of MPS Awareness Day on Friday, February 25th, how cool is that! I sent a letter to the school principal and he called me yesterday. He is going to put something in the school newsletter, telling the parents about MPS Day and asking them to send their kids to school on February 25 wearing purple, which is the MPS Society’s color, it is the color of COURAGE. Here is the letter that the Principal sent home to the parents SCHOOL NEWSLETTER I am going to give out the purple ribbons for everybody to wear and I am going to bring snacks for the class that day. I haven’t decided what to bring yet, but I have a feeling whatever it is, it will be purple! For those of you who are living in the Edwardsville, IL area or if you would like to help out, I have a favor to ask of you. Our friend Kraig has MPS-II and he is having a bowling fundraiser to help raise money for the MPS Society. For more information you can visit the KLENKE BOWL WEBSITE or stop by CRAIG'S JOURNAL for more information. They are also looking for items for the raffle prizes and silent auction! I have put together a list of some of the Caringbridge websites that I have been following over the past couple of years so I thought that I would pass it on to all of you. FRIENDS WEBSITE
Hugs To All and ^^Angel^^ 
Wednesday, January 26, 2005 1:10 AM CST
MONDAY AM UPDATE:I just posted alittle update at the bottom of this journal so check it out. I will be doing another update tonight, I already have it typed up so you can be sure I will update, hehe.
MONDAY’S JOURNAL:
I decided to keep the kids home one more day, just to make sure that they didn’t have runny noses or anything, plus they need the rest. Mason called and asked if I could give him a ride to school so I did and went back home. I didn’t really do much of anything today since the kids were home. When Hunter woke up I noticed that his nose still was not runny so that was a good thing, hopefully he is almost over this darn cold. Hunter and I had some lunch but Ciara didn’t get up until I woke her up at 2:00 this afternoon. I kept checking in on her to make sure she was still breathing, she is just wiped out from this cold, poor little baby. John is doing an overnight haul so he isn’t coming home tonight so the kids and I just took it easy. Mason came over after school and was asking me how to build a website. I have never actually done that before and he really wants to make his own so we spent a couple of hours making it. He is 12 years old and he really impressed me, I was surprised at how much he know about HTML coding, etc. He made his website and is very happy with it, of course it is an homage to “Runescape,” which is an on-line computer game he plays. I took him home around 5:30 and then I made some dinner. After the kids ate, Hunter danced around the living room while watching his cartoons, it was cute. I gave them a bath, put their jammies on and put Ciara to bed. Hunter didn’t want to go to sleep so he stayed up in the living room, watching TV.
TUESDAY’S JOURNAL:
Hunter was awake ALL night long, he fell asleep around 5:45 and I got him up at 6:20 for school. I was surprised when he actually woke up and was smiling and watching cartoons, I thought he would be cranky. After I got the kids dressed and off to school, I headed out to get a bunch of errands done, then I went back home. Hunter looked tired when the bus brought him home but he went inside and relaxed. While we waited for Ciara to come him I did a little cleaning and baked some peanut butter cookies. Hunter hasn’t eaten much for over a week and they said that he didn’t eat anything at school today. When he saw me with a cookie in my hand, his eyebrows shot up, he smiled, and then snatched that cookie out of my hand so fast. I just laughed, he ate 3 cookies. Ciara came home from school and she was fussing a little when I got her off the bus, but I brought her inside and she drank some juice and took a nap. John came home around 3:00 but went out on a couple calls for the fire dept. I made dinner in the evening and then John went to his fire meeting while the kids and I stayed home and didn’t do much of anything. It is now 11:30 and I am going to put Ciara in bed, she is about to fall asleep on the couch. John just went out on another medical aid call and Hunter is still up and not looking like he is going to sleep any time soon.
THE REST OF THE WEEK
Not really much to report for the week. The kids have been sick for a week now so we haven’t been doing much. Not to mention it hasn’t stopped raining for weeks so again, not doing much. On Wednesday I had to go to school to meet with the occupational therapist and the wheelchair guy to get things started on Ciara’s new wheelchair. Her has been broken since school started and she has been using Hunter’s wheelchair. Since he has been having a lot of trouble walking lately, he needs to use his wheelchair and we have to get Ciara a new one. We decided to get her the Convaid Rodeo wheelchair because it reclines all the way back which will come in handy when we have to start feeding her with her feeding tube. They are also going to get an IV pole to put on the chair in case we have to use a pump for her feedings. They are going to put a ton of pads in her chair so she doesn’t get any more bed sores. Her spine pokes out down near her lower back and she gets a lot of sores there from the pressure so they are going to cut out a section of the wheelchair pad, right where her spine pokes out, and put in a special foam so that will be more comfortable for her too. They are doing a lot of things to her new chair to make her comfortable but it is going to be ugly. I guess as long as she is comfortable, that is all that matters. It just makes me so angry that we have to do this, that she has to go thru all of this crap, it’s just not fair. They are also going to order her an alternating pressure mattress for the bed. The mattress has air that constantly moves so she doesn’t get any pressure on her body and it will stop the bed sores too. I have put together a list of some of the Caringbridge websites that I have been following over the past couple of years so I thought that I would pass it on to all of you. FRIEND'S LINKS
Hugs To All and ^^Angel^^
Wednesday, January 26, 2005 1:10 AM CST
MONDAY AM UPDATE:I just posted alittle update at the bottom of this journal so check it out. I will be doing another update tonight, I already have it typed up so you can be sure I will update, hehe.
MONDAY’S JOURNAL:
I decided to keep the kids home one more day, just to make sure that they didn’t have runny noses or anything, plus they need the rest. Mason called and asked if I could give him a ride to school so I did and went back home. I didn’t really do much of anything today since the kids were home. When Hunter woke up I noticed that his nose still was not runny so that was a good thing, hopefully he is almost over this darn cold. Hunter and I had some lunch but Ciara didn’t get up until I woke her up at 2:00 this afternoon. I kept checking in on her to make sure she was still breathing, she is just wiped out from this cold, poor little baby. John is doing an overnight haul so he isn’t coming home tonight so the kids and I just took it easy. Mason came over after school and was asking me how to build a website. I have never actually done that before and he really wants to make his own so we spent a couple of hours making it. He is 12 years old and he really impressed me, I was surprised at how much he know about HTML coding, etc. He made his website and is very happy with it, of course it is an homage to “Runescape,” which is an on-line computer game he plays. I took him home around 5:30 and then I made some dinner. After the kids ate, Hunter danced around the living room while watching his cartoons, it was cute. I gave them a bath, put their jammies on and put Ciara to bed. Hunter didn’t want to go to sleep so he stayed up in the living room, watching TV.
TUESDAY’S JOURNAL:
Hunter was awake ALL night long, he fell asleep around 5:45 and I got him up at 6:20 for school. I was surprised when he actually woke up and was smiling and watching cartoons, I thought he would be cranky. After I got the kids dressed and off to school, I headed out to get a bunch of errands done, then I went back home. Hunter looked tired when the bus brought him home but he went inside and relaxed. While we waited for Ciara to come him I did a little cleaning and baked some peanut butter cookies. Hunter hasn’t eaten much for over a week and they said that he didn’t eat anything at school today. When he saw me with a cookie in my hand, his eyebrows shot up, he smiled, and then snatched that cookie out of my hand so fast. I just laughed, he ate 3 cookies. Ciara came home from school and she was fussing a little when I got her off the bus, but I brought her inside and she drank some juice and took a nap. John came home around 3:00 but went out on a couple calls for the fire dept. I made dinner in the evening and then John went to his fire meeting while the kids and I stayed home and didn’t do much of anything. It is now 11:30 and I am going to put Ciara in bed, she is about to fall asleep on the couch. John just went out on another medical aid call and Hunter is still up and not looking like he is going to sleep any time soon.
THE REST OF THE WEEK
Not really much to report for the week. The kids have been sick for a week now so we haven’t been doing much. Not to mention it hasn’t stopped raining for weeks so again, not doing much. On Wednesday I had to go to school to meet with the occupational therapist and the wheelchair guy to get things started on Ciara’s new wheelchair. Her has been broken since school started and she has been using Hunter’s wheelchair. Since he has been having a lot of trouble walking lately, he needs to use his wheelchair and we have to get Ciara a new one. We decided to get her the Convaid Rodeo wheelchair because it reclines all the way back which will come in handy when we have to start feeding her with her feeding tube. They are also going to get an IV pole to put on the chair in case we have to use a pump for her feedings. They are going to put a ton of pads in her chair so she doesn’t get any more bed sores. Her spine pokes out down near her lower back and she gets a lot of sores there from the pressure so they are going to cut out a section of the wheelchair pad, right where her spine pokes out, and put in a special foam so that will be more comfortable for her too. They are doing a lot of things to her new chair to make her comfortable but it is going to be ugly. I guess as long as she is comfortable, that is all that matters. It just makes me so angry that we have to do this, that she has to go thru all of this crap, it’s just not fair. They are also going to order her an alternating pressure mattress for the bed. The mattress has air that constantly moves so she doesn’t get any pressure on her body and it will stop the bed sores too. I have put together a list of some of the Caringbridge websites that I have been following over the past couple of years so I thought that I would pass it on to all of you. FRIEND'S LINKS
Hugs To All and ^^Angel^^
Wednesday, January 19, 2005 10:26 AM CST
I just put up some pictures of the kids so check it out!
SATURDAY’S JOURNAL:
John is doing an overnight so it will just me the kids and myself today. Ciara was up early this morning so I fed her and she watched cartoons on the couch. Once Hunter was up and dressed we went out to the grocery store with my mom. On the way into the store I noticed a Berkeley Farms truck parked by the front door, handing out samples of milk and juice but I didn’t stop. After we paid for our groceries I was walking out to the car so I decided to stop and get a sample of orange juice. I didn’t even say one word to the man that was working there, as soon as I walked up he stopped me and handed me a case of chocolate milk and a case of orange juice for the kids. I was surprised but that was pretty nice of him. I put them in my car and then flagged my mom down as she was pulling out of the parking space and told her what he gave me. She said that he also gave her 2 cases, I wonder why because everybody else only got a little sample bottle. Oh well, I have plenty of orange juice for Hunter and myself, I can’t give it to Ciara because of her reflux. I can’t give them milk either but I am taking to school, the rest of their class will be so excited. I did 7 loads of laundry today, yuck, and then while I was folding everything, Hunter and Ciara took a nap which was nice. Later in the evening John’s cousin stopped by with some wedding dresses and they are beautiful! Read the note below to find out why I have wedding dresses. We spent the rest of the evening watching TV and then it was time for bed.
SUNDAY’S JOURNAL:
The kids slept late today, yippee! I got a few things done around the house and once they were up I fed them breakfast and got them dressed. John came home around 2:00 so we put the kids in the car and headed to Sacramento. We had to go to a computer store to get a new cord for my camera and then a couple other little things that they don’t sell in our little town. When we left the store, Ciara was fussing so we stopped to get something to eat. Ciara ate like a little piggy but Hunter only had a few bites, I don’t think he is feeling well. After they finished eating we headed over to the hospital to visit Ryan. I mentioned him a couple of weeks ago, he was in a very bad car accident and is still in the ICU. They were just taking him out of surgery so they let us in to see him. He looks much better then I was expecting so that was wonderful. Tuesday they will be taking him back to surgery to fix his broken back but they still don’t know if he has any brain damage from the major head trauma he received. I couldn’t stay in his room for too long, it reminded me of Tommy and I just couldn’t do it so I went back out to the waiting room. John’s brother was out there watching Ciara and Hunter so we waited for John to come out and then we went home. It was time for bed but Ciara was screaming and crying, all the way home from Sacramento, so I gave her her pain meds, some Tylenol and some Benedryl and she still didn’t go to sleep until after 2:00 am.
MONDAY’S JOURNAL:
Ciara hs a seizure at 5:30 this morning but it was a mild one and she went right back to sleep. The kids don’t have school today and John isn’t working today so everybody slept in this morning. Once we were all up, it was time for breakfast, got the kids dressed and relaxed for a couple of hours. Hunter wouldn’t eat anything again this morning and he felt a little warm so I gave him some Tylenol and he was better. In the afternoon we took the kids to the movies to see “Racing Stripes” and my mom met us there. Ciara did great thru the whole movie, never made a peep. Hunter has been doing much better when we go out to the movies. Usually he is scared because it is dark and loud but he loved this movie. He never took his eyes off the screen and he just had a blast. He even ate a whole Herhsey’s bar, so he must be starting to feel better. After the movie I ran into the grocery store and we headed home. By the time we got home it was almost 6:00 so I made dinner, we watched some TV and went to bed.
TUESDAY’S JOURNAL:
I didn’t send Hunter to school this morning because he still had a slight fever and a runny green nose so I am going to let him rest today. After I send Ciara off to school, I had some breakfast and then around 10:30 I got Hunter dressed and we went out to run a few errands before Ciara came home. Hunter nose was running like a faucet but otherwise, he was acting more like himself today. He wanted to eat, finally, so I stopped and got him a small order of fries and he ate them all so I know he is feeling better. We went home and I did some dishes, etc and we waiting for Ciara to come home. When her bus pulled up and I opened the door to the bus, all I heard was Ciara snoring, boy that girl can saw some logs! I brought her inside and I didn’t want to wake her up so I left her in her wheelchair. My sister and Mason stopped by after school. Mason wants me to sell some of his video games for him so he can buy some new ones so he dropped them off for me. After they left, Hunter just sat on the couch for a while and watched his cartoon while Ciara continued to sleep. John came home around 5:30 and he wanted to change the oil in my van before it was completely dark outside so while he was doing that, I started dinner, chicken carbonara. After dinner he had to go to his fire department meeting so I started my dinner and then watched some TV. Ciara finally woke up so I fed her, Hunter had already eaten his dinner, and then John came home from his meeting. After we watched the news it was time for bed!
John’s aunt owns a clothing store and sells wedding dresses. She just got the new line in and decided to give me a bunch of her other dresses to sell and we can keep the profits. So, if you know anybody that is getting married, I have a ton of wedding dresses from about $275 - $500 so just send me an email with what size you need and I will let you know what we have. For those of you who are living in the Edwardsville, IL area or if you would like to help out, I have a favor to ask of you. Our friend Kraig has MPS-II and he is having a bowling fundraiser to help raise money for the MPS Society. For more information you can visit the Klenke Bowl 2005 Website or stop by Kraig's Journal for more information. They are also looking for items for the raffle prizes and silent auction!
Hugs To All and ^^Angel^^ 
Thursday, January 13, 2005 10:32 PM CST
MONDAY 5:30 AM UPDATE: Ciara just had a seizure but after it was over, she went back to sleep.
MONDAY 8:00 PM UPDATE: Ciara hasn't had any more seizures today but she has been very fussy and crying alot. Hunter hasn't eaten for a couple of days and I think he has a slight fever tonight and his nose is starting to run.
MONDAY’S JOURNAL:
I let Ciara sleep because she has her Endoscopy today and she can’t eat anything before it so I figured if she sleeps, she won’t be hungry. I got Hunter up, fed, and dressed and then dressed Ciara and put everybody in the car and we were off. I picked up my mom and we drove to Sacramento. When we got up to the doctor’s office, he was running late so they didn’t get Ciara in until noon. She was very alert today, I wish she was that way everybody, it was great to see her like that again. The doctor started an IV and gave her some drugs to knock her out, but it didn’t work. He gave her another dose, but she still didn’t fall asleep so he sprayed that back of her throat to numb it and put the scope down her throat. She did very well, I was surprised, but as soon as it was over, she fell asleep, go figure. The doctor said that she has severe reflux and a hiatal hernia so he wants to start her on a medication to help with the reflux but he doesn’t want to do the surgery for the feeding tube until she gains more weight, darn it! They took her to recovery so while the nurse was with her, I went out to the lobby to see how Hunter was doing. He was crying and not happy so we turned the TV on and I went back to sit with Ciara. After 30 minutes the doctor came out and said that she could go home, yeah! We went down to the pharmacy and then headed home. Ciara slept for most of the night but she did cry a little, I am sure her throat was killing her from the scope and the biopsies they took, poor thing. John had a couple calls for the fire department so he didn’t get back home until 8:30. I fed Hunter dinner but I only gave Ciara her Carnation drink and she went to bed early.
TUESDAY’S JOURNAL:
The doctor said that Ciara could go to school today so I got the kids dressed and sent them on their way. I had to take my mom out to get a few things done, stopped by the school to drop off a snack for the kids and then headed home. Hunter was awake and happy when he got off the school bus so we went inside and he goofed around, bouncing from room to room. I have noticed lately though, that he is having a lot of trouble walking, he has been crawling a lot for the past couple of weeks and it breaks my heart. He has always been on the go and he still wants to go but he just can’t without falling a lot. Ciara was fussy when she came home from school, I am sure her throat hurts. I brought her inside, gave her some meds and put her down on the couch to relax with some juice. John called and said that he wouldn’t be home until late tonight so we just stayed in, watched some TV, had dinner and took it easy. During dinner I wasn’t thinking straight and I gave Ciara something that was a little rough for her to eat because of her throat. Normally it would not have been a problem but her throat is sore from the endoscopy and biopsies so she started screaming and crying. A few minutes later she started coughing and up came the few bites she had taken, they must have gotten stuck in her throat. John came home around 10:30 and while we were watching the news, Ciara had a drink and then we noticed that her breathing sounded funny, like she was straining to breath. We assumed that her throat was swelling so we gave her her pain meds, some Tylenol, and Benedryl and she stopped crying and went to sleep.
WEDNESDAY’S JOURNAL:
I got up around 6:00 and started getting things ready for the kids to go to school. I had just finished getting Ciara dressed when I sat her on the couch. I went to pick up Hunter and noticed that Ciara had fallen over to the side and that is when I saw her face, she was having a seizure. I grabbed her and put her on my lap and called John so come out and hold her because I had to finish getting Hunter dressed because the school bus was going to be here any minute. This seizure was a moderate one, lots of facing and arm/leg twitching. Once her seizure was over, John took her into the bedroom and she has been asleep ever since. Hunter just wouldn’t wake up or stand up so I had to put him in his wheelchair and wheel him out to the bus. John isn’t working today because he is out of hours, a truck drive can only drive so many hours in a certain period, so stayed with Ciara most of the time while I got a few things done around the house. The occupational therapist called so she is going to set up an appointment and we will meet at Ciara’s school to measure her for her new wheelchair. When Mason got out of school, he came over for a few minutes. He said that his school is having a bake sale to raise money for the Red Cross Tsunami Relief and he asked if I would bake some cupcakes for him to take to school, of course I said yes. He went over to his mom’s house and I ran to the store to get some cake mix and John had to pick up some paperwork and then we went home. As I was started to mix the cake batter, my sister called so as I was talking to her, I was measuring out the water and oil for the cake. After I hung up the phone and started stirring it, I realized that I put in an extra cup of oil, yuck! So, I ran back to the store to get more cake mix and then started again. This time I don’t know what I was thinking but I put in an extra egg, AAHHH!!! I fished out one of the eggs and started mixing. I decided that I was going to make rainbow cupcakes like my grandma used to make for us, I think the kids will like them. You make a yellow cake and then divide the batter into 4 bowls. Add different colored food coloring to each bowl and then alternate spoonfuls into the cupcake pan. When I had finished frosting them it was 8:00 so I took them over to Mason’s house and then went home. Ciara went to bed around 10:00 but Hunter wouldn’t go. He screamed, cried, pulled my hair and was just angry until 4:00 this morning. I finally gave him some Benedryl (to knock him out) and some juice and he went to sleep.
THURSDAY’S JOURNAL:
Hunter was up crying until 4:00 this morning and Ciara was up and down all night too so when the alarm went off at 6:00 for school, I decided not to send them since then had just fallen asleep. I spent the morning working on the computer and then the kids woke up around noon or so. John is doing an overnight haul so the kids and I are taking it easy, I don’t really think we will be doing much today. In the afternoon I ran to the store, my sister came with so she and the kids stayed in the car so I could run into the store without dragging everybody along. I dropped her off at home and then the kids and I went back home too. Around 7:00 I made them some dinner, grilled cheese sandwiches. I have noticed that since Ciara started her reflux meds 3 days ago, she hasn’t been fussing as much so I think she is feeling better, thank God! It is now 8:30 and the kid are watching TV but it is about bath time so I have to go.
I would like to thank all of you for signing our guest book, it really means a lot to us to know that you all care! For those of you who are living in the Edwardsville, IL area or if you would like to help out, I have a favor to ask of you. Our friend Kraig has MPS-II and he is having a bowling fundraiser to help raise money for the MPS Society. For more information you can visit Klenke Bowl 2005 website or stop by Kraig's Journal for more information. They are also looking for items for the raffle prizes and silent auction!
Hugs To All and ^^Angel^^
Sunday, January 9, 2005 9:40 PM CST
WEDNESDAY 8:00 AM UPDATE: I had just finished getting Ciara dressed for school when I sat her on the couch. I went to pick up Hunter and noticed that Ciara had fallen over to the side and that is when I saw her face, she was having a seizure. I grabbed her and put her on my lap and called John so come out and hold her because I had to finish getting Hunter dressed because the school bus was going to be here any minute. This seizure was a moderate one, lots of facing and arm/leg twitching. Once her seizure was over, John took her into the bedroom and she has been asleep ever since. Please pray that she doesn't have any more today!
MONDAY 5:00PM UPDATE: Ciara did very well during her Endoscopy today. The doctor said that she has severe reflux and a hiatal hernia. He took a couple biopsies and put her on a medication to help with her reflux. He hasn't scheduled the surgery for her feeding tube yet because he wants her to gain some weight before the surgery so I guess we will just have to wait and see how she does. Right now she is sleeping.
FRIDAY’S JOURNAL:
Once I got the kids dressed and off to school, I drove to Stockton to get John’s paycheck and drop off some paperwork for him and then headed back home. I am having a bad “Tommy” day so far, I cried all the way to Stockton, I just miss my little buddy so much and I can’t believe that he is gone. I keep hoping that it was all a dream and that when I wake up, I will see his little chubby face peaking out from under the blanket at me. Anyway, when I got back home I stopped at the bank and then it was off to the grocery store. It is raining, again, so I want to get everything done before the kids get home so I don’t have to take them out in the rain. John called and said that they were sending out to the desert so he won’t be coming home tonight so it’s just the kids and myself. After Hunter came home from school I got him a snack and some juice so he amused himself while I made a pot of chili, that way I won’t have to cook whenever John gets home tomorrow. When Ciara came home I put the kids in the car and we went to pick Mason up from school. He has been asking to go bowling for a while now so I called my sister and told her to pick up his friend David and they met us at the bowling alley. While Mason and David bowled a couple of games, Ciara and Hunter ate some fries and played with my sister. When we were done at the bowling alley we went home and didn’t do much for the rest of the evening. At one point during the evening I looked over at the kids and they were sitting next to each other on the couch watching cartoons, holding each others hands, it was so cute. I find them doing that from time to time and it just makes me smile.
SATURDAY’S JOURNAL:
Ciara woke me up around 8:30 this morning when I heard her coughing and coughing. I got up and gave her her meds and she went back to sleep. Mason has a basketball game at 10:00 but I don’t think I will go. It is raining very hard again today so I don’t think I will take the kids out anywhere. Once they both woke up I got them something to eat and they watched some cartoons. John came home around 1:00 or so, so I made him some lunch and he stayed with the kids while I ran out to run a couple errands. When I got back home it was time for him to go back to work but he should be home sometime tonight. Right now it is 5:00 and Ciara is laying on the couch and Hunter is bouncing around the living room. I made the kids some grilled cheese sandwiches for dinner and they each ate one and a half. We spent the rest of the evening watching movies and waiting for John to come home. He came home around 8:00 so he had dinner and then his cousin came over for a while. I changed the kids and they were asleep by midnight but Hunter woke up around 2:00 and was angry about something so he went out to the living room and that is where I found him sleeping in the morning.
SUNDAY’S JOURNAL:
Hunter was sleeping on the couch when I got up this morning so I just left him there while everybody else was sleeping too. I made myself some breakfast, biscuits and gravy, and then I ran to the store to get some bacon and eggs. When I got home I made John breakfast in bed and gave him his newspaper so he stayed in there and watched the football game. I got Hunter a bowl of melons and Ciara was sleeping again so I decided to make dinner, early. I made 3 meatloaves and some baked potatoes. I am going to bring some to my mom and then I won’t have to cook later when I am tired. Around 4:00 we decided to go check out the new grocery store since there was nothing else to do and it is STILL raining. I didn’t need any groceries but we just wanted to see what they had and what their prices were. After we left the store I had to pick up Mason’s backpack from my mom’s and take it to him at his dad’s house, then we went home. The kids both ate very well tonight and then John wanted a cake so I baked a cake, Ciara fell asleep, and Hunter was being silly. It is only 7:30 but I want to get the journal done before I forget again. In a few minutes I have to wake Ciara up so I can give her a bath. She has an appointment tomorrow morning with the surgeon to have an Endoscopy at 11:30. He is going to put a camera down her throat to see what it looks like and then we will discuss the surgery for her feeding tube. Please pray that she does well during the procedure and that she doesn’t have any side effects from the anesthesia. We also lost her once because of the anesthesia so it makes me very nervous to do this.
WATERBUGS AND DRAGONFLIES
(A Parable of Death As A Transition To A Better Afterlife)
by Doris Stickney
Pilgrim Press, 1982 New York (ISBN - 0829806091)
Down below the surface of a quiet pond lived a little colony of water bugs. They were a happy colony, living far away from the sun. For many months they were very busy, scurrying over the soft muck on the bottom of the pond. They did notice that every once in a while one of their colony seemed to lose interest in going about with its friends. Clinging to the stem of a pond lily, it gradually moved out of sight and was seen no more.
"Look!" said one of the water bugs to another. "One of our colony is climbing up the lily stalk. Where do you suppose she is going?" Up, up, up it went slowly. Even as they watched, the water bug disappeared from sight. Its friends waited and waited but it didn't return. "That's funny!" said one water bug to another. "Wasn't she happy here?" asked a second water bug. "Where do you suppose she went?" wondered a third. No one had the answer. They were greatly puzzled.
Finally one of the water bugs, a leader in the colony, gathered its friends together. "I have an idea. The next one of us who climbs up the lily stalk must promise to come back and tell us where he or she went and why." "We promise," they said solemnly.
One spring day, not long after, the very water bug who had suggested the plan found himself climbing up the lily stalk. Up, up, up, he went. Before he knew what was happening, he had broken through the surface of the water, and fallen onto the broad, green pad above.
When he awoke, he looked about with surprise. He couldn't believe what he saw. A startling change had come to his old body. His movement revealed four silver wings and a long tail. Even as he struggled, he felt an impulse to move his wings. The warmth of the sun soon dried the moisture from the new body. He moved his wings again and suddenly found himself up above the water. He had become a dragonfly.
Swooping and dipping in great curves, he flew through the air. He felt exhilarated in the new atmosphere. By and by, the new dragonfly lighted happily on a lily pad to rest. Then it was that he chanced to look below to the bottom of the pond. Why, he was right above his old friends, the water bugs! There they were, scurrying about, just as he had been doing some time before. Then the dragonfly remembered the promise: "The next one of us who climbs up the lily stalk will come back and tell where he or she went and why."
Without thinking, the dragonfly darted down. Suddenly he hit the surface of the water and bounced away. Now that he was a dragonfly, he could no longer go into the water. "I can't return!" he said in dismay. "At least I tried, but I can't keep my promise. Even if I could go back, not one of the water bugs would know me in my new body. I guess I'll just have to wait until they become dragonflies, too. Then they'll understand what happened to me, and where I went."
And the dragonfly winged off happily into its wonderful world of sun and air!
Hugs To All and ^^Angel^^
Wednesday, January 5, 2005 2:13 AM CST
MONDAY’S JOURNAL:
Today is the first day back to school, yeah! I got up and made their school lunches, got them dressed and waited for the bus to come. It was raining so once they were on the bus, I went back inside, usually I wait until they are both strapped into their seats. I had some breakfast and then I ran out to the store and went back home. Hunter came home and was a little grumpy but I think he was tired. He came inside and watched some cartoons until Ciara came home at 2:30. John didn’t work today so we put the kids in the car, picked up Mason from school and dropped him off at my sister’s house. We made a couple more stops and then we were off to Stockton to drop off some paperwork at John’s work, then we went back home. For the rest of the evening we did some laundry and watched TV. I fell asleep in the recliner around 8:00, I am just so exhausted these days.
TUESDAY’S JOURNAL:
When we all got up I had to feed the kids quickly and then dress them and put them in the car. Ciara has an appointment with the surgeon this morning to discuss getting her a feeding tube. John and I have been debating for a year about whether to get Ciara a feeding tube or not. A year ago she weighed 60 lbs but now she only weighs 47 lbs. Lately she has been coughing, gagging, and making gurgling sounds in her chest which makes me nervous. The same thing happened to Hunter when he was only a year old. He was aspirating which caused him to get 10 pneumonias in one year so he had to get a feeding tube. The doctor listened to her lungs and said that they sounded "junky" which he thinks is either aspiration or pneumonia. He said that he wanted to do a PH Probe so I told him to do it while we were there. That is where she has to have a probe put up her nose and it goes into her stomach. She has to wear it for 24 hours to see if she is refluxing which might be the reason she is aspirating. So, he agreed to do it while we were there and we were all surprised at how well Ciara did when they put that tube up her nose. When we were finished, we made a couple more stops and then headed home. When we got home we received some bad news. A friend of the family was in a terrible car accident. Ryan is 18 years old and was flown to Sutter Roseville Medical Center yesterday. He had to have major facial reconstruction, brain swelling, Adult Respiratory Distress Syndrome, and a broken vertebrae in his back, plus other injuries. He is in serious condition but we still don’t know if he has brain damage yet. He has a Care Page set up for friends and family to follow his progress and leave messages and prayers for him. You can visit his Care Page at Ryan's Care Page and the Page Name is ryanweaver. John had to go to his fire department meeting at 6:00 and when it was over he had to go to his brother’s house to pick up some clothes for the family and then he headed off to Sacramento to pick up Ryan’s brother at the airport at 11:30 pm. He dropped Keith off at the hospital and by this time, the kids and I were asleep. Ciara did very well with the tube up her nose, I was terrified that she would pull it out but she did even fuss with it once.
WEDNESDAY’S JOURNAL:
John didn’t get home until 3:30 this morning, so I let him sleep while I started to get the kids up and dressed. I got Hunter dressed but he just wasn’t going to wake up. It was a little harder getting Ciara fed and dressed because she has the PH Probe in so I had to get her dressed without tangling the wire or unplugging it. Around 9:00 we were finally ready to head out so I woke John up so he could go to work and then the kids and I left. We picked up my sister and then headed to Sacramento to the doctor’s office. They took Ciara right in and pulled the probe out of her nose and it didn’t bother her at all, she is such a trooper. While the doctor retrieved the data from the machine, we went downstairs to get Ciara a chest xray. We brought the xrays back up to his office and he said that they didn’t show any pneumonia but it does look like she is aspirating. So, they aren’t going to do anything until Monday when Ciara has to go back for an Endoscopy, that is were the doctor will put a camera down her throat and take a look. Then he will make the arrangements for her feeding tube surgery. When we left the office we got in the car and headed home. I dropped my sister off at her house and then the kids and I ran into the grocery store to pick up some Carnation Instant Breakfast Drink, the doctor wants Ciara to drink that instead of Pediasure. When we got home I gave Ciara some of her new drink and she loved it, she drank 2 cartons of it! It has the same nutrition but costs much less. The kids watched TV and then John called and said that he wouldn’t be home tonight, they are sending him out on an overnight haul. So, I made the kids some dinner, put their jammies on and Ciara was asleep by 10:00.
Michelle has updated Jillian’s journal and she took the password off so stop by and see what they have been up to! Jillian's Journal
Gold Wrapping Paper
The story goes that some time ago a mother punished her 5 year old daughter for wasting a roll of expensive gold wrapping paper.
Money was tight and she became even more upset when the child used the gold paper to decorate a box to put under the Christmas tree.
Nevertheless, the little girl brought the gift box to her mother the
next morning and said, "This is for you, Momma."
The mother was embarrassed by her earlier over-reaction, but her anger flared again when she opened the box and found it was empty.
She spoke to her daughter in a harsh manner. "Don't you know, young lady, when you give someone a present there's supposed to be something inside the package?"
She had tears in her eyes and said, "Oh, Momma, it's not empty! I blew kisses into it until it was full."
The mother was crushed. She fell on her knees and put her arms around her little girl, and she begged her forgiveness for her thoughtless anger.
An accident took the life of the child only a short time later, and it
is told that the mother kept that gold box by her bed for all the years of her life.
Whenever she was discouraged or faced difficult problems she would open the box and take out an imaginary kiss and remember the love of the child who had put it there.
In a very real sense, each of us, as human beings, have been given a Golden box filled with unconditional love and kisses from our children, family, friends and GOD. There is no more precious possession anyone could hold.
Keep close that box of love and kisses.
Hugs To All and ^^Angel^^
Wednesday, January 5, 2005 2:13 AM CST
MONDAY’S JOURNAL:
Today is the first day back to school, yeah! I got up and made their school lunches, got them dressed and waited for the bus to come. It was raining so once they were on the bus, I went back inside, usually I wait until they are both strapped into their seats. I had some breakfast and then I ran out to the store and went back home. Hunter came home and was a little grumpy but I think he was tired. He came inside and watched some cartoons until Ciara came home at 2:30. John didn’t work today so we put the kids in the car, picked up Mason from school and dropped him off at my sister’s house. We made a couple more stops and then we were off to Stockton to drop off some paperwork at John’s work, then we went back home. For the rest of the evening we did some laundry and watched TV. I fell asleep in the recliner around 8:00, I am just so exhausted these days.
TUESDAY’S JOURNAL:
When we all got up I had to feed the kids quickly and then dress them and put them in the car. Ciara has an appointment with the surgeon this morning to discuss getting her a feeding tube. John and I have been debating for a year about whether to get Ciara a feeding tube or not. A year ago she weighed 60 lbs but now she only weighs 47 lbs. Lately she has been coughing, gagging, and making gurgling sounds in her chest which makes me nervous. The same thing happened to Hunter when he was only a year old. He was aspirating which caused him to get 10 pneumonias in one year so he had to get a feeding tube. The doctor listened to her lungs and said that they sounded "junky" which he thinks is either aspiration or pneumonia. He said that he wanted to do a PH Probe so I told him to do it while we were there. That is where she has to have a probe put up her nose and it goes into her stomach. She has to wear it for 24 hours to see if she is refluxing which might be the reason she is aspirating. So, he agreed to do it while we were there and we were all surprised at how well Ciara did when they put that tube up her nose. When we were finished, we made a couple more stops and then headed home. When we got home we received some bad news. A friend of the family was in a terrible car accident. Ryan is 18 years old and was flown to Sutter Roseville Medical Center yesterday. He had to have major facial reconstruction, brain swelling, Adult Respiratory Distress Syndrome, and a broken vertebrae in his back, plus other injuries. He is in serious condition but we still don’t know if he has brain damage yet. He has a Care Page set up for friends and family to follow his progress and leave messages and prayers for him. You can visit his Care Page at Ryan's Care Page and the Page Name is ryanweaver. John had to go to his fire department meeting at 6:00 and when it was over he had to go to his brother’s house to pick up some clothes for the family and then he headed off to Sacramento to pick up Ryan’s brother at the airport at 11:30 pm. He dropped Keith off at the hospital and by this time, the kids and I were asleep. Ciara did very well with the tube up her nose, I was terrified that she would pull it out but she did even fuss with it once.
WEDNESDAY’S JOURNAL:
John didn’t get home until 3:30 this morning, so I let him sleep while I started to get the kids up and dressed. I got Hunter dressed but he just wasn’t going to wake up. It was a little harder getting Ciara fed and dressed because she has the PH Probe in so I had to get her dressed without tangling the wire or unplugging it. Around 9:00 we were finally ready to head out so I woke John up so he could go to work and then the kids and I left. We picked up my sister and then headed to Sacramento to the doctor’s office. They took Ciara right in and pulled the probe out of her nose and it didn’t bother her at all, she is such a trooper. While the doctor retrieved the data from the machine, we went downstairs to get Ciara a chest xray. We brought the xrays back up to his office and he said that they didn’t show any pneumonia but it does look like she is aspirating. So, they aren’t going to do anything until Monday when Ciara has to go back for an Endoscopy, that is were the doctor will put a camera down her throat and take a look. Then he will make the arrangements for her feeding tube surgery. When we left the office we got in the car and headed home. I dropped my sister off at her house and then the kids and I ran into the grocery store to pick up some Carnation Instant Breakfast Drink, the doctor wants Ciara to drink that instead of Pediasure. When we got home I gave Ciara some of her new drink and she loved it, she drank 2 cartons of it! It has the same nutrition but costs much less. The kids watched TV and then John called and said that he wouldn’t be home tonight, they are sending him out on an overnight haul. So, I made the kids some dinner, put their jammies on and Ciara was asleep by 10:00. Michelle has updated Jillian’s journal and she took the password off so stop by and see what they have been up to! Jillian's Journal
Gold Wrapping Paper
The story goes that some time ago a mother punished her 5 year old daughter for wasting a roll of expensive gold wrapping paper.
Money was tight and she became even more upset when the child used the gold paper to decorate a box to put under the Christmas tree.
Nevertheless, the little girl brought the gift box to her mother the
next morning and said, "This is for you, Momma."
The mother was embarrassed by her earlier over-reaction, but her anger flared again when she opened the box and found it was empty.
She spoke to her daughter in a harsh manner. "Don't you know, young lady, when you give someone a present there's supposed to be something inside the package?"
She had tears in her eyes and said, "Oh, Momma, it's not empty! I blew kisses into it until it was full."
The mother was crushed. She fell on her knees and put her arms around her little girl, and she begged her forgiveness for her thoughtless anger.
An accident took the life of the child only a short time later, and it
is told that the mother kept that gold box by her bed for all the years of her life.
Whenever she was discouraged or faced difficult problems she would open the box and take out an imaginary kiss and remember the love of the child who had put it there.
In a very real sense, each of us, as human beings, have been given a Golden box filled with unconditional love and kisses from our children, family, friends and GOD. There is no more precious possession anyone could hold.
Keep close that box of love and kisses.
Hugs To All and ^^Angel^^
Sunday, January 2, 2005 11:04 PM CST
There are a couple friends that need your prayers today. Lindsey has Sanfilippo and isn't doing very well. Please stop her journal and offer your support and prayers, Lindsey's Journal. Also, Kraig is in the hospital for ICP monitoring,
Kraig's Journal.
FRIDAY’S JOURNAL:
John and I got up at 6:00 this morning and he went to work. I had some breakfast and then John came home at 9:00, not much work today. Hunter ate a few bites when he woke up but not much at all, Ciara ate very well. It is pouring rain today and I just don’t want to take the kids out, too much of a hassle so we are staying in today. It’s probably a good thing because Hunter isn’t feeling well and has a slight fever. John came home around 10:00 and we stayed in. In the evening we watched the New Year’s stuff on TV and then we all went to bed. I hope the new year is a much better year and that the kids are healthy all year long!
SATURDAY’S JOURNAL:
HAPPY NEW YEAR!
It is not raining this morning, yippee!! John went to work around 9:00 this morning and he is doing an overnight haul so he won’t be coming home today. When the kids got up I got them dressed and then my mom came over and we went to Sacramento to the mall. I got a gift card for Christmas and the store was having a sale for 80ff and today is the last day of the sale so off we went. After we finished shopping we stopped to get a slice of pizza, Ciara ate hers but Hunter only ate a bite and threw the rest of the floor. When we left the mall I ran into Target to get some wipes, etc and then we went home. I stopped to get Hunter some fries but he couldn’t eat those either so I know he isn’t feeling well. He kept putting them up to his lips and then pulling it away, over and over and then he threw them on the floor too. I dropped my mom of at her house and then I stopped at the cemetery on the way home. I had bought a little stone for Tommy and it says:
“If tears could build a stairway, and memories a lane,
I’d walk right up to Heaven, and bring you home again.”
When we got home Ciara took a nap and Hunter cried and fussed but did watch a little TV. Since Hunter hasn’t really eaten anything for several days, I gave him some Pediasure and he drank about half of it. When I put Ciara to bed for the evening I went to see how Hunter was doing and he was burning up. I gave him some Tylenol and he fell asleep on the couch and stayed there all night long. I thought that he might be getting his molars but now he has a rash on his cheeks so I just don’t know what is wrong with him.
SUNDAY’S JOURNAL:
I didn’t get to bed until 2:00 this morning and at 5:30 I woke up when I heard gagging, choking noises coming from Ciara’s bed. I jumped up, grabbed her and sat her on my lap. This one wasn’t one of the bad ones, I would say it was a medium one. Once it was over and she was OK, I put her back into bed and she went right back to sleep. I didn’t get much sleep after that because she kept kicking her legs and wiggling around in her sleep but I don’t think she had any more seizures. I got up again around 9:00 but I felt like I was hit by a train, I didn’t get any sleep last night, again. Hunter slept until about noon but then he woke up and was happy and bounced around the couch so I think he is feeling better today, finally. I gave him some Tylenol just in case he still wasn’t well, but I think he will be fine today. I had to keep checking on the little princess because she hasn’t woke up yet, it makes me nervous when she sleeps forever. I always have to make sure she is still breathing because it scares me, I just know that one day I will think she is sleeping and she will be gone and I don’t think I am ready for that day to come, not yet, not this soon. We have an appointment on Tuesday with the surgeon to get ready for her surgery. We have been thinking about this for a year but it has finally come time to get Ciara a feeding tube. She is so skinny, she only weighs 47 pounds and a year ago she was 60 pounds and it breaks my heart to watch her walking around on those little stick legs. Around 3:30 I woke her up and brought her out to the living room and put her on the couch. They both watched cartoons and relaxed for a while, Ciara ate and I finally got Hunter to eat some Goldfish crackers, but he wouldn’t eat the chocolate, surprising! I did some laundry and dishes and then around 4:00 John came home. Hunter got a little fussy in the evening and then climbed up into my lap and tried to fall asleep so I put him in bed but he bounced right up and watched TV with John. He ate some more Goldfish crackers and cheese tonight but didn’t want anything else. It is now time to put them in the tub so they are nice and clean for school tomorrow. Michelle called and Jillian came home from the hospital yesterday and is doing very well. They didn’t find anything that caused her fever so she is home and having fun! It is now 9:00 and I am going to put the kids to bed soon, wish me luck!
Mommy and Daddy
Mommy and Daddy I wish I could stay,
Just like I heard you pray one day.
I was a strong boy, I fought a good fight,
Now I have two wings, and on my own flight.
Mommy and Daddy please don't cry or shed a tear,
The Lord took away my pain, suffering and fear.
I didn't want to leave you guys tonight.
God saw I was hurting and took me towards his light.
Mommy and Daddy I am now an angel along for the ride,
I'm watching over you next to your side.
I was given to you with a special journey to be seen,
To show you love and everything in between.
Mommy and Daddy please tell Ciara & Hunter I will always be with them,
To help them fight their battles, I'll make sure they will win.
The streets of gold is where I play,
You will see it when you come here someday.
Mommy and Daddy I'm running, laughing and playing with my
cars,
If you ever want to talk to me, just look up at the stars.
When the wind kisses your face and blows through you hair,
That will be me, I will be there.
Mommy and Daddy I came into your lives, what a precious gift,
I had to go, I know I will be missed.
The four short years you had with me. Cherish the happy times,
what precious memories.
Mommy and Daddy never forget me, for I love you so.
I will be waiting for you at heaven's door.
Hugs To All and ^^Angel^^ 
Thursday, December 30, 2004 10:36 AM CST
SUNDAY 10:30 AM UPDATE: Ciara had a seizure at 5:30 this morning. I was asleep when I heard her making gagging noises so I jumped up and grabbed her and sat her on my lap. It wasn't a bad one but not a little one either. Once it was over and she was OK, I put her bad in bed and she has been sleeping since. Our little friend Jillian is in the hospital. She was running a fever so the admitted her but so far haven't found anything. I will update you when I hear back from Michelle.
WEDNESDAY’S JOURNAL:
It is still raining today and VERY windy. John and I got up around 6:00 and he went to work. Ciara and Hunter slept until about 10:00 or so which was nice. Since it is raining so hard I don’t think I will take them out today. My mom wants me to go to the store with her but I just don’t feel like dealing with the rain and wheelchairs today. We just stayed in and relaxed, cleaned, etc. Ciara has slept a lot today which worries me. John came home in the evening and we had dinner, watched some TV, and then his cousin came over for a little bit. After Don left we went to bed, basically a boring day, which is a good day.
THURSDAY’S JOURNAL:
I woke up at 5:00 this morning and couldn’t get back to sleep so I went out to the living room and watched some TV. John went to work around 6:00 and then I made some breakfast and waited for the kids to wake up. When Hunter got up, he bounced around the bedroom, but Ciara didn’t wake up at all. Around 10:00 I woke her up to give her her meds and she went back to sleep. Around 12:00 I woke her up and made her drink some Pediasure but 5 minutes later she was sleeping again. John came home about 9:30 from work and we played a game and then he worked on the computer. I finally got Ciara to wake up around 3:00 and I made her walk around the living room, it worries me that she is sleeping so much, that usually means a seizure is near. John got a call for the fire department so he was gone for a little bit and when he came home, we put the kids in the car and headed out. We met my mom at the movie theater and the theater was packed. None of us got to sit together. It makes me so mad when people sit in the handicapped row who aren’t handicapped, AAHHH!!! John took Hunter, I took Ciara, and my mom had to sit way up front. About 10 minutes into the movie, we saw “Meet The Fockers,” John brought Hunter over to me because he was crying and making a scene and he took Ciara with him. Hunter wouldn’t stop crying so I walked him around the back of the theater and then after a few minutes, I put him in his stroller with a Kit Kat and he was happy. Now that he wasn’t crying, he was kicking his feet and chattering at the screen, still making noise but as long as I kept giving him candy, he was OK. About half way thru the movie he fell asleep, shew! The movie was very funny, if you haven’t seen it, you should. My mom loved it and she hasn’t even seen the first movie, “Meet The Parents.” After the movie we stopped at the grocery store and went home. Ciara ate very well tonight but Hunter didn’t eat much which was odd. By 11:00 John and Ciara were sleeping but Hunter was so tired he was cranky and just wouldn’t fall asleep, he just kept crying and fussing. Finally I just the bedroom TV on with cartoons and eventually he fell asleep. It rained all day today and I hope it stops soon!
NEW YEAR'S RESOLUTIONS FOR BEREAVED PARENTS
I Resolve:
That I will grieve as much and for as long as I feel like grieving, and that I will not let others put a timetable on my grief.
That I will grieve in whatever way I feel like grieving, and I will ignore those who try to tell me what I should or should not be feeling and how I should or should not be behaving.
That I will cry whenever and wherever I feel like crying, and that I will not hold back my tears just because someone else feels I should be "brave" or "getting better" or "healing by now".
That I will talk about my child as often as I want to, and that I will not let others turn me off just because they can't deal with their own feelings.
That I will not expect family and friends to know how I feel, understanding that one who has not lost a child cannot possibly know how I feel.
That I will not blame myself for my child's death, and I will constantly remind myself that I did the best job of parenting I could possibly have done. But when feelings of guilt are overwhelming, I will remind myself that this is normal part of the grief process and it will pass.
That I will not be afraid or ashamed to seek professional help if I feel it is necessary.
That I will commune with my child at least once a day in whatever way feels comfortable and natural to me, and that I won't feel compelled to explain this communion to others or to justify or even discuss it with them.
That I will try to eat, sleep, and exercise every day in order to give my body strength it will need to help me cope with my grief.
To know that I am not losing my mind and I will remind myself that loss of memory, feelings of disorientation, lack of energy, and a sense of vulnerability are all normal parts of the grief process.
To know that I will heal, even though it will take a long time.
To let myself heal and not feel guilty about feeling better.
To remind myself that the grief process is circuitous–that is, I will not make steady upward progress. And when I find myself slipping back into the old moods of despair and depression, I will tell myself that "slipping backward" is also a normal part of the grief process and these moods, too, will pass.
To try to be happy about something for some part of every day, knowing that at first, I may have to force myself to think cheerful thoughts so eventually they can become a habit.
That I will reach out at times and try to help someone else, knowing that helping others will help me to get over my depression.
That even though my child is dead, I will opt for life, knowing that is what my child would want me to do.
By Nancy A. Mower
Hugs To All and ^^Angel^^ 
Tuesday, December 28, 2004 2:01 AM CST
TUESDAY’S JOURNAL:
I was up around 8:00 this morning so I started cleaning up the hotel room and packing to go home. The kids and John got up and after we packed everything up, we checked out. We had a few hours until our plane takes off so we set out to find a certain Christmas present. So after a couple of stops, I found what I was looking for and I hope Jim likes it. Next, we stopped for some lunch and the kids are a lot. After lunch we went over to Alyssa’s work to give her some things we couldn’t bring home on the plane and then we were off to the airport. We were running on time but we had some trouble returning the rental car. Once we had that straightened out, we had to run up to the 3rd floor to the ticket counter, we had trouble there too. Eventually Ciara and I got our tickets and we ran to the security check with 15 minutes until our flight left. John and Hunter had trouble getting their tickets because they both are “John Bennett”, Hunter is Hunter’s middle name, and that confused the airline. I don’t know why, we have flown a million times and never had a problem. Ciara and I got thru the security check but I refused to go to the gate without John and Hunter. I saw them at the back of the security line and we only had 7 minutes until the plane left but the security people wouldn’t let him get thru any sooner. Thank God Hunter flashed his dimples and smacked some women on the rear end and they let them go up front, hehe. When they finally made it thru, we had to catch a tram to the gate and then run half way across the airport but we made it, only because our flight was delayed 30 minutes or the plane would have left 25 minutes ago. But, because this flight was so late taking off and we only had 20 minutes between our next flight in Los Angeles, we will most likely miss our connection. About 30 minutes into the flight, Ciara had a seizure but it was a small one. The kids did good on the plane and the movie was “Shark Tale” so that was good. They served chicken for dinner so the kids ate pretty good and after dinner, Ciara fell asleep for the rest of the flight while Hunter watched his DVDs. When the plane landed we had to make a mad dash to catch our connection which they were holding for us, there were several people on our flight trying to catch the same connection. By this time Hunter was crying because he was so tired but Ciara went right back to sleep when we got on the plane. The family sitting in the row next to us had 3 adults and 2 kids but they only purchased 3 tickets, thinking the kids could sit on their laps. That didn’t work because there were only 4 oxygen masks for 5 people and John was supposed to be sitting in that row with the 5 of them, which left 3 seats for 6 people, that doesn’t compute well. So, John had to sit somewhere else and I had the kids but it was a good flight. Now, what John didn’t tell me was that on the first flight from Orlando to Los Angeles, our plane had declared a “fuel emergency” meaning our plane was out of gas. Thank God he didn’t tell me because I am terrified of flying anyway and I wouldn’t have gotten on another plane after that. When we landed in Sacramento, John went to get our van while I waited for our luggage. Of course because our flight was late getting in to LA, our luggage didn’t get on the plane so when John pulled up we put the kids in the car and I went back to fill out the paperwork for our luggage and they said it would be delivered in the morning. When we got home we all went right to sleep!
WEDNESDAY’S JOURNAL:
Since we didn’t have any food in the house yet, we went out to get some breakfast and then did some grocery shopping and went home. We spent the rest of the doing laundry and cleaning up. John went to work for a couple of hours but in the evening we just had dinner and relaxed. Since our luggage hadn’t arrived yet I called the airport and they said that it should have been here by 3:00 this afternoon and they couldn’t contact the delivery driver so they would call me back later. Eventually they called back and said that our luggage should be here by 10:00 tonight. Well, we finally went to sleep around midnight, still no luggage, but at 1:30 in the morning there was a knock on the door and our luggage was here.
THURSDAY’S JOURNAL:
I was up at 6:00 this morning, that is when John went to work, and I couldn’t get back to sleep so I watched some TV. When the kids woke up, Hunter bounced around the bed and watched his cartoon while Ciara drank her Pediasure and took it easy. After I took a shower I went to get Ciara out of bed and I noticed that she had thrown up so I cleaned her up and got them both dressed. Around 11:00 we headed out to get some last minute shopping done, my mom went with us. We ran around getting everything done and then the kids and I went home. When John came home we had dinner and watched a little TV and didn’t do much except wrapping presents before we went to bed.
FRIDAY’S JOURNAL:
Today is going to be a busy day, trying to get everything done before Christmas. John doesn’t have to go to work until later so we had breakfast and then we were on our way out the door. We rushed all over town getting last minute presents, groceries, etc. When we got home I finished wrapping the presents and we spent the day just finishing up things. John went to work for about an hour and then he came back home. I was exhausted so after dinner I fell asleep in the recliner so John took care of the kids and put them to bed, thanks John!
SATURDAY’S JOURNAL:
MERRY CHRISTMAS!!! I woke up around 5:00 this morning and realized that I forgot to wrap several presents so I finished that up and then cleaned up before my mom, sister, and Mason came over to open presents. My sister called and asked if I could pick up Mason at his dad’s house so around 10:00 I headed over there to get him. When we got back to my house, my mom and sister pulled up so we went inside and started opening the presents. Hunter wanted to chew on his presents but Ciara was very alert and actually ripped the wrapping paper off a couple presents by herself. After we all finished with the presents, I had to start the turkey. My sister left to take Mason back to his dad’s and John, my mom, the kids, and myself headed up to John’s dad’s house to open presents there too. The kids had fun and got some good toys so that will keep them busy for a while, I hope! We had to leave because I had a turkey in the oven at our house so we left, John stayed there to have dinner with his family. My sister never came back for dinner, Ciara was sleeping and I am a vegetarian so my mom and Hunter had a whole turkey to themselves. When Ciara woke up I fed her and then my mom stayed with the kids while I took some dinner over to my dad’s house for him. I stayed for a little bit and we talked but then I had to get back home. My mom has Parkinson’s and can’t really do much with the kids so I didn’t want to leave her there too long by herself. John had just gotten home when I got there so he took my mom back to her house. When he got back home we put the kids to bed and we watched a little TV before we went to bed.
SUNDAY’S JOURNAL:
I got up around 5:30 this morning and that is about the time that John got up and went to work, he is doing an overnight haul so he won’t be home until tomorrow. The kids slept late so when they woke up I got them some breakfast and then it was bath time. I got them dressed and we headed out to meet my mom at the grocery store so we could complain about the pie and cream puffs that we had picked up for Christmas. The pie dough was still uncooked and the puffs were smashed and squashed and they only gave us 2 when we ordered 10. We got our money back and then we went to the movies to see “Ocean’s Twelve,” at least they never charge me for the kids to see a movie there. I don’t take Hunter to the theater because the last time we did, he freaked out and screamed the whole time because it is too loud and he is scared of the dark. Today he did really well, of course he had doughnuts, potato wedges, and a soda to keep him happy. Ciara got a little fussy so I got her out of her wheelchair and walked her around for about 10 minutes in the back of the theater. I put her back in her chair and gave her her meds and she fell asleep. About 15 minutes later Hunter started fussing so I took him out to the lobby to get him some candy. As soon as he saw the orange Reese’s wrapper slide across the counter, he started dancing and laughing. He laughed thru the rest of the movie as he munched on the candy, it doesn’t take much to make him happy. After the movie we went home and just relaxed for the rest of the evening. Ciara has been VERY alert and “with it” today which makes me very happy. After we had dinner the kids went to sleep around 11:00.
MONDAY’S JOURNAL:
I got up around 6:00 and watched a little TV until Ciara and Hunter woke up a few hours later. It is raining and VERY windy today and since John isn’t home, we didn’t leave the house today. We just stayed in and played games, watched TV, and just vegged out. John came home around 5:00 so I made dinner and we didn’t do anything else for the rest of the evening.
TUESDAY’S JOURNAL:
I woke up a couple times during the night and Hunter was still in the living room watching cartoons. When John and I got up at 6:00 this morning, he was still awake and watching cartoons, he never went to sleep last night, boy is he going to be grumpy today! John went to work and the kids and I had some breakfast and watched TV. It is raining today and I have to return a few things at the store so I am not looking forward to this trip. My mom wanted to go with so I picked her up and we went to Wal-Mart. The kids were actually very good as we waited in a very long line. When we were finished, I grabbed a few things we needed, Pediasure, medicine, etc, and then we were off to the grocery store and then home. When I got home I was surprised to see that John was already done working for the day. We spent the rest of the day doing laundry, cleaning up, and John replaced the light switch that was sparking. Ciara had another good day today, very alert and walking a lot. I am so tired these days, by 6:00 I can’t keep my eyes open. Finally around midnight we went to bed. Today (Tuesday), Olivia (Sanfilippo) had her central lines placed for her transplant and she will receive her transplant on January 6, which is her birthday. You can visit her journal and follow her transplant progress by clicking here Olivia's Journal.
Check out this article about a new way to get stem cells, Stem Cell Article 
There are several friends that are in need of prayers today. First is Brendal, she passed away last night and her journal is Brendal's Journal . Next is Emma, she is 2 years old and was just diagnosed with Sanfilippo but she doesn't have a website. She lives in Canada and was on her way to Duke for transplant when she got very sick on the plane. There was a doctor on board who had the plane land immediately and she was put in the hospital. They found she has Congenital Heart Failure and sadly, she earned her angel wings last night. Finally we have Lindsey, also Sanfilippo. She has had a long tough road and it looks like she is near the end. Please visit her journal with say a prayer for her, Lindsey's Journal . Yesterday I mentioned that Andrew was in the hospital but he is home now and doing better, Andrew's Journal
Hugs To All and ^^Angel^^ 
Friday, December 24, 2004 2:01 AM CST
MONDAY 11:15 PM UPDATE: Emma just earned her angel wings. Please continue to pray for Emma's family to get thru this hard time. Also, Andrew is out of the hospital and doing better.
There are several friends that are in need of prayers today. First is one of our Sanfilippo friends, Andrew. Yesterday they admitted him to the hospital so say a prayer for him, Andrew's Journal. Next is Brendal, she passed away last night and her journal is Brendal's Journal. Emma is 2 years old and was just diagnosed with Sanfilippo but she doesn't have a website. She lives in Canada and was on her way to Duke for transplant when she got very sick on the plane. There was a doctor on board who had the plane land immediately and she was put in the hospital. They found she has Congective Heart Failure and only has a few days, possible a couple of weeks left. Her mother is keeping her at home where she is comfortable and is praying that she makes it to her 3rd birthday next month. Please pray for Emma and that she can pull thru this and that she remains comfortable. Finally we have Lindsey, also Sanfilippo. She has had a long tough road and it looks like she is near the end. Please visit her journal with say a prayer for her, Lindsey's Journal.
MERRY CHRISTMAS FROM HEAVEN
I see the countless Christmas trees around the world below
with tiny lights like heaven's stars reflecting on the snow.
The sight is so spectacular please wipe away that tear
for I am spending Christmas with Jesus Christ this year.
I hear the many Christmas songs that people hold so dear
but the sounds of music can't compare with the Christmas choir up here.
I have no words to tell you of the joy their voices bring
for it is beyond description to hear the angels sing.
I know how much you miss me, I see the pain inside your heart for I am spending Christmas with Jesus Christ this year.
I can't tell you of the splendor or the peace here in this place Can you just imagine Christmas with our Savior face to face?
I'll ask him to lift your spirit as I tell him of your love
so then pray for one another as you lift your eyes above.
Please let your hearts be joyful and let your spirit sing
for I am spending Christmas in heaven and I'm walking with the King.
A MOTHER'S CROWN
Heaven lit up with His mighty presence, As all the Angels looked down, Today the Lord was placing the jewels, In all the mother's crowns.
As He held up a golden crown, As all the mother's looked on, He said in His gentle voice, "I just want to explain each stone".
He held the first gem in His hand But the radiance couldn't match His own. For He was the light of Heaven, Reflecting off each of the stones.
"The first gem," He said, "is an emerald, And it's for endurance alone, For all the nights you waited up. For your children to come home.
For all the nights by their bedside, You stayed till the fever went down, For nursing every little wound, I add this emerald to your crown."
"A ruby, I'll place by the emerald, For leading your child in the right way, For if you hadn't taught them about me, They wouldn't be here with you today.
For always being right there, Thru all life's important events, I give you a sapphire stone, For the time and love you spent."
"For untying the strings that held them, When they grew up and left home, I give you this one for courage." Then the Lord added an amethyst stone.
"I'll place a stone of garnet," He said, "For all the times you spent on your knees, When you asked me to take care of your children, And them for having faith in me."
"I have a pearl for every little sacrifice, That you made without them knowing, For all the times you went without, To keep them happy, healthy, and growing."
"And last of all I have a diamond, The greatest of all gems, For those mother's who lost their children, When they came home to heaven before them."
"This is the most precious sacrifice, So I give the most precious stone, For I know just how you felt, I too lost a child of my own."
After the Lord placed the last jewel in, He said, "Heaven is now complete, For every mother has her crown of jewels, And all her children are at her feet."
FYI: My birthstone is the diamond, isn't that cool!
Hugs To All and ^^Angel^^ 
Monday, December 20, 2004 7:05 PM CST
NEXT YEAR’S MPS CONFERENCE WILL BE IN SCOTTSDALE ARIZONA, NOVEMBER 10-13, 2005!!!!!
THURSDAY’S JOURNAL:
Ciara woke up around 7:00 fussing so I gave her some juice and she was happy, she drank it and went back to sleep. Michelle called around 8:30 so we talked for a little bit, I wish she was here with us. We don’t have anything planned for today so we drove around to see what was around the hotel. We grabbed a bite to eat and then went back to the hotel until it was time for the welcome reception to start. We decided to take the kids to the swimming pool so we put their floaty suits on and walked down to the pool. I had just got in with Ciara when the life guard came over and said that I had to take Ciara out of the water because they don’t allow floaty suits, I guess they would rather have her drown. I must say that I was pissed off so we went back up to the room and changed clothes for the reception. We walked over to the convention area and talked to a bunch of people and then it was time to go in to the reception. I got the kids each a plate and they ate very well while the adults chatted for a while. Ciara was getting fussy so I got her up and we walked all around the room and chatted with people until it was time for the Breakout Sessions to start. At 7:30 we went to the Breakout Session for Sanfilippo, that is where all of the Sanfilippo families get together and talk about whatever they want to. They had talked about feeding tubes so we said that Hunter used to have one and Ciara is getting one when we get back to California so some of the parents asked me a bunch of questions about it and about seizures. When the meeting was over we all went outside to watch the fireworks from Disney and then we went up to the room and went to bed, it was late.
FRIDAY’S JOURNAL:
I didn’t get to bed until 2:00 in the morning and Ciara woke up around 7:30 so I was up with her. I gave her some juice and her meds and she went back to sleep for an hour or so. Today we are going to the Animal Kingdom so we were waiting for Alyssa to come over, but then she called. I had heard on the news that there was an accident and she was stuck in the traffic and wasn’t going to make it in time so she will meet us at the park. We went downstairs and got on the bus and we got there just in time for our 10:30 reservations at the Rainforest Café. They sat us at a table right in front of the elephants and Hunter wasn’t even sacred so that surprised me. Ciara slept until the food came and I woke her up and she ate. When we finished lunch we walked over to the Safari ride but there was a long line so we got a Fast Pass which let us come back in 45 minutes and we wouldn’t have to wait in the line. While we were waiting we ran into Patty and Jesse and the Jump family so we all walked around and looked at the animals. It was now time for us to go back to the safari ride so they continued on and we got on the Jeep and off we went. Ciara really liked and after a few minutes, Hunter calmed down and he enjoyed it too. We got to see all kinds of animals but when we got to the gazelles, there was one baby which they called Tommy, I thought that was perfect, it was a sign that Tommy was with us. Alyssa called and said that she had paid for the parking at Animal Kingdom but then she got sick and had to leave and when she came back, they wouldn’t let her in again unless she gave them another $10 so she had to go back home which stunk because today is her birthday and now she has to stay home. We finished up the park and it was time to head back to the hotel so that we could pick up our box lunches at 5:30. We took them up to the room and everybody ate. Alyssa called and said that nobody sent her a birthday card or anything so we decided to surprise her. We bought her a cake and a few little things that she needed and drove to her apartment to surprise her. We stayed and talked for a while but Ciara was crying again so we went back to the hotel. We didn’t go to the meeting tonight because it was about something that didn’t have anything to do with our situation so we went back to our room and went to bed.
SATURDAY’S JOURNAL:
Hunter and I were up around 7:30 this morning so we had a bite to eat and watched cartoons until John and Ciara woke up. We had a coupon for a free kids meal at Red Lobster so John took Ciara there for lunch while Hunter and I went down to the snack bar. I was surprised when I saw Tracie and Cameron Nicolls, I didn’t even know they were here at the conference so it was a great surprise. We talked for a few minutes and then they left for Epcot. Some other friends, the Bays’ and Avila’s, were there also so we sat with them and Hunter ate his hotdog and fries. When Hunter was finished eating I turned him loose in the arcade and our friend Eric was in there too, he is 13 years old with Sanfilippo. He and Hunter played around on the driving games and then John and Ciara came back so we played some air hockey and skee ball. By now it was time for the MPS Forum party to start so we went back to the snack bar with the Bays’ and Avila’s and we all walked over to the party. The MPS Forum is a website (www.mpsforum.com) where the family and friends of MPS kids can chat, ask questions, etc. In fact that is where I first learned of the stem cell transplant at Duke. This party is for all of the people that I have been talking to for the past 4 years so it was so nice to finally meet them all and the kids. It was a zoo in that room, kids were running everywhere and having a great time, there was a little area with a TV and Barney videos so Hunter spent a lot of time there while Ciara ate and then napped. They had Subway sandwiches, pizza, cookies, salad, chips, etc. They had a raffle so John and I each got a prize and the kids each won a couple so that was fun. John had left to go up to the room for his meds so when it was over, Alyssa and I took the kids up to the room. While I changed Hunter’s diaper, John ran down to pick up our box lunches. John stayed in the room with Ciara so she could lay down and relax while Alyssa and I took Hunter for a ride on the monorail to the other hotels so check them out, then we went back to our room until it was time for the meeting to start. The first one was about managing MPS which we didn’t learn anything new. Dr. Kurtzberg was next, she talked about stem cells transplants but I didn’t really learn anything new there either but it was nice to see her again. She was out of town when Tommy died so we haven’t seen her since he was sick. She did talk about a new type of MRI that they are doing now but I can’t remember what it is called, something about new fibers. The MRI shows the fibers and it can tell you which nerves are damaged and then they can either bypass the affected nerve fiber or attach an electrode so that the patient can walk again, etc so that was exciting to hear. They talked about Enzyme Replacement Therapy (ERT) and they have the formula all ready for Sanfilippo but they won’t even manufacture it until they can figure out a way to get it past the blood/brain barrier and into the brain so that is what they are working on right now. After the meetings had ended Alyssa went home and we went to bed, it was very late.
SUNDAY’S JOURNAL:
Today is going to be a big day so I ran downstairs to get the kids some pancakes before we headed out to Disney’s Magical Kingdom. The kids ate their pancakes and then around 10:00 Alyssa came over and we were off to see Mickey. When we got to the park I went to Guest Relations and they gave us a pass so we wouldn’t have to wait in any lines, yippee! We went to Pirates of the Caribbean which is one of our favorites. They took us around to the cast member entrance and we got right on the ride. Hunter wasn’t happy about it, he hated water and he is scared of the dark so he held onto me and Alyssa pretty tight, but Ciara had a good time. After that we walked around and found a baked potato stand so we each got one and then continued on. Alyssa doesn’t like roller coasters so she stayed with Hunter while John and I took Ciara on the Thunder Mountain Railroad and she loved that too, she is having a good day so far. After we went on the Haunted Mansion ride we headed over to the little kids rides and we rode all of them and even Hunter did pretty good on them. Alyssa was so funny, she was so excited about everything, it was like having a little kid with us. Next we headed over to Toon Town and we took the kids into Mickey’s House to meet Mickey. We left their wheelchairs outside with John but that was a mistake. It was longer then we thought so Ciara was having trouble walking and Hunter was just a maniac, running everywhere. When we finally got up to see Mickey, we took a couple pictures and then put the kids back in their chairs, shew that was tough! John kept Hunter and then went to get some popcorn while Alyssa and I took Ciara to Minney’s House, but Minney wasn’t there. Next we went to the Toon Town Fair and we saw a line of people and got in it, not sure what we were in line for. It turned out that we got to go into a room and see Pooh, Eeyore, and Tigger, yeah! The characters were very nice to Ciara, it was so cute. We went back outside and found Hunter and John and then it was time for Hunter’s favorite ride, the Indy Cars! He and John went on that ride and Hunter was grinning from ear to ear, he would have stayed on that ride all day if the would let him. By this time it was getting late and we were hungry so we decided to leave. We rode the monorail back to the hotel and changed some diapers before we went out to find something to eat. We went to Panera and got some bread and soup and went back to the hotel. By this time the Awards Banquet had already started and there weren’t any empty tables so we had to split up. John and Hunter sat at one table and Ciara, Alyssa, and I sat at the table next to them. John got to sit at the same table as my little buddy Sam, I mentioned him in the last journal entry, Sam has Hurlers and was transplanted 7 years ago, he is cute as a bug! The kids ate a lot at dinner, so much that they didn’t even want their dessert which was worms and dirt, chocolate pudding with crushed oreos as the dirt and gummy worms in it. Sam spent most of the time at our table being a ham, he is so funny. Ciara was getting fussy so just as the banquet was finished, John took her to our room so she would be comfortable. It was now time for the Remembrance Ceremony so we went out to the lobby to get a balloon to release. We wrote a message to Tommy and then everybody went outside, it was so cold. We said a prayer and then they played “I Can Only Imagine” which is the song we played at Tommy’s funeral. When he started singing it, Alyssa and I looked at each other and said a bad word, boy was that hard, we cried and cried. We took that song as a sign from Tommy that he was with us. After the song was over everybody let go of the balloons and they all floated right up to Tommy’s star which we could see very clearly that night, it was perfect! We went back inside and talked to some people for a while and then it was time to go to the arcade to meet Sam, my Skee Ball partner. He must have already left so Alyssa and I played a few games and then went back up to our room, it was very late. We were out of soda’s so Alyssa and I walked downstairs and she went home and I got some drinks and went back to the room and went to sleep.
MONDAY’S JOURNAL:
Hunter and I woke up around 8:00 this morning so I worked on some pictures to put up for everybody to see, that took over an hour to do. By the time I was finished we had to rush around to get everybody dressed and out the door. We are going to Downtown Disney to meet up with the Schwab family from California. Their son Alex was transplanted with Tommy and they just happened to be here in Florida at the same time so we got together and Alex looks wonderful. We only got to chat for a little bit because we were late getting there and they had to leave for the airport to go home but it was nice to see them and we will get together again in California. It is freezing cold today and Ciara isn’t happy about that at all so John put his coat around her and we went into one of the store and I bought the kids some gloves to keep their hands warm. We actually remembered to grab their Disney hats before we left the hotel room so we put those on them so their ears would stay warm. We stopped at the McDonalds because Ciara was crying because she was cold and hungry. After we ate she was happier and took a nap. We walked back over to the bus stop and headed over to Epcot Center for the day. We started in Mexico and I got something to eat. We got Hunter a maraca and he shook that thing from Mexico to Canada, all across the world, he loved it! There wasn’t really anything for us to do there and it was freezing cold and Ciara was crying and crying so we didn’t stay long. We did stop to get a funnel cake and Ciara and Hunter liked that, boy were they sticky! We ran into the Vanderpools, their two teenage boys have Sanfilippo, so we chatted for a little bit and made plans to watch the fireworks together this evening. We had to leave because Ciara was still crying and very cold. On the way out we stopped at the space ride that is in the big “Epcot ball” and we didn’t have to wait in line, they took us around back and let us get right on so that was wonderful. Ciara got to warm up and John held her on his lap while we rode around and she got to look up at the stars and colorful lights, she loved it. When we got off the ride we walked over to the monorail and headed back to the hotel. Ciara stretched out on the bed while Hunter ran and jumped around the room and watched some cartoons, he hasn’t really watched any TV all week and he was very happy when I turned them on for him. Around 6:30 John ran out to get some wipeys and soda, I refuse to pay $2.50 for one soda at the hotel! It is now a little after 8:00 pm and Ciara is doing great tonight, very alert and spry. We are going to find something to eat and just stay in the room tonight.
Hugs To All and ^^Angel^^ 
Since Christmas is coming I have updated our Wish List. You can visit our list by clicking here CHRISTMAS WISH LIST . Ciara is wearing size 7/8, please make sure that pants have elastic waist. Hunter is wearing size 7, also please make sure elastic waists. Also, both kids put everything in their mouths so please, nothing with small parts/pieces. If you would like to buy Ciara some Pediasure, here is the link PEDIASURE and here is the link to the Boost Pudding she needs BOOST PUDDING .
If you would like to send gift cards, here is a list of gift cards that we could use:
WAL-MART GIFT CARD
K-MART GIFT CARD
TARGET GIFT CARD
GROCERY STORES: Raley’s, Albertsons, and Safeway
GIFT CARDS FOR JOHN:
BARNES AND NOBLE
AMAZON.COM GIFT CARD
GIFT CARDS FOR ALICIA:
LANE BRYANT GIFT CARD
AMAZON.COM GIFT CARD
Wednesday, December 15, 2004 9:31 AM CST
TUESDAY’S JOURNAL:
We didn’t get any sleep last night because we were too busy packing and we had to leave at 3:00 this morning so we were afraid that we would fall asleep and not wake up in time, so we just stayed up. When we got everything and everybody packed into the car to go to the airport, the van wouldn’t start. John had to jump start it and then we were off. We were talking about everything that we packed and we had accidentally left my luggage at home so we turned around and went back to get it, then we were off to the airport. Ciara had slept for 3 hours before we left the house and Hunter for only 1 ½ hours so they were tired and fussy on the drive. When we got there John dropped us off at the terminal and then went to park the van, his sister will pick it up and take it to her house so we don’t have to pay an arm and a leg to park it at the airport, thanks Julia! The airport was SO busy and of course we had trouble checking in but it all went fairly smooth. Our first flight was great, both kids were quiet, Ciara slept and Hunter watched his videos. We got into Chicago 15 minutes early so we had over an hour until our next flight took off. We changed some diapers and got the kids something to eat. On both flights we didn’t have any seats together but they moved people around so we could sit somewhat together. John sat with Hunter and I took Ciara. On the second flight they were both fussy because none of us have had any sleep. When we were waiting for our luggage we met Larry & Allison Kirch. Allison was the first Sanfilippo child we ever met and that was at the last conference we went to 4 years ago. Funny she is the first one we saw this time too! We decided to get a rental car so we got a van and drove to the hotel. While I was checking in, Allison’s family arrived so I talked to them and then we went up to our room. I called Alyssa and she drove over to the hotel and then we went out to get something to eat. We had only been in the car for a couple of minutes when I heard a weird “snoring” noise so I turned around and saw Ciara laying flat on the seat. I tried to sit her up but she was stiff as a board and then I saw her legs shaking and I knew she was having a seizure. John pulled over and helped me sit her up but this was a bad seizure and it lasted over 5 minutes. We moved Hunter to the back seat and Alyssa sat up front with John so I could sit next to Ciara and keep and eye on her. Once we came out of it we started driving again but she was still “not right.” By the time we got to where the restaurants were it was 9:30 and they were all closed so we stopped at Denny’s. Ciara was still screaming so the waitress brought her some applesauce and Hunter’s drink right away and that quieted them down. Everybody ate and then the manager came over to talk to us. He said that if we filled out a questionnaire then we would get a free dinner so we did. When we were finished we headed back to the hotel, making a quick stop at the gas station to get snacks and drinks for the hotel. Alyssa came up to the room with us but she didn’t stay long and when she left, everybody went to sleep.
WEDNESDAY’S JOURNAL:
We were so tired and we didn’t get up until 10:30 this morning, well everybody except Hunter who just wouldn’t get up. We watched a little TV, got dressed and then headed out in search of a Panera Bread store, I love their soup and sourdough bread. Alyssa said that there was one right by her work so that is where we went. I got some bread and John and I had some soup and then we went to Pizza Hut to get the kids something to eat. We called Alyssa to get directions to her work and it turned out that we were right across the street so we stopped over there to see her. She works at Petland so we took the kids in to see the puppies and kittens. They had one puppy that I want so bad! We stayed for a little bit but Ciara was getting fussy so we left. We had seen a Super Target off the freeway so we went there to buy some food and things we needed because everything at the hotel is so expensive. We went back to the room and fed the kids and relaxed before we headed out to explore the hotel. We went up to the 4th floor which is where most of the restaurants are and there are some Disney gift shops too. It is freezing cold outside and we didn’t bring any hats for the kids so I was looking for a hat that didn’t cost an arm and a leg. They had ski hats (without any Disney emblems on them) for $20, I almost passed out at the price. I finally found some Christmas Disney hats that were much cheaper so I got those for the kids. Next we headed down to the lobby to see what was down there. They had the snack bar with hot dogs and burgers and a big arcade so we stayed there. We got 4 hotdogs and a couple snacks and I almost passed out again when we got to the register! I am so glad we have a refrigerator and microwave in the room because that is where we will be eating most of our meals from now on. While we were sitting down and eating we saw several MPS families, finally! There is a little guy named Sam and he has Hurlers. He is 8 years old but is very small, smaller then Tommy was, and he was transplants 7 years ago and he is doing very well. He just stole my heart! I was playing Skee Ball because Tommy and I played that all the time when we were at Duke. Sam was also playing and it was so cute but made me sad too, I started to cry. I talked to his mom for a little bit but Sam kept asking for more quarters so I gave him all that I had. When I was leaving Sam said “Thank you very much”, it was cute. John and Hunter were still eating and Ciara was sleeping so I sat down and then several MPS families from the MPS Forum showed up and it was so nice to finally meet everybody that I have been talking to for years. Jessica said that a bunch of the moms were getting together in the lobby at 9:30 so John and I took the kids up to the room and he stayed there with them while I went downstairs to visit. Alyssa just got off work so she is on her way over and will meet us in the lobby too. I took some pictures today with my new camera but I haven’t tried to download them yet so I will try to figure it out and put up new pictures tonight or tomorrow morning. After a couple of hours it was time to go back to the room so Alyssa and I walked up there. Ciara was sleeping and Hunter was watching his videos. John wanted something to drink so Alyssa, Hunter and I walked back down to the lobby and got a couple of drinks. On the way back Hunter stopped by to visit all of the moms, he is such a flirt! We went back up to the room and I gave Alyssa her birthday present and she ate and then we headed home, it was after midnight by this time, and then we all went to bed too.
Tomorrow (Friday) is Alyssa's birthday so sign the guestbook and wish her a great day!
Hugs To All and ^^Angel^^ Since Christmas is coming I have updated our Wish List. You can visit our list by clicking here CHRISTMAS WISH LIST . Ciara is wearing size 7/8, please make sure that pants have elastic waist. Hunter is wearing size 7, also please make sure elastic waists. Also, both kids put everything in their mouths so please, nothing with small parts/pieces. If you would like to buy Ciara some Pediasure, here is the link PEDIASURE and here is the link to the Boost Pudding she needs BOOST PUDDING .
If you would like to send gift cards, here is a list of gift cards that we could use:
WAL-MART GIFT CARD
K-MART GIFT CARD
TARGET GIFT CARD
GROCERY STORES: Raley’s, Albertsons, and Safeway
GIFT CARDS FOR JOHN:
BARNES AND NOBLE
AMAZON.COM GIFT CARD
GIFT CARDS FOR ALICIA:
LANE BRYANT GIFT CARD
AMAZON.COM GIFT CARD
Monday, December 13, 2004 4:19 AM CST
WEDNESDAY UPDATE: We got here to Florida without any big problems. When we got to the hotel we put our luggage away and then Alyssa met up with us and we went out to get something to eat. Just as we were leaving the hotel, I heard a weird "snoring" noise so I turned around and saw that Ciara was having a seizure. It was a strange one that lasted over 5 minutes. A couple of days ago I noticed that her lips looked blue and today her fingertips and lips look blue but she hasn't had anymore seizures. I will keep you all posted on what happens. Say a prayer for Ciara!
SATURDAY’S JOURNAL:
John went to work early again this morning but today will be very busy. I ran out to help my mom and then John came home around 2:00. We had to be at the fire dept at 3:30 to get ready for the Christmas Parade. I got the kids dressed and we headed out. We walked behind the fire engines and handed out candy canes to everybody. After the parade we had their picture taken with Santa. Hunter didn’t like that idea at all, until he saw Mrs. Clause’s basket of candy canes. He grabbed a handful and then dove to the ground, just as they were taking the picture. As he was jumping, he grabbed Santa’s beard and pulled it off but he didn’t care, he had candy canes! When we finished at the fire dept we went home and watched a little TV before we went to bed.
SUNDAY’S JOURNAL:
John had to leave at 4:00 this morning to go to work. The kids and I didn’t do much all morning. In the afternoon we went out to get some groceries and then went back home. John came home and we did a million loads of laundry and started to get a few things together for our trip to Florida. He went on a couple calls for the fire department, Ciara and Hunter had a good day and went to bed fairly early.
MONDAY’S JOURNAL:
I got up around 6:00 this morning and got the kids ready for school. I usually don’t feed Ciara breakfast before school, they feed her when she gets there, but I had time and she was wide awake so I gave her something to eat and sent them off on the bus. I have a very busy day today so I immediately went out to get things started. Around 9:00 the school called and said that Ciara threw up but she was sleeping now. I think she threw up because she always does when I feed her and put her on the bus, that’s why I don’t give her breakfast before I send her off on the bus. They said that they would keep her there unless she got sick again so we will see what happens. I picked up my mom and we picked up our lay-away items and then I ran home to get Hunter off the school bus. My sister came over to help me with things and then Ciara came home. She seemed to be doing OK so I put her in her recliner and she didn’t move for hours. I ran out to get Mason from school and brought him back to my house. I packed and ran a couple more errands. John came home and then left to take our dog to his dad’s house. When he came back home I took Mason to his dad’s and then we continued to pack and get ready to leave at 3:00 in the morning, AAHHH!!! I made dinner and Hunter spent the rest of the evening in the bedroom watching cartoons while Ciara napped. It is now 2:00 am and we have to leave soon and I am still not ready but I an exhausted!
Please stop by and visit Mikey, he is very sick and isn’t going to make it thru the night, Mikey's Journal .
We would like to thank all of you who sent us donations for our trip, you are all wonderful and we love you!
Hugs To All and ^^Angel^^ Since Christmas is coming I have updated our Wish List. You can visit our list by clicking here CHRISTMAS WISH LIST . Ciara is wearing size 7/8, please make sure that pants have elastic waist. Hunter is wearing size 7, also please make sure elastic waists. Also, both kids put everything in their mouths so please, nothing with small parts/pieces. If you would like to buy Ciara some Pediasure, here is the link PEDIASURE and here is the link to the Boost Pudding she needs BOOST PUDDING .
If you would like to send gift cards, here is a list of gift cards that we could use:
WAL-MART GIFT CARD
K-MART GIFT CARD
TARGET GIFT CARD
GROCERY STORES: Raley’s, Albertsons, and Safeway
GIFT CARDS FOR JOHN:
BARNES AND NOBLE
AMAZON.COM GIFT CARD
GIFT CARDS FOR ALICIA:
LANE BRYANT GIFT CARD
AMAZON.COM GIFT CARD
Thursday, December 7, 2004 0:41 AM CST
Hello Everybody,
I am sorry that I haven't updated much lately but we have been so busy this week with Santa Patrol and today the kids were in the parade and then open house at the fire dept. We are all exhausted but I will update tomorrow (Sunday). Thanks for checking in and come back again!
SUNDAY’S JOURNAL:
John had to work today but I actually got to sleep in until 9:00 this morning, I couldn’t believe it! The kids and I didn’t do much this morning. We watched some movies and stayed in. I spent the morning cleaning the house, so much fun. John came home from work around 2:00 so I made him some lunch and we stayed in. Around 4:00 he went to the fire department for a meeting while I ran to the store with the kids. On the way home we stopped at the fire department to see how things were going. They are decorating the fire truck with Christmas lights and garland for Santa Patrol and Candy Cane Lane. Santa Patrol starts tomorrow, that is where one of the firemen dress up as Santa and he sits on top of the fire truck as they drive up and down every street in the city, passing out candy canes to all the kids. When they were finished we went home and not long after, went to sleep.
MONDAY’S JOURNAL:
John did work today so we have a full day of errands planned. While I was getting the kids dressed for school, he had to leave for a fire department call, but he came home not long after the kids had left for school. While he went to pick up his dad’s truck, I took my mom out to get a few of her things taken care of and then I met John at Wal-Mart. I had run over a nail and the front tired kept going flat so we had a couple tires put on the front. They were very busy so after waiting almost 2 hours, they were still fighting with one of the tires and it was time for Hunter to get out of school. I called the teacher and told her not to put him on the school bus and we took the truck and picked him up. There wasn’t room for Ciara in the truck too so I told them that I would pick her up early too, after they were finished with my tires. When we got back to Wal-Mart my van was done and John’s cousin called and needed a ride to Oakdale so John took him while I went to get Ciara. I took the kids home and then around 2:45 I picked up Mason from school. My sister came over to pick him up an hour later, that was about the time that John got home. We put the kids in the car and drove to Sacramento to his sister’s house. She is giving us her mattresses and it is just starting to rain so we are rushing to get home before it really starts to pour. We visited with Kathy for a while but John had to get home to load his truck for work before 6:30 so we were off again. John went right to work and I took the kids home. Tonight the fire department is starting their Santa Patrol and as I was bringing the kids in the house, I could hear the Christmas music and the fire engine’s siren so I knew Santa was close. It was just starting to sprinkle outside so I took Hunter out with me to wait for Santa. We danced in the street to the Christmas songs but after 10 minutes and no Santa, I brought him back inside to wait. After 15 minutes or so, I could hear the music and siren getting louder so I took him outside again, it was too cold and wet for Ciara to be outside. I could see the fire truck, all decked out in Christmas lights and garland over our back fence so I walked Hunter down to the street since we are the last house on the street and it would be rounding our house in a couple of minutes. Hunter was swinging his arms and having a good time, UNTIL the fire truck came around the corner and they hit the siren. It is VERY loud and it scared him, he started screaming and spinning around. Santa was sitting on top of the fire truck and all of the fire fighters and their kids were walking behind the truck handing out candy canes to every body. Once the truck went past us, Hunter was a little better so we went inside. I was going to take him and Ciara tomorrow night on the Santa Patrol to walk behind the fire truck and pass out the candy canes but now I don’t know if I should since it scared him. I guess we will just see what happens. When John came home around 7:30 he had to take the pick up back to his dad’s so he got home late and went right to bed, he has to get up at 3:00 am to go to work tomorrow.
TUESDAY’S JOURNAL:
John had to leave at 3:00 this morning for work, he is doing another overnight haul so it’s just the kids and myself until tomorrow. I got Ciara dressed and ready but Hunter just didn’t want to wake up, not even for Barney. At 7:15 the school bus got here but when I started to bring Ciara out, the bus driver said that I should wait because the mechanics were on their way out to look at the bus, it seems the rear end was going out again. So I brought the kids back inside and Hunter is just not happy at all, he wants to go back to sleep. The mechanic showed up and looked over the bus and said that it was safe enough to continue on, but he was going to follow them all the way to school, just in case. Around 8:15 I headed out so I could get everything done early, before it really started to rain. I got back home around 11:15 so I am going to wrap a few little gifts and get them in the mail. Hunter came home so while he ran around, I baked a ton of cookies to send to school tomorrow. Their school is having Santa Shop, that is where the kids get to buy little presents for their family. When Ciara came home from school I was just starting to make a stew so while she watched cartoons with Hunter, I finished it up. Mason and my sister came over around 3:00 so he played on the computer while we watched the new ‘Blue Collar Comedy Tour Rides Again.” It was funny but I missed a lot of it so I will have to watch it again when John gets home tomorrow. My sister left around 5:00 but Mason wanted to stay here longer. I got him something to eat and then around 6:00 we headed out. I dropped Mason off at his dad’s house and then the kids and I went to the fire department for the Santa Patrol. Since John isn’t here and I can’t push 2 wheelchairs at once, I decided to meet up with the Patrol half way down the route, That way Hunter wouldn’t have to walk too much. We are going down to Mason’s neighborhood tonight so I wanted to take the kids, it will be an adventure that’s for sure. My friend also lives on that street and her daughter is in Ciara and Hunter’s class. Christina is in a wheelchair too so I ran over there and told them that the Santa patrol was coming so they could get Christina up to see the fire truck and Santa. They decided to walk along with us so that was fun. We got the kids bundled up just as the fire truck was coming around the corner. Ciara was a little tired and Hunter was a little scared at first but he calmed down and did a great job. Christina was so excited when she saw the lights and heard the music, it was so cute. Of course this is the time that is started to rain so Christina and Lisa walked back to their house while the rest of us continued on. Lisa, thank you for the coat and blanket!!! We walked all the way to Mason’s house and he was standing outside with his dad, sister, and little brother. Luke is only 1 so he didn’t know what was going on, but Lily is 3 and she was so excited to see Santa ride by on the fire truck. Hunter had already fallen down a couple of times and it was raining harder so while the rest of the group kept on going, the kids and I turned around and walked all the way back to our car. It was so cold and Hunter was crying so we went right home and warmed up. Ciara went right to sleep and Hunter watched the Charlie Brown Christmas. It is now 11:00 and I am going to bed!
We would like to thank all of you for the wonderful guest book entries. Whenever somebody makes a stupid comment like that, I always wonder if there are others that are thinking the same thing. I usually don’t bother with those people, but I thought that I would just say my peace and they could all stick it you-know-where and not bother us anymore. You are all wonderful, special people and even though we haven’t met most of you, we consider you all our friends.
I can’t put up any new pictures because my digital camera is broken. I don’t know what we are going to do on our Florida trip!
Hugs To All and ^^Angel^^ Since Christmas is coming I have updated our Wish List. You can visit our list by clicking here CHRISTMAS WISH LIST . Ciara is wearing size 7/8, please make sure that pants have elastic waist. Hunter is wearing size 7, also please make sure elastic waists. Also, both kids put everything in their mouths so please, nothing with small parts/pieces. If you would like to buy Ciara some Pediasure, here is the link PEDIASURE and here is the link to the Boost Pudding she needs BOOST PUDDING .
If you would like to send gift cards, here is a list of gift cards that we could use:
WAL-MART GIFT CARD
K-MART GIFT CARD
TARGET GIFT CARD
GROCERY STORES: Raley’s, Albertsons, and Safeway
GIFT CARDS FOR JOHN:
BARNES AND NOBLE
AMAZON.COM GIFT CARD
GIFT CARDS FOR ALICIA:
LANE BRYANT GIFT CARD
AMAZON.COM GIFT CARD
Sunday, December 5, 2004 1:13 PM CST
I am considering putting a password on our journal, but I hate to do that because so many wonderful people that read it. I am just tired of idiots who don't know what they are talking about, leaving hateful messages in the guest book. In our journal I have put our Christmas Wish List because some people have asked what the kids would like for Christmas and so that our family can see what the kids would like. I don't expect anybody else to buy things for us, believe me. But the past couple of days we have been told that we are begging way to much for things for our kids and I don't recall ever begging for presents at all. We have asked for donations to go to the Conference, but that is all, and I know other families have done the same thing so I don't see anything wrong with that. I have also been told that we eat out way too much, but I must have slept thru lunch/dinner, because I don't remember eating out all the time. In fact, other then getting something to eat after we left the hospital when Ciara was having her seizures and she hadn't eaten all day and was crying because she was hungry, we haven't gone out to eat for a long time. Yes, I go thru the drive thru and get the kids some fries because they are Hunter's favorite thing in the world besides chocolate. But don't we all do that? I mean come on people! In fact, last Christmas we were given a ton of gift certificates to fast food places and I am just using up the last few ones we have so I haven't even had to pay for the fries so I don't want to hear another word about it TIM. Other then from you, we haven't had more then a couple negative entries in the guestbook in the 3 years that we have been opening our lives to everybody so I think that is pretty darn good. I can't get a job because there are only 3 1/2 hours in the morning that I have free while the kids are in school and who is going to hire me for that small time period? Nobody! In order to get a decent paying job, I would have to hire a nurse to stay with the kids and that would cost more then what I would be bringing home so there is no point to that. Now I know that I don’t write everything that is going on in our lives because it really is none of anybody’s business but not only do I have to care for Ciara and Hunter, I also take care of my mother. She has Parkinson’s and has a couple strokes a month and she can’t do anything for herself anymore. I have to take her daily to the doctor, store, wherever she needs to go. I also care for my nephew so I have my hands full all the time. I leave a lot of things out of our journal so it may sound like I do nothing all day long but after I have spent my 3 ½ hours in the morning taking care of everybody else’s problems, my kids come home from school, Ciara usually crying because she is in so much pain. I only have time to eat a quick bite in the morning and then I don’t get to eat again until the kids go to sleep late at night because I am constantly having to change diapers, feed somebody, hold somebody because they are crying, drive somebody somewhere, etc. So, unless you have walked in my shoes, and I hope you never have to, keep you nasty comments to yourself and if you don’t like our journal, don’t ever come back! For those of you who have been here for us and continue to care about us, I can’t tell you how much we love you and your wonderful guest book entries help us get thru each day and I don’t know how we would have gotten thru everything without you all!
Hey Bennett fans. I have taken off the request that I had before due to a rude response from some people. It was breaking my heart to much to get nasty e-mails and messages in little ^^Tommy's^^ guestbook. (I took them off) If you would like to help just please e-mail me at Sabiemc@aol.com. We have about a week left. Thanks to all of you who are supportive. Please if you have something not nice to say let me know and don't deface an angels guestbook. Thanks and god bless.
Alyssa
Hugs To All and ^^Angel^^ Since Christmas is coming I have updated our Wish List. You can visit our list by clicking here CHRISTMAS WISH LIST . Ciara is wearing size 7/8, please make sure that pants have elastic waist. Hunter is wearing size 7, also please make sure elastic waists. Also, both kids put everything in their mouths so please, nothing with small parts/pieces. If you would like to buy Ciara some Pediasure, here is the link PEDIASURE and here is the link to the Boost Pudding she needs BOOST PUDDING .
If you would like to send gift cards, here is a list of gift cards that we could use:
WAL-MART GIFT CARD
K-MART GIFT CARD
TARGET GIFT CARD
GROCERY STORES: Raley’s, Albertsons, and Safeway
GIFT CARDS FOR JOHN:
BARNES AND NOBLE
AMAZON.COM GIFT CARD
GIFT CARDS FOR ALICIA:
LANE BRYANT GIFT CARD
AMAZON.COM GIFT CARD
Tuesday, November 30, 2004 0:48 AM CST
Hey Bennett fans. I have taken off the request that I had before due to a rude response from some people. It was breaking my heart to much to get nasty e-mails and messages in little ^^Tommy's^^ guestbook. (I took them off) If you would like to help just please e-mail me at Sabiemc@aol.com. We have about a week left. Thanks to all of you who are supportive. Please if you have something not nice to say let me know and don't deface an angels guestbook. Thanks and god bless.
Alyssa
Tuesday, November 30, 2004 10:37 PM CST
Hello Everybody,
I am typing up our journal right now. I am sorry that it has taken me a week to update but things were crazy here for a few days. By the time it calmed down, I couldn't remember what happened all week so I didn't even know where to start. I am sure that I will miss a few things but I am typing up what I can remember and I will post it later this evening. Thank you all for continuing to check in on us!
Hugs To All and ^^Angel^^ 
Since Christmas is coming I have updated our Wish List. You can visit our list by clicking here CHRISTMAS WISH LIST . Ciara is wearing size 7/8, please make sure that pants have elastic waist. Hunter is wearing size 7, also please make sure elastic waists. Also, both kids put everything in their mouths so please, nothing with small parts/pieces. If you would like to buy Ciara some Pediasure, here is the link PEDIASURE and here is the link to the Boost Pudding she needs BOOST PUDDING .
If you would like to send gift cards, here is a list of gift cards that we could use:
WAL-MART GIFT CARD
K-MART GIFT CARD
TARGET GIFT CARD
GROCERY STORES: Raley’s, Albertsons, and Safeway
GIFT CARDS FOR JOHN:
BARNES AND NOBLE
AMAZON.COM GIFT CARD
GIFT CARDS FOR ALICIA:
LANE BRYANT GIFT CARD
AMAZON.COM GIFT CARD
Wednesday, November 24, 2004 11:14 PM CST
SATURDAY UPDATE: Ciara has not had any more seizures! Last night I typed up our journal but accidently deleted it. I am so mad, it took me forever to type it. I will try to type it up again this evening but it may be tomorrow, depending on what type of day we have here. Thank you all for continuing to check in on us!
FRIDAY 6:30 PM UPDATE: We just got back from taking Ciara to Kaiser. Ciara has been off of her seizure meds for over 6 months but it is time to start them up again. We changed her to a new seizure drug which won't have the side effects that the Tegratol had so we are happy about that. Ciara has not had any more seizures and has been more alert. We even stopped for dinner on the way home. We are only feeding her yogurt, applesauce, etc today because she is having a little trouble swallowing and we don't want her to choke but she should be back to normal by tomorrow. Thank you all for worrying about our little princess!
FRIDAY 11:30 AM UPDATE: Ciara just had two more seizures. She had a very mild one and not even a minute later, she had another big one. John will be home in a couple hours so we will take her to Kaiser when he gets home. Stay tuned for an update!
FRIDAY 9:30 AM UPDATE: Ciara just had another seizure. This time it was a pretty big one. She was laying on the couch when I saw her arms fly up over her head so I sat up to see what she was doing. Her legs and arms were jerking and her face was very distorted. I grabbed her and sat her on my lap but the seizure lasted for 2 1/2 minutes. When she had a seizure last week she stopped breathing so as I was rubbing her back and watching her jerk around I kept thinking, should I call 911? What can they do for her? I have no pants on! When she finished seizing I noticed blood down the front of my shirt so she bit her tongue again. Right now she is laying on the couch like a limp noodle but she is awake. I emailed both her doctors so I guess we just wait and see what they say. Please pray that she doesn't have any more today.
FRIDAY 7:45 AM UPDATE: Ciara just had a seizure. It was a pretty mild one but it lasted a long time. I have her in the living room with me and I am keeping an eye on her. I hope and pray she doesn't have any more today!
I PUT THIS POEM ON TOMMY'S HEADSTONE TODAY:
Forget Me Not
The little heart stopped beating,
Big brown eyes were at rest,
Now I don't have to wonder why,
God only takes the very best.
A million words won't bring you back,
I know because I've tried.
A million tears won't either,
I know because I've cried.
I feel I need a place to hide away,
To hide the pain of yesterday.
I have a lot of fears inside,
Since the day our lives had to divide.
I know you won't be coming back,
I just don't want to see,
All that happens is tears start falling.
I hope you'll remember me.
TUESDAY’S JOURNAL:
I am very happy that today is the last day of school, until Monday anyway. After I sent the kids off to school, I got a few things done, went to the grocery store, etc. John came home from work early today so when Hunter’s bus got here, he went out to get him. As usual, Hunter was happy and ran into the bedroom to watch cartoons. Around 2:30 or so my sister stopped by and as she was about to leave, Ciara’s bus pulled up so she got Ciara off the bus for me. Ciara was already crying when the bus pulled up, I don’t know what was bothering her. We put the kids in the car, after Ciara got her pain meds, and went to the park to play some tennis. We were pretty pathetic but at least we tried. When we finished we went back home. John went to load his truck for work and then he went to his fire dept meeting. Ciara took a nap after I fed her but Hunter spent all evening jumping on the bed and laughing. Michelle called so we talked for a while, Jillian is doing very well, we are very proud of her. It is now 11:00 and Ciara is almost asleep, Hunter is still going strong!
WEDNESDAY’S JOURNAL:
The kids don’t have school today so after they had a bite to eat, we headed out to get our errands done. I met my mom at the grocery store and we picked up a few things for tomorrow’s dinner and then we went home. I did some cleaning and I baked an apple pie. When John came home from work we played a game of Mario Kart. I was sitting in the recliner and Hunter came running into the room, jumped up next to me, and started kissing (or sucking and slobbering) all over the whole right side of my face. When he thought that I had enough kisses, he ran back into the bedroom and watched some cartoons. In the evening we had dinner and then John went out on a call for the fire department while Ciara napped and Hunter ran around. It is now 9:20 and I am going to put their jammies on in hopes of them going to sleep soon. Today has been a very hard day. I have cried all day, I can’t believe that Tommy is gone. Sometimes it seems like a bad dream, like the last 2 years never happened. He should be here with us tomorrow. Instead, I will be bringing him flowers at the cemetery. At 3:10 EST, 12:10 am here in California, Tommy took his last breath a year ago. I remember that moment and it is a horrible memory. I chose not to remember that night, instead I remember his silly little grin, they way he would jump up and down with his mouth wide open when he was excited. I remember how independent he was, always wanting to do everything himself. I remember how he took care of his big sister. When Ciara couldn’t feed herself, Tommy fed her and nobody ever told him to, he just did it on his own. He loved life so much and we miss him terribly! Tommy, thank you so much for everything and thank you so much for visiting us tonight. You surprised us and it was wonderful! Hey everyone...I have a request. As most of you know tomorrow will be the one year anniversary of Tommy's passing. He took his last breath at 3:10am est. and I am asking everyone to please light a candle at that time to let him all know that he will never be forgotten and always be loved. Alicia, I and a couple of people are also releasing balloons later in the day. 4 all together, since that was how old he was when he earned his wings. Thank you all so much...I also wanted to share a poem I wrote for my sweet angel.
I Saw an Angel Fly Away
A year ago today you left our arms and flew away
As you went up you grew beautiful white wings
You looked down upon us and saw us crying, but you had fought so hard you knew it was your time to be free
You flew so high among the singing angels through the clouds
Until you reached heavens gates…your new playground
We can see you now…hair so thick, big brown glistening eyes and playing with your bongo’s and drum sticks
We know you are happy…free of tubes, medicine and pain and while that makes us happy our heart ache will never go away
We miss you so much and wish you were here, but we know you are watching, wiping away each and every one of our tears
We miss you Tommy, more then worlds can say
Keep shining down on us baby and we will see you again one day…
I love you…Alyssa
Hugs To All and ^^Angel^^ Since Christmas is coming I have updated our Wish List. You can visit our list by clicking here CHRISTMAS WISH LIST . Ciara is wearing size 7/8, please make sure that pants have elastic waist. Hunter is wearing size 7, also please make sure elastic waists. Also, both kids put everything in their mouths so please, nothing with small parts/pieces. If you would like to buy Ciara some Pediasure, here is the link PEDIASURE and here is the link to the Boost Pudding she needs BOOST PUDDING .
If you would like to send gift cards, here is a list of gift cards that we could use:
WAL-MART GIFT CARD
K-MART GIFT CARD
TARGET GIFT CARD
GROCERY STORES: Raley’s, Albertsons, and Safeway
GIFT CARDS FOR JOHN:
BARNES AND NOBLE
AMAZON.COM GIFT CARD
GIFT CARDS FOR ALICIA:
LANE BRYANT GIFT CARD
AMAZON.COM GIFT CARD
Monday, November 22, 2004 9:31 PM CST
On Thanksgiving day at 3:10 AM it will be one year ago that Tommy earned his Angel wings. It is going to be a very hard day for us but I would like to ask you all to do me a favor. It would really mean a lot to us if you would sign our guestbook and tell us what Tommy meant to you and what you remember most about him. Was it that little frog face he would make right before he did something mischievious? Was it the way he embraced life with everything he had? It would really help us get thru the day. Also, On ABC at 8:00 on Thanksgiving they will be showing "A Charlie Brown Thanksgiving" which is what was playing when he took his last breath. It was actualy during the part when Woodstock was singing his "little Birdy" song. So please watch it and say a prayer for our little Angel!
SUNDAY’S JOURNAL:
I was so happy, I didn’t get up until 8:00 this morning, yeah! After everybody had breakfast we decided to go to Sacramento. We picked up my mom on the way and then went to the mall so she could do some Christmas shopping. My cell phone battery wasn’t charging anymore and I have to have a phone in case something happens to the kids so we drove all over Sacramento and stopped at 7 stores but nobody had a battery because my phone is an old model. Radio Shack had it for $70 but that is ridiculous so I didn’t buy it. Eventually we found one for half that so I was happy. The kids did very well today, nobody cried for fussed, it was nice. When we got home we realized that the store didn’t put a sweater in the bag so we called them and they will have it. We will have to go back in a few days and pick it up, I got it to wear to the conference. All I have are jean and t-shirts so I need something decent to wear. Normally it doesn’t matter, nobody ever sees me anyway and the kids are ALWAYS wiping something gross on me so why ruin nice clothes, that’s my motto. When we got home the kids relaxed, had a bite to eat and Ciara took a little nap. When she woke up we had dinner and then it was time for a bath. Hunter is like a little fish, he never wants to get out of the tub. Ciara is like a dog after a bath, she just runs around jumping and having a good time, it’s so funny. Both kids were asleep by 10:30, yeah!
MONDAY’S JOURNAL:
Ciara slept well all night long and both kids were happy when I put them on the school bus this morning. As soon as then left I had to run to the store to buy Ciara some Pediasure for school. She was just laying down on her comfy bed and Hunter was playing around his little area they have set up for him. There is a big swing thing in the classroom and there is one other little girl who swings all day long and gets a little crazy on it sometimes and knocks the other kids down. So, while she is swinging, they have made a little area for Hunter with his own desk and everything. They have a chart on the wall in front of his desk with the activities that he needs to work on and things that he likes and what makes him happy. It was really cute to see that. I stopped by our house and grabbed my free turkey coupons, I have earned 3 so far, and then went to the grocery store. There were only 4 turkeys left and they weren’t getting anymore so I was lucky, I was planning on waiting until tomorrow to get them but I would have been out of luck. I went home, put the groceries away, did a little cleaning, and waited for Hunter to come home. He was happy and ready to get off the bus when he got here. He grabbed his juice cup when he got inside so I gave him some Gatorade and he went off to watch cartoons. Ciara came home and was happy and very alert. She roamed around the living room for a while and then my sister and Mason stopped by for a few minutes. John called and said that he won’t be home until around 8:00 tonight so I made dinner for the kids and myself, they ate very well. Well, it is almost 8:00 so I better start John’s dinner. I am hoping that the kids go to bed early tonight. After tomorrow, they have the rest of the week off from school, HELP!!!
I would like to thank all of you who have sent donations for our MPS Conference trip. I can’t tell you how much we appreciate it. We are really looking forward to hearing what new treatments are coming for Sanfilippo. Of course we can’t wait to meet all of our MPS friends that we have made on-line over the past 4 years!
An angel's presence in our lives is a little like the Internet: always available, but you have to turn it on and tune in in order to get online!
Tomorrow (Tuesday) is “Eat A Cranberry Day”
Hugs To All and ^^Angel^^ 
Since Christmas is coming I have updated our Wish List. You can visit our list by clicking here CHRISTMAS WISH LIST . Ciara is wearing size 7/8, please make sure that pants have elastic waist. Hunter is wearing size 7, also please make sure elastic waists. Also, both kids put everything in their mouths so please, nothing with small parts/pieces. If you would like to buy Ciara some Pediasure, here is the link PEDIASURE and here is the link to the Boost Pudding she needs BOOST PUDDING .
If you would like to send gift cards, here is a list of gift cards that we could use:
WAL-MART GIFT CARD
K-MART GIFT CARD
TARGET GIFT CARD
GROCERY STORES: Raley’s, Albertsons, and Safeway
GIFT CARDS FOR JOHN:
BARNES AND NOBLE
AMAZON.COM GIFT CARD
GIFT CARDS FOR ALICIA:
LANE BRYANT GIFT CARD
AMAZON.COM GIFT CARD
Saturday, November 20, 2004 9:15 AM CST
WEDNESDAY’S JOURNAL:
Ciara slept pretty well last night, of course Hunter slept like a log. After I sent them off to school, I found Hunter’s pacifier on the floor so I drove to the school so he would have it. He was sitting at the table with the teacher and other kids doing their work, Ciara was napping. When I left the classroom I ran a few errands and then went home to wait for Hunter’s school bus. Hunter was all smiles when he came home and of course, ran right into the bedroom to watch cartoons. When I saw Ciara’s bus pull up, I went outside and I could hear her screaming and crying. The bus driver said that she had been crying the whole ride home. I took her into the house and I noticed that she lost her silver front tooth, finally! There was a note from the teacher that said Ciara cried and cried all day long. So, I have her some pain meds and a dose of poopy medicine but she still cried for several hours, non-stop! I picked up Mason from school and brought him back to my house and my sister picked him up a little while later. Finally, Ciara had a little poop and he calmed down a little and took a nap. She had been asleep for about 20 minutes when John came home and she woke up. She was crying again so I got her something to eat and she was happy. She sat on John’s lap and was comfy and quiet. We had dinner, the kids had a bath and then it was bedtime.
THURSDAY’S JOURNAL:
Ciara had a good night’s sleep, finally. Hunter did not want to get up for school today, until I put Barney on, that woke him up! After I had some breakfast I ran out to the grocery store, stopped by the classroom to drop off something and then headed back home. I did a little cleaning and then Hunter came home. He has been laughing every day when I walk out to the bus to get him. He was thirsty so I gave him some juice and he bounced around the house watching his cartoons. When Ciara came home she was sleeping, but not crying. I brought her inside, gave her her meds and put her in her recliner. Mason, my mom and sister came over for a little bit. After they left we really didn’t do much. John came home late tonight so I got him something to eat, we watched TV and went to bed.
FRIDAY’S JOURNAL:
Ciara slept all night, she is feeling better. After I sent the kids off to school I went out to get my errands done. I got home just in time to get Hunter off the school bus so I put him in the car and we went to the grocery store. Ciara came home at 2:40 and was awake and happy, yeah! My sister and Mason came over for a few minutes but they left. When John came home from work we had dinner, watched some TV and went to bed, I am exhausted!
SATURDAY’S JOURNAL:
I was up at 4:30 this morning and I don’t know why, darn it! John left for work around 6:00 and the kids didn’t wake up until 10:30. I fed them their breakfast and they watched some cartoons. Ciara was sitting in her chair and Hunter was jumping around on the bed, occasionally lapping the living room to make sure I was still there before he went back into the bedroom. John came home around noon and we had a bite to eat. I got the kids dressed and then we went to Wal-Mart, I needed a few thing and John needed to get his tire fixed. We met my mom for dinner and then we went back home. Ciara napped, Hunter ran about the house and things were quiet. We all had dinner and were in bed by 10:30.
URGENT REQUEST…..Hey everyone this is Alyssa. Alicia does not know I am writing this, but I need to because Alicia is exhausted and is tired of asking for donations and hardly any are coming in. As you know the MPS conference is coming up in Orlando at Disney World in December. This conference is so important for many reasons. It is important for John and Alicia because it will teach them of new possible therapies that may help the kids and relief some of their pain, there are groups for parents who have already lost children and it helps them find ways to start to heal and most importantly it will connect them with other MPS families who are watching their beautiful children suffer as well. The Bennett’s have managed to sell enough of their own possessions so that they can at least get to the conference and that is it, but I need you ALL to make this other thing happen…
As many of you have been reading Ciara has been declining. She is losing weight fast, having more seizures and is crying almost all of the time. As much as I hate to say this, it is apparent that she is starting the end stages of her disease and no one knows how much time she has left and Hunter is starting to have problems walking so who know when he will be mostly wheelchair bound. This is another reason why this trip is so important. The kids have never been to Disney World and John and Alicia want to take them on an awesome trip as a family before it is too late. They do not have money to do this. Very few things stimulate Ciara or make her smile anymore, but we have come to find out that loud sounds, bright lights, water and rides, because of there intense movement does something to Ciara…she starts laughing, smiling, kicking her feet and has pure joy on her face which she has not had in a long time. Please help give them the best Christmas present they can ever gives these kids. We don’t know how many more Christmases Ciara has left so this is SO important. I hate to beg…but I feel that this is necessary because the money is just not there and there is nothing else to sell. Alicia is my best friend and Tommy gave me so much…I have to do something to help them make this dream happen and if everyone who reads this can just donate…even if it is just a dollar,,,if everyone who donates at least something it will add up and they can give them this experience that they will never have again.
From talking to Alicia everyday and reading her journal entries I know that she does not pour her true raw emotions into her journal. She misses her baby Tom more then words can say and while she tries to deal with it she is also watching her other two kids slowly decline. She desperately wants to have one last huge blow out trip for her kids. Last year we were talking about us taking all three kids down to Disney…but that can’t happen anymore. Please make this happen for Ciara and Hunter, not only will you be helping the kids have the time of their lives, but you will be giving John and Alicia such joy as they can give their children this wonderful experience. They try to do so much for them and give them all they can and have them experience all they can because time is so precious for this family, it would be a little happiness in their lives which has been so dark since Tom Tom left us. So please donate in the spirit of the holidays…in the spirit of life.
You can donate by clicking the donate button above or please go to this website:
ACTIVE.COM DONATIONS
If you would rather write a check or send cash you can send it to me at the following
Alyssa Boreiko
622 Kenwick Cir, Apt 202
Casselberry, FL 32707
I have access to their donation account and I can deposit it.
If anyone has any questions please feel free to call me at 919-906-5840 or e-mail me at Sabiemc@aol.com
Thank you all so much…I trust that with all of you we can make this happen. God Bless
Love, Alyssa JUST A REMINDER: We have a couple different fund raisers going on right now so that we can get to the MPS Family Conference. First, you can make a donation or help with a fund raiser by visiting our website at ACTIVE.COM . I am selling items on Amazon and you can visit our sale list by clicking here AMAZON SALE LIST, I am selling a new kids sign language book and a new set of sign language flash cards! We also are still selling magazines so please stop by and order a new subscription or renew an old one at MAGAZINE FUNDRAISER . Thank you all for continuing to support us! Please stop by IGIVE.COM and sign up using the Bennett Children’s Fund as your charity and we will receive a percentage of everything you purchase on-line!
Hugs To All and ^^Angel^^ Since Christmas is coming I have updated our Wish List. You can visit our list by clicking here CHRISTMAS WISH LIST . Ciara is wearing size 7/8, please make sure that pants have elastic waist. Hunter is wearing size 7, also please make sure elastic waists. Also, both kids put everything in their mouths so please, nothing with small parts/pieces. If you would like to buy Ciara some Pediasure, here is the link PEDIASURE and here is the link to the Boost Pudding she needs BOOST PUDDING .
If you would like to send gift cards, here is a list of gift cards that we could use:
WAL-MART GIFT CARD
K-MART GIFT CARD
TARGET GIFT CARD
GROCERY STORES: Raley’s, Albertsons, and Safeway
GIFT CARDS FOR JOHN:
BARNES AND NOBLE
AMAZON.COM GIFT CARD
GIFT CARDS FOR ALICIA:
LANE BRYANT GIFT CARD
AMAZON.COM GIFT CARD
Tuesday, November 16, 2004 11:00 PM CST
URGENT REQUEST…..Hey everyone this is Alyssa. Alicia does not know I am writing this, but I need to because Alicia is exhausted and is tired of asking for donations and hardly any are coming in. As you know the MPS conference is coming up in Orlando at Disney World in December. This conference is so important for many reasons. It is important for John and Alicia because it will teach them of new possible therapies that may help the kids and relief some of their pain, there are groups for parents who have already lost children and it helps them find ways to start to heal and most importantly it will connect them with other MPS families who are watching their beautiful children suffer as well. The Bennett’s have managed to sell enough of their own possessions so that they can at least get to the conference and that is it, but I need you ALL to make this other thing happen…
As many of you have been reading Ciara has been declining. She is losing weight fast, having more seizures and is crying almost all of the time. As much as I hate to say this, it is apparent that she is starting the end stages of her disease and no one knows how much time she has left and Hunter is starting to have problems walking so who know when he will be mostly wheelchair bound. This is another reason why this trip is so important. The kids have never been to Disney World and John and Alicia want to take them on an awesome trip as a family before it is too late. They do not have money to do this. Very few things stimulate Ciara or make her smile anymore, but we have come to find out that loud sounds, bright lights, water and rides, because of there intense movement does something to Ciara…she starts laughing, smiling, kicking her feet and has pure joy on her face which she has not had in a long time. Please help give them the best Christmas present they can ever gives these kids. We don’t know how many more Christmases Ciara has left so this is SO important. I hate to beg…but I feel that this is necessary because the money is just not there and there is nothing else to sell. Alicia is my best friend and Tommy gave me so much…I have to do something to help them make this dream happen and if everyone who reads this can just donate…even if it is just a dollar,,,if everyone who donates at least something it will add up and they can give them this experience that they will never have again.
From talking to Alicia everyday and reading her journal entries I know that she does not pour her true raw emotions into her journal. She misses her baby Tom more then words can say and while she tries to deal with it she is also watching her other two kids slowly decline. She desperately wants to have one last huge blow out trip for her kids. Last year we were talking about us taking all three kids down to Disney…but that can’t happen anymore. Please make this happen for Ciara and Hunter, not only will you be helping the kids have the time of their lives, but you will be giving John and Alicia such joy as they can give their children this wonderful experience. They try to do so much for them and give them all they can and have them experience all they can because time is so precious for this family, it would be a little happiness in their lives which has been so dark since Tom Tom left us. So please donate in the spirit of the holidays…in the spirit of life.
You can donate by clicking the donate button above or please go to this website:
ACTIVE.COM DONATIONS
if you would rather write a check or send cash you can send it to me at the following
Alyssa Boreiko
622 Kenwick Cir, Apt 202
Casselberry, FL 32707
I have access to their donation account and I can deposit it.
If anyone has any questions please feel free to call me at 919-906-5840 or e-mail me at Sabiemc@aol.com
Thank you all so much…I trust that with all of you we can make this happen. God Bless
Love, Alyssa
MONDAY’S JOURNAL:
Ciara was up crying and screaming all night long, I think she finally went to sleep around 3:00 this morning. When I got up at 5:45, Hunter was already up and watching TV in the living room so I know that they are both going to be grumpy later today. After I had some breakfast, I made a pot of stew so I won’t have to cook for a couple of days. John came home from work around noon and then Ciara and Hunter came home at 12:30. When I walked outside, I could hear Hunter laughing and having a good time. John got him off of the bus while I waited for Ciara to come off. She was sleeping when I wheeled her into the house but then she woke up and started crying again. She has been crying a lot for the past couple of weeks or so but the last several days have been very bad. I wish I knew what was bothering her. We noticed that she wasn’t acting right when I got her off the bus and she was still acting strange when we got in the house, we think she was having a seizure. Around 2:00 we headed out to Sacramento to see the doctor, we have several things to discuss with him. First is Ciara, we are concerned about her crying all the time and I want them to do an MRI to see if there is something going on and to check the pressure on her brain, maybe she needs a shunt. We are also concerned about her weight loss so we have decided to get her a GI feeding tube, like Hunter used to have. That way we can pump her full of calories, even when she is sleeping. Once she gains some weight, we are hoping that she will have more energy and not sleep all day long. Now for Hunter, we really only have one thing to worry about, he has had a lot of trouble walking lately, especially the past week or so. We discussed Botox injections and casting to stretch his heel cords so he can walk better so we will be seeing the orthopedist about that. When we were finished with the appointment we took the kids downstairs and they got their flu shots and neither one flinched or cried. It was around 5:00 when we got back home and Ciara went to sleep and Hunter went into the bedroom to watch cartoons. A little bit later we all had dinner and Ciara went back to sleep. She woke up around 10:00, crying so I gave her some yogurt and she was happier. It is now 10:30 and I am hoping that she goes back to sleep and doesn’t cry all night again.
TUESDAY’S JOURNAL:
For some reason I woke up at 5:00 this morning when John was leaving for work and I couldn’t get back to sleep so I stayed up and watched the news. Ciara slept all night without crying and was in a good mood when I sent them off to school this morning. As soon as the bus left, I got dressed and went out to the store to get some Pediasure and wipeys for school, they were out. After I dropped that off at school I went to the grocery store and then went back home. Just as I was about to turn onto our street, my mom called and said that her doctor called and had one Flu vaccine left so I had to turn around and drive her up to his office. That was at 11:00 so we had to rush to get home in time to get Hunter off of the school bus at 12:30. The bus driver said that Hunter was happy and clapping on the ride home, he even goosed her, oops! While we waited for Ciara to come home, I put the groceries away and cleaned up a little. When Ciara came home I put the kids in the car and we picked Mason up from school. We stopped to get him a snack and then went back to my house. Mason played around on the computer until my mom and sister came over to pick him up. Mason found my roller blades and they actually fit him, I thought they would be too small, so I let him have them, he was very excited and wore them home. When John came home from work we watched the news, he had dinner, and then went to his fire department meeting. Around 6:30 I fed the kids their dinner and Hunter went back to watching cartoons. Ciara has been a little cranky this evening but better then the past few days so I hope she sleeps well again tonight. I can’t tell you how exhausted I am! Ciara was fussing again so I gave her a couple pudding cups and she relaxed on the couch but it is now 9:15 and she is crying again. I am going to put her jammies on her, give her her meds and pray that she goes to sleep soon.
CHECK OUT THE NEW PICTURES! JUST A REMINDER: We have a couple different fund raisers going on right now so that we can get to the MPS Family Conference. First, you can make a donation or help with a fund raiser by visiting our website at ACTIVE.COM . I am selling items on Amazon and you can visit our sale list by clicking here AMAZON SALE LIST, I am selling a new kids sign language book and a new set of sign language flash cards! We also are still selling magazines so please stop by and order a new subscription or renew an old one at MAGAZINE FUNDRAISER . Thank you all for continuing to support us! Please stop by IGIVE.COM and sign up using the Bennett Children’s Fund as your charity and we will receive a percentage of everything you purchase on-line!
Hugs To All and ^^Angel^^ Since Christmas is coming I have updated our Wish List. You can visit our list by clicking here CHRISTMAS WISH LIST . Ciara is wearing size 7/8, please make sure that pants have elastic waist. Hunter is wearing size 7, also please make sure elastic waists. Also, both kids put everything in their mouths so please, nothing with small parts/pieces. If you would like to buy Ciara some Pediasure, here is the link PEDIASURE and here is the link to the Boost Pudding she needs BOOST PUDDING .
If you would like to send gift cards, here is a list of gift cards that we could use:
WAL-MART GIFT CARD
K-MART GIFT CARD
TARGET GIFT CARD
GROCERY STORES: Raley’s, Albertsons, and Safeway
GIFT CARDS FOR JOHN:
BARNES AND NOBLE
AMAZON.COM GIFT CARD
GIFT CARDS FOR ALICIA:
LANE BRYANT GIFT CARD
AMAZON.COM GIFT CARD
Sunday, November 14, 2004 0:01 AM CST
THURSDAY’S JOURNAL:
Unfortunately I woke up at 5:30 this morning so I made John’s lunch and he left for work. I couldn’t go back to sleep so I watched some TV and had a snack. After the kids woke up I fed them and then baked some sugar cookies, which they loved. John is doing an over night haul so he won’t be coming home tonight. Since today is Veteran’s Day, the kids are out of school for the next couple of days so because of that, I don’t think we will be going out much today, I am too tired and I don’t feel like dragging them from place to place, we will just do it all tomorrow. We just spent the day inside, taking it easy, not much to write about.
FRIDAY’S JOURNAL:
Ciara was fussy all night last night so I was up with her every couple of hours. It has been raining so I think the weather change has been bothering her hips, she just keeps kicking her legs and crying. By 5:45 I couldn’t go back to sleep but Ciara slept until 8:00 and Hunter was up around 9:00. I made them some breakfast and then we headed out to get our errands done for the day. I stopped by the post office and mailed our registration for the MPS Conference. We have raised enough money for the airfare and registrations fees, but we will need money for the hotel, car, food, etc so please help us out if you can, we would really appreciate it. When John came home from work, we had dinner and went to bed early again.
SATURDAY’S JOURNAL:
I have given up on ever sleeping in again. I woke up at 5:30 this morning and couldn’t go back to sleep. After everybody woke up and had breakfast, we decided to take the kids to the 2005 Car Expo in Sacramento, it is cheap and the kids will get out of the house and walk around. Well, by the time we got to Sacramento, we decided not to go to the Expo, Hunter’s wheelchair is still broken and he hasn’t been able to walk very well lately and I just didn’t feel like dragging him across the floor during the whole Expo. Instead, we went to the store so I could pick up some shipping supplies, went thru the drive thru, and went home. John got a call on his fire dept pager so he had to go. After that he had to take the Captain’s test at the fire dept, which he passed so that was good news. I had made a turkey so I brought some dinner over to my mom’s and then went back home. That was pretty much it for the evening, we just stayed in, watched TV, and went to bed early. Boy are we getting old!
SUNDAY’S JOURNAL:
Ciara woke up around 3:00 this morning crying but after a cup of juice, she went back to sleep. We didn’t really do much this morning, just took it easy. I made breakfast for everybody and we watched a little TV and played around with the kids. After lunch, the kids got a bath and John went up to his dad’s to watch the football game while I took the kids grocery shopping with my mom. When we got back home, around 4:00, Ciara took a nap and Hunter jumped around the bedroom for a while. John came home around 5:30 so we had dinner, everybody ate like piggies. Around 9:00, Ciara was sleeping again, Hunter was still jumping around, and John left for work. I put up a few more items for sale so check out our store, the link is down below. It is now 10:00 and I am going to see if I can get Hunter to sleep, he is crying and very tired.
PLEASE take the time to stop by Amanda’s journal by clicking here Amanda's journal. She is 2 years old and only has 2 months to live. Her family desperately wants to take her to Disney World before she passes away. So far they have everything donated but they still need spending money for food, etc. If there is anything that you can do to help them out, please do, every little child should have the dream of doing to Disney! JUST A REMINDER: We have a couple different fund raisers going on right now so that we can get to the MPS Family Conference. First, you can make a donation or help with a fund raiser by visiting our website at ACTIVE.COM . I am selling items on Amazon and you can visit our sale list by clicking here AMAZON SALE LIST, I am selling a new kids sign language book and a new set of sign language flash cards! We also are still selling magazines so please stop by and order a new subscription or renew an old one at MAGAZINE FUNDRAISER . Thank you all for continuing to support us! Please stop by IGIVE.COM and sign up using the Bennett Children’s Fund as your charity and we will receive a percentage of everything you purchase on-line!
Hugs To All and ^^Angel^^ Since Christmas is coming I have updated our Wish List. You can visit our list by clicking here CHRISTMAS WISH LIST . Ciara is wearing size 7/8, please make sure that pants have elastic waist. Hunter is wearing size 7, also please make sure elastic waists. Also, both kids put everything in their mouths so please, nothing with small parts/pieces. If you would like to buy Ciara some Pediasure, here is the link PEDIASURE and here is the link to the Boost Pudding she needs BOOST PUDDING .
If you would like to send gift cards, here is a list of gift cards that we could use:
WAL-MART GIFT CARD
K-MART GIFT CARD
TARGET GIFT CARD
GROCERY STORES: Raley’s, Albertsons, and Safeway
GIFT CARDS FOR JOHN:
BARNES AND NOBLE
AMAZON.COM GIFT CARD
GIFT CARDS FOR ALICIA:
LANE BRYANT GIFT CARD
AMAZON.COM GIFT CARD
Wednesday, November 10, 2004 8:25 AM CST
I am asking you to say a prayer for Andrew Bowman, he is in the hospital and they don't know what is wrong with him. You can visit his journal by clicking here Andrew's Journal. Lindsey is still in the hospital and in need of your prayers also Lindsey's Journal. Don't forget our two Sanfilippo friends who are going thru transplant right now Lauren's Journal and Zulieka's Journal
TUESDAY’S JOURNAL:
I woke up at 6:00 this morning and John was just going to work. As soon as the school bus drove away I had to run to the store and buy some Pediasure for Ciara, they are out at school. When I got to the school, Ciara was having a snack and Hunter was sitting at the table with the teacher. We talked about Ciara’s seizure and how much she is eating and we will all keep a chart to see. I went right home because I was starving so I made something to eat and watched a little TV. Hunter was awake and very happy when her came home from school so I gave him some juice and he was off to his lair. When Ciara came home I put the kids in the car and picked up Mason and took him to his dad’s. We didn’t really do anything when we got home and then at 5:00 I took Mason to his basketball try-outs. Again, when we got home we didn’t do anything. I fed the kids and then John came home from work. He ate really fast and then was off to his fire department meeting. He didn’t get home again until almost 10:00 and then it was bedtime.
WEDNESDAY’S JOURNAL:
Hunter woke up at 6:00 this morning when I got up so he was in a very good mood, bouncing on the bed watching Barney. After I sent them on their way, I was a big slug and didn’t do anything but watch TV. John didn’t work today so when his cousin called to see if John could help him, they left. Around 10:00 I headed out, my mom needed me to do a few things for her, then I went back home. John came home around noon and Hunter’s bus got here a few minutes later. He was sleeping when I went out to get him and wasn’t not happy when he had to get up. Once we got in the house, he perked up and was bouncing around the bed, watching cartoons. When Ciara came home from school the bus driver said that she had a great day at school. She was awake all day and ate like a horse and then played with her toys all the way home. I brought her inside and John stayed with the kids while I picked Mason up and took him to his house. When I got home we put the kids in the car and went to Wal-Mart to pick up a few little things, then went back home. We did some laundry and then it was time to take Mason to basketball try-outs. When I got home we dressed the kids and then headed out to dinner. Today is John’s parent’s anniversary and since his mom passed away a month ago, all the kids are taking his dad out to dinner tonight. Ciara and Hunter both ate like little piggies and they even ate some dessert. As soon as we got in the car, Hunter was asleep but Ciara’s chocolate cake had just kicked in and she was chatting and waving her arms around, nothing like a sugar high! We got home around 8:00 and by 9:00, everybody was asleep. JUST A REMINDER: We have a couple different fund raisers going on right now so that we can get to the MPS Family Conference. First, you can make a donation or help with a fund raiser by visiting our website at ACTIVE.COM . I am selling items on Amazon and you can visit our sale list by clicking here AMAZON SALE LIST, I am selling a new kids sign language book and a new set of sign language flash cards! We also are still selling magazines so please stop by and order a new subscription or renew an old one at MAGAZINE FUNDRAISER . Thank you all for continuing to support us! Please stop by IGIVE.COM and sign up using the Bennett Children’s Fund as your charity and we will receive a percentage of everything you purchase on-line!
Hugs To All and ^^Angel^^ Since Christmas is coming I have updated our Wish List. You can visit our list by clicking here CHRISTMAS WISH LIST . Ciara is wearing size 7/8, please make sure that pants have elastic waist. Hunter is wearing size 7, also please make sure elastic waists. Also, both kids put everything in their mouths so please, nothing with small parts/pieces. If you would like to buy Ciara some Pediasure, here is the link PEDIASURE and here is the link to the Boost Pudding she needs BOOST PUDDING .
If you would like to send gift cards, here is a list of gift cards that we could use:
WAL-MART GIFT CARD
K-MART GIFT CARD
TARGET GIFT CARD
GROCERY STORES: Raley’s, Albertsons, and Safeway
GIFT CARDS FOR JOHN:
BARNES AND NOBLE
AMAZON.COM GIFT CARD
GIFT CARDS FOR ALICIA:
LANE BRYANT GIFT CARD
AMAZON.COM GIFT CARD
Monday, November 8, 2004 11:58 PM CST
SUNDAY’S JOURNAL:
We all got to sleep in this morning and it was so nice! When the kids woke up I got them something to eat and then they watched a little TV. John and I decided that we were going to take the kids to Apple Hill for the day, we haven’t been there for 5 years. Last time we went, Hunter and Ciara ran around and had a great time at all of the stops but this time it wasn’t the same. Apple Hill has changed since we were there last and there wasn’t anything for the kids to do. We took them out of the car at the first stop and we looked around, I bought an apple pie to bake for Thanksgiving but that was it. We got back in the car and drove all over Apple Hill. There were a couple of stops that said they were for kids but there was nothing there except a place to buy pies and drinks. When we got back to where we started, we stopped at the fudge factory and John stayed in the car with the kids, they were sleeping, while I got out to see what was there. The whole place has turned into a giant flea market, not what we were looking for, but I did get some fudge for my mom and then we went back home. We really didn’t do much for the rest of the evening. Ciara slept most of the day today which makes me nervous, that usually means that she is going to have a seizure or something. John went to the fire department for a while and when he came home we had dinner and we all went to bed early.
MONDAY’S JOURNAL:
I got up early this morning, I heard John leave for work and I couldn’t get back to sleep. I was checking my email a little after 6:00 when I heard a weird noise. I looked over towards Ciara and I saw her arms above her head and they were jerking around and so was her head and she was making a strange noise. I ran over to her and grabbed her, sat her on my lap and made sure she wasn’t choking while she was having the seizure. I held her close and slowly, she stopped seizing, that is when I saw the blood on her chin and shirt. Apparently she bit her tongue, poor little thing. She stopped breathing, which she did once last year at school, but not when I have had her so it kind of freaked me out. It was for less then a minute but it seemed much longer. I was shaking her and then she started breathing again but she was breathing a little funny. Once I knew she was OK, I got Hunter up and dressed and sent him off on the school bus. Ciara went right back to sleep and slept for a few hours. Patty called so we talked for a little while, her son Jesse also has Sanfilippo. Ciara woke up around 10:00 so I put her on the couch and she drank a cup of juice and then went back to sleep. While she was sleeping I made 3 meatloafs and cleaned up a little. Hunter came home in a good mood and he went right into the bedroom and watched his cartoons. Ciara woke up so I fed her, which perked her up so she roamed around the living room and watched some TV for about an hour and then went back to sleep. Around 3:00 I picked Mason up from school and he came over for a little bit but then I took him to his dad’s house. He has basketball try-outs today and he wanted to practice before he had to go. I gave one of the meatloaves to my mom and then went home. I picked him up again at 5:00 and took him to the try-outs and then went home, his dad will pick him up later. My dad stopped by so I gave him a meatloaf to take home. Hunter has spent most of the day in the bedroom which is nice, I was able to focus on Ciara. Around 6:00 she had a little something to eat and watched TV for a while but then went back to sleep for an hour or so. John finally got home a little after 8:00 tonight and by 10:00, we were all in bed. CHECK OUT THE NEW PICTURES! We would like to thank all of you who have graciously donated thru active.com so that we can go to the MPS Conference. I can’t tell you how excited we are that now we can go. You are all wonderful! Thanks Julia! JUST A REMINDER: We have a couple different fund raisers going on right now so that we can get to the MPS Family Conference. First, you can make a donation or help with a fund raiser by visiting our website at ACTIVE.COM . I am selling items on Amazon and you can visit our sale list by clicking here AMAZON SALE LIST , I am selling a new kids sign language book and a new set of sign language flash cards! We also are still selling magazines so please stop by and order a new subscription or renew an old one at MAGAZINE FUNDRAISER . Thank you all for continuing to support us! Please stop by IGIVE.COM and sign up using the Bennett Children’s Fund as your charity and we will receive a percentage of everything you purchase on-line!
Hugs To All and ^^Angel^^ Since Christmas is coming I have updated our Wish List. You can visit our list by clicking here CHRISTMAS WISH LIST . Ciara is wearing size 7/8, please make sure that pants have elastic waist. Hunter is wearing size 7, also please make sure elastic waists. Also, both kids put everything in their mouths so please, nothing with small parts/pieces. If you would like to buy Ciara some Pediasure, here is the link PEDIASURE and here is the link to the Boost Pudding she needs BOOST PUDDING .
If you would like to send gift cards, here is a list of gift cards that we could use:
WAL-MART GIFT CARD
K-MART GIFT CARD
TARGET GIFT CARD
GROCERY STORES: Raley’s, Albertsons, and Safeway
GIFT CARDS FOR JOHN:
BARNES AND NOBLE
AMAZON.COM GIFT CARD
GIFT CARDS FOR ALICIA:
LANE BRYANT GIFT CARD
AMAZON.COM GIFT CARD
Saturday, November 6, 2004 1:37 AM CST
MONDAY 2:00 PM UPDATE: Ciara hasn't had anymore seizures today but she has been really out of it. She woke up for about 10 minutes this morning and drank a cup of juice but then went right back to sleep. She just woke up now so I am going to see if I can get her to eat something.
MONDAY 6:15 AM UPDATE: Ciara just had a moderate seizure but she is doing alright. I am keeping her home from school today so I can keep an eye on her. I will update if something else happens.
FRIDAY’S JOURNAL:
After I sent the kids off to school I grabbed a quick bite to eat and then headed out to get some errands done. When I got home, John was already home from work so he ate and then we got a few things done before the kids got home from school. Hunter was very happy when he came home, but Ciara had just started crying when the bus pulled up. Once we got inside, she was happy with her juice cup. We did a little cleaning around the house and then played around for a while. Today is John’s dad’s birthday so I wrapped his present and then we went over to his house. John’s brother was already there and his sister’s came about an hour later. We all ate dinner, opened presents, and then had some cake. Hunter and Ciara both ate very well and had a great time. Hunter was playing with his cousin Russell who is 4 years old. He was chasing him around, just like he and Tommy used to do. It was the first time I have seen Hunter play like that since Tommy passed away. It was good to see him having fun, but it was really sad too, he should be playing with his little brother still! We left the part around 8:00 and headed home. We stopped at the store on the way and I ran into John’s cousin Tracy. We talked for a couple minutes and then we went home and the kids were asleep in 20 minutes!
SATURDAY’S JOURNAL:
The kids and I got up around 8:30 this morning, John has already left for work at 4:30. We had breakfast and watched TV for a while. The brakes on my car are completely gone so I am afraid to drive it so we didn’t leave the house today. We just watched TV and took it easy. Ciara napped on and off and Hunter ran around being goofy. I had just cleaned them up and got them dressed when John came home from work. He wasn’t home long, he went out to get the new brakes for my car and then he put them on, yeah! When he finished I made dinner and then we did some laundry. The kids got a bath and then Hunter spent the rest of the evening in the bedroom watching cartoons while Ciara roamed around the living room until 11:30 when they went to sleep. JUST A REMINDER: We have a couple different fund raisers going on right now so that we can get to the MPS Family Conference. First, you can make a donation or help with a fund raiser by visiting our website at ACTIVE.COM . I am selling items on Amazon and you can visit our sale list by clicking here AMAZON SALE LIST . We also are still selling magazines so please stop by and order a new subscription or renew an old one at MAGAZINE FUNDRAISER . Thank you all for continuing to support us! Please stop by IGIVE.COM and sign up using the Bennett Children’s Fund as your charity and we will receive a percentage of everything you purchase on-line!
Hugs To All and ^^Angel^^ Since Christmas is coming I have updated our Wish List. You can visit our list by clicking here CHRISTMAS WISH LIST . Ciara is wearing size 7/8, please make sure that pants have elastic waist. Hunter is wearing size 7, also please make sure elastic waists. Also, both kids put everything in their mouths so please, nothing with small parts/pieces. If you would like to buy Ciara some Pediasure, here is the link PEDIASURE and here is the link to the Boost Pudding she needs BOOST PUDDING .
If you would like to send gift cards, here is a list of gift cards that we could use:
WAL-MART GIFT CARD
K-MART GIFT CARD
TARGET GIFT CARD
GROCERY STORES: Raley’s, Albertsons, and Safeway
GIFT CARDS FOR JOHN:
BARNES AND NOBLE
AMAZON.COM GIFT CARD
GIFT CARDS FOR ALICIA:
LANE BRYANT GIFT CARD
AMAZON.COM GIFT CARD
Wednesday, November 3, 2004 10:53 PM CST
MONDAY’S JOURNAL:
Ciara woke up at 5:00 this morning so I gave her some Pediasure and she watched the news with me. I made their lunches for school, got them dressed and off they went. John went to work not long after they left and I made myself something to eat. I had left my purse in the car last night so I went out to get it and the car was locked and John was already on his way to Fresno so I was stuck. I called AAA and now I am waiting for them to come. It only took them a couple minutes to open the car and then I was off to do some errands. I had to rush to get everything done because it took AAA forever to get to our house and I had to get home in time to get Hunter off of the school bus at 12:30. After he came home and I got him settled in with a snack and some juice, I put up some DVDs, videos, and computer games for sale on Amazon.com. I am trying to get some money so that we can go to the MPS Conference but it isn’t looking very promising right now. I have 2 weeks left to raise the money so we are trying everything we can think of. If you can help, please visit our website at ACTIVE.COM . To see what I have up for sale, click here AMAZON SALE LIST . I am putting up new things for sale every day so keep checking back to see what we have! When Ciara came home I put her and Hunter in the car and then picked Mason up at school. I took him to get something to eat and then we stopped by my house. Last night I sorted out all of the Halloween candy the kids got, one bucket with candy that they can eat and another bucket filled to the top with candy that they can’t eat because they would choke. I gave Mason that bucket of candy and I thought he was going to pass out because there was so much of it, it was funny. I dropped him off at his dad’s house and then went back home. Ciara had a great day today, she hasn’t napped at all and has been happy and just too cute. Hunter took a nap at school for 2 hours, that never happens, but since he has been home, he has been bouncing and running all over the place. John didn’t get home from work until 6:45 and had to leave right away for the fire department meeting but he was back 30 minutes later because nobody else showed up. After I fed everybody, John and Hunter watched football together. Hunter stood right in front of the TV, dancing and clapping and yelling every time the players crashed into each other. Ciara walked a lot tonight, all over the house and never fussed once. When I made my dinner, John went into the bedroom to watch the game and he took Ciara with him and snuggled her up in the comforter and she stayed there for over an hour, just toasty warm and happy. Hunter sat next to me in the living room and ate a taco with me while we watched TV. By 10:30 he was sleeping in the recliner so I covered him with a blanket and left him there while the rest of us went to bed early also.
TUESDAY’S JOURNAL:
Ciara woke up at 5:00 this morning but she was happy, Hunter woke up about 6:00 and was bouncing around the bed watching cartoons. Both kids were happy when they went off to school. After I had some breakfast I did a little cleaning and then made a huge pot of chili so I won’t have to cook for a couple days. When the bus brought Hunter home, the driver said that he was laughing and clapping the whole ride home. When Ciara came home Iput the kids in the car and we picked up Mason and took him to his dad’s house. I had to watch him goof around with his basketball and then we went back home. Ciara took a nap and then John came home. He was hungry so I got him some chili and then he went to vote. We played a little Nintendo and then it was time to go to the fire department for dinner. They were having ham so I made au gratin potatoes and the kids ate a lot, I was surprised. One of the guy’s mother works at Sheri’s Berries so he brought a huge platter of chocolate dipped strawberries and cookies, yummy! After dinner the guys all had their meeting so the kids and I went back home. I watched the election coverage until John came home and then we watched together. I made myself some dinner, John held Ciara on his lap for a while, and Hunter ran around the house until it was time for bed.
WEDNESDAY’S JOURNAL:
It got up when I heard John leaving for work so I finished putting some things up for sale on the internet and then started getting the kids ready for school. It is raining today so I bundled the kids up and they were off to school. I ran out to the grocery store but that was it, it’s too wet outside. Hunter came home from school at 12:30, had some juice and watched some cartoons in the living room. John came home at 2:30 and Ciara arrived a few minutes later. I put Ciara in her recliner with some John, Hunter took his juice into the bedroom and they both watched TV. John stayed home with the kids while I picked up Mason and took him to my sister’s house. When I got back home we watched the news and then a little later John’s friend Kevin came over. They are making a new patch for the fire department so that kept them busy for a while. Around 6:00 I made dinner and Ciara was very hungry and ate a lot and by 6:30, she was asleep. It is now 9:00 and Ciara is still sleeping, Hunter is trying to sleep but is fussy, and I am making my dinner and then going to bed. FRIENDS IN NEED OF PRAYERS: Our little friend Lindsey is in the hospital and needs your prayers, she has Sanfilippo. Please visit her website and let them know you are praying for her Lindsey's journal. Zulieka and Lauren also have Sanfilippo and are in the hospital for transplants. You can visit their websites by clicking here Zulieka's Journal and Lauren's Journal . I can't forget our little buddy Andrew, he just had surgery to take the plates and screws out of his skull and he is doing well, his journal is Andrew's Journal. JUST A REMINDER: We have a couple different fund raisers going on right now so that we can get to the MPS Family Conference. First, you can make a donation or help with a fund raiser by visiting our website at ACTIVE.COM . We also are still selling magazines so please stop by and order a new subscription or renew an old one at MAGAZINE FUNDRAISER . Thank you all for continuing to support us!
Hugs To All, and ^^Angel^^ Since Christmas is coming I have updated our Wish List. You can visit our list by clicking here CHRISTMAS WISH LIST . Ciara is wearing size 7/8, please make sure that pants have elastic waist. Hunter is wearing size 7, also please make sure elastic waists. Also, both kids put everything in their mouths so please, nothing with small parts/pieces. If you would like to buy Ciara some Pediasure, here is the link PEDIASURE and here is the link to the Boost Pudding she needs BOOST PUDDING .
If you would like to send gift cards, here is a list of gift cards that we could use:
WAL-MART GIFT CARD
K-MART GIFT CARD
TARGET GIFT CARD
GROCERY STORES: Raley’s, Albertsons, and Safeway
GIFT CARDS FOR JOHN:
BARNES AND NOBLE
AMAZON.COM GIFT CARD
GIFT CARDS FOR ALICIA:
LANE BRYANT GIFT CARD
AMAZON.COM GIFT CARD
Sunday, October 31, 2004 9:38 PM CST
SATURDAY’S JOURNAL:
John did an overnight haul so he will be home this afternoon. I was hoping to sleep in but Ciara woke up at 6:00 which meant that I was up at 6:00. She was awake for a while but then went back to sleep. Hunter was still sleeping so I decided to get our Christmas Wish List together, I can’t believe it is that time of year again. This time last year Tommy was getting better from his first breathing trauma and was able to go without any oxygen and we were looking forward to going home. Anyway, the kids and I didn’t go out, they watched TV and roamed around while I did some house cleaning. Alyssa called a couple times so we chatted. She is moving to Florida today so she was driving while we talked. My mom called and asked if she could come over so I picked her up and brought her to our house. John came home from work and we had dinner and watched TV. Around 7:30 I took my mom home and then we didn’t do much for the rest of the evening and the kids went to bed early, yeah!
SUNDAY’S JOURNAL:
We got to sleep in until 8:30 this morning so, yeah! John spent the morning mowing the lawn and I did some cleaning up inside. Hunter and Ciara bounced around the house watching TV and ate their breakfast and lunch. I got the kids dressed and then we went out. We stopped to pick up Mason and then went to Wal-Mart to get him a shirt and tie to wear with his costume, he is going as Arnold Schwarzenegger! At the store we ran into Hunter and Ciara’s teacher from the past few years and it was nice to see her again. We miss you Lisa! We also saw Christina and her mom, Christina is in their class at school. When we were finished shopping we dropped Mason off and then went back home. We stopped at the cemetery on the way and brought Tommy some flowers. When we got back home I carved the pumpkins and then cleaned the seeds so I can roast them later tonight. By this time is was 5:30 so we got the kids dressed up in their costumes and headed out. We went to a couple houses on our street and then got in the car and drove to where we usually go. We only did have the street because Hunter’s wheelchair is broken so we didn’t bring it. Ciara was crying because she was cold and Hunter is afraid of the dark so he wasn’t happy either. On the way home we stopped at Mason’s house and I took a picture of him, he looked so funny! After that we stopped at Christina’s house and then went home. John put on the football game and Hunter went nuts, he just loves football, everybody slams into each other and he thinks it is funny. Ciara immediately fell asleep in the recliner, she was pooped! It is now 7:45 and I am hoping that they will go to bed early again tonight, after I give them a bath. CHECK OUT THE NEW PICTURES! Since Christmas is coming I have updated our Wish List. You can visit our list by clicking here CHRISTMAS WISH LIST . Ciara is wearing size 7/8, please make sure that pants have elastic waist. Hunter is wearing size 7, also please make sure elastic waists. Also, both kids put everything in their mouths so please, nothing with small parts/pieces. If you would like to buy Ciara some Pediasure, here is the link PEDIASURE and here is the link to the Boost Pudding she needs BOOST PUDDING .
If you would like to send gift cards, here is a list of gift cards that we could use:
WAL-MART GIFT CARD
K-MART GIFT CARD
TARGET GIFT CARD
GROCERY STORES: Raley’s, Albertsons, and Safeway
GIFT CARDS FOR JOHN:
BARNES AND NOBLE
AMAZON.COM GIFT CARD
GIFT CARDS FOR ALICIA:
LANE BRYANT GIFT CARD
AMAZON.COM GIFT CARD
Hugs To All, and ^^Angel^^ 
Friday, October 29, 2004 10:39 AM CDT
THURSDAY’S JOURNAL:
Hunter just wasn’t happy at all this morning, he was crying and fussy. I got the kids dressed and sent them off to school on the bus. After I had a quick bite to eat I went out to get some things done for my mom. When I got home, John was already home from work which was nice, today is our anniversary. Hunter came home from school and was crying, I think he is getting a cold. We didn’t really do much of anything to speak of today. When Ciara came home I brought her inside and she took a nap. I picked Mason up from school and took him over to my sister’s house. Of course as soon as I left, John got a call for the fire department so I rushed back so he could go on the call. After the call he went to work for a little bit and then we went out to dinner. My mom bought us dinner for our anniversary, it was nice to go out, it has been a while. After dinner we went home, the kids goofed around and I watched some TV. John was in his office when his fire pager went off again. He came running out of the office and fell, flat on his face. When I say flat, I mean flat! He never even bent, just “splat”! He looks up at me and said “Just like a Douglas Fir” meaning, he fell just like a tree. Of course I couldn’t stop laughing as he ran out the door to the fire department. After the call he came home and said that the guys were very impressed with the rug burns on his elbows. When he got to the fire department apparently he had a big red mark on his forehead from where he bounced off of the rug. OK, I can’t type anymore because I am still laughing so hard! That was pretty much it for the night, we all went to bed early.
FRIDAY’S JOURNAL:
After I sent the kids to school this morning I baked some cookies for their Halloween party at school. I had a ton of things to do before the party so I was pretty busy all morning. I put everything in the car and then stopped by my mom’s to drop something off and then went to the school. Hunter was very tired and for the first time ever, took a nap at school. While he was resting I put Ciara’s costume on her and she was so cute. She really liked it too which surprised me. Her costume is a unicorn and then she is the princess riding it. She liked it because she could hold onto the head and chew on the horn. She pranced all over the classroom! I dressed Hunter, which wasn’t very easy because he was trying to sleep and VERY grumpy. Once I got him dressed, the party was starting. I sat Hunter in a chair until he was calmed down and awake, but he looked so cute! His costume is a horse and he is the cowboy riding it. After pictures I took their costumes off so they could eat with the other kids. Ciara’s white unicorn wouldn’t have stayed while for long! They both ate and had a great time! After the party it was time to go. I called my sister and she needed some nylons for her costume so I took her to the store and then had to hurry back to Ione to pick up Mason from school. They were repaving the road and when I got to where the traffic was stopped, it would take 45 minutes to get thru to the school. I turned the car around and went back to the cut thru and made it there in 15 minutes. I was a few minutes late but Mason was chatting with his friends so it was alright. I took him to get a snack and then dropped him off at his dad’s house. When I got home I gave Ciara her meds and we relaxed for a little while. Around 5:00 I got a call from Kaiser and Ciara’s prescriptions were ready so I put the kids in the car and headed out. Now, I was supposed to be going to Sacramento but for some reason I drove half way to Stockton before I realized I was headed in the wrong direction. I turned around and went back, so that whole thing added 45 minutes to our trip. Their pediatrician had been off for 3 months on maternity leave and while she was gone we had a lot of trouble getting Ciara’s meds. The doctor is back now and I told her what happened so this time she called in a prescription for 3 months worth so I am very happy that I don’t have to go back again for a while. Ciara was crying so I stopped at KFC and got them some potato wedges to munch on while we drove home. We got home around 7:00 and we didn’t do anything for the rest of the evening. Ciara napped, Hunter watched TV in the bedroom and I fell asleep in the living room, that is why I didn’t do the journal last night.
Hugs To All, and ^^Angel^^ 
Tuesday, October 26, 2004 0:37 AM CDT
MONDAY’S JOURNAL:
The kids got up early this morning so they were happy and giggling while they watched Barney. After I put them on the school bus it was time to start getting ready for the day. John didn’t go to work today so we had a quick breakfast and then we had to pick up my mom and sister and take them to their appointment. After that, John went home and I picked Hunter up from school, dropped my mom and sister off at their house, and then went back home. We waited for Ciara to get home and then picked up Mason from school and went out to the pumpkin patch since today is the only sunny day without rain for the last week and all this week. Hunter didn’t want to stand up for any pictures and Ciara was sleeping and wouldn’t look up so I will post the pictures that we have. When we left the pumpkin patch, we dropped Mason off at his dad’s house and then went home. John wanted a pork roast for dinner and I had never made one before so it was experiment time. While the roast cooked, we played with the kids, watched some TV and played a couple of games. Ciara took a little nap but she did a lot of walking today. Hunter also took a nap, which he hasn’t done in months. I don’t know what has gotten into Hunter this past week but he keeps attacking me with kisses for no reason. He just walks up to me and plants a juicy, wet one all over my cheek. By the time he is done I need a towel to dry off, but it is so cute. When the roast was finished we got in the car and went to the store to get a couple things I forgot. The kids and I went back home while John took the roast to his dad’s house so they could have dinner while they watched the football game.
TUESDAY’S JOURNAL:
Again, the kids were up early this morning so they watched some cartoons and waited for the school bus. It was raining, again, so I put Hunter on the bus and then waited for the driver to lower the ramp so that we could get Ciara’s wheelchair on the bus. I got dressed and then went out to get some things done. When I got home I had a bite to eat and waited for Hunter to come home. It stopped raining by the time the bus came, I hope it stays that way when Ciara comes home. Hunter ran around and played until 2:40 when Ciara came home. I put them both in the car and we picked Mason up from school and took him to my sister’s house. When we got back home Ciara took a nap. When John came home I made dinner and then he went to his fire meeting. The kids roamed around for a while and then it was bath time. It is now 10:45 and Ciara is fussing so I have her sitting in her wheelchair, Hunter is bouncing on the bed. I hope they go to bed soon! Thursday is our 9th anniversary but I don't know what we are going to do that day.
Hugs To All, and ^^Angel^^ 
Sunday, October 24, 2004 10:56 PM CDT
FRIDAY’S JOURNAL:
When I woke Ciara up this morning she was so happy, just grinning from ear to ear and giggling. I wish there were more of those moments! Hunter just didn’t want to wake up so he was grumpy when we walked out to the school bus. When they were driving away I ran back into the house, had some breakfast and then headed out to get my errands done before the kids got out of school. I am not going to get into it, but today was a very hectic day. I got Hunter off the school bus and then had to head out again. I ran home to get Ciara and Mason, dropped Mason off at his dad’s and then went out again. Once I got home and was able to relax, it was after 5:00. I talked to Michelle for a while today and Jillian is doing so many new things, it is very exciting. For the rest of the evening we just had dinner and took it easy. Ciara had a pretty good day today so that made me happy, I hate it when she cries.
SATURDAY’S JOURNAL:
I was hoping to sleep in this morning but Ciara woke up at 6:00 so I couldn’t go back to sleep after that. The two of us watched some TV and took it easy, until Hunter woke up. John is doing an overnight haul so he will be home tomorrow afternoon, it is just the kids and myself today. It was raining when I woke up and hadn’t stopped all day. Around 3:00 I got the kids dressed and put them in the car. I picked my mom up and we went to Wal-Mart and then went back home. It was still raining so the kids and I just stayed in for the rest of the day and really didn’t do much to speak of. After dinner Hunter and I played for a while and Ciara napped most of the day. By 11:00 they were both sleeping and I went right after them.
SUNDAY’S JOURNAL:
I slept in until 10:00 this morning, YES! Ciara was already awake and lounging in her recliner with a juice cup, watching cartoons, she was so cute. The last couple of days she has looked very peaceful. Hunter woke up about an hour later and since then has been jumping all over the couches and watching cartoons. It is 1:15 right now and they are both watching Jimmy Neutron, Hunter is bouncing on the couch and Ciara is in her highchair. My sister called and asked if I could pick her up and take her to see Mason, so I did. John came home around 4:00 so he had a quick bite to eat and then we played a quick game of Nintendo before he had to go to his brother’s to help him with his computer. My sister called again and said that she needed a ride back to her house so I put the kids in the car are took her home. When we got back home Ciara was walking all over the house and I was very happy to see her walking so much. I made spaghetti for dinner so the kids and I ate and then they watched some cartoons while I played some games on the computer. It is now 9:00 and I am posting the journal early in hopes of going to bed before midnight. This next week at school is Red Ribbon Week to keep kids off of drugs. Each day has a different theme so that will be fun:
MONDAY – WEAR RED DAY: Red ribbon walk, the kids will walk laps around the playground
TUESDAY – STAMP OUT DRUGS: The kids will wear mismatched shoes and socks to stamp out drugs
WEDNESDAY – TEAM UP AGAINST DRUGS: Wear sport team gear to school (soccer, Giants, Kings, etc.)
THURSDAY – “TOON” OUT DRUGS: Wear cartoon clothing or bring a cartoon stuffed animal (Disney, Shrek, Garfield, etc)
FRIDAY – PUT A CAP ON DRUGS: Wear a crazy or interesting hat. (I wish I had Tommy’s crazy hats, they are packed away somewhere.) CHECK OUT THE NEW PICTURES! It is with my deepest sympathy that I tell you all this. I just heard on the news that one of the Hendrick Motor Sports airplanes crashed and all 10 people on board were killed, including members of the Hendrick family. Hendrick Motor Sports has done so much for the children and families at Duke and I can't tell you how sorry we are that this happened.
Hugs To All, and ^^Angel^^ 
Wednesday, October 20, 2004 1:29 AM CDT
SUNDAY UPDATE: 4:15 PM: It is with my deepest sympathy that I tell you all this. I just heard on the news that one of the Hendrick Motor Sports airplanes crashed and all 10 people on board were killed, including members of the Hendrick family. Hendrick Motor Sports has done so much for the children and families at Duke and I can't tell you how sorry we are that this happened. You can visit the Hendrick Motor Sports website by clicking here Hendrick Motor Sports Website
TUESDAY’S JOURNAL:
The last time I remember looking at the clock it was 4:00 am. The next time I woke up the power was out and I had no idea what time it was. John was still home so that surprised me, at least I woke up before the school bus came. It was pouring rain outside and very windy so that was knocking down power lines all over the county. Just as I was about to start getting the kids dressed, the power came on so that was a lot easier. John went to work and a little bit later I saw the bus pull up. Of course that is when the power went out again. I took Hunter out first and then ran Ciara out to the bus. I was about to make myself something to eat when the power went out again. I did a little cleaning up before our case worker from the Regional Center came over at 8:30. We discussed Hunter’s needs and what Ciara still needed, which is a new wheelchair. She was only here about an hour so that wasn’t bad at all. By the time John came home at 10:00 the power had gone out and came back many times but it didn’t stay on long enough for me to get anything done. Since the power was out and there was nothing for us to do, we went out to the store to get Ciara some pudding and Pediasure for school. While we were out, we stopped by the school to pick Hunter up. My mom called and asked if she could come over for a while so we picked her up and went back to our house. John went to work for a little bit so we just stayed home and watched TV, which wasn’t too easy because the power kept going out every 10-15 minutes. When Ciara came home I put her in the recliner with some juice and she was happy. That is about all we did until 6:00 when we went out for pizza with my mom, dad, step mom, Mason, his dad and his step mom. After dinner we dropped my mom off at her house and the kids and I went home while John went to his fire dept meeting. Both Ciara and Hunter fell asleep in the recliners so I just covered them with blankets and left them there.
WEDNESDAY’S JOURNAL:
John woke me up this morning when he was going to work so I got up and started getting things ready for the kids to go to school. It is still raining this morning, but at least the power is on today. They were both up a little earlier then normal so after I got them dressed, they watched Barney until the bus came. Hunter was very happy, as he always is when he watches Barney, so when he got on the bus, he was all smiles. My mom called me and said that she wasn’t feeling well, chest pains again, so I took her to the emergency room. I left there a little after 11:00 so I ran a couple errands and then went home to wait for Hunter’s bus. When he came home I put him in the car and we went back to the hospital to see what was going on. They said that they didn’t know anything yet and it would be at least an hour until they had the test results so Hunter and I went back home to wait for Ciara. When Ciara came home I put both kids in the car and we went to pick Mason up at school, it was still raining. I brought him back to my house and about half an hour later the hospital called and said that my mom was ready to go home. So, I put everybody back into the car and went to pick her up and take her home. When we got back to my house again, Mason played on the computer for an hour or so and then I took him to his dad’s. The kids and I didn’t really do much for the rest of the evening. John isn’t coming home tonight so Ciara napped, Hunter watched TV in the bedroom and I enjoyed dinner with nobody bothering me. As Ciara was sitting in her Tumble Forms chair and eating her dinner, I was watching her. She is just the most beautiful little thing I have ever seen. I just wanted to scoop her up and hug her. After the kids ate it was bath time and then bed time. 
I would like to thank all of you for signing our guest book. You really don’t know how much it means to us to hear from you. Sometimes I think that I am writing our journal but nobody out there is reading it so I am happy to see there are some people out there still. So thank you, it keeps me going! 
I would like to pass along another journal for you all to check out. It isa young man named Chance and you can read his journal by clicking here Chance's Journal
Hugs To All, and ^^Angel^^ 
Monday, October 18, 2004 11:53 PM CDT
FRIDAY’S JOURNAL:
Today we are going to Los Angeles for the MPS run! John left early this morning, he is driving his big rig to Bakersfield to drop a load and I will meet him there. After I packed our bags I picked up my sister and we were on the road. We stopped a couple of times on the way to feed the kids and get drinks. When we stopped the second time I noticed that our tire was flat so I filled it and called John. He was about an hour ahead of us so he pulled off into a rest stop and waited for us. He looked at the tire and seemed alright so we followed him to the yard to drop of his truck and then we all drove to LA. We got there around 6:00, had some dinner and then went to bed, it was a long day.
SATURDAY’S JOURNAL:
We had to get up early this morning because sign-ups for the MPS run started at 7:00. We got there a little before 8:00 which was OK because the run doesn’t start until 8:30 and the walk is at 8:45. It was cold this morning and a slight drizzle but not bad. I had made some posters with pictures of the kids so I hung those with the posters of other MPS kids that were there. It was about that time that I got to meet Jennifer, finally. I met Jenn on the MPS FORUM, her daughter Allison has Hurlers, they flew here from North Dakota (I think) just for the run. Jessica was there too, her daughter Katie just passed away 2 months ago, she also had Hurlers. Jessica is the wonderful lady who started the MPS Forum. I had just finished feeding Ciara when the run started. As I watched all of the runners run past me I must say, it got me. I started crying, all of those people were out in the rain to help our kids, it was amazing. I couldn’t help but think of Tommy as I watched them, it wasn’t the last time that happened today. It was now time for the Walk to start so everybody lined up, we were at the front of the pack, but not for long. There was one other Sanfilippo child there, her name was Carolyn and she is 12 years old. She is doing very well, I was impressed by her. All of the other kids were in strollers and wheelchairs so they all took off when the walk started. Hunter’s wheelchair had a flat tire so he had to walk which slowed us down. We had to keep switching Ciara and Hunter in and out of the wheelchair so they both ended up walking half a mile each. They were about to start giving out the awards but they had to send a truck to find us because everybody else had already finished, just us Sanfilippo families bringing up the rear! John and Hunter walked across the finish line, then Carolyn and her mom walked across and Ciara and I were the last ones to cross the line, but we did it! It was now snack time, the kids all had some doughnuts and crackers, Hunter kept stealing Alli’s goldfish crackers. They gave out the awards and then everybody left, except the MPS families. There was a MPS picnic after the run so while we all ate, there was a couple speakers that we listened to. Hunter ate so much I thought he was going to explode! There was a clown doing face painting and a magician that was keeping the kids entertained. I was surprised, there were 18 MPs families at the run this year so that was very exciting! By this time it was very cold and Ciara wasn’t happy about it so John pulled our van up to the curb and put her inside with the heater on, she went right to sleep. There came a time when Hunter just wouldn’t stand up, he wanted to roll around in the wet muddy grass so we put him in the car and headed back to the hotel. We are meeting Charlie Ornstein, he is a reported from the LA Times and he has done several stories about Tommy. I had emailed him to let him know we were going to be in town so we had dinner with him and his wife. Just as we were headed out the door, Jessica called and said that a few of the families were going out to dinner and asked if we would like to go with. I was bummed that we couldn’t go but she gave me her cell phone # to call when we got back to the hotel. So, we got in the car and headed out to meet Charlie and his wife. It was nice to finally meet her and great to see Charlie again. We had dinner at Wolfgang Puck’s and then grabbed some dessert to go at the Cheesecake Factory and then we went back to the hotel. I called Jessica and they were still at the restaurant so we left Ciara and Hunter at the hotel with my sister and went to meet up with everybody else. They were just finishing their dinners when we got there but we talked for a little bit and then they had to head out to the store before it closed. We went back to the hotel and put the kids to bed. I called Jenn to see what she was doing, Alli had just gone to sleep so I went over to chat for a while. It was nice to talk to somebody who knows what I am going thru and feeling and doesn’t judge. Thanks Jenn, you are wonderful! I think we talked for a couple hours and when it started to rain (we were on the balcony) I headed back to our room. Everybody was sleeping when I got there so I went to bed as well.
Allison's Journal
Kaity's Journal
SUNDAY’S JOURNAL:
I got up around 7:00 this morning so I started cleaning up the hotel room and packing everything so we could head home. Jennifer and Jessica stopped by our room before they had to head home, I can’t tell you how great it was to finally meet them both. After they left, we packed up, got the kids dressed and then headed back home. John drove until we got to Bakersfield and then we left him there. His truck was there so he is going back to work while I drive the rest of the way home. We had to make a few stops because Ciara was hungry and wanted to eat and eat. When we got back into Ione, I ran into the grocery store while my sister stayed in the car with the kids and then I took her home. By this time it was raining very hard, I couldn’t even see the road. It had been sprinkling on and off the whole drive home but it hit hard around 5:00. Ciara and Hunter were happy to be out of the car and in the house where they could run and stretch, and watch cartoons of course. We were all exhausted so after we had dinner, we were all asleep by 9:30-10:00.
MONDAY’S JOURNAL:
Ciara had fallen asleep very early last night and I didn’t have time to give her her pain meds so she woke up around 3:00 this morning crying. I gave her the meds and she went back to sleep. I woke up again at 6:00 and started getting everything ready for them to go to school. I didn’t give Ciara her morning meds because she had them at 3:00 this morning so I will have to go to school and give them to her a little later. Hunter did not want to wake up this morning but he walked out to the bus with us, he just wasn’t happy about it. Today they are getting a new teacher at school so I am hoping that all goes well. After the bus drove away I had some breakfast and then gathered up a few things and headed out to the school. Ciara was napping when I got there and Hunter had just finished his snack. I gave Ciara her meds and then Hunter was running around having a good time. I met the new teacher and I like her so hopefully things will work out well. When I left the school I ran to the grocery store and then went back home. I was surprised to see John home when I got there. We played a quick game of Mario Kart and then Hunter came home around 12:30 and he was happy, the bus driver said that he was very active and happy at school today. Ciara came home at 2:45 and he was awake and playing with her toy when I went out to get her. I brought her inside and then I had to pick Mason up from school and brought him to my house. My sister came over to pick him up and they went back to her house while I did some house cleaning. John had to go load his truck for work at 6:00 and when he came home we all had dinner and watched some TV before bed time.
CHECK OUT THE NEW PICTURES!
Hugs To All, and ^^Angel^^ 
Thursday, October 14, 2004 0:52 AM CDT
MONDAY UPDATE: I will update the journal by noon, I have to run over to the school to meet the new teacher.
WEDNESDAY’S JOURNAL:
Things happened last night, not at our house, and because of that, I was up at 2:00 this morning and didn’t get back to sleep until 4:30 or so. Ciara woke me up at 6:00 and Hunter was up not too long after that so I didn’t really get any sleep. After we all woke up and had breakfast, it was time to go out and get some things done. When we got back home, Mason called and asked if I would take him to his mom’s house so I did and then went back home again. John is doing an overnight haul so the kids and I just took it easy for the rest of the evening. Ciara isn’t walking much at all anymore and her right leg is causing trouble do we have been working with her to get her leg to straighten out. I got her up a few times tonight to let her stretch it out. She can stand for about 10 minutes but then she starts to cry.
THURSDAY’S JOURNAL:
YES!!! I got to sleep in until 8:30 this morning, yippee!!! When the kids woke up we had a quick bite to eat and then we were out getting a million things done before we have to leave for Los Angeles in the morning. On the way back home I stopped to get Hunter’s hair cut and boy did he throw a fit! Last week he didn’t even flinch or make a sound when he got his shots but you would have thought they were cutting his ears off with the clippers, they way he was flailing and screaming. When we got home Ciara took a nap and Hunter ran around and then went into the bedroom and watched some cartoons. A couple hours later I picked up my sister and brought her back to my house and we watched some videos. John was home when we got there and then around 8:00 he took her back home. That is when I finally had time to make my dinner, everybody else had already eaten theirs. We watched a little TV, the kids got a bath and then it was bed time. CHECK OUT THE NEW PICTURES! Tomorrow morning we will be leaving early to go down to Los Angeles for the MPS run. John will already be in Bakersfield so my sister, the kids, and I will drive down there and pick him up and then head out to LA. I don’t know if I will be able to get on-line while we are gone but I will try. If not, I will update when we come home on Sunday. I would like to thank those of you who sent us donations for the run, you are wonderful!
The National MPS Society is having their 19th Annual MPS Society’s Family Conference on December 16-19 in Florida. We haven’t been able to go to the last 3 or 4 and we really would like to hear what the doctors have to say about new treatments and see old friends and visit with the on-line MPS families that we have gotten to know. We don’t have the money to go this year, again, but we are still hoping that something will come along. Several states have programs thru ARC that help pay for the conference but not were we live. I have contacted everybody I can think of and have gotten nowhere. So, we have been able to get 3 America West tickets with John’s frequent flier miles but we still need one more ticket plus the hotel, food, etc. so we are fund raising (any ideas would be greatly appreciated) so we can attend the conference. For more information you can go to the MPS Society’s website MPS Family Conference Website
Hugs To All, and ^^Angel^^ 
Monday, October 11, 2004 11:13 PM CDT
I just received an email from Zuli's mom and Zuli is going into the hospital tomorrow for her cord blood transplant. Please stop by their website and see how she is doing by clicking here Zulieka's Journal
There is also another little girl named Lauren that is about to go thru transplant. You can visit Lauren's website by clicking here Save Lauren Reed 
SATURDAY’S JOURNAL:
John had to go do work at 4:00 this morning but he said that he would be home by noon. Ciara was up at 5:00 this morning and she didn’t go to sleep until very late last night so I wasn’t happy about that. I gave them a bath and then John came home. Every year around this time, all of the fire departments in the county have their annual fire dept chili cook-off and today was that day. We put the kids in the car, picked up my sister and headed to Volcano so see what was going on. The cook-off was over when we got there but the departments were doing their Muster. A Muster is when they all compete against each other doing different races and events. They did the tug-o-war right before we got there and there were doing the relay where they have to put on their whole turnouts, helmet, gloves, etc as fast as they can. The last one was the bucket brigade which John was in. That one is always fun to watch but you get a little wet. After everything was said and done, we headed home. We had dinner and watched a little TV and then hit the hay, we were exhausted!
SUNDAY’S JOURNAL:
I didn’t get to sleep in again this morning. I don’t know why, I just woke up early darn it! When John woke up I made his breakfast and then fed the kids when they got up. We didn’t really do much this morning but around 2:00 John took Ciara over to his dad’s house to watch the football game. I put Hunter in the car, picked up my mom and took her to the store and then we went back home. Alyssa and I chatted for a while and then I talked with Patty a little bit later. When John and Ciara came home I made dinner, Parmesan Crusted Chicken Breasts with Tomato and Basil, that is one of their favorites (the recipe is below). After dinner we really didn’t do much to speak of, just the usual things and then the kids were asleep by 11:00.
MONDAY’S JOURNAL:
Since the kids are out of school all week, I was hoping to sleep in this morning, but that didn’t happen. Ciara woke up at 5:00 crying and Hunter was up at 6:30 so, no sleep for me. After John went to work, the kids and I had breakfast and then just watched a little TV and played around all morning. John had brought home a bunch of boxes and duffle bags that were in storage, they are things from Duke. I went thru them this morning and it was so hard. Most of it was Tommy’s clothes. I can’t believe how much clothes that little guy had, and so many new clothes that he never got to wear. He was also a stylin’ kid! There are clothes starting at size 3T which is what he was when we got there. Then it goes up to size 5 which is what he was after his 2nd and then after his 3rd transplant wit all of the steroid weight. There were some of Ciara’s clothes in there and that was pretty sad too. They were size 8, now she is down to a size 6/6x. I just can’t believe how our family has changed in that past year. I wish I could go back to right after Tommy’s 2nd transplant and not change anything. The kids were happy and healthy then. Tommy was still a funny, happy little boy who loved to give hugs. Hunter was still talking a little and Ciara was still a chubby little freckled faced girl who could still walk. I miss those days so much and they will never be that way again and it breaks my heart. Ok, on with out day, Ciara seems to be having a fairly good day so far, I hope it stays that way. Around 2:00 I picked Mason up and took him over to my sister’s house. I then picked up my mom and we went to the auto parts store to get some things she needs to fix her car. Next we went to the dollar store and then I took her home. John got home the same time I did so we watched the news and then he had to go load his truck for work. I made dinner when he got home and Ciara and Hunter both ate a lot so I was happy about that. Ciara has been crying a lot tonight, I just gave her her meds and I am hoping that she will feel better soon. I just can’t stand to hear her screaming and crying and there is nothing I can do about it. It is 9:00 and I am going to see if I can get her to go to sleep, wish me luck!
I will try to add some new pictures tomorrow.
Parmesan Crusted Chicken Breasts with Tomato and Basil
2 cups shredded Parmesan -- make sure to get shredded cheese, not grated
4 (6 to 8-ounce) boneless, skinless chicken breasts
4 plum Roma tomatoes or small, vine ripe tomatoes, seeded and chopped
15 to 20 leaves fresh basil, pile leaves, roll then thinly slice -- chiffonade
Salt and pepper
----------------------------------------
Heat a large nonstick skillet over medium high heat -- your pan must be very hot when the chicken is added. Pile the shredded cheese on the work surface.. Season your chicken breasts with black pepper but no salt; the cheese will add enough salt to the taste of the dish. Press the breasts firmly into the cheese. Coat both sides of breasts with as much cheese as possible. Add 1 tablespoon extra-virgin olive oil to the skillet, 1 turn of the pan. Set breasts into the skillet and cook 7 minutes on each side, until cheese forms an even, golden casing around the tender chicken breasts.
While chicken cooks, combine chopped tomatoes with basil in a small bowl. Season with salt and pepper, to your taste. Spoon onto chicken breasts and enjoy!
The National MPS Society is having their 19th Annual MPS Society’s Family Conference on December 16-19 in Florida. We haven’t been able to go to the last 3 or 4 and we really would like to hear what the doctors have to say about new treatments and see old friends and visit with the on-line MPS families that we have gotten to know. We don’t have the money to go this year, again, but we are still hoping that something will come along. Several states have programs thru ARC that help pay for the conference but not were we live. I have contacted everybody I can think of and have gotten nowhere. So, we have been able to get 3 America West tickets with John’s frequent flier miles but we still need one more ticket plus the hotel, food, etc. so we are fund raising (any ideas would be greatly appreciated) so we can attend the conference. For more information you can go to the MPS Society’s website MPS Family Conference Website
Hugs To All, and ^^Angel^^ 
Friday, October 8, 2004 0:45 AM CDT
THURSDAY’S JOURNAL:
I sent the kids off to school this morning and they were awake and happy. I spent the morning not doing much of anything, at least nothing exciting enough to mention. Today is a minimum day at school and I had a meeting with the teacher at noon. When I got to school, Ciara and Hunter were eating their lunches and very happy about it. I met with their teacher for the last time, when they go back to school in a week, they will have a new teacher, I hope she is as wonderful as their last 2 teachers. When the meeting was over I took the kids home and we relaxed for the rest of the afternoon. I had to run to the store to get some items for dinner so I picked Mason up from school while I was out because my sister called and said that she had a flat tire. She met us at our house and we watched a couple videos and then she and Mason left. We didn’t really do anything for the rest of the evening. Ciara ate a lot of dinner tonight, I don’t know where she puts it all. She had a bunch in her hair so I had to put them in the tub and then put their jammies on. We watched some TV and then when it was time for bed, Ciara decided she was going to scream and scream. I couldn’t get her to stop so I put her in her wheelchair in front of the TV and gave her a dose of Benedryl and about 20 minutes later, she was asleep. Hunter had no problem going to sleep.
FRIDAY’S JOURNAL:
When I picked Hunter up from school yesterday I forgot to get the harness that he has to wear on the school bus. So, when the bus came this morning, they only had a small one. I brought it inside and squeezed Hunter into it and they were off to school. I had a quick bite to eat and then went out to get some errands taken care of. When I got home I did a little cleaning and then the kids came home at 12:30, they had a minimum day today and no school next week. Their lunch was untouched which surprised me but there was a note that said the whole class went to Burger King for lunch today. I know that Ciara and Hunter enjoyed that much better. My sister came over a few minutes later so she stayed with Ciara and Hunter while I went to pick up Mason and get some sodas since Hunter just spilled my last soda before I even got a drink. When we got back to our house, Mason play on the computer and we watched The Best Of Carol Burnett, I just love her! She and Mason left around 3:30 and John came home about 20 minutes later. He worked outside for a while and then had to go load his work truck for tomorrow. Hunter spent most of his time in the bedroom while Ciara was in the living room with me. For the most part, she has been happy and content today, that is always a good thing. It is now 7:00 and I am making dinner and then we played around and watched a little TV. Ciara went to bed around 10:30 but Hunter was still up and going strong. I would like to say a great big THANK YOU to those of you who sent us the Kool-Aid! I know it sounds dumb and I don’t know why nobody here carries it but it is a must have at our house. You are all wonderful!!!
The National MPS Society is having their 19th Annual MPS Society’s Family Conference on December 16-19 in Florida. We haven’t been able to go to the last 3 or 4 and we really would like to hear what the doctors have to say about new treatments and see old friends and visit with the on-line MPS families that we have gotten to know. We don’t have the money to go this year, again, but we are still hoping that something will come along. Several states have programs thru ARC that help pay for the conference but not were we live. I have contacted everybody I can think of and have gotten nowhere. So, we have been able to get 3 America West tickets with John’s frequent flier miles but we still need one more ticket plus the hotel, food, etc. so we are fund raising (any ideas would be greatly appreciated) so we can attend the conference. For more information you can go to the MPS Society’s website MPS FAMILY ONFERENCE WEBSITE
Hugs To All, and ^^Angel^^ 
Wednesday, October 6, 2004 10:39 PM CDT
TUESDAY’S JOURNAL:
Ciara and Hunter were both in a happy mood this morning when I was getting them ready for school. While I was putting Ciara in her wheelchair, Hunter was dancing to Barney and having a great time. When we walked out to the school bus, he was smiling and clapping his hands and Ciara was drinking her juice. After they drove away I had a quick bite to eat and then went out to run some errands before they came home. I found a Wal-Mart gift card that I didn’t know I had so I got Hunter some winter clothes, he needs them really bad. When I got home I waited for Hunter’s bus to come. The bus driver said that he was clapping and laughing the whole ride home. He came inside and had a snack and yep, you guessed it, watched some cartoons. Ciara was awake and playing with her toys when she came home. It was about that time that John came home, that surprised me. He was supposed to be gone overnight but the plant broke down so he came home. I was happy to see him because I had to take the kids in to get some shots today and I didn’t want to do it by myself. We went to the health department and waited for our turn. They took Hunter back first so John went with him because there is no way that I could hold him down while they gave him the shot. I was shocked when they came back in a couple minutes and Hunter never made a sound. I took Ciara in for her shots and she screamed and wiggled and was not a happy camper at all, poor little thing. On the way home we stopped at the store to pick up a dessert and then went to the fire department for their dinner. Ciara was not happy still and was crying so we didn’t stay long. I took the kids home after we ate and John stayed for the meeting. Ciara was still a little fussy so I gave her some Tylenol and that calmed her down a little. John and a couple of his friends came home and chatted outside for a while. By 10:00 the kids were sleeping and I wasn’t too far behind them.
WEDNESDAY’S JOURNAL:
Hunter woke me up around 4:30 this morning. He was sitting up in bed and screaming and acting like he was about to throw up. I grabbed a towel, just in case, and sat with him and after a few minutes, he calmed down and went back to sleep. We did this several times for the rest of the night, but he never threw up, thank God. I decided not to send him to school today so I got Ciara dressed and made her lunch and sent her off to school at 7:00. I had some breakfast while Hunter was still sleeping. He eventually woke up at 9:30 and had an explosive diaper so I had to clean up that mess and he continued watching cartoons. For most of the morning he stayed in the bedroom with the cartoons. Ciara came home from school and took a little nap. I had noticed that Hunter was curled up in a ball in the recliner which he has never done before. I didn’t look very good and he was very warm so I gave him some Tylenol and left him alone. My sister and Mason came over around 3:00 and Ciara was napping and Hunter was just starting to feel better. We had a bite to eat, except Hunter, he still wasn’t feeling well enough to eat anything so I will try him again later. We watched a movie and then they went back to their house. John is doing an overnight haul tonight so it is just the kids and myself so we took it easy for the rest of the evening. Ciara ate a huge dinner and then went right to sleep, nothing like a full tummy to make a girl happy. Hunter still didn’t want to eat anything but at least he is drinking some juice. I haven’t decided whether to send him to school tomorrow but I most likely will. I have a meeting with their new teacher tomorrow so unless he gets really sick again, I think he will go. I am assuming that the fever was from the shots he got yesterday.
The National MPS Society is having their 19th Annual MPS Society’s Family Conference on December 16-19 in Florida. We haven’t been able to go to the last 3 or 4 and we really would like to hear what the doctors have to say about new treatments and see old friends and visit with the on-line MPS families that we have gotten to know. We don’t have the money to go this year, again, but we are still hoping that something will come along. Several states have programs thru ARC that help pay for the conference but not were we live. I have contacted everybody I can think of and have gotten nowhere. So, we have been able to get 3 America West tickets with John’s frequent flier miles but we still need one more ticket plus the hotel, food, etc. so we are fund raising (any ideas would be greatly appreciated) so we can attend the conference. For more information you can go to the MPS Society’s website MPS Family Conference Website
Hugs To All, and ^^Angel^^ 
Wednesday, October 6, 2004 10:39 PM CDT
TUESDAY’S JOURNAL:
Ciara and Hunter were both in a happy mood this morning when I was getting them ready for school. While I was putting Ciara in her wheelchair, Hunter was dancing to Barney and having a great time. When we walked out to the school bus, he was smiling and clapping his hands and Ciara was drinking her juice. After they drove away I had a quick bite to eat and then went out to run some errands before they came home. I found a Wal-Mart gift card that I didn’t know I had so I got Hunter some winter clothes, he needs them really bad. When I got home I waited for Hunter’s bus to come. The bus driver said that he was clapping and laughing the whole ride home. He came inside and had a snack and yep, you guessed it, watched some cartoons. Ciara was awake and playing with her toys when she came home. It was about that time that John came home, that surprised me. He was supposed to be gone overnight but the plant broke down so he came home. I was happy to see him because I had to take the kids in to get some shots today and I didn’t want to do it by myself. We went to the health department and waited for our turn. They took Hunter back first so John went with him because there is no way that I could hold him down while they gave him the shot. I was shocked when they came back in a couple minutes and Hunter never made a sound. I took Ciara in for her shots and she screamed and wiggled and was not a happy camper at all, poor little thing. On the way home we stopped at the store to pick up a dessert and then went to the fire department for their dinner. Ciara was not happy still and was crying so we didn’t stay long. I took the kids home after we ate and John stayed for the meeting. Ciara was still a little fussy so I gave her some Tylenol and that calmed her down a little. John and a couple of his friends came home and chatted outside for a while. By 10:00 the kids were sleeping and I wasn’t too far behind them.
WEDNESDAY’S JOURNAL:
Hunter woke me up around 4:30 this morning. He was sitting up in bed and screaming and acting like he was about to throw up. I grabbed a towel, just in case, and sat with him and after a few minutes, he calmed down and went back to sleep. We did this several times for the rest of the night, but he never threw up, thank God. I decided not to send him to school today so I got Ciara dressed and made her lunch and sent her off to school at 7:00. I had some breakfast while Hunter was still sleeping. He eventually woke up at 9:30 and had an explosive diaper so I had to clean up that mess and he continued watching cartoons. For most of the morning he stayed in the bedroom with the cartoons. Ciara came home from school and took a little nap. I had noticed that Hunter was curled up in a ball in the recliner which he has never done before. I didn’t look very good and he was very warm so I gave him some Tylenol and left him alone. My sister and Mason came over around 3:00 and Ciara was napping and Hunter was just starting to feel better. We had a bite to eat, except Hunter, he still wasn’t feeling well enough to eat anything so I will try him again later. We watched a movie and then they went back to their house. John is doing an overnight haul tonight so it is just the kids and myself so we took it easy for the rest of the evening. Ciara ate a huge dinner and then went right to sleep, nothing like a full tummy to make a girl happy. Hunter still didn’t want to eat anything but at least he is drinking some juice. I haven’t decided whether to send him to school tomorrow but I most likely will. I have a meeting with their new teacher tomorrow so unless he gets really sick again, I think he will go. I am assuming that the fever was from the shots he got yesterday.
The National MPS Society is having their 19th Annual MPS Society’s Family Conference on December 16-19 in Florida. We haven’t been able to go to the last 3 or 4 and we really would like to hear what the doctors have to say about new treatments and see old friends and visit with the on-line MPS families that we have gotten to know. We don’t have the money to go this year, again, but we are still hoping that something will come along. Several states have programs thru ARC that help pay for the conference but not were we live. I have contacted everybody I can think of and have gotten nowhere. So, we have been able to get 3 America West tickets with John’s frequent flier miles but we still need one more ticket plus the hotel, food, etc. so we are fund raising (any ideas would be greatly appreciated) so we can attend the conference. For more information you can go to the MPS Society’s website MPS Family Conference Website
Hugs To All, and ^^Angel^^ 
Monday, October 4, 2004 11:21 PM CDT
FRIDAY’S JOURNAL:
HELP, I can’t remember what we did today! All I know is that I sent the kids to school and then came back home again. I picked Mason up from school and took him to his dad’s house and then went back home. Hunter was happy today but Ciara was crying a lot and I don’t know what the problem is. John didn’t get home from work until 8:30 tonight, poor guy. I got him some dinner, the kids had already eaten, and then we watched TV and went to bed fairly early. I am sure we did more today, I just can’t remember.
SATURDAY’S JOURNAL:
I slept in until about 8:00 this morning and John was up a little after that. I made breakfast and then we played some Nintendo and watched TV. Ciara was crying again this morning, nothing I do seems to help her. Thursday night she had fallen backwards a couple of times and landed on her behind, we have hardwood floors. I am wondering if maybe she broke her tailbone or hip or something when she fell. She also hasn’t pooped in a couple of days so that may also be the problem, it’s so hard to tell. She can’t sit because it hurts so I just don’t know what to do. I have given her some laxative last night and this morning so I am hoping that will help. After we had lunch, my sister came over to watch the kids while we went to the movies with my mom. We went to see Ladder 49 and it was a good movie. John is a firefighter and said that it was very realistic, but it was a sad movie. After the movie we went back home, Hunter was jumping on the bed and Ciara was sitting in my sister’s lap and she looked unhappy. My sister said that she had been crying for about 30 minutes. She and my mom left and we tried to make Ciara comfy but really didn’t have much luck. There comes a time when you just have to let her cry, there is nothing else we can do. We all had dinner and watched America’s Most Wanted. By the time I put Ciara’s jammies on, she had pooped 2 times and went to sleep early, YES!
SUNDAY’S JOURNAL:
Ciara was fussing late last night and couldn’t get comfortable so I put her in bed with us and she went right to sleep. I got up around 8:00 this morning and John and Hunter were up about an hour later. Sleeping Beauty didn’t wake up until 12:00 this afternoon. While she was still sleeping, the rest of us had breakfast and then we did the laundry. John went out to clean out the shed while I made a stew. When Ciara woke up she was a little grumpy so I gave her some pain meds and she was happy. John changed her diaper and Ciara had a big poop so we were happy. Right away I fed her A LOT and she ate every single bite and then drank a whole cup of juice. She watched cartoons for a while and then pooped again, yeah! She didn’t cry once so I guess that was her problem for the past few days so I am happy that she didn’t break her tailbone or hip. In the afternoon John took Ciara over to his dad’s house, along with some stew, while Hunter and I went to the bowling alley to meet Mason and my sister. They were 45 minutes late getting there so while we waited for them, Hunter and I had a bite to eat. I was tired of waiting so I started bowling without them. I was half way thru my game when they walked in so Mason finished my game and then we bowled another one. Hunter had a great time while we were there and ate like a horse. After we finished bowling I took my mom to the grocery store and then went back home. John and Ciara came home around 7:30 or so and he said that Ciara had a great day. She was happy and didn’t cry or fuss, yippee! I made dinner for everybody and then we watched TV and went to bed.
MONDAY’S JOURNAL:
I actually got up at 6:00 this morning, made the school lunches and had Ciara up and dressed by 6:30. She was feeling much better this morning and even gave me one of her silly crooked little grins that I love so much. I gave her some juice and then dressed Hunter. When I finished with him, he fell asleep on the couch for about 15 minutes but then he was awake and happy, just watching TV. After the bus picked them up I had a piece of bread and butter and then I had to go meet my mom and help her with a few things. We had some breakfast and then I stopped by the school to drop off some diapers. Ciara and Hunter’s class changed today so now they are in a new classroom with a new teacher. They split the class, the autistic kids are in one classroom and the other kids are in the new classroom so we will see how this works out but I think it will be a good thing. The autistic kids take too much attention and the other kids weren’t getting what they needed so now everybody is happy. When I left the school I went home and waited for Hunter to get home. He was happy and laughing when I got him off the bus and ran into the house to watch cartoons. John came home around 2:00 so now we were just waiting for Ciara to come home. Ciara was awake and playing with her toy when I got her off of the bus. I brought her inside, gave her her meds, some juice, and she was happy. I hadn’t heard from my sister and it was 3:00, school gets out at 2:45, so I drove over to Mason’s school to make sure he wasn’t sitting there with no ride home. He was standing under a tree so I picked him up and we went to the gas station for a snack and we passed my sister on the way to his dad’s house so we all went back to my house. Mason played some games on the computer while we all talked for an hour or so. When they left, Ciara fell asleep and Hunter was STILL jumping around on the bed. In the evening we all had dinner and then it was bath time. Ciara napped for a couple of hours while John and I watched a movie and Hunter ran around the house. It is now 9:20 and I am tired so I am hoping they go to bed soon, but I doubt it. JORDAN’S OBITUARY:
Jordan Robert Horton
DECATUR - Jordan Robert Horton, 22 month old son of Patrick and Carrie (Yeske) Horton, earned his angel wings on Sunday, September 26, in Duke Medical Center, Durham, North Carolina, after a brave battle against Hunter's Syndrome and complications due to a bone marrow transplant. Visitation will be 4 to 7 P.M., Wednesday, September 29, 2004 at Brintlinger & Earl Funeral Home. Funeral service will be 10:00 A.M., Thursday, September 30, 2004 at Brintlinger & Earl Funeral Home. Burial will be in Macon County Memorial Park, Harristown, IL. Memorials may be made to the family. Jordan was born October 29, 2002 in Durham, NC. He is survived by his Mother and Father; Paternal Family Members - Grandparents, Michael and Constance Horton of Forsyth, IL; Uncle, Michael Horton, Jr. of Chapel Hill, N.C.; Aunt, Kristen Horton of Forsyth, IL; Cousin, Beth Horton of Chapel Hill, NC; Maternal Family Members - Grandparents, Dale and Sheila Yeske of Taylorville, IL; Aunt, Angie Lyerla of Coffeen, IL; Uncle, Luke Lyerla of Coffeen, IL; Aunt, Cherie Yeske of St. Charles, MO; Cousins, Sheridan and Preston Lyerla of Coffeen, IL. Jordan will be forever missed but never forgotten Online condolences may be placed at www.caringbridge.org/il/jordan. Obituary written by family members
The National MPS Society is having their 19th Annual MPS Society’s Family Conference on December 16-19 in Florida. We haven’t been able to go to the last 3 or 4 and we really would like to hear what the doctors have to say about new treatments and see old friends and visit with the on-line MPS families that we have gotten to know. We don’t have the money to go this year, again, but we are still hoping that something will come along. Several states have programs thru ARC that help pay for the conference but not were we live. I have contacted everybody I can think of and have gotten nowhere. So, we have been able to get 3 America West tickets with John’s frequent flier miles but we still need one more ticket plus the hotel, food, etc. so we are fund raising (any ideas would be greatly appreciated) so we can attend the conference. For more information you can go to the MPS Society’s website MPS Family Conference
Hugs To All, and ^^Angel^^ 
Thursday, September 30, 2004 10:18 PM CDT
SUNDAY PM UPDATE: I am too tired to update the journal tonight but I will do it in the morning. I just wanted to tell you all that Alyssa's dad is going into surgery tomorrow morning for his cancer. Please say a prayer that all goes well during the surgery and that the doctors get all of the cancer. Thank you!
WEDNESDAY’S JOURNAL:
I got to sleep in until 7:30 this morning because the kids aren’t going to school today or tomorrow. After we had breakfast and got dressed, I ran to the grocery store but went right back home. We didn’t do much today, just took it easy. I cleaned up a little, sorted the laundry and put it all away. Ciara was fussy today, I think her tummy hurts. John came home around 6:00 so I made dinner, we played a couple games of Nintendo and then watched TV. John went to bed early because he has to get up at 3:00 this morning. Hunter went to bed around 11:00 but Ciara wouldn’t stop screaming, no matter what I did to try and help her. She has been having trouble pooping lately so I think that her tummy hurts, she just kicks her legs and screams. I gave her her pain meds, some Benedryl and some laxative and then put her in bed with Hunter and about 15 minutes later, they were both asleep. Ahh, I love the quiet!
THURSDAY’S JOURNAL:
I got up around 7:30 this morning and the kids got up about 8:30. We spent the morning doing absolutely nothing. We had breakfast and played around. John is doing another overnight haul so it is just the kids and myself again until tomorrow evening. Apria delivered the Tumble Form chair that we have been waiting for. They sent us the wrong size a couple months ago and we finally got the right one today. They wouldn’t take back the small one and they told me to sell it. Later in the day they called and said that they needed to come pick it up so they will be coming back to get it next week. Hunter spent the day bouncing around the bedroom while Ciara sat in her new chair and we watched some TV. She was a little fussy so I moved her several times to different chairs, walked, etc. We had lunch and then my sister called and asked if I could pick Mason up after school. By the time we had to pick him up, Ciara was sleeping so I carried her out to the car and Hunter tagged along. Mason didn’t want to go to his dad’s so he came over and played around my house until 7:00 when I brought him back to his house. It was nice to have him for the day again, I haven’t really seen him much for the past few months. When we got back home I fed the kids their dinner and then tossed them in the tub. It is now 8:30 and I am hoping that they go to bed fairly soon because I would like a few moments to myself. By 9:00 Ciara was sleeping and I had time to pop into the MPS Forum and chat with some MPS moms, it was nice, I haven't done that for a while. MPS FORUM Tomorrow (Friday) will be Alex’s 5th birthday, his first in Heaven. You remember Alex, he was in the room next to Tommy during his 3rd transplant. You can visit his journal and send your wishes by clicking here: Alex's Journal
The National MPS Society is having their 19th Annual MPS Society’s Family Conference on December 16-19 in Florida. We haven’t been able to go to the last 3 or 4 and we really would like to hear what the doctors have to say about new treatments and see old friends and visit with the on-line MPS families that we have gotten to know. We don’t have the money to go this year, again, but we are still hoping that something will come along. Several states have programs thru ARC that help pay for the conference but not were we live. I have contacted everybody I can think of and have gotten nowhere. So, we have been able to get 3 America West tickets with John’s frequent flier miles but we still need one more ticket plus the hotel, food, etc. so we are fund raising (any ideas would be greatly appreciated) so we can attend the conference. For more information you can go to the MPS Society’s website MPS Conference Website
Hugs To All, and ^^Angel^^ 
Tuesday, September 28, 2004 10:26 PM CDT
MONDAY’S JOURNAL:
Ciara was so cute this morning. I was getting her dressed for school and when I stood her up to pull her pants up, she just went crazy. She was hopping, waving her arms, giggling and smiling, I couldn’t even catch her to pull her pants up, she was all over the living room. Eventually I got her to sit down long enough to get her shoes on and then I got Hunter dressed. He wasn’t in as good a mood as Ciara was but he did alright. Once they were on the bus, I had some breakfast, did a couple loads of laundry and then went out. I stopped by the school to drop off some presents for the kids and the teachers that we got at Hershey. When I got there, Ciara was taking a nap and it was so cute. She had fallen asleep still holding the tambourine so I got a picture of her. Hunter was painting at the table so I talked to the teacher for a few minutes and then left. I picked up Ciara’s prescriptions, ran into the dollar store and then went home. I chatted with Alyssa for a little bit and then Patty called so we talked until Hunter’s bus got here. You will remember Patty, we met her and her son, Jesse, at Hershey while we were there, Jesse also has Sanfilippo. When I got Hunter off the bus, I put him in the car because boy, does he need a haircut! Of course every place we went to was closed today so we went back home. Hunter bounced around the house, from TV to TV, having a good time. When Ciara’s bus got here, she was sleeping but she woke up when I brought her inside. I put her in her recliner and she stayed there for a couple hours, watching the TV and drinking her juice. John isn’t coming home tonight, he is doing an overnight haul so it is just the kids and myself. I made dinner and then talked to Ellen Bowman for a while. It was nice talking to her, it had been a while. Ciara was in a great mood tonight. She was laughing, smiling, and waving her arms while hopping around the living room, just like she did this morning. I just love it when she does that, it is just the cutes thing ever. We spent the rest of the evening taking it easy.
TUESDAY’S JOURNAL:
Well, Ciara and Hunter didn’t go to sleep until 4:00 this morning! When the alarm went off at 6:00 I seriously thought about not sending them to school today but I really need to get some thing done around here so I got up and got them dressed. Ciara woke up in that same silly mood she was in yesterday, laughing and hopping around the room. Hunter didn’t want to get up, no way no how. As we were walking down the driveway to the bus, he was stumbling because he was still asleep, poor guy. When they drove away, I went back inside and had a bite to eat and got the pictures together for today’s journal. I ran out to the store to get some wipies, but of course they were out so I went back home. I started making chili, since I don’t know when John is going to come home I figured it would be easy to just heat it up when he gets here. The school called and said that Ciara was screaming and having trouble pooping but she finally passed it. They are going to send her home on the bus with Hunter and that is just fine with me. Ciara was sleeping when I got her off the bus so I left her in her wheelchair and she slept for a couple hours. My sister came over around 2:30 so she stayed with the kids while I ran to the store to get some cheese and then I picked Mason up at school and brought him back to my house. Ciara was awake and sitting on the couch playing with her toy and giggling while Hunter was sitting at my computer, pondering what to get into. We had a earthquake this morning but I didn’t feel it. John might have, he was closer to it then I was so I will have to ask him when he gets home this evening. We watched TV, I did a ton of laundry and cleaned up a little. John came home around 6:00 so I got him some dinner and then fed the kids. I asked him if he had felt the earthquake and he said yes. Usually he can’t feel them when he is driving his big rig but this one moved his truck on the road, he was 10 miles from where it happened. We played a quick game of Mario Kart and then he had to leave for his fire department meeting. I spent a lot of time talking to Michelle and Alyssa tonight. Around 8:00 I got Hunter some peanut butter and crackers so he ate that and watched his TV while Ciara relaxed in her recliner. I can’t believe that they only had 2 hours sleep last night and Hunter hasn’t had a nap all day and Ciara only had a small one. I hope they sleep good tonight! CHECK OUT THE NEW PICTURES!
The National MPS Society is having their 19th Annual MPS Society’s Family Conference on December 16-19 in Florida. We haven’t been able to go to the last 3 or 4 and we really would like to hear what the doctors have to say about new treatments and see old friends and visit with the on-line MPS families that we have gotten to know. We don’t have the money to go this year, again, but we are still hoping that something will come along. Several states have programs thru ARC that help pay for the conference but not were we live. I have contacted everybody I can think of and have gotten nowhere. So, we have been able to get 3 America West tickets with John’s frequent flier miles but we still need one more ticket plus the hotel, food, etc. so we are fund raising (any ideas would be greatly appreciated) so we can attend the conference. For more information you can go to the MPS Society’s website MPS Family Conference
One night I cried to Jesus
As I sat beneath the tree.
I looked into the open sky
And hoped He’s answer me.
I’m lost, dear Lord, I’ve traveled far
But still I seem to roam.
Please light the way and lead me; Lord
I need to get back home.
I told Him of my burdens
And of the sadness in my heart –
That from his Gracious love
I’d never felt so apart.
Why did you take my child, Lord?
I cannot understand!
I no longer can touch his face
Or hold his sweet little hand.
I’m angry Lord, I’m missing him.
I’m drowning in my sorrow.
Please help to heal my yesterday
And face each new tomorrow.
It was then I heard his gentle voice
And felt his presence near.
How I wanted to hold him
As I cried another tear.
He said, “Mom, I’m an angel now,
My spirit will be free.
I’m an angel now in Heaven,
So please don’t cry for me.
I was chosen by our Lord above
And now I’m in His care.
When you need me look inside your heart,
I promise to be there.
No one can ever take away
Our bond with one another.
For I’ll always be your precious child,
As you will be my mother.
So if you cannot find your way
Or the road to home seems far,
Just look up to the Heavens
And I’ll be your guiding star.”
Hugs To All, and ^^Angel^^ 
Sunday, September 26, 2004 10:26 PM CDT
SATURDAY’S JOURNAL:
Hunter woke up about the same time I did this morning, I thought he would have slept in longer, like Ciara did. John went out with his cousin today so the kids and I just stayed home and didn’t do much of anything. After they had breakfast it was time for a bath. Hunter always stays in the tub until the last drop of water goes down the drain, he loves bath time. Ciara was a little fussy so I sat her in her wheelchair with a chewy toy and she was more comfortable. While she was sitting in her chair, I decided to give her a haircut. I was surprised that she didn’t wiggle more then she did so I am happy. We had some lunch and then I baked some mini chocolate chip cookies. I lost count of how many Ciara ate but I think it was around 20 before I cut her off. I would have let her eat more, God knows she needs to gain the weight, but I wanted to save some for later and Hunter hasn’t had any yet. Eventually, Hunter came out of his lair so I gave him some cookies, he ate them, and went back into the bedroom. Ciara has done very well today, she hasn’t cried or fussed really at all so we have had a great day. Michelle called so we chatted for a while. Jillian is doing wonderful and continues to do new things all the time, Jillian's journal. Later on I made dinner for the kids and Ciara gobbled it up, she has eaten a lot today. While I was feeding Ciara, Hunter started screaming. When I looked in the bedroom I saw him on the floor with his leg up on the bed. He had been twirling around, like he always does, and he had spun so many times that the corner of the sheet came off the bed and wrapped around his foot/ankle and had him trapped. It was really tight on his foot and I had a hard time getting it off, but it was funny though. He was so mad, like a bear caught in a trap. After I freed him, he continued to bounce around the bedroom.
SUNDAY’S JOURNAL:
Once everybody woke up this morning, I made breakfast and everybody was happy once their tummies were full. Next it was bath time and laundry time. In the afternoon John took Hunter up to his dad’s house to watch the football game. I took Ciara out to lunch with my mom and Ciara ate and ate and ate. Next we went to the grocery store and then headed home. I called John and he said that Hunter ate french fries and watched the football game. He laughed and clapped during the game, he just loves it when the players get tackled. John and Hunter came home just as I was making dinner, chicken alfredo, so it was perfect timing. While John and Hunter ate, I fed Ciara in her high-low chair. She was grumpy and I don’t know why, it is now 8:30 and she has been crying since 7:00. I hate not knowing what is bothering her, I wish there was more that I could do to help her. Hunter has been watching cartoons in the bedroom, bouncing and spinning on the bed for the past hour, he is so funny to watch!
The Stockton Record newspaper ran a story today about Hunter's Make-A-Wish trip. You can read the article here Stockton Record Article 
Our little buddy Jordan has earned his Angel sings early this morning. He fought a very long and hard battle and our hearts are breaking now that he is gone. You can read what his parents wrote in his journal by clicking here Jordan's Journal
The National MPS Society is having their 19th Annual MPS Society’s Family Conference on December 16-19 in Florida. We haven’t been able to go to the last 3 or 4 and we really would like to hear what the doctors have to say about new treatments and see old friends and visit with the on-line MPS families that we have gotten to know. We don’t have the money to go this year, again, but we are still hoping that something will come along. Several states have programs thru ARC that help pay for the conference but not were we live. I have contacted everybody I can think of and have gotten nowhere. So, we have been able to get 3 America West tickets with John’s frequent flier miles but we still need one more ticket plus the hotel, food, etc. so we are fund raising (any ideas would be greatly appreciated) so we can attend the conference. For more information you can go to the MPS Society’s website MPS Conference Website
Hugs To All, and ^^Angel^^
For those of you fellow COCONUTTERS, this reminded me of our island!
Friday, September 24, 2004 10:54 PM CDT
The Stockton Record newspaper ran a story about Hunter's Make-A-Wish trip. You can read the article here Make-A-Wish Article
Please say a prayer for Jordan's family. Jordan earned his angel wings early this morning. He fought a very long and hard battle and our hearts are breaking now that he is gone.
WEDNESDAY’S JOURNAL:
I didn’t get to sleep until 2:30 this morning and Ciara started crying and crying so I put her in bed with me and she went right to sleep. I had to get up at 6:00 to get the kids ready for school and make there lunches so not much sleep for me today. John went to work around 8:30 and that is when the school called. Today is picture day so I had to run over to the school with the money for their pictures. I stayed while they took their pictures and then I left. I went to the store and then John called and said that his dad was going to take his aunt home and he wouldn’t be back until tomorrow so I went over to his house to pick up our dog, then I went back home. I did a little cleaning up and then Hunter came home from school. As usual, he ran into the bedroom and watched his cartoons. I put together some gifts for the kids in his class, just a little chocolate surprise for them. Ciara came home and she was sleeping when I got her off the bus so I left her in her wheelchair until she woke up. I gave her her meds, a juice cup and she relaxed in her chair. We didn’t really do much for the rest of the afternoon. Today is John’s birthday so my sister and Mason came over but they didn’t stay too long. I made him a steak dinner and then we watched TV and went to bed early, we are exhausted!
THURSDAY’S JOURNAL:
Ciara was happy when I got her up for school this morning but Hunter just didn’t want to wake up. After I got Ciara dressed, she sat on the foot stool with her juice cup while I carried Hunter out of the bedroom and got him dressed. After the bus drove away, I had a quick bite to eat and then I headed out to get a few things done. I stopped by the school around 11:30 to drop off some Pediasure for Ciara and when I walked in, Hunter was laughing and playing with one of the aids and Ciara was taking a nap. I stayed and talked with the aids and I am very happy with how the kids are being taken care of at school. Everybody is very concerned about Ciara’s weight, as are we, but with their help, she has gained 2 pounds in the last 1 ½ months so she hasn’t lost any more, she is up to 50.6 lbs. Their class will be splitting into two different classes, one class will be the autistic kids and the other class will be all of the other kids, including Ciara and Hunter. They are interviewing for the new teacher today but at least there will be a couple aids that know the kids well so I think it will be a good thing. With the new class, Ciara and Hunter will have more one-on-one attention and hands-on help with activities, etc. Hunter has been playing with kids from another class and he has been having a great time at school. Since I was already at school, I just took Hunter home with me around noon, instead of sending him on the bus. We went to McDonalds to get him some fries and my mom wanted something so we dropped her lunch off to her and headed home. Hunter took his fries into the bedroom and bounced around on the bed watching his cartoons. My sister came over around 1:30 so we looked at the pictures from our trip. John came home a few minutes after she got here which surprised me, he wasn’t supposed to be home until later but they cancelled his load. Ciara was sleeping when the bus brought her home but she didn’t sleep much longer when I got her inside. Hunter was being loud and woke her up. While my sister was holding her, I went to pick Mason up from school and drop him off at his dad’s house. That was about all we did this afternoon, watched a little TV, did a ton of laundry and played a little Nintendo. In the evening, when Ciara woke up from her nap, I made dinner and she and Hunter ate everything. Hunter has been very good tonight, when he was hungry he went into the refrigerator and grabbed a piece of string cheese. I told him to take it to daddy, I was doing the dishes, and he did but he was very impatient when John was opening it for him. I finally got to eat my dinner around 10:00. It is now 11:00 and Ciara is in her recliner drinking her juice and Hunter is in the bedroom on the bed watching cartoons.
FRIDAY’S JOURNAL:
Hunter woke up the same time I did this morning so he was awake and happily watching cartoons when I had to dress him. It is so much easier to get him off to school when he is awake and happy! Ciara woke up with smiles too, she is just too cute for words! With her crooked little grin and her cute little button nose. Anyway, after they left for school I decided that it was way past time to color my hair so I finally did it. Of course as soon as I put the goo on my head, the school called. I forgot to send diapers this morning, darn it! So, as soon as I washed my hair, I ran over to the school with diapers and Krispy Kreme doughnuts for snack time. The kids were out at recess when I got there so I went out to see what they were up to. They were sunning themselves and having a good time. The aids said that Hunter and Ciara ate as soon as they got to school and Ciara had already drank 2 cans of Pediasure on top of her breakfast so that was great. One of the aids also brought doughnuts this morning so we are going to fatten Ciara up is it kills us, hehe. When we all went back to the classroom I left. I had to drive to Lodi to pick up John’s paycheck and then I went back home, stopping at the store on the way. Hunter came home from school and he was tired but of course he didn’t take a nap. He watched some cartoons while I made dinner. I’m not sure what time John will be coming home so I just made a meatloaf, that should be alright whenever he gets home. Ciara was sleeping when she came home from school. I put her and Hunter in the car and picked Mason up from school. My sister came over to pick him up around 3:30 so I didn’t see him much today. Later on I took a meatloaf and some baked potatoes over to my dad and Gloria’s and stayed for a little bit, chatting. They were going out to dinner so I went back home and sorted some laundry. John came home so I got him some dinner and then we watched the news. I know, it all sounds so exciting doesn’t it! I fed the kids’ their dinner, ran to the store for some sodas and then Alyssa and I played a game of pool on-line, she won. It is now 9:00 and Ciara is roaming about the living room and Hunter is having a snack in the bedroom while he is watching his cartoons. 
Our little buddy Jordan has taken another turn for the worse and it looks like he willnot make it thru the night. Please stop by and sign his guest book, let Patrick and Carrie know you are praying for Jordan. Jordan's Journal
The National MPS Society is having their 19th Annual MPS Society’s Family Conference on December 16-19 in Florida. We haven’t been able to go to the last 3 or 4 and we really would like to hear what the doctors have to say about new treatments and see old friends and visit with the on-line MPS families that we have gotten to know. We don’t have the money to go this year, again, but we are still hoping that something will come along. Several states have programs thru ARC that help pay for the conference but not were we live. I have contacted everybody I can think of and have gotten nowhere. So, we have been able to get 3 America West tickets with John’s frequent flier miles but we still need one more ticket plus the hotel, food, etc. so we are fund raising (any ideas would be greatly appreciated) so we can attend the conference. For more information you can go to the MPS Society’s website MPS Conference
Hugs To All, and ^^Angel^^ 
Wednesday, September 22, 2004 4:17 PM CDT
I have a favor to ask of you. I can't find Sugar Free GRAPE Kool-Aid anywhere. Wal-Mart only sells it during the summer and our Wal-Mart is sold out. Next time you are out at Wal-Mart or your grocery store, can you please see if they have any? I will pay you for it, plus the shipping, I just can't find it anywhere. I found one place on-line but you have to order at least 3 cases of it and I just can't spend $120 on Kool-Aid. THANKS!
YEAH!!! I FINALLY GOT THE NEW PICTURES FROM OUR TRIP UP SO CHECK THEM OUT!
Grab a cup of coffee and have a seat, this is going to be a long journal today since I didn’t have internet during our trip!
THURSDAY’S JOURNAL:
I got up a little early for once and got the kids up and off to school. John and I ran out to get some things we needed for the trip and then went home and got everything packed and ready to go. I had called the school and the bus to have them bring Ciara home at 12:00 with Hunter instead of at 2:30 like she usually does. When they came home we had a quick bite to eat and then headed out to Sacramento for the Make-A-Wish Radiothon. We got to the mall early for a change so we roamed around until it was time for us to go on the air. I didn’t want to talk on the radio because I wouldn’t be able to do anything but cry so John did the talking. They talked to John and then our Wish presenters talked about Hunter’s Wish. They also talked to the lady from the Big Hairy Dog company in Sacramento, they are sponsoring Hunter’s Wish. They gave us a bunch of goodies and then since Hershey is a clinic of Big Hairy Dog, they sent out extra goodies for us and a bunch of chocolates so it was wonderful! We had to leave when we were off the air because we had to get back to the cemetery for Tommy’s balloon release at 7:00. While we were out doing everything this afternoon, my sister blew up the balloons so when we got home we just put them in the van, picked up Mason and went to the cemetery. My sister brought a picture of Tommy with a poem and some flowers and set them up for him. Everybody got a balloon and wrote a message to Tommy on it. We all sang happy birthday to him, I blubbered away, and then we let the balloons go. They were so bright and cheery, just like he was. We stayed and talked with everybody but had to leave because the limo was picking us up at 8:30. I walked Hunter out to the limo but he didn’t want to get in, he wanted to drive! We put Ciara and Hunter in the back seat and they looked so little sitting in that big limo, it was cute. Make-A-Wish is putting us up at the Double Tree Hotel tonight but on the way we stopped at Del Taco because we haven’t had time to get anything to eat. When we got up to our hotel room we had our dinner but it was hot. No matter how low we turned the air conditioner, it didn’t get any cooler. The kids finally went to sleep around midnight but John and I couldn’t sleep because it was so hot. Eventually John slept on the floor because it was cooler.
FRIDAY’S JOURNAL:
For some reason I woke up at 5:15 this morning and thank God I did. The power was out in the hotel so our alarm wasn’t working. After I took a shower I got Ciara up and fed her. John dressed her while I got Hunter up and ready. We were only about 5 minutes late this morning, the limo was already waiting for us when we went down to the lobby. We got to the airport around 7:30 but our plane was going to be 30 minutes late taking off. We were going to get something to eat while we were waiting for the plane but there wasn’t any place to buy food at the airport, only one little stand that sold magazines and candy bars. I started crying because John was walking with Ciara, I had Hunter and I was expecting Tommy to be running along beside of me with his little bag of toys. Around 9:00 they let us on the plane but we were already 30 minutes late. We ended up being another 30 minutes because security had to take a passenger off of the plane but I don’t know what the problem was. We finally got underway and the kids did great during the whole flight. Ciara went right to sleep and slept for a couple hours. Hunter played with his toys and books for the first hour and then I put on a DVD and he watched that for the rest of the flight. When we landed in Chicago we only had 20 minutes to make it to our next flight which was at the other end of the airport. We ran down there and had 5 minutes until it was time to board. I ran over to the McDonalds to get the kids something to eat and then we had to get on the plane. However, this plane was a little tiny jet so we had to walk down to the runway to get on the plane, I had never had to do that before. Hunter is afraid of heights so when he climbed up those steps and got to the top, he saw how high up he was and got scared and tried to go back down the stairs. John and Ciara were already on the plane and I had the computer, backpack, two bags of McDonalds and two sodas and I was trying to get Hunter from going back down the stairs, that is when his sandal fell off his foot and dropped down to the runway. I finally got him on his feet and the lady behind me took the computer and drinks while I got Hunter to his seat. Somebody else fished up his shoe for me and brought it over. I hate to fly and this little plane didn’t make me feel any better about it. We waited and waited and waited and then the pilot said that because of the hurricane in Pennsylvania, they had to put extra fuel on the plane in case we were rerouted to another airport. So, that meant that 6 passengers had to get off the plane so make up for the extra fuel weight. That took a while also so we were very late taking off. The first 30 minutes of the flight were OK, but because of the weather, the rest of the flight was bad because of the turbulence. I was doing alright until the flight attendant ran to the bathroom to throw up. Hunter started gagging but never really did anything and John’s Big Mac came back up. I was trying very hard not to think about how bad I felt and was so happy when we finally landed. We went to change their diapers and then the Make-A-Wish lady met us with our tickets and info. We got our rental car and headed to the hotel. Of course we went to the wrong hotel and it was pouring rain. We finally got to the right hotel around 9:45 PM. We ordered a pizza and went to bed not long after that.
SATURDAY’S JOURNAL:
HAPPY 5TH BIRTHDAY TOMMY! I KNOW YOU ARE HAVING A GREAT PARTY UP THERE FOR YOUR FIRST BIRTHDAY IN HEAVEN WITH ALL OF YOUR FRIENDS AND FAMILY! WE SURE MISS YOU LITTLE MAN AND WISH YOU WERE STILL HERE WITH US. WE LOVE YOU SO MUCH IT HURTS!
We got up around 9:30 this morning and once we were all up and dressed, we went out for breakfast. The hotel has a buffet so we went there, it wasn’t any good. They were out of a lot of the food and what they had was cold. There was absolutely nothing there I would eat so I didn’t and John said he had better food in the Marine Corps. Hunter ate a big bowl of fruit and a biscuit and Ciara really enjoyed her french toast and potatoes. After breakfast we got in the car and were going to find a drive thru so I could get something but the roads are flooded and we can’t get thru. We were detoured down some other streets but all the stores and restaurants were closed so we headed over to Herhsey’s Chocolate World. They have a 3-D show so we got tickets for the 2:00 show because the first 4 shows were already sold out. Next we went to the gift shop to see what they had there. We of course had to stop and get a chocolate cupcake (for Tommy’s birthday), chocolate mint brownie, chocolate dipped pretzel sticks and chocolate shake. I couldn’t feed Hunter his cupcake fast enough! Ciara was sleeping so we didn’t wake her for her chocolate, she will have plenty later. Next we went outside to see what was out there. Hershey Park was right there so we walked over there but they were closed because the park was flooded. We talked to one of the workers and she said that they didn’t know if the park would be open tomorrow but she gave us a phone number to call in the morning. Unfortunately the places we are supposed to go to this weekend are all closed because of the flooding so we flew out here and now have nothing to do. We went back inside and roamed around again until it was time to see the 3-D show. They let us in first and we got the front row. I thought that Hunter would be scared because he hates going to the movies, it is too dark and too loud for him. He did really good and didn’t make a peep the whole show. Ciara started crying as soon as it started so I took her out of her wheelchair and put her in the seat next to me and she was happy. After the show they gave us some chocolate bars and then we went over to the Chocolate-Making Tour ride. They had us wait for about 5 minutes and then took us in the back way so we wouldn’t have to wait in line with everybody else. Again, I thought that Hunter would freak out but he liked it. We rode along and watched as they showed us how they made the different candies. Again, they gave us candy bars at the end of the ride. Next we went upstairs to the Kit Kat Café to get the kids something to eat, we had free lunch coupons. They kids ate their grilled cheese sandwiches and then Hunter had a Kit Kat while Ciara and I shared a Kit Kat chocolate cream pie. I couldn’t feed it to her fast enough, she loved it! By this time it was almost 5:00 so we headed home. On the way we stopped at K-Mart to get some snacks for the room. There was a Panera Bakery right there so I got some sourdough bread and soup and we went back to the hotel. The kids had some more chocolate and then it started. For the next 2 hours Hunter didn’t stop spinning in circles on the bed. I am not kidding you, he was on his hands and knees just spinning around as fast as he could, it was so funny and he was so happy. Later on we had dinner while we watched TV. Hunter continued his spinning around, Ciara was fussy tonight, I think her hips are bothering her. It is now 11:00 and Ciara is hopefully going to fall asleep soon but Hunter doesn’t look like he is any time soon.
We didn’t get to send Tommy any balloons today for his birthday because nobody has any. I am hoping that they will have some someplace tomorrow and we can do it then.
SUNDAY’S JOURNAL:
When we got up this morning we called to see if Herhsey Park was going to be opened because yesterday it was under 15 feet of water. We were very happy when they said that they were opened today, yeah! We got the kids fed and dressed and we were off to have some fun. We are meeting Patty and Jesse at the park, Jesse also has Sanfilippo Syndrome, Jesse's Journal. While we were getting our tickets, a lady gave us three free tickets that they didn’t need. I called Patty to see if she already bought her tickets and she did, darn it. I gave the tickets to a mom and her two kids and then we went in the park. We saw Jesse and Patty right away and we were very happy to finally meet them. The first thing we did was take a ride on the monorail to see the park. We talked more then we looked around but that was just fine with me. Next we all had a bite to eat and decided where to go next. We took Ciara and Jesse on a couple rides, Hunter didn’t like them so we didn’t even try to take him on them. Next we were off to the race cars, Hunter just loves to drive so I know he is going to like this ride. Hunter and Jesse rode around while Ciara and I sat down and she ate a pretzel. We were right by Zoo America so we headed over there next. I must say I was really impressed at how well the kids were being today, no fussing or crying, everybody was happy happy happy! We walked around the zoo and looked at the animals. When we were finished there we went back to Hershey Park and rode a few more rides. They had a ride that was little semi trucks so Patty and I took Jesse and Hunter to that one. Hunter got in front but Jesse was too big so I rode in the back of the truck with Jesse and we had a good time. The last ride we did was the train around the park. After that we stopped again to get a snack. I got Hunter a Hugs & Kisses brownie and he ate the whole thing so fast, boy! Ciara was sleeping when I got back with the food but she woke up when we were almost finished. I gave her some funnel cake and the kids and John shared a fruit cup. Jesse is such a great kid, he just makes me laugh. By this time we were finished with the rides so we went shopping in the little stores. We bought a few little gifts for people and then it was time to go back to the hotel. We said goodbye to Patty and got some high-fives from Jesse and then we were off to the hotel. Now what happened for the rest of the evening I am not really sure. All of a sudden I got really sick so I was either in the bathroom or laying down for the rest of the night. I do remember John going out to get some dinner for everybody and the kids ate like crazy and Ciara went to bed right after that, but that is about all I remember.
MONDAY’S JOURNAL:
Hunter was up at 5:00 this morning jumping all over my bed so that meant I wasn’t getting any more sleep today! Ciara woke up around 8:00 fussing so we gave her some pain meds and she went right back to sleep. It is now 9:30 and Hunter still hasn’t slowed down or stopped jumping and spinning around. After we were all up and dressed and fed, we went out to Hershey Gardens. Hunter ran around, picked the grass and tried to eat some moss. Ciara walked around and touched the flowers but when she started fussing we put her back in her wheelchair. We didn’t bring Hunter’s chair with so by the time we got thru the regular garden and at the end of the children’s garden, he was crying and didn’t want to walk anymore. Ciara and I went ahead to the gift shop while John and Hunter took it slow and rested on some benches on the way to the car. When we left the Gardens we went over to the Hershey Museum. It wasn’t really what we were expecting and we weren’t there for more then 15 minutes or so. Since we were right there by Chocolate World, we walked over there so the kids could do the Chocolate Experience since the lines were too long when we were there Saturday. There wasn’t anybody there really but the Experience was closed today because it was broken but hopefully it will be working tomorrow. We took the kids to the food court and Ciara and Hunter shared a pizza and then Hunter ate some triple chocolate cake while Ciara ate a whole piece of chocolate cream pie. When we left there we stopped and got some soup at Panera and then went back to the hotel. Hunter jumped and ran around the room for over an hour! Ciara was fussy so we gave her a snack and then put her in bed under the covers and she went to sleep. John went for a walk around the hotel while Ciara napped and Hunter was STILL running, spinning, and squaking around the room. Hunter, literally, has not stopped moving since we got here! Around 7:30 we went out to dinner at the Red Robin. Hunter ate some fried cheese sticks and his hot dog and fries while Ciara inhaled her grilled cheese and fries. The kids and I shared a hot fudge sundae after dinner and then we went back to the hotel. Hunter just kept going, and going, and going until 11:30 when he finally went to sleep. Ciara was a little fussy so I propped her up with a couple pillows and put a blanket between her knees and she went right to sleep.
We didn’t get to do a balloon release on Tommy’s birthday like we had planned on because nobody here sells balloons. I thought they would have them at Hershey Park but they didn’t. I think it is because Zoo America is part of the park and they don’t want balloons to injure the animals. Tonight I finally found a store that sells balloons so I got a Blue’s Clues balloon and a Dora the Explorer balloon since they were Tommy’s favorite cartoons. We will release them in the morning when the sun is up.
TUESDAY’S JOURNAL:
When I woke up this morning I felt something weird on my foot, it turns out Hunter’s diaper had exploded while he was bouncing on the end of the bed. John helped me clean Hunter and get the sheets off the bed and then we started packing and getting ready to leave. Frank, from the Stockton Record newspaper, called to see how our trip was going. We talked for a little bit and then he said that the story would run in Sunday’s paper so don’t forget to check it out! When we left the hotel we went to Hershey’s Chocolate World for one last time. Hunter was mad so we got the kids a pizza to eat and he was happy again. They had fixed the Factory Worker’s Experience and there wasn’t anybody in line so we went over to do that. Make-A-Wish gave us a coupon so that Hunter could do it for free so he got his picture taken and they made him a badge that said he was an Official Product Inspector. Next we moved on down to the assembly line where Hunter got to package his own Kisses. Next we went up to the Kit Kat Café and we had one last chocolate cream pie before heading out to the airport. We actually got to the airport almost 3 hours early. While we were waiting for the airplane, I took Ciara for a stroll down to the end of the airport to look out the window. While we were there, a photographer said that he liked the sillouette of us at the window and asked if he could take our picture, I said OK. The airport is brand new and he was working for the architectural company that helped to build it. After that it was Hunter’s turn to run around the airport. We had an hour left until the plane got here so while Ciara was napping, Hunter and I had a bite to eat at the café. When Ciara woke up I fed her so she wouldn’t be fussy on the plane. The flight was delayed again but hopefully we will be able to make our connection in Chicago. We finally got on the plane around 6:30 and we were off. Hunter did great but Ciara fussed a little. When we got to Chicago we had 2 minutes to get to the next plane so we ran across the airport and made it just as they were boarding, shew! Hunter did great again on this flight but Ciara cried and cried for the first hour or so. I gave her some Benedryl and she eventually went to sleep. When we landed in Sacramento, Make-A-Wish had a limo there to pick us up and drive us home which was very nice since we were all exhausted and did feel like driving the hour home. We got home around 12:30 but I had to run out to the store to get some food for their lunches in the morning and drinks so by the time I got home at 1:30, the kids were sleeping and John and I weren’t too far behind them. CHECK OUT THE NEW PICTURES! Today is John's birthday so stop by our guestbook and wish him a wonderful day!
I would like to thank all of you who came out to the cemetery with us to celebrate Tommy’s birthday. A big thanks to all of you who released balloons and had birthday cakes on Saturday for Tommy’s 5th birthday, you are all so wonderful!
Hugs to All,
Alicia & ^^Angel^^ Tommy 
Saturday, September 18, 2004 3:39 PM CDT
TUESDAY PM UPDATE: Hello everybody!
It is 1:00 am on Wednesday and we are finally home! We had a great time but I am too tired to update right now. I have most of the journal already typed but I will finish it up and have it posted, hopefully, by noon. I have tons of pictures to add too so don't forget to come back later and see what we were up to! Oh yeah, today (Wednesday) is John's birthday!
Hey everyone...this is Alyssa. I wanted to let you all know that the family made it to Hershey okay, but of course in “Bennett” style!!!! They had plane delays and pretty much everyone got air sick on the last flight because of flying over the hurricane which made the flight quite bumpy. Today pretty much everything in the town is flooded so they can't go to many of the things scheduled...BUT Hunter and Ciara are having a great time and that is what matters. They are of course about two seconds from having to go “CEA” (chocolate eaters anonymous), but that is okay. Please pray for the waters to recede so that Hunter and Ciara can go to special events planned. Alicia says hi to everyone and that she will update as soon as they can get hooked up at the hotel and she will post pictures probably when they get back…
As most of you know today is Tommy’s first birthday in heaven…he would have been 5. It is hard not having him here, but I know he is partying it up in heaven. These milestones are hard…parents should not have to go to the cemetery to wish their babies happy birthday. I can’t help but think of last year when it was his birthday. He had a lot of radiation and got very sick, but we celebrated it the next day, which was also transplant day. I remember him getting so excited over his cake and getting his hands covered in frosting. Thank you to everyone who has released a balloon for Tommy today. Although it is sad that he is not here…it is also a day of celebration…because 5 years ago today god sent a little angel to make the world a better place and that he did. I wrote a poem for him and I wanted to share it with everyone.
5 years ago from this day today
an angel from god was sent here, but didn't have long to stay
he came into this world with a mission to be done
to show people how to laugh, smile and most importantly how to love
he did his job well, so well that he was quickly called back home
back into gods arms, to watch over his dearly loved ones
happy birthday little angel...my heart ache for you is still deep
party it up in heaven and look for your balloons I sent to you from me
Happy Birthday Tommy...I love you
Alyssa
Wednesday, September 15, 2004 1:21 AM CDT
TUESDAY’S JOURNAL:
Hunter woke me up at 5:45 this morning, he was jumping on my bed watching cartoons. I got him dressed and he watched Barney while I made his lunch and got Ciara ready for school. After I sent them to school I played on the computer and then went out to breakfast with my mom. I stopped by the school to give them some Krispy Kreme doughnuts for their snack time and then I went home. Hunter came home at 12:30 and he was happy when I got him off the bus. He ran into the house and ran straight into the bedroom and watched his cartoons. Ciara came home from school at 2:45, that was about the same time my mom came over. I have to get Ciara’s prescriptions at the pharmacy so my mom is coming with to sit in the car with the kids while I go into the pharmacy. We got to Kaiser at 3:30 and when I got to the pharmacy they said that they didn’t have anything for Ciara. I had called the refills in last Wednesday but they don’t have any record of that and since her pain meds are Controlled Substances, they can’t refill it unless I have the prescription written in triplicate. So, I walked over to the doctor’s office but our doctor is out on maternity leave and the other doctor we saw last week wasn’t there either. The receptionist told me to write a note to the doctor that was there so I did and then she told me to go downstairs and wait at the pharmacy. waited and waited and then the pharmacist called me and said that the doctor wouldn't call the prescriptions in until he actually saw Ciara. So, I went out to the car where my mom was sitting with the kids because this should only have taken 10 minutes. I put her in her wheelchair and took her to the doctor's office. By this time it was 4:30 so they put us in a room to wait for the doctor. So we waited, a nurse came in and talked to me about why I was there and what I needed. At 5:00 the nurse came in again and said that the doctor wasn't going to see her (they wanted to go home), I needed to take her to the Urgent Care. But, Urgent Care couldn't see her until 6:45 because they are closed between 5:00 and 6:00. By this time I was so angry I was about to kill somebody, she has been on these drugs for a long time and I never had to go thru any of this before. So we waited and waited and waited, finally they called us in. I told the doctor why we were there so he wrote the prescriptions, looked in her ears and we left. went down to the pharmacy and they said it would be 15 minutes. I took Ciara out to the car and then went back to wait. When I got back to the pharmacy Ciara's name was on the board which meant that her prescriptions were ready so I waited in the pick-up line. when I got up to the counter they said that they weren't ready, it was be another 15 minutes. I am getting angrier by the minute! After 15 minutes I went back up to the counter and they still weren't ready. About 30 minutes later the pharmacist said that they were out of the Oxycodone and that I needed to drive to Kaiser north to get it filled. I ended up waiting another 30 minutes and then he said that all of the pharmacies in Sacramento were out and it would take a week to get more. Eventually I got the prescription back from him and told him I would find somebody to fill it. The problem with that is that I have to pay for the prescription if it is not filled at a Kaiser pharmacy. I went back out to the car and Hunter was being so good. By this time he had been sitting in the car for 5 hours and he was so good. He just kept chattering and laughing! By now it was 8:30 so I drove my mom to her house and then took the kids home. We got home at 9:30, I got them something to eat and they went to bed around 10:30.
WEDNESDAY’S JOURNAL:
Ciara and Hunter didn’t want to wake up this morning so I dressed them while they slept. Around 7:00 I put Ciara in her wheelchair and put Hunter’s bus harness on and a few minutes later the bus pulled up. After they left I watched a little TV and then it was time to find a pharmacy to fill Ciara’s pain prescription. At 9:00 I had to meet my mom and help her get a couple things taken care of and then we went to the pharmacy. Longs is the only one that had some of her med but they only had 4 ounces but that was enough to get us thru our trip and they would have the rest when we get back so that was wonderful! While they were filling the prescription, my mom and I went to the school to drop off some Pediasure for Ciara. We got a surprise when we got there, today was Christina’s birthday so her parents were there with cupcakes and party goodies. I fed Ciara a cupcake, Hunter had already eaten one and was working on his second cupcake. We stayed for about 10 minutes and then we left, Hunter had a third cupcake in front of him when we left. I picked up Ciara’s meds and then I went home. Hunter came home about 30 minutes after I got home. I put him in the car and we went out to finish running some errands. We had to hurry home though to get Ciara off the bus. After school my sister and Mason came over for a little bit and then we went out to try and find a helium tank to blow up the balloons for Tommy’s birthday tomorrow. We had to go to a few stores before we found one, the last one in the county. We went back home and I did a little cleaning up before John came home around 5:00. We didn’t do much for the rest of the evening, just some laundry and getting ready to leave tomorrow on our trip. I made dinner, everybody ate, had a bath and the kids were sleeping by 10:00.
I just wanted to let you all know that the Make-A-Wish Foundation is having their annual Radiothon Thursday and Friday. They called me yesterday and said that a company in Sacramento has chosen to sponsor Hunter’s Wish. One of their clients is Hershey so they wanted to take part in Hunter’s Wish. So, tomorrow (Thursday) we will be going to Arden Fair Mall at 4:00 for them to present Hunter with his Wish package on the air! Turn into your radio at 105.1 and join KNCI, Make-A-Wish, and us!
Hugs To All, and ^^Angel^^ 
Monday, September 13, 2004 11:29 PM CDT
WEDNESDAY AM UPDATE: I just wanted to let you all know that the Make-A-Wish Foundation is having their annual Radiothon Thursday and Friday. They called me yesterday and said that a company in Sacramento has chosen to sponsor Hunter’s Wish. One of their clients is Hershey so they wanted to take part in Hunter’s Wish. So, tomorrow (Thursday) we will be going to Arden Fair Mall at 4:00 for them to present Hunter with his Wish package on the air! Turn into your radio at 105.1 and join KNCI, Make-A-Wish, and us!
I wanted to pass on a few websites for some kids that are in the hospital and in need of your prayers today:
Chloe and Hannahka's Journal
Jordan's Journal
Caterina's Journal
Ian's Journal
Lane's Journal
SUNDAY’S JOURNAL:
We really didn’t much this morning, just had breakfast, watched some TV, did some laundry, pretty boring stuff. Around 2:00 John and Hunter went over to his dad’s house. I took Ciara with me and we picked up Mason, his friend, and my sister and we went to the movies. Ciara ate two hotdogs and some chocolate so she had a very good time. After the movie I dropped everybody back off at their houses and then Ciara and I went home. I worked some a few things on the computer while Ciara napped and played around. John and Hunter came home around 7:30 or so. John said that Hunter had a good day, he played and didn’t cause any trouble, at least not any more then usual. I made dinner and then we just relaxed for the rest of the night. Around 11:00 Ciara was fussy and nothing would quiet her down so I gave her some applesauce and she was happy. I guess she was still hungry, which makes me happy that she is eating so much. After she ate, she went right to sleep.
MONDAY’S JOURNAL:
John went to work at 5:45 this morning so I had him wake me up when he left. I actually got the lunches made and the kids dressed and ready before the bus came, amazing! I had a quick bite to eat and then I went out to run some errands. I was looking at the Halloween costumes and found some cute ones. I couldn't pass them up so I bought them today, they are so cute! When I got home I talked to the Make-A-Wish people so they will be coming over Wednesday evening to give us our itinerary and other goodies so that is exciting. I can’t believe we are leaving Friday morning, it is going to be so much fun! I sure wish Tommy was coming with us, I know he will be there in “spirit” but I sure miss my little buddy. John came home from work around noon which surprised me, but he will be doing an overnight tomorrow so he won’t be home. When the school bus came, John got Hunter off the bus and then we played a little Nintendo and had some lunch, I made some chili. When Ciara came home I put the kids in the car and went to pick up Mason from school. John had to go help a friend fix his computer. I dropped Mason off at my sister’s and then picked up my mom and took her grocery shopping. We dropped the bags off at her house, stopped by my dad’s to drop off something and then we went to my house. She has been wanting to watch the movie “Miracle” but doesn’t have a DVD player so she is watching it here. We had dinner, Ciara has been a little fussy but not much so that is a good thing. Hunter has been running back and forth between the bedroom and the living room. He is watching his cartoons in the bedroom but runs out here to get some goldfish crackers and then runs back to watch the TV. John was eating his dinner when his pager went off, there was a wild land fire so he had to run out to the fire department. When he came back we finished watching the movie and then I drove my mom back to her house. I got back home at 9:30 and I am tired. The kids are still going strong but I am still holding out that they will go to bed fairly soon. I just wanted to thank you all for the kind words and emails that we have received about John's mom. We weren't expecting to lose her and she will be greatly missed.
Hugs To All, and ^^Angel^^ 
Saturday, September 11, 2004 1:30 AM CDT
The National MPS Society has several 5K runs going on. We will be going to the one in Los Angeles on October 16, for more info you can visit here www.mpsrun.com. If you would like to participate just visit this website to find the MPS Run nearest to you MPS Run Locations. Please come out and join us to raise money and awareness for all of the MPS disorders. Plus, you can meet many MPS children!
FRIDAY’S JOURNAL:
After I sent the kids off to school, John and I had to get moving. We stopped by the cleaners to pick up his suit and then I dropped him off at the funeral home. While the funeral was going on, I ran up to his parent’s house to get the food ready for after the funeral. Around 11:00 I headed back down the hill to the cemetery. I got there about 10 minutes before everybody else so I stopped to visit with Tommy. I brought him a Blue’s Clues balloon and tied it to his vase. My dad and Gloria were the first ones there so we talked until everybody else arrived. As they were lowering John’s mom into the ground, everybody placed a rose on her casket. After they were finished, I and several others brought a rose and placed them in Tommy’s vase for him, it was really sweet. I had to leave to pick Hunter up from school and then we went back up to his parent’s house. Everybody came over to visit and have a bite to eat. I stayed until 1:30 but then I had to leave to get Ciara off the school bus. I brought her in and changed her diaper. She and Hunter had some juice and then around 3:15 I put them in the car. I was going to go to Lodi to pick up John’s paycheck but as I was driving down the road I found Mason walking. My sister wasn’t there to get him from school so he walked over to my house. I wasn’t expecting him so it surprised me when he jumped out of the bushes at me, he is such a goof. I got him a snack and then drove him over to his dad’s. I then went to Lodi and then went back up to John’s family to visit. By this time Hunter was pretty tired and after he ate, he cuddled with his uncle Jim. Ciara played with toys for a long time and then we put her in her wheelchair and she was happy with her juice cup. When we left there we went over to the hospital to see my mom. She said that they doctors were going to keep her and do more tests so they really don’t know anything. We went home and didn’t really do much for the rest of the night. Ciara and Hunter both went to bed early, yeah!
SATURDAY’S JOURNAL:
Alyssa called me at 7:00 this morning and she put her phone up to the radio so I could hear the Radiothon playing the tribute to Tommy and his song, it was awesome! Alyssa, thank you so much for doing that for Tiny Tom! Ciara woke up a little bit later but Hunter slept until around 10:00 or so. We decided to go fishing today so after we had breakfast we headed up to Caples Lake. On the way we stopped at John’s dad’s house and dropped our dog off to spend the day there. We got up to the lake and we got a great spot on the beach, nobody else was around. Hunter played in the sand while Ciara sat in the chair and drank her juice. We fished for a while but didn’t catch anything. We decided to get back in the car and drive over to Bear River and try fishing there. There were having a fishing derby so I thought we might have better luck there. We always fish from the dam but the water level was very low so that didn’t go very well. We tried it for a while but didn’t catch anything. Hunter stayed in the car and laughed and played while Ciara was with us at the dam, she was getting grumpy so I held her for a few minutes but then we decided to head home. We stopped to get our dog and then we were going to stop at the hospital to see how my mom was doing. But that is when she called and said that she was home. They still don’t know what the problem was, I hope those doctors figure it out soon. We stopped at the grocery store and then went home. We all had some dinner and then played around. Ciara was fussy again so I put some warmer clothes on her and she was happier and fell asleep not long after that. Hunter spent the evening jumping on the bed and having fun. It is now 11:00 and I am going to bed soon. CHECK OUT THE NEW PICTURES!
In honor of Tommy's 5th birthday Alyssa has come up with an idea of how everybody can honor him. Since we can't buy him birthday presents this year, she would like it if everybody could send a donation to the Duke Radiothon. Her goal is $500 so if you would like to make a donation, just click on the DONATION button below and I will send her the money ASAP. THANK YOU ALL!!!
Thursday, September 9, 2004 0:28 AM CDT
In honor of Tommy's 5th birthday Alyssa has come up with an idea of how everybody can honor him. Since we can't buy him birthday presents this year, she would like it if everybody could send a donation to the Duke Radiothon. Her goal is $500 and she would need to money by Monday morning. She is going to write a check tomorrow and turn it in so even though she doesn't need your money until Monday morning, please email her and let her know how much you will be sending so she can write her check for the correct amount. You can email her at Sabiemc@aol.com if you have any questions. If you would like to make a donation, just click on the DONATION button below and I will send her the money ASAP. THANK YOU ALL!!!
Tuesday, September 7, 2004 11:43 PM CDT
Tomorrow (Thursday) MIX 101.5 in Durham is having their annual Radiothon for Duke’s Children’s Hospital. They are going to be playing a tribute song to Tommy so please listen for it! If you can, please send them a donation, the website is MIX 101.5 Website or Duke Children's Services Website 
Tommy's 5th birthday is coming up on September 18. We will not be here, we will be on Hunter's Make-A-Wish trip but I want to do something for him while we are here. So, we are going to do a balloon release at the cemetery on Thursday Sept. 16 at 7:00 pm. You are all invited to come help us celebrate Tommy. Please let me know if you can come so I know how many balloons to bring.
I am asking one more favor of you. I am also going to release some balloons on Saturday Sept 18, his birthday, and I would love it if you too would do the same. Tommy was born at 11:58PM but that is too late so I was thinking that we could all release our balloons at 11:58AM. If you are going to do this, please take a picture and send it to me, it would really mean a lot to us!
SATURDAY’S JOURNAL:
John left very early this morning for work and I didn’t get up until 8:30 or so when Ciara started crying, Hunter was up not long after that. The kids and I stayed in all day, I really didn’t feel like going out anywhere. John came home in the afternoon but we still didn’t do anything. He was exhausted so he took a nap and the kids and I just watched cartoons and took it easy. In the evening I made dinner and Ciara ate like a little piggy. The kids had french bread pizza, I had never made that for them before and they loved it. I made burritos for John and then his cousin came over and they went out for a while. Hunter and I played and danced while Ciara walked all over the house and played with her toys and then it was time for bed.
SUNDAY’S JOURNAL:
Everybody slept in this morning but we had to move fast once we were up because we are going to a BBQ up at Silver Lake today. Once we got the kids dressed and I packed everything, we were off. We went over to my mom’s house to pick up her and my sister and then we headed to the lake. On the way up the hill, a fire broke out up by Tiger Creek so since we were right there, we went to see what was going on, we got there before the fire engines did. The fire was huge and right there by a lot of houses so I hope they can save all of the houses there. I saw some goats running around, like they didn’t know where to go and tons of people just standing in the road watching the fire. Um, Hello? If that fire was one block from my house, I wouldn’t be standing in the street, I would be packing up and leaving! So, when we heard the sirens coming, we left so we wouldn’t be in anybody’s way and headed up to Silver Lake. It was very nice up there, not hot, not cool, it was just right. They had BBQ’d a whole pig in the ground so since I had just fed the kids in the car and I don’t eat meat, John, my mom, and sister ate while Hunter ran around and Ciara drank her juice. Hunter had a lot of fun, he loves dirt and rocks so he was in his happy place. Ciara was also in a great mood today, she walked and walked and walked. They had horses there so John took her over to see the horses and as she was yanking on the horse’s ear, she was just talking away and having a great time. Next it was time for the horseshoe competition. John’s team was up first and it was very close but they lost. By this time Ciara was getting fussy so it was time to go back home. When we got home Ciara was ready for her comfy recliner and Hunter took a 20 minute nap. We had dinner, watched some TV and it was time for bed by 9:30, it was a long day.
MONDAY’S JOURNAL:
John went to work early this morning, I never even heard him leave. Hunter woke up at 5:00 this morning and was bouncing all over the bed. Needless to say, I didn’t get to sleep anymore after that. John got home around 9:00 and was surprised to see us up, especially Hunter. We didn’t do anything for most of the day. Just stayed in, had lunch and watched some TV. Ciara seemed to be in a happy mood, probably because she didn’t wake up until almost 1:00. By the afternoon, Hunter was very tired but just couldn’t bring himself to take a nap. Around 7:00 we were pretty bored so we put the kids in the car and went to the store. My sister went with us so she helped watch the kids while John and I ran into Wal-Mart and then John stayed with the kids while my sister and I went into the grocery store. My mom needed a few things so we dropped it off and went back home. The kids had dinner and then it was bath time. Hunter was still exhausted but just wouldn’t go to bed. After her bath, Ciara was very talkative, she was sitting on the couch with her juice cup just chattering away, it was cute. She went to sleep around 11:00 and yeah, they go back to school tomorrow!
TUESDAY’S JOURNAL:
I am very happy that the kids are going back to school today. They didn’t go much last week because they were sick so I am looking forward to getting some things done around here. Hunter didn’t want to wake up this morning and wasn’t very happy when I put him on the bus. Ciara was playing with her toys and chatting when the bus drove away. I did a little cleaning and watched a little TV. Around noon the school called and said that Hunter had fallen and hit his head but he was OK. They were putting him on the bus and he would be home soon so I will see how he is when he gets home. Well, the school called back and said that I need to pick Hunter up because he wasn’t calming down and they didn’t want to put him on the bus. When I got to the school Hunter was playing and in a good mood, Ciara was taking a nap. He has a goose egg on his forehead but he is OK, it didn’t slow him down any. After we left the school I had to stop by the CHP office to pick up the accident report and then we went home. Hunter is jumping around on the couch, drinking his juice, and watching TV while chattering away so he is feeling just fine. It is very hot today, it is supposed to be 103 degrees, YUCK! While I was waiting for Ciara to get home I made some brownies. They are low carb brownies so we will have to see if they are any good. Ciara’s bus got here at 2:45 and I put her and Hunter in the car and went to pick up Mason at school. We stopped by his house to get a book and then went to our house to wait for my sister. Mason and I played a little Nintendo and then my sister came over. She stayed with the kids while I ran to the pharmacy to get Ciara some cream for her ears and then when I got home they left. As for the rest of the evening, I really don’t want to get into it all tonight but maybe next time. It is now 9:15 and the kids and I just got home and had a bite to eat and now I am hoping they will go to bed soon. CHECK OUT THE NEW PICTURES!
The National MPS Society is having their 19th Annual MPS Society’s Family Conference on December 16-19 in Florida. We haven’t been able to go to the last 3 or 4 and we really would like to go and see old friends and visit with the on-line MPS families that we have gotten to know. We don’t have the money to go this year again but we are still hoping that something will come along. Several states have programs thru ARC that help pay for the conference but not were we live. I have contacted everybody I can think of and have gotten nowhere. So, we are fund raising (any ideas would be greatly appreciated) so we can attend the conference. For more information you can go to their website MPS Society's Annual Family Conference
Hugs To All, and ^^Angel^^
Friday, September 3, 2004 1:04 AM CDT
We are dancing today because Jillian is out of the hospital and doing great. She has a blood infection but is on antibiotics and she is very happy to be home. Way to go Jilly! Jillian's Journal
Also, Jordan has been taken off the oscillator and but on the ventilator which is a step in the right direction. For the latest on how Jordan is doing, you can visit his journal. Jordan's Journal
THURSDAY’S JOURNAL:
Ciara has a doctor’s appointment this morning so she is not going to school today. I got Hunter up and dressed and he was dancing to Barney when the school but came to pick him up. When I was putting him on the bus, I noticed that his nose was running, great, now I have two sick kids. Ciara slept until 9:30 when I woke her up and tossed her in the bathtub. She didn’t have a fever this morning so that is good. I got her dressed and then we had to go to the doctor’s which is a one hour drive. She was awake and happy when we got there, and we were even 25 minutes early! That never happens. We didn’t have to wait when we got there, they took us right in. The doctor said that she thinks she heard something in Ciara’s chest so she wants to do an x-ray and some blood work to make sure her doesn’t have an infection. She also said that Ciara has a lot of fluid behind her left ear so that could be causing some problems. I told the doctor that Hunter had a runny nose but since he doesn’t have a fever, she didn’t want to give him any antibiotics yet. I will just have to keep an eye on him and see how he does. So, we went to the lab first and the line to register was out the door. I thought we would be there forever, waiting our turn. When we got up to the desk, she didn’t even give me a number to wait with everybody else, she took Ciara right back and drew her blood. Ciara was such a big, brave girl, she didn’t flinch or make a peep when they stuck her with the needle. Next we were off to x-ray. There was a lobby full of people waiting there too but we were only waiting 2 minutes and they took us right in. Ciara did great again, she didn’t even move when they took the pictures. We went over to the pharmacy to pick up her antibiotics and then back to the doctor’s office to see what the results were. Her labs were great, yeah! Her x-ray showed some hazing in her lungs which is the beginning of pneumonia so we caught it early and she should be OK. We left the hospital and headed home, stopping at the drive thru on the way because Ciara hadn’t eaten all morning. My sister picked Hunter up after school for me since I wasn’t home so when I got home, she and Hunter had gone out for french fries. John got a call for the fire department so he took off. Today is the Ione Fire Dept. Pizza Take-Over at Frank A’s Pizza so John was only home about 15 minutes and then he had to go out and deliver pizzas in the fire engine. Around 5:30 I ordered a pizza for the kids so the engine should be here in about half an hour. My sister came over around 7:00 and we had pizza and Ciara really enjoyed it, she didn’t eat yesterday so it was good to see her eating and enjoying it. Hunter didn’t eat anything so I know he isn’t feeling well either. I don’t think that I will send them to school tomorrow, I don’t want to get the other kids sick. Hunter fell asleep in the recliner around 8:00 and his nose was running all over his little face, poor thing. I changed him and put him in bed and he didn’t move again all night. Ciara went to bed around 10:00.
FRIDAY’S JOURNAL:
John had to go to work at 2:30 this morning so I packed his lunch last night before I went to bed, I didn’t want to get up at 2:30 to make it. The kids and I got up about 8:45 or so, I didn’t send them to school today because they are still sick. After I got them dressed we headed out to Lodi to pick up John’s paycheck and then we went back home. When we got home the kids both ate so they must be feeling a little better. While Ciara napped and Hunter watched TV, I cleaned up a little and chatted with Alyssa. My sister called and asked if I could pick Mason up from school so I woke Ciara up around 2:30, changed their diapers and then we drove other to the Jr. High to get Mason. We stopped so he could get a snack and then I drove him over to my sister’s. There is a huge fire here and all you can see is smoke and it burns your lungs, yuck! John called and said that he would be home in a few minutes so I started back home and we both got there at the same time. He was tired so I made him something to eat and it was about that time that my mom called and said that she wasn’t feeling well. My sister and Mason had left and she was by herself having chest pains and difficulty breathing but she refused to call 911. So, we put the kids in the car and drove over to pick her up and we took her to the emergency room. We got there at 5:00 and after I talked to the nurse and they took her back to a room and started some tests, we went back home. I called my sister and told her where my mom was so we will just have to wait and see what the doctor says. A couple hours later I called and they said that they wanted to admit her to the hospital but there was a bad accident and all of the patients were critical and took up all of the empty beds in the hospital. So, they sent my mom home because they had nowhere to put her. My sister picked her up and the finally got home around 10:30. Ciara had a great night tonight, she was happy and she and Hunter sat on the bed and watched cartoons together, they never to that. It is now 11:00 and Ciara is sleeping on the bed while Hunter is jumping on it and watching cartoons. I put up new pictures yesterday so check them out!
LET US KNOW YOU WERE HERE
Hugs To All, and ^^Angel^^ 
Wednesday, September 1, 2004 1:02 AM CDT
I took Ciara to the doctors today and she has pneumonia but we caught it very early so that was lucky. She hasn't had a fever today and hasn't slept all day again so hopefully she will start to feel better tomorrow. THANK YOU ALL FOR CHECKING IN ON US, I CAN'T TELL YOU HOW MUCH IT MEANS! CHECK OUT THE NEW PICTURES!
TUESDAY’S JOURNAL:
When I got up I made the lunches and got the kids dressed for school. I never know what to put on Ciara these days. She is always cold, she had bad circulation, so I don’t want to put shorts on her at 7:00 in the morning when the bus picks her up because she will be cold. But it has been 100 degrees in the afternoon and the bus doesn’t have air conditioning so when she gets home, she is red and hot. I have been sending her to school in Capri pants but I think I will put shorts on her tomorrow and see how it goes. After the bus left, I had a quick bite to eat and then I started cooking. My sister wants me to make her some beef stew again, she can’t cook at all. My mom wants me to make my taco meatballs for her, she has Parkinson’s and can’t cook anymore. John’s mom is in the hospital but should be coming home today or tomorrow so I am going to make a lasagna to take over for them so they don’t have to cook. So, I started with the stew and when I finished with that I had to run to the store for a couple of things I forgot. I dropped some stew off at John’s dad’s so he wouldn’t have to worry about cooking after spending the day at the hospital, then I went home. I made the lasagna’s and started the meatballs before Hunter came home so I was almost done. He was happy when he came home and immediately went into the bedroom to watch cartoons. I didn’t see him again until Ciara came home at 2:30. I finished cooking and did the dishes just as my sister came over. She stayed with the kids and I went to pick Mason up from school. He played outside for a little bite and then they left. I have another headache today and it won’t go away! Make-A-Wish called and said that they have our itinerary and they will mail me a copy. Their car will pick us up on Sept, 17 at 5:50 am. John came home about 6:15 and then at 7:00 he left for his weekly fire dept meeting. I fed the kids their meatballs and we watched some TV until John came home at 9:00.
WEDNESDAY’S JOURNAL:
Ciara woke me up around 6:00 this morning because she was coughing and coughing. When it was time to get her up for school I touched her and she was warm. She continued to cough up goo so I didn’t send her to school today. I got hunter dressed and on the bus. Ciara slept all morning. Around 10:00 I put her in the car and went out to run a few errands. I dropped a lasagna off at John’s parent’s house and then stopped at the bank and headed home. I fed Ciara a little and then she went right back to sleep when we got home and slept for hours. Hunter came home around 12:30 and he was happy and played. I tried calling my sister but couldn’t get a hold of her so I didn’t know if she was picking Mason up at school or not. It was 2:45 and I still hadn’t heard from her so I put the kids in the car and drove over to the school. I sat there for about 10 minutes and then I saw her with Mason. They went back to their house and I took the kids back home. Ciara went back to sleep again while Hunter jumped around and watched cartoons. Ciara woke up around 6:00 and she was still hot so I gave her some Motrin and juice but she still was uncomfortable. I called Kaiser and got an appointment for her tomorrow morning so that will make me feel better. She is so frail, she scares me. My sister came over to sit with the kids while I ran to the store and that is about the time that John came home from work. When I got back home my sister left and I got some dinner for John. A little bit later the kids and I had dinner but Ciara didn’t eat much. She was very fussy tonight so at 10:30 I have her all of her drugs and by 11:00 she was asleep. Hunter was also sleeping in the bedroom, curled up in my comforter. A few days ago I mentioned the Duke Children’s Radio-thon, well tomorrow morning Alyssa is going down to the radio station to tape Tommy’s story. They are going to play it along with the song “I Can Only Imagine” which we played at Tommy’s funeral. The words to the song are below.
Our little buddy Jordan is back in the PICU at Duke and isn't doing well. What he is going thru sure sounds a lot like what Tommy went thru. Please stop by and see how he is doing by clicking here Jordan's Journal 
The fire department that John is on is having a fundraiser. The Ione Fire Department Pizza Take-Over will be Today (Thursday) from 5:00 – 8:00 at Frank A’s pizza. Call early for delivery and make sure to mention the fire dept take over. Call 274-6313 to order! THEY WILL DELIVER YOUR PIZZA ON THE FIRE ENGINE!
Hugs To All, and ^^Angel^^
I CAN ONLY IMAGINE - by Mercy Me
I can only imagine
What it will be like
When I walk
By Your side
I can only imagine
What my eyes will see
When Your face
Is before me
I can only imagine
{Chorus}:
Surrounded by Your glory, what will my heart feel
Will I dance for You Jesus or in awe of You be still
Will I stand in Your presence or to my knees will I fall
Will I sing hallelujah, will I be able to speak at all
I can only imagine
I can only imagine
When that day comes
And I find myself
Standing in the Son
I can only imagine
When all I will do
Is forever
Forever worship You
I can only imagine
Monday, August 30, 2004 1:01 AM CDT
SATURDAY’S JOURNAL:
The kids and I didn’t get up until 9:45 this morning and boy was it wonderful. John did an over night so he won’t be home until this evening. We all had some breakfast and just stayed home all day. Not much to do and it is hot so I didn’t really feel like going anywhere. The kids just played and goofed around. John came home around 5:30 and we watched the news and chatted a little. My sister and John’s cousin are coming over so I ran to the store to get some hamburger for dinner. They got here around 8:00 so I made cheeseburgers and corn on the cob and everybody ate and talked. Then it was time to play Pictionary. Donny and my sister were on one team and John and I were the other team. We won both games! Around 1:30 I drove my sister home, got gas and went back home. John and Don were sitting on the couch chatting and Ciara was sleeping so I took Hunter into the bedroom and he went right to sleep and I wasn’t far behind him.
SUNDAY’S JOURNAL:
When everybody was awake I made breakfast and we watched some TV. Again, we didn’t do anything today, we were just lazy. We played games and watched some of the Olympics, nothing really exciting to talk about. The kids were getting fussy so we went to the grocery store. Ciara got to stretch her legs, Hunter got to whack strange women in the rear end so all in all they had a good time. We got to see their teacher for the past few years so that was a nice surprise. We miss you Lisa! After that we had to run an errand for my mom and then we went back home and I made dinner. The kids got a bath and then it was time for bed.
MONDAY’S JOURNAL:
I got up around 5:30 when John was leaving for work but I fell back to sleep and didn’t get up again until 6:40, oops. I got up and made their lunches for school and then got them dressed. At least the bus was late this morning so I had a little more time. After they left I had a quick bite to eat and then I went out to do some errands. When I got back home I did the dishes and waited for Hunter to get home. When he came home I put him in the car and we met my mom for lunch. After lunch we stopped to pick up my sister and then went back home to wait for Ciara to get there. When Ciara’s bus dropped her off we put her in the car and went to pick Mason up from school. We stopped at the gas station to get him a snack and then dropped him off at his dad’s house. We then went over to my dad’s to visit for a while. We talked while the kids watched cartoons. We stayed for a few hours but left around 6:15. Just as we were leaving, John called and said that he was home so we stopped to pick him up and then headed out again. We dropped my sister off at her house and then went to the hospital to visit John’s mom. His brother and nephew were there too so Cody and Hunter played while everybody else chatted. When we left the hospital we went home and had dinner. It is now 10:00 and I think the kids are ready for bed. I am making my dinner right now, I know it’s late, so I am hoping they will go to bed so I can eat without kids yelling and fighting. 
Our little buddy Jordan is back in the PICU at Duke and isn't doing well. What he is going thru sure sounds a lot like what Tommy went thru. Please stop by and see how he is doing by clicking here Jordan's Journal I am asking you all to pray for Ian. He is 4 years old and is in the PICU at Duke. He has the Adeno Virus which is what killed Tommy, there is nothing they can do to get rid of the Adeno Virus. Please pray for him and visit his website by clicking here Ian's Journal
The fire department that John is on is having a fundraiser. The Ione Fire Department Pizza Take-Over will be September 2 from 5:00 – 8:00 at Frank A’s pizza. Call early for delivery and make sure to mention the fire dept take over. Call 274-6313 to order!
Hugs To All, and ^^Angel^^ 
Friday, August 27, 2004 10:35 PM CDT
Our little buddy Jordan is backin the PICU at Duke and isn't doing well. What he is going thru sure sounds a lot like what Tommy went thru. Please stop by and see how he is doing by clicking here Jordan's Journal
THURSDAY’S JOURNAL:
I got up and made the kids’ lunch for school and then got them dressed. Hunter was still sleepy so he wasn’t very happy when he had to walk out to the bus. Ciara was in a great mood again this morning so I know she is going to have a good day today. When the drove away I had a quick bite to eat and then started to clean the house. Around 9:00 I ran out to the store to get John his sugar free Kool-Aid that is so hard to find. I saw it at the store so I had to get it before it was gone. I went back home and made a beef stew for when John got home from work. After that I waited for Hunter to come home from school. When I went out to the bus to get him, he was already walking down the steps and in a happy mood, that always makes me happy. We went into the house and he went right to his TV and sat down. I got him some juice and he was all set. My sister came over around 2:30 and a few minutes later Ciara’s bus came so my sister went out to get her. She was also still happy when we brought her inside. I got her out of her chair and she roamed around. She has been walking so much the past few days, I can’t keep her down! She is getting into everything but I am so happy that she is feeling good again. My sister took some stew home with her when she left to pick up Mason. After that we didn’t really do much of anything. John called and said that he would be home around 7:30 but he didn’t get home until 8:30 so he was tired. I got him some dinner and just as he was finished eating, his pager went off. He went out on the fire department call and then I heard it go off again for a 2nd call so he is really going to be exhausted when he gets back home. After the kids ate they got a bath and I put their jammies on. It is now 10:30 and Hunter is quieting down and Ciara is watching Three’s Company, silly girl. She must have been toasty and comfy because after her bath I put on her blanket sleeper and she went right to sleep. Usually she sleeps in her recliner with her knees pulled up to her chin, like a potato bug. But tonight she slept all night with her legs stretched straight out! Her hips must have felt better.
FRIDAY’S JOURNAL:
Since John had to have 10 hours off between last night and this morning, he didn’t go to work until 7:00. I actually got the kids dressed early and Ciara drank a while Pediasure before the bus got here. After they drove away and John went to work I checked my email and then it was time to start my day. I had to drive to Lodi to pick up John’s paycheck. I cried almost the whole way there, which is a 45 minute drive. I just kept thinking about Tommy and how much we miss him. I was listening to my “Tommy songs” and thinking about him, one of my “Tommy songs” is below. When I got back home I stopped at the bank and then I had to go to the DMV to get new plates for the van. While I was waiting there for an hour, the school called. The teacher said that Ciara wasn’t happy, she wouldn’t stop crying and they couldn’t get her in a comfortable position. They said that she drank a while Pediasure right when she got to school which surprised me because she drank one 45 minutes before that at home. We decided that she would come home on the bus with Hunter at 12:30 instead of 2:45 like she usually does. I got out of there around 11:30 and that is when my mom called. She wanted me to go to the DMV with her too! AAAHHH! When we finished with her car stuff I ran home to get the kids off the bus. As I turned the corner onto our street, I saw the bus in front of our house. The driver said that she just got there so they hadn’t been waiting long. Both kids were snoozing away so we got Ciara off first and I wheeled her into the house where she continued to sleep for about 30 minutes. Hunter walked into the house and went right to his TV to watch cartoons with her juice cup. Ciara had been awake for about 30 minutes and then she started screaming again. She cried for about 10 minutes and then fell asleep. She slept for a couple hours and when she woke up, she had a big hard poop in her diaper so I think that is what was hurting her. Since then she has been happy, yeah! It is now 6:45 and the kids are quiet and happy and I am about to get them some dinner. John is doing another overnight so it is just the kids and myself. Hunter ate fast and then went back to his lair. Ciara ate a lot and is now in her recliner watching Friends with me. John just got to the hotel and is having dinner, he should be home tomorrow afternoon. The kids and I watched the Olympics and when the synchronized swimmers came on, Hunter got all excited and kept hitting the TV when the swimmers would pop out of the water. It is now 8:30 and I am going to try to eat dinner now, but I have a feeling it isn’t going to happen.
I talked to Michelle at 8:00 tonight and she said that Jillian had her surgery and is doing well. She is in pain but that is expected, she is asleep for the evening. Michelle will update the journal tomorrow (Saturday) so stop by and see how Jillian is doing. Jillian's Journal I have some good news! Our little Sanfilippo friend, Zulieka, has been approved by Medicaid for her transplant. Please stop by her journal and read what is happening! Zulieka's Journal I am asking you all to pray for Ian. He is 4 years old and is in the PICU at Duke. He has the Adeno Virus which is what killed Tommy, there is nothing they can do to get rid of the Adeno Virus. Please pray for him and visit his website by clicking here Ian's Journal
“WHEN I LOOK TO THE SKY” By TRAIN
When it rains it pours and opens doors
And floods the floors we thought would always keep us safe and dry
And in the midst of sailing ships we sink our lips into the ones we love
That have to say goodbye
And as I float along this ocean
I can feel you like a notion that won't seem to let me go
Cause when I look to the sky something tells me you're here with me
And you make everything alright
And when I feel like I'm lost something tells me you're here with me
And I can always find my way when you are here
And every word I didn't say that caught up in some busy day
And every dance on the kitchen floor we didn't dance before
And every sunset that we'll miss I'll wrap them all up in a kiss
And pick you up in all of this when I sail away
Whether I am up or down or in or out or just plane overhead
Instead it just feels like it is impossible to fly
But with you I can spread my wings
to see me over everything that life may send me
When I am hoping it won't pass me by
And when I feel like there is no one that will ever know me
there you are to show me
Hugs To All, and ^^Angel^^ 
Wednesday, August 25, 2004 10:03 PM CDT
I have some good news! Our little Sanfilippo friend, Zulieka, has been approved by Medicaid for her transplant. Please stop by her journal and read what is happening! Zulieka's Journal I am asking you all to pray for Ian. He is 4 years old and is in the PICU at Duke. He has the Adeno Virus which is what killed Tommy, there is nothing they can do to get rid of the Adeno Virus. Please pray for him and visit his website by clicking here Ian's Journal
TUESDAY’S JOURNAL:
When I was packing the kids lunch for school I realized that I forgot to buy more yogurt for Ciara. So, I am going to have to run to the store and get her some before lunch time. After I sent them off to school, I had to take the van down to get it aligned. It needed that because of the accident last week. It only took 20 minutes and then I ran into the grocery store. While I was there I grabbed some Krispy Kreme doughnuts for the class and went over to the school. They had just started snack time and they were all very happy to get the doughnuts. Ciara had already eaten some french toast and pudding and was inhaling her doughnuts. They were all surprised by how much she had eaten. Hunter was eating like a little piggy too and he really enjoyed his doughnuts. I only stayed for a few minutes and then I had to go. I went to Wal-Mart to get some diapers and then went home. Hunter was happy when he got home from school. He had his usual snack and watched his cartoons. Ciara was awake and happy when she came home around 2:45. A few minutes later my sister and Mason stopped by on their way home. John came home around 3:00 so I was happy. Tonight is the parent’s Back To School Night at school and I was hoping that he would be able to go with me. When we got there John got to meet their new teacher and see their classroom. We stayed for about half an hour but had to leave because John had his fire department meeting at 7:00. I dropped him off at the department and the kids and I went home. We had dinner and Ciara ate very well. Hunter ate all of his dinner and kept stealing the food out of Ciara’s hand too. That was is for the rest of the evening. John came home around 10:30 and then about 11:00 the kids were asleep and I wasn’t too far behind them.
WEDNESDAY’S JOURNAL:
I didn’t get up when the alarm went off so I had to rush around to get the kids ready for school this morning. Just as I finished dressing Hunter, the bus pulled up early so I had to toss Ciara in her chair and run them out to the bus. When I went back inside I had some breakfast and then I went out. I ran a few errands for my mom and then went home to wait for Hunter’s bus to bring him home. He was cranky when he got home, I think he was sleeping when the bus got here and he was grumpy when he had to wake up. We went inside and he had some juice and then ran around like a monkey, he wasn’t tired anymore. Ciara came home around 2:40 so I put the kids in the car and went to pick Mason up from school. We went back to my house and my sister got there right after we did. She wanted to drive out to Sloughhouse to get some corn and pickling cucumbers because she and her friend are going to make pickles. We dropped Mason off at his dad’s house and headed out for the pickles. After we got them we had some dinner and then went home. Ciara walked all over the house, she has been doing that for the past few days. It is wonderful to see her walking so much, but man can she get into everything! By 7:30 she was napping in her recliner and Hunter was watching cartoons in the bedroom. I called John and he was about to go to bed so I didn’t talk to him long. He is doing another overnight and won’t be home until tomorrow. It is only 8:00 but I am getting my journal done early in hopes of getting to bed early, I have had a killer headache for two days now. I talked to Michelle this evening and I would like to ask all of you to say a prayer for Jillian. She is going into the hospital on Friday for her Nissen surgery and will be in the hospital for almost a week. You can visit her journal for updates by clicking here Jillian's Journal .
ON A PERSONAL NOTE: Today it has been 9 months since Tommy passed away. I can’t believe that it has been that long, but it feels like it just happened. For 9 months I carried him while he kicked me like a mule. Now, he has been gone for 9 months and it still feels like I was kicked by a mule. I can’t even begin to tell you how much we miss our little bongo player. I thank God that I have Ciara and Hunter to keep me busy because I don’t know what I would do without them.
Below is an email that I got from Alyssa and wanted to share:
Hey Alicia,
I wanted to share a story with you of something that happened yesterday. I was having a hard night, everything lately has seemed to go wrong...my dad has cancer...my little puppy is really really sick...and of course I miss Tommy more then words can express. Last night I just had that "I can't deal" feeling and I went outside and sat down. For the first time since Tom died i let my heart speak to him. I said over and over again "Tommy...please let me know if you are here with me. I need you". I waited for a sign and nothing. About an hour later I went outside to walk the dogs and I just looked up to the sky for whatever reason and right above the tree line I saw a shooting star. This was no ordinary shooting star, this one was so bright that it looked like a firework. It left a trail of glowing sparkles. After Tommy died, there was this poem that made me think of him. It was the one about a shooting star that glows brighter then the rest. It was him...for the first time since he passed I felt him. So thank your baby for me. He really is a shining shooting star. Thank you Tommy, I really needed that, I really needed you and there you were.
Love, Alyssa
Tommy, you are a shooting star among ordinary stars.
It passes quickly, but while it's here it lights up the whole sky.
It's the most beautiful thing. So beautiful that the other stars stop—
and watch. You almost never see one because they are very rare--quite rare.
BUT I SAW ONE!!
Hugs To All, and ^^Angel^^ 
Monday, August 23, 2004 11:00 PM CDT
THURSDAY’S JOURNAL:
I sent the kids off to school but we are having problems with the school bus people. One bus driver keeps complaining about Ciara’s wheelchair. The footrest is broken so when I strap her feet down to it, her feet slide right out. I can’t buy a new one because nobody sells them so I don’t know what to do. She is also complaining about a couple other things that I just can’t afford to fix. It will cost around $900 to get all of the items that need to be replaced and a new chair is $1100, it just doesn’t make sense. This bus driver is also complaining because one day I didn’t send Hunter to school in his wheelchair and that made her mad. Hunter HATES his wheelchair so they don’t use it at school. They have one that he likes and climbs into by himself when he is tired so we just use that. Hunter is also afraid of heights and freaks out when they wheel him onto the lift and lift him into the bus. Since he is so unhappy I don’t think he needs to be transported in his chair. This driver is insisting on it and said that she is going to write me up and change Hunter’s IEP so that he has to be in his wheelchair. Of course that pissed me off, nobody is going to tell me what to do with my kids, I know what is best for them, not some bus driver on a power trip! I sent a letter to school with them this morning so hopefully things will change. Hunter came home from school and took a tiny nap and then was recharged and ready to go. He had a snack and his cartoons and he was happy. When Ciara came home from school she was awake and in a good mood. The teacher sent home a note and said that she will do anything to help us with the bus problem. I took Ciara inside and then called the teacher and we came up with a solution so I am pretty happy about that. When John came home from work we all had dinner and watched a little TV while John did some computer work. I was happy when the kids went to bed around 11:00 all on their own.
FRIDAY’S JOURNAL:
I got up around 6:30 and got the kids ready for school. Today is the first day that Ciara will be using Hunter’s wheelchair and he will be riding in the regular bus seat like he used to do. I think everybody will be much happier this way. John was still home so he helped me get the kids out to the bus, then he went to work. After they left I had breakfast and then did some cleaning. The TV in the living room wasn’t working when I got up this morning, nothing but snow on the screen. I called the satellite company and they had me do all sorts of things but nothing worked. They said that they will send out another receiver but it will take 5 days to get here. Great, no TV for 5 days, what are the kids going to do?! Not much to say since I can’t use my car or go anywhere. Hunter came home around 12:30 and had a snack while he watched his cartoons, then we played a little. Ciara came home at 2:45 so I put the kids in the car and went to pick up Mason from school, then he went to his dad’s. We really didn’t do anything else for the rest of the day. When John came home we had dinner and then tried to watch TV on the tiny little TV that Hunter usually watches in his little corner. John took the receiver from the TV and hooked it up to the TV in the bedroom and it worked so the TV is broken. Great, just we I need, to buy another TV. Around 6:00 I found Hunter in bed, wrapped up like a little burrito in the comforter, snoozing away. He slept for about an hour and then was up and watching his cartoons again, jumping around the bed. That was about it for the evening.
SATURDAY’S JOURNAL:
John took my van in to get fixed, it hasn’t been driving right since the accident last week. He got home around 1:00 but had to leave right away to go to work. Since I haven’t been able to leave the house for a week because I couldn’t drive my van, I tossed the kids in the car and went out. My mom needed to go to the grocery store so we met her there. After the shopping trip I went home and the kids goofed around for a while. John came home around 5:30 but had to go up to his brothers and help him with something. Alyssa and I chatted on-line for a while and played some games and the kids ran around. I put the kids in the car and met my mom, sister, and John at the pizza place and everybody had fun. After dinner we went back home because it was almost 9:30. John has been putting all of the videos we took at Duke onto DVDs so he did that for a while. Eventually we all went to bed but John got up around 4:00 for a fire dept call, there was an accident. He came back an hour later, nobody was injured.
SUNDAY’S JOURNAL:
Everybody slept in this morning but me. I got up and made myself something to eat and then watched a little TV. Hunter woke up and was jumping around on the bed. When John woke up I made him breakfast and that was about the time that Ciara got up. After everybody was fed and happy, we did some laundry and tried to decide what to do today. Our TV broke so we went to our storage to see if we had another one, we did, yeah! We then we went to Wal-Mart and my sister met us there and we roamed around the store. After we left the store we went to the bowling alley. Ciara and Hunter had some french fries while John and I bowled a game, he won. Of course they gave up lane #13, wouldn’t you know it. John’s cousin called and needed a right so John went to pick him up. I called my mom to see if she needed anything while I was in town and she was hungry so I got her something and then went back home. When I got home around 6:00 I ran in to get Ciara’s pain meds and as I was walking back out to the car, John pulled up. I wanted to take the kids to the park to play but on the way we stopped at the fire department. They got a new fire engine so we ended up staying there for an hour or so while the guys played with the engine. I took the kids out of the car and immediately Hunter fell down and skinned both his knees. He cried and cried and bled everywhere. The fire chief cleaned up his knees and put band-aids on for him. After that the kids ran around for a little bit but them I put them back in the car. The chief asked me to take a few pictures for him so I did and then we ran back home to put them on disk for him. We went back to the department and gave it to him and then went to the park. I took the kids and John drove the fire engine with the chief and his little boy, Kenny. Kenny and Hunter ran around and played while Ciara sat on the slide and drank her juice. When it was getting dark, it was time to go, that was around 8:30 or so. When we got home we had dinner and watched a little TV before it was time to put the kids to bed.
MONDAY’S JOURNAL:
John didn’t have to go to work until around 7:30 so he helped me get the kids on the school bus. He went out to the plant while I ran to the bank to get him some money before he left, then I went back home. I made some breakfast and watched a little TV before I went out to get some errands done. My van needs to me aligned but they can’t get me in until tomorrow so that will have to wait. Since I was already in Jackson, I called the bus and told them not to pick up Hunter, I would get him. When I got to the school the kids were in the PT room having fun. Ciara was up and walking around and doing different activities while Hunter was sitting on the floor with his books. I stayed for a little while but then it was time go get going. Hunter and I went to the store and then headed home. He ran around the house being silly until Ciara came home. She was grumpy so I gave her some pain meds and juice and sat her in her recliner. A few minutes later my sister and Mason came over for a bit. When they left we didn’t do much, just took it easy and waited for John to get home from work. When he finally got home I made Tacos for dinner and then my sister called and asked if I could pick up Mason and bring him to his dad’s house. So, at 7:45 john changed the flat tire on the old van and then went running while I put the kids in the car and drove up there to pick Mason up and brought him over to his dads, that was an hour long trip and I wasn’t happy about it. When I got back home I was about to get the kids out of the car when I noticed that Mason left his wallet in the car so I had to drive over there again to give it to him and then went back home. It is now 9:00 and I am going to eat dinner and try to find something on TV to watch before I have to put the kids to bed. CHECK OUT THE NEW PICTURES!
Duke is going to have their annual Radiothon on September 9-12. Last year Alyssa and I took Tommy to the Radiothon and we got to talk on the radio about Tommy, Ciara, & Hunter. A couple of weeks ago I received a letter from them asking me to come to the Radiothon but of course I can’t. Alyssa also got something in the mail from them and she called them and talked to a lady there. They remember Tommy and followed his journal, yeah! They are going to have Alyssa tape a new piece and then they are going to make a montage on Tommy. They are going to use the song “I Can Only Imagine” which is the song we used a Tommy’s funeral so that is exciting, especially since his 5th birthday will be that next week. Here is the website with the Radiothon information Duke Radiothon Website
Hugs To All, and ^^Angel^^ 
Below is a list of websites for MPS kids, just thought that I would pass them on to you. Next week I will post the websites for the rest of our transplant friends and angels.
SANFILIPPO (MPS-III) WEBSITES:
Andrew B.
Andrew J.
Annabelle
Begg Children
Cameron & Angel Douglas
Ciara, Hunter, & Angel Tommy
Harmen
Jacqueline
Jesse
Jillian
John & Jason
Julia G.
Lindsey
Luke
Zulieka
HUNTER (MPS-II) WEBSITES:
Andrew C.
BJ
Jack
Jordan
Josh & Jake
Kraig
Seth
Skyla
Will
HURLER (MPS-I) WEBSITES:
Aaron
Allison
Andrew H.
Ashley
Austin C.
Cade
Caleb
Cameron
Caterina
CJ
Daria
Elliott
Evline
Isabella
Jack
Jacob I.
Jacob & Sammie
Jaxon
Jeanna Marie
Jonathan
Julia
Kaitlin
Katilyn
Laney
Loren
Luke
Maddy
Matthew S.
Max F.
Molly B.
Nolan
Nathan
Oliver
Riley
Romie
Sean & Shayne Lynn
Sophie
Susannah
Sydnee
Tatiana
Taylor M.
Taylor
Tommy & Kaitlyn
Tony
Yasmine
Zach
MPS ANGLES:
Alexis - MPS-I
Bella- MPS-I
Brittney - MPS-I
Carter - MPS-I
Christpher - MPS-I
Hermes & Aristofanis - MPS-III
Kaitlynn - MPS-I
Kassidy - MPS-I
Kyle - MPS-III
Mattie Rose - MPS-I
Max - MPS-I
Niki - MPS-I
Reese - MPS-I
Tyler - MPS-I
Tuesday, August 17, 2004 11:25 PM CDT
SUNDAY PM: Sorry but I just don't feel like doing the journal tonight. I was looking at some pictures of Tommy and I came across the pictures of his 3rd transplant, when he was really sick and I just am not in the mood right now. I promise I will do it in the morning.
SUNDAY AM: I am so sorry I haven't updated. I tried last night but I couldn't get on to Caringbridge. I will update tonight and thank you for checking in!
MONDAY’S JOURNAL:
My alarm didn’t go off this morning so I missed the school bus. I got the kids up and dressed and then drove them to school. When we got there Hunter was so happy! He started squaking at the teacher and she played with him and he had a grand ole time. I wheeled Ciara up to the table with the other kids and she joined right in. One of the aides took Hunter and sat him in a chair. There was a vibrating foot massager under the chair that they put his feet on and then put a weighted “thing” on his lap and then massaged him all over, he really enjoyed that. I asked if I could be next! I didn’t send Hunter to school in his wheelchair today because the teacher and I decided that if he hated it that much, he didn’t need to be in it. Hunter likes the chair that the school has so it isn’t a big deal. I went home and had breakfast. John came home a few minutes later, long enough to eat and then he went back to work. I went to the post office which is just down the street and then went back home. That was about all I did until Hunter came home around 12:30. The bus driver complained because Hunter wasn’t in his wheelchair today, like it is any of her business. We went inside and Hunter had a snack and then we waited for Ciara to come home. When her bus got here I put her in the car with Hunter and then picked Mason up from school. I stopped to get him a snack and then dropped him off at his house. The kids and I went back home and relaxed. We didn’t do much for the rest of the evening. I called Carie at Duke to see how Jordan was doing. He is in room 5304 and he is doing better. Tomorrow they are going to start weining him off of the Bi-Pap machine so that is good news. After dinner the kids went to bed around 11:00 and I wasn’t far behind them.
TUESDAY’S JOURNAL:
I actually woke up at 5:30 this morning so I got the kids ready for school and then made their lunches before the bus came. Today is the first day that Hunter will be in his wheelchair on the bus and at school so I hope it goes well. After the bus left I had some breakfast and then watched a little TV. I can’t go anywhere because my van isn’t driving right since the accident and I don’t want to cause any more damage by driving it so I am stuck at home. I did a little cleaning and talked to Michelle about Jillian’s day at clinic. Stop by and visit Jilly’s journal and see how she is doing Jillian's Journal . Hunter came home around 12:30 and he was sleeping when I went out to the bus. I brought him in the house but left him in his chair so that he could stay asleep. He slept for about 20 minutes and then he was up so I turned him loose. He had a snack and goofed around. Ciara came home at 2:45 and I was surprised she was awake when I went out to the school bus. I brought her in and gave her some juice and she roamed around the living room. Around 3:00 my sister came over when she picked Mason up from school. We had a bite to eat and then she went home. My TV went haywire but about 10 minutes later it came back on so I don’t know what the problem was. The kids and I just lazed about since we can’t go anywhere. Ciara took a little nap and Hunter spent most of the time in the bedroom jumping on the bed and watching TV. John is doing an overnight haul so he isn’t home tonight. John, Alyssa, Bryant and I chatted on-line for a little bit but then they guys had other things to do so they left. I made dinner for the kids and they ate everything, then Hunter went back into the bedroom and continued his jumping while Ciara puttered around the living room. I gave the kids a bath and then all of a sudden Ciara went goofy. For the past couple of weeks or so she has been grumpy and crying a lot but all of a sudden she jumped off the couch and started hopping and laughing all of the house, just like the old Ciara. It is now 10:40 and she is still happy and silly. I hope she stays this way! CHECK OUT THE NEW PICTURES!
Here is the latest email with funeral arrangements for Daniel:
The funeral will be on Wed, August 18 at 10:00 am, at Arrow Heights Baptist Church in Broken Arrow (101st and Elm Pl). Visitation will be on Tuesday, August 17 from 5 to 9 pm at Hayhurst Funeral Home in Broken Arrow (On Elm Pl between 81st and 91st).
Arrow Heights Baptist Church
3201 S Elm Place
Broken Arrow, OK.
(918) 455-5020
HAYHURST FUNERAL HOME
1660 South Elm Place
Broken Arrow, Oklahoma 74012
918-258-9623
Thanks for all your prayers. Daniel will be greatly missed.
Theresa
Some of you have asked for their mailing address so here you go:
Theresa and Richard Morris
9101 Highland Dr.
Broken Arrow, OK 74014
Alyssa’s dad was diagnosed with cancer last week. We are asking you to please buy a Live Strong bracelet to support her father and all of those people who are fighting cancer. You can get a bracelet here http://www.livestrong.org/livestrong/portal/ep/home.do or they are selling them on Ebay too.
Hugs To All, and ^^Angel^^ 
Sunday, August 15, 2004 1:04 AM CDT
Here is the latest email with funeral arrangements for Daniel:
The funeral will be on Wed, August 18 at 10:00 am, at Arrow Heights Baptist Church in Broken Arrow (101st and Elm Pl). Visitation will be on Tuesday, August 17 from 5 to 9 pm at Hayhurst Funeral Home in Broken Arrow (On Elm Pl between 81st and 91st).
Arrow Heights Baptist Church
3201 S Elm Place
Broken Arrow, OK.
(918) 455-5020
HAYHURST FUNERAL HOME
1660 South Elm Place
Broken Arrow, Oklahoma 74012
918-258-9623
Thanks for all your prayers. Daniel will be greatly missed.
Theresa
FRIDAY’S JOURNAL:
Hunter didn’t go to bed until 4:30 this morning so I didn’t send him to school today because nobody would enjoy a grumpy Hunter. After he woke up and had breakfast, we went to Lodi to pick up John’s paycheck. When we got back home my mom asked if I could go to the store with her so we did. After that Hunter and I went home to wait for Ciara’s bus to bring her home. He ran around and played and then Ciara came home around 2:45. She had a good day at school and was a little sleepy, it was also very hot today so she looked a little wilted. I brought her inside, got her some cold juice and put her on the couch and she was happy. That was about all we did for the rest of the afternoon. John didn’t get home from work until 7:30 so we had dinner and didn’t really do much to speak of. Ciara took a little nap but then went back to sleep around 11:30 or so. Hunter doesn’t look like he is going to sleep any time soon.
SATURDAY’S JOURNAL:
I slept in until almost 9:00 this morning and it was wonderful. When John woke up I made him breakfast in bed and we watched the news. When the kids got up I fed them and then John went out to the fire department. Around 2:00 we took our van in to get the oil changed at Wal-Mart and while we waited we did a little shopping. When we got back out to the car I got a phone call from my sister, she said that she is taking my mom to the emergency room because she was having problems again with her Parkinson’s. We drove to the hospital but the nurses wouldn’t let me see her. I went back out to the car and we drove to John’s parent’s house for a few minutes. When we left there we went back to the hospital to see my mom. She was still twitching a lot and the nurse said that they were still waiting for her lab results. I gave them my phone number and I went home. Just as we were walking in the door the phone rang and the hospital said that my mom was ready to go home. I couldn’t find my sister anywhere so I got in the car and drove to the ER. On the way to my mom’s house we stopped at KFC so she could get something to eat and then headed to her house. I pulled up to the four-way stop sign and waited my turn to go. We were almost thru the intersection when I got hit all down the driver’s side of my van. Nobody was hurt but that is all I am going to say because we may need to sue. I called my sister and she came to pick up my mom and then I drove home. When I got home John went out with his cousin and Alyssa and I chatted for a while. The kids had dinner and they both went to bed early, yeah!
SUNDAY’S JOURNAL:
John went to work this morning so the kids and I stayed home because I didn’t want to drive the van. We spent the morning watching videos and Alyssa and I chatted for a while. Ciara has pooped a lot the past couple of days and hasn’t been as fussy so I am happy about that. When John came home this afternoon Hunter decided he was going to take a nap, Hunter never naps, so I was a little surprised. While the kids were both napping I gave the dog a bath and then we played a game. Around 5:00 or so we took the kids out to dinner and they were very happy. Ciara ate a lot and Hunter was in heaven. We had Mexican and that is his favorite. After dinner I ran into the store to get the kids some things for their lunches this weeks and then we went home. That is about all that we did today, nothing very exciting to talk about. It is now 11:00 and Ciara just fell asleep but Hunter is jumping on the bed, watching cartoons.
When I woke up this morning I received an email from my friend Theresa this morning. Her son Daniel passed away yesterday. Daniel had Sanfilippo and he was 17 years old. He had a bone marrow transplant 14 years ago and was doing fantastic. We met Daniel and Theresa when we were fighting our insurance company to get Tommy to Duke for the CBT. We flew them out to California for our press conference at Kaiser. After the conference we took them to San Francisco and spent the day at Fisherman's Wharf. We all had a great day and I am grateful to them for helping us and I cherish the precious memories I have of Daniel. Because of the many seizures he had as a baby, Daniel couldn't talk but other then that, he was a "normal" kid who loved to play video games and he loved people. We will miss Daniel greatly. If you would like Theresa's email address to tell her you are thinking of them, just email me and I will give it to you. Please look at the new photo I put up of Daniel. Here are two articles about Daniel BMT For Sanfilippo Syndrome and Stockton Record Article
Below is the latest email that I received from Theresa this evening:
Dear Friends and Family,
Yesterday, 8/14/04, our son Daniel died in an accidental drowning. We are shocked by this and cannot call everyone we know. I hope you don't mind getting this email. Daniel was 17 years old, and as most of you know, he was a miracle. He had survived serious illness, genetic disease and a bone marrow transplant in 1989, amongst other challenges of disability. He was a loving boy and enjoyed every aspect of life. I don't know when services will be, but Wednesday is probably the day, here in Broken Arrow at our church, Arrow Heights. Daniel's dad is traveling back now and Matthew is preparing to travel from NJ where he is stationed with the Air Force. My husband, Richard has been an immense help to me, as well as my mom. Several friends here are making sure we are being supported with prayers.
In lieu of flowers, we are requesting donations to the National MPS Society, with a specification for the Research Fund; or the Broken Arrow Challenger, which is a sports league for developmentally challenged kids like Daniel. Checks may be made out to BA Challenger League. I can add their address later or you could just send us the checks and I will forward all of them to the proper place.
Right now, I know Daniel is in Heaven, now with a perfect body and he is probably talking up a storm, saying all the things he was unable to say during his life. He has no disability now!!! Praise the Lord.
Please pray for traveling safety for those that are traveling. Pray for the reaction of Daniel's dad and his brother. So far, they are struggling with the news. I am a little more at peace today, but it's difficult. Please pray for all of us. This is going to be a tough week.
Thank you for your prayers. Thank you for your caring and love.
God Bless,
Theresa Alyssa’s dad was diagnosed with cancer last week. We are asking you to please buy a Live Strong bracelet to support her father and all of those people who are fighting cancer. You can get a bracelet here Live Strong Bracelet or they are selling them on Ebay too.
Hugs To All, and ^^Angel^^ 
Thursday, August 12, 2004 11:01 PM CDT
It is again with a sad heart that I tell you this. I received an email from my friend Theresa this morning. Her son Daniel passed away yesterday. Daniel had Sanfilippo and he was 17 years old. He had a bone marrow transplant 14 years ago and was doing fantanstic. We met Daniel and Theresa when we were fighting our insurance company to get Tommy to Duke for the CBT. We flew them out to California for our press conference at Kaiser. After the conference we took them to San Francisco and spent the day at Fisherman's Wharf. We all had a great day and I am grateful to them for helping us and I cherish the precious memories I have of Daniel. Because of the many seizures he had as a baby, Daniel couldn't talk but other then that, he was a "normal" kid who loved to play video games and he loved people. We will miss Daniel greatly. When I update our journal this evening I will post a picture of Daniel for all of you to see. Many of you may know them and if you would like Theresa's email address to tell her you are thinking of them, just email me and I will give it to you. Below is the email that I received from Theresa this morning:
Friends of Daniel,
I write with a heavy heart. Daniel died in an accident this weekend, on Saturday afternoon. We were out at the lake and he apparently fell in the water from the dock. He was 17 years old. Since his dad will be flying home from Iraq, I'm not sure when services will be, possibly Wednesday. My birthday is on Friday, so it won't be that day. I'll let you know more later, when I can think more clearly. Thanks for your prayers. I thought it would be the Sanfilippo that got him, not an accident.
Theresa
WEDNESDAY’S JOURNAL:
When the kids got up this morning they had breakfast and then played around. Ciara seems to be doing a little better this morning so that is great. I called the school bus office to see what time they would be picking Ciara and Hunter up in the morning so the bus will be here at 7:15. They are going to a new school, it is the same school that I went to. Around noon the kids picked up Mason and then went to the store with my mom, she isn’t having a good day today. At one point I thought she was about to have another stroke so I made her go back home. I dropped Mason off at my sister’s and then the kids and I went home. I called the school and talked to their new teacher. I wanted to see what I needed to send with them but they already had a bunch of diapers and other things from their classroom last year so I don’t have to send anything but their lunch. It is 106 degrees today so we didn’t do much, just sat around and took it easy. Around 5:30 I put the kids in the car and we went for a little drive. Today is a bad “Tommy” day. Tomorrow he would be starting kindergarten, he should still be with us! It just isn’t fair. He loved going to school when we would visit Ciara &Hunter’s class. He would join in whatever they were doing and he even went out to recess with the kids. He would throw a fit every time it was time to go home. At least he got to go with them but he should be on that bus tomorrow. When I got back home, John and my sister were there. Mason is starting Jr. High tomorrow and they had a parent’s night tonight. The school had sent his dad a list of things that he would need for school but he didn’t say anything about it until tonight. That is when his dad handed my sister the list and said he needs everything on the list. So while he took Mason to the meeting, she went shopping for his supplies. She came back here after the store and I put his binders and things together for him and then she went to his house to drop it off for him. Around 7:00 John ran out of here for a fire call, he got home at 10:00. I had just finished giving the kids a bath and was cleaning their ears when he walked in so he helped me hold Hunter’s head. Hunter went into the bedroom and goofed around while Ciara relaxed in her chair/ I gave her some Boost Breeze and she drank the whole cup. I gave her some more and then she threw up everywhere. The two times before that when I had given her Chocolate Boost, she threw up so I wonder what the problem is. Needless to say, she isn’t going to get any Boost for a while. I gave her another bath, dressed her again, and put her down for bed at 11:30. I am going to try and get Hunter to bed because we have to get up early tomorrow for school.
THURSDAY’S JOURNAL:
Today is the first day of school! Ciara and Hunter woke up without fussing which surprised me a little, they are used to sleeping as long as they want. I got them up at 6:30 and dressed them. After I packed their lunch and their backpack, it was time to put them in their wheelchairs. The bus should be here in 5 minutes and the kids are in their chairs, drinking their juice and watching Dora The Explorer. Before the bus got here I took their lunch box and back pack outside and then as I was taking the kids out, the bus pulled up. They put Ciara on the bus first and then Hunter. Hunter is afraid of heights so he didn’t like the ride on the lift. I had told the bus office that both kids would be riding the bus in their wheelchairs this year but they didn’t tell the bus driver so she didn’t have enough tie downs for both kids. We had to take Hunter off the bus and put him up in the front seat. While the bus driver but him in his harness, I folded up his chair and put it in the back of the bus. They drove away and I went back inside and made some breakfast for myself. I completely forgot about their lunches and back pack, they didn’t get on the bus with the kids. John came home around 9:30 to get something to eat and then he went back to work. I went out to the post office and then drove over to the school to see how things were going. They were having lunch when I got there but that is when I realized I forgot their lunches this morning. I ran out to the car to get it and brought it back inside. Ciara had already eaten and was laying down but Hunter ate his fruit. The teacher said that Hunter ran for an hour when he got to school today, he really had a great time. Ciara was doing good too, I feel very good about this new school. He is supposed to go to school until 2:00 but they still haven’t straightened things out yet so he will be coming home at noon today and tomorrow. Since I was already there I took him home with me. We stopped at the grocery store on the way home, he did a great job, he didn’t run away once. When we got home he spent the next two hours running around and being silly. Ciara’s bus didn’t bring her home until 3:30, she got out of school at 2:00. Hopefully once the new year starts to calm down, they will bring her home earlier. She was a little fussy because she didn’t get her pain meds on time since the bus was late. I put her on the couch with some juice and she was happier. I chatted on the internet with Alyssa for a bit and then around 5:30 I had to go to Wal-Mart to get Ciara some medicine and then we went back home. We had dinner around 7:00 and then waited for John to get home from work. He came home around 7:45 and then he went running. The kids have been taking it easy this evening, I think they are exhausted from school. It is 9:00 and I think they will be asleep soon. CHECK OUT THE NEW PICTURES!
Hugs To All, and ^^Angel^^ 
Tuesday, August 10, 2004 1:13 AM CDT
MONDAY’S JOURNAL:
Hunter went to bed without fussing last night, but he woke up at 4:30 crying. I turned on the cartoons and he happily bounced around the bed, I went back to sleep. Ciara woke up at 8:30 crying, her right leg wouldn’t straighten out again. I put her on the couch, straightened her legs out, gave her a juice cup and she watched cartoons for a little bit. Tomorrow we have our first appointment with the orthopedist for both kids so it will be interesting to see what he says. When she started fussing again, I got her up so she could walk around while I got her something to eat. She is happy right now so I am hoping she has a good day today. It is 11:00 and Hunter is still sleeping. I cleaned the house and then I decided to write. I am writing our life story, maybe when I am finished I can have it published or made into a movie or something, who knows. Well, Hunter woke up at 11:30 and when I went in there to see why he was so quiet, I wasn’t happy with what I found. He was sitting in bed watching cartoons with poop all over himself and the bed. Wouldn’t you know it would be the morning when I only had 5 wipes left in the box! I tossed him in the bath tub, cleaned the mattress and then got his out and dressed. That is when I saw that the dog threw up on the carpet. So I had to drag in the carpet cleaner and you can’t just clean one spot, I had to clean the whole carpet. Since I had the cleaner out, I cleaned Ciara’s recliner too. Not the morning I had planned. Around 1:30 I went out to the post office and the grocery store. I stopped to pick up some Chinese food for my mom and my sister and then the kids and I went back home. At 1:30 this afternoon it was already 97 degrees outside! Ciara has been fussing all day, her right leg is still bothering her. I wish there was something I could do for her. Hunter spent the afternoon running from room to room. He fell 4 times today but I didn’t see anything that he could have tripped on. He would be running, running, running, and then all of a sudden I didn’t see him anymore and then I heard “splat.” He would just get up and continue running, like nothing happened. I forgot to get ice when I was at the store so I went out to get it and then when I came home John went running. I put Ciara in her feeding chair and she had some peanut butter Ritz crackers. Hunter sat at the table and ate some fruit and chattered to somebody, not sure who he was talking to. Ciara screamed like she was really in pain so I gave her an extra dose of her pain meds and some Motrin. One of the Motrin got stuck in her throat which really upset her but she was breathing OK. John held her on the couch and then she started coughing and up popped the Motrin. Before I could stick my finger in her mouth to get it, she chewed it up and swallowed it. She sat with John and drank some juice and calmed down. When I picked her up she let out two HUGE burps and went to sleep.
TUESDAY’S JOURNAL:
I had to get up and going early this morning because we had appointments with the orthopedist today. I made a quick trip to Jackson and as I was heading out to Sacramento I got stopped by the CHP. We bought our van in North Carolina and lost the title in the move back to California. We paid all of the fees at the DMV here but can’t get the new license plates until we get the title from North Carolina which I sent off for weeks ago. Since I didn’t have a front license plate, he stopped me and bugged me for a while. Eventually he let me go without a ticket but that is not the way to start the day. Now I am directionally challenged meaning I can’t tell north from south and I always get lost. I had never been to this Kaiser so I was stunned when I got there, EARLY, and got a parking spot right in front, that never happens. Hunter’s appointment was at 11:45 and Ciara’s was at 4:15 so when we got there at 11:40, before we ever saw the nurse or doctor, they sent us to x-ray for Ciara’s hips. We didn’t have to wait very long at all before they took Ciara into the x-ray room. They took the pictures and then sent us back to the doctor’s office with the films. We got there at 12:30 and of course they were at lunch from 12:30-1:30. I took the kids downstairs to the cafeteria and they ate some watermelon and chips. We headed back up to the office to wait, Ciara was sleeping and Hunter was in a silly mood. After chasing Hunter around the office several times, they brought us back to the room and the doctor came in. He had never had a Sanfilippo patient before but had many Hurler and Hunter patients and he knew a lot about MPS. I really like him and was impressed, that doesn’t happen often with doctors. He said that Ciara does have Coxa Vera which is a deformity in her hips, mostly her right hip. He said that he has seen many cases worse then Ciara and it shouldn’t be causing her pain. He wants to see her every 9 months for x-rays to see how her hips are progressing but he doesn’t want to do anything surgical for her right now, I agreed. He looked at Hunter and said that his foot turning in is normal for MPS, I already knew that, and that he didn’t see a need to do anything for him either. He doesn’t need to see Hunter again unless something new comes up so that was good. When I put the kids in the car we headed home it was only 3:30 and Ciara’s appointment was supposed to be at 4:15 so we got out of there very early, yeah! John got home right before we did so he helped me get the kids in the house. Around 6:00 I made dinner and then John went to his weekly fire department meeting. Ciara took a little nap while Hunter ran around being goofy. Ciara was asleep by 9:30 and he didn’t really fuss too much today so that is a big improvement over the past few days. Tomorrow I have to buy Hunter some new shoes and school supplies for the kids since school starts on Thursday. CHECK OUT THE NEW PICTURES!
Our little buddy Jordan is in the PICU at Duke with an infection. Please pray for him and visit his journal to see how he is doing: Jordan's Journal 
Jillian's 6th birthday is Thursday so stop by her journal and wish her a happy day! Jillian's Journal
Alyssa working for a furniture company and she just finished their new website which is Carolina Furniture Expo They named a children's bedroom group after Tommy and you can see it here Thomas Bedroom Group Stop by and check it out!
I wanted to pass on the journal address for another little Sanfilippo girl who is fighting her insurance so that she can go to Duke for the transplant. Her name is Zulieka and she is 2 years old, you can visit her journal by clicking here: Zulieka's Journal
MISSING AN ANGEL
Life goes on, but I miss you still-
& I think of you each day.
There's nothing that I wouldn't do
just to have you here to stay.
The essence of you lingers,
like the many heartfelt smiles...
The things I most remember
will be with me all the while.
You were here for just a moment,
but our lives were so entwined...
my soul was traveling with you,
as you left this world behind.
I'll guard your precious memory
inside my heart you'll stay…
for a moment I had everything;
I had you, along life's way
Hugs To All, and ^^Angel^^ 
Sunday, August 8, 2004 11:17 PM CDT
KAITY UPDATE: It is with a very sad hear that I tell you this. Our friend Kaity became an angel at 4:47 today. Please continue to pray for Kaity's family.
I mentioned our friend Kaity down below in the journal. Today she has taken another step closed to getting her Angel wings. She has started a type of breathing called "Chain Stoking". They told her that this type of breathing usually starts within about 24 hours of her angel wings. Please pray that Kaity stays peaceful and pain free and pray for her family as they are going thru this difficult time.
FRIDAY’S JOURNAL:
After the kids woke up we had breakfast and watched a little TV. I got them dressed and then we headed out to Lodi to pick up John’s paycheck. When we got back home I picked up Mason and we went to Wal-Mart so that he could pick out the piñata for this birthday party on Sunday. After that he wanted a burrito from Taco Bell because the roof of his mouth was raw, he just got his retainer taken out at the dentist yesterday and he lost a tooth so he wanted something soft. I dropped him off at my sister’s and then took the kids to the grocery store and then went home. Ciara was a little cold so I put some sweats on her and she was happy again. She roamed around the living room while Hunter ran back and forth from the dining room to the couch. I had just eaten some dip and then I felt sick so thank God Ciara fell asleep and Hunter was keeping himself busy. Just as I started to feel a little better, John came home, that was around 6:00. We watched the news, had dinner and relaxed for the rest of the evening.
SATURDAY’S JOURNAL:
We all got up around 8:00 this morning but Hunter stayed in the bedroom and watched his cartoons while Ciara roamed around the living room with her juice cup. John ran out on a fire department call, there was a wild land fire by Lake Camanche. I chatted on-line with Alyssa for a little bit, fed the kids’ their breakfast and then I popped in a “Friends” DVD. When John came home around 11:00 I made him some breakfast and then gave the kids a bath. We didn’t do much all afternoon, Ciara took a nap and then when she woke up I gave her a hair cut, boy did she need one. I gave them something to eat, cleaned them up and got them dressed. John’s cousin called and needed John’s help so he ran out for a little bit and then when he came home we took the kids out for a little while. When we got home we watched some TV and tried to get the kids to go to sleep, that didn’t work very well.
SUNDAY’S JOURNAL:
Well, Hunter cried and fussed until 4:00 this morning so that is when John and I went to sleep. Ciara woke up at 6:30 crying and crying so we didn’t get much sleep last night. For the past 3 mornings she has had trouble with her right leg. It doesn’t want to straighten out and it takes a while before she can bear weight on it. John gave her her pain meds but it didn’t seem to help so I gave her a little bit more and then she fell asleep. While the kids were sleeping I ran to Wal-Mart to get Mason’s birthday present and then to the grocery store. When I got home they were still sleeping so that was good. Ciara woke up at 10:45 and seemed to be in a better mood. She and Hunter watched cartoons in the living room, it is getting hot in the house right now. It is supposed to be over 100 degrees today, yuck! John had to go out on a couple calls for the fire department. Around 2:30 the kids and I went to Mason’s birthday party, of course as soon as we got there Ciara fell asleep. My sister took Hunter out in the backyard with everybody else while Ciara and I stayed inside with my mom. I left with Ciara about an hour later, she was sleepy so I let her relax at home, Hunter stayed at the party with my sister. She brought him back home about an hour later, Ciara was still sleeping and John was still out with the fire department. John finally got home around 9:00 tonight so I made him some dinner and we watched some TV with the kids. I have some pictures but I will post them next time I update the journal, I am too tired tonight.
Please say a prayer for our little friend Kaity and her family. She is 13 years old and has Hurler's. Kaity isn't doing very well and I am afraid that she will not be with us much longer. Please pray that she is comfortable and not in any pain as she spends the night wrapped in her mother's loving arms. Kaity's Journal I have a friend in Germany who's daughter has Sanfilippo. Her website is in German but I thought that I would pass it on to those of you who are interested. her name in Nina and here is her website: Nina's Website I wanted to pass on the journal address for another little Sanfilippo girl who is fighting her insurance so that she can go to Duke for the transplant. Her name is Zulieka and she is 2 years old, you can visit her journal by clicking here: Zulieka's Journal
I also just updated Jillian’s journal so stop by and see how she is, don’t forget to sign in and let them know you were there Jillian's Journal
A CHILD LOANED
"I'll lend you for a little time
A child of Mine," He said,
"For you to love the while he lives,
And mourn for when he's dead.
It may be six or seven years
Or twenty-two or three,
But will you, till I call him back,
Take care of him for Me?
He'll bring his charms to gladden you,
And should his stay be brief,
You'll have his lovely memories
As solace for your grief."
"I cannot promise he will stay,
Since all from earth return.
But there are lessons taught down there
I want this child to learn.
I've looked this wide world over,
In my search for teachers true.
And from the throngs that crowd life's lanes,
I have selected you.
Now will you give him all your love,
Not think the labor vain,
Nor hate Me when I come to call
And take him back again?"
I fancied that I heard them say,
"Dear Lord, Thy will be done,
For all the joy Thy child shall bring,
The risk of grief we'll run.
We'll shelter him with tenderness,
We'll love him while we may,
And for the happiness we've known,
Forever grateful stay.
But should the angels call for him,
Much sooner than we planned,
We'll brave the bitter grief that comes,
And try to understand."
Hugs To All, and ^^Angel^^ 
Thursday, August 5, 2004 0:08 AM CDT
WEDNESDAY’S JOURNAL:
Not much going on today. We didn’t do much this morning, just hung around the house. Around noon we went out to check the mail. I pick up Mason at his dad’s and dropped him off at my sister’s and then we went back home. We had some lunch and then Ciara took a nap while Hunter roamed around the house. I was just finishing making dinner when John walked in the door, he looked exhausted. After everybody ate, we watched TV for a little bit. John went out on a couple calls for the fire department and he didn’t get back home until almost 10:00. Around 11:00 Ciara fell asleep and Hunter wasn’t too far behind her.
THURSDAY’S JOURNAL:
The kids and I slept in until 8:30 this morning so I was happy about that. We had some breakfast and then while I was checking my email, Hunter got into a box of doughnuts and he and Ciara ate the whole box. Around 1:30 I put the kids in the car and we went to pick up Mason, today is his 12th birthday. When he came out of the house he was wearing a black top hat, he is such a goof. I dropped him off at my sister’s house and then ran to the store to buy his present. I met my sister, Mason, and his friend at the bowling alley, Mason was still wearing his top hat. We bowled a couple games, Ciara and Hunter sat very nicely and ate their French fries and grape juice. When it was time to go, Mason went to his dentist appointment and the kids and I went home. John was already off work so we watched the news and then went out so John could run at the track. When we got back home we had dinner and by 10:00 Ciara was asleep. Of course Hunter wasn’t, he was jumping on the bed and yelling at the TV. It was one year ago today that Tommy had his spleen taken out.
MAKE-A-WISH TRIP: Make-A-Wish called and we finally have everything straightened out. We will be going to Hershey PA on September 17-21. Tommy’s 5th birthday would have been September 18 so it will be a great way to celebrate Hunter’s Wish and Tommy’s birthday. John’s birthday is September 22 so we will just tie it in all together and have fun. We are going to meet up with Michelle and Jillian while we are there so I will make sure and take lots of pictures.
Hugs To All, and ^^Angel^^ 
Tuesday, August 3, 2004 11:54 AM CDT
SUNDAY'S JOURNAL:
Everybody slept in this morning, yeah! We had breakfast, did some laundry, and played a little Nintendo. The kids ran around the house and had a good time. Around 2:00 we headed up to John's parent's house, his sister's were coming over for a visit. As soon as we got there Ciara fell asleep on the couch and Hunter ran around, mostly running away from the dogs. After a couple of hours I woke Ciara up and we put the kids in their wheelchairs and they had a snack. Everybody chatted for a while and then it was time for dinner. Ciara ate well, but Hunter surprised me, he ate 3 hot dogs and a lot of watermelon. After dinner the dogs cleaned up Ciara's hot dog mess and then it was time to go home. Ciara was getting fussy and we didn't bring her pain meds with. When we got home it was almost 8:00 so the kids watched a few cartoons and then it was time for bed.
MONDAY'S JOURNAL:
We really didn't do much today. My sister came over around 9:00 this morning so that I could go to the bank and the store without the kids. When she left I made the kids' breakfast and then it was time for their bath. We spent the afternoon in the house, cleaning and cooking. John came home around 3:30, just as I was finishing cooking so he ate the chili burgers. Ciara was napping so I fed Hunter his dinner and she ate her burger when she woke up. That was about it for the evening, it was a boring day.
TUESDAY'S JOURNAL:
When the kids woke up this morning they had breakfast, French toast sticks and hash browns, they happily ate and watched cartoons. We didn't do much for the rest of the morning, just took it easy. My mom called and asked if I wanted to go to the movies with her. John called and said that he wouldn't be home tonight so it will just be the kids and I for the rest of the day. Around 3:00 I dropped Hunter off at my sister's, picked up my mom and went to see The Bourne Supremacy. Ciara was very good thru the whole movie, she snacked and drank her juice and didn't make a peep. My sister called me several times to tell me that Hunter had pooped all down himself and all over her living room, I don't know what she expected me to do about it. Finally after the 3rd phone call I put Ciara in the car and went to pick him up, leaving my mom at the theater to watch the rest of the movie. My sister had just given Hunter a bath when I got there so I put him in the car and went back to get my mom. I dropped her off at home and then went back to our house. I changed Ciara's clothes, put new clothes on Hunter, and then around 6:00 I took the kids to the fire department. They were having a get together before the meeting and they invited the kids and I to have pizza with them. We left just as the meeting was starting and went to the store to get some wipeys, can't be without those! When we got home the kids had dinner and Ciara walked around the living room while Hunter watched his cartoons and ran from room to room. Ciara was getting fussy so I laid her down around 10:30 and she went right to sleep. It is after midnight and Hunter is still going strong! Mason's birthday is Thursday so I have to get that together tomorrow, aahhh! CHECK OUT THE NEW PICTURES!
Hugs To All, and ^^Angel^^
Sunday, August 1, 2004 1:50 AM CDT
TUESDAY: I WILL UPDATE THE JOURNAL IN THE MORNING, I AM TOO TIRED TONIGHT.
FRIDAY’S JOURNAL:
After everybody was up and moving, we had breakfast and watched cartoons. Around 11:00 I put the kids in the car and drove to Lodi to pick up John’s paycheck and then we headed home. I went to the post office and then my mom called me and wanted me to go to the grocery store with her so we met her there. I didn’t plan on this and I left both wheelchairs at home so I put the kids in the big shipping cart that has two seats for them and they didn’t like that too much. Hunter kept pushing Ciara, Ciara kept crying. We almost made it thru the produce but Hunter decided to bite Ciara’s arm and she really started screaming. I yelled at him and then he started screaming, AAAHHHHH!!! I took them over to the deli and got them a bag of potato wedges and then everybody was happy again and we finished out shopping and went home. John came home from work and sat on the couch next to Hunter. It was so cute, Hunter leaned over to John and put his head on John’s arm and went to sleep. I can’t tell you how long it has been since Hunter has taken a nap, I was surprised. We didn’t go out for the rest of the day/evening. I put Ciara in her new feeding chair and gave her some dinner which she inhaled but then she got fussy. She was tooting so I assumed her tummy was bothering her so John held her, she pooped, and everything was fine again. Hunter spent the evening watching his cartoons on two different TVs, as usual. When Ciara finally fell asleep and Hunter was sitting in bed watching TV, John and I watched a movie and then it was time for bed.
SATURDAY’S JOURNAL:
I was surprised when I woke up and saw that it was 8:15, usually I am up before that. I got up and made breakfast for John and the kids. We talked about what to do today and we decided to take the kids to Big Trees State Park. We went there a couple months ago, but today we are going to the South Grove. We are going to use Hunter’s new wheelchair for the first time so we will see how it goes. We put the kids in their chairs and headed down the trail. We didn’t get very far before the trail turned into a very narrow path, narrower then the wheelchairs, and the grass was 3 feet tall with large rocks so it was very hard to get the wheelchairs thru it. We finally made it to the creek so I took Hunter out of his chair and brought him down to the water. He is afraid of water but he did alright. Other people came down to where we were so I brought Hunter back up to where John and Ciara were waiting for us. We started out on the trail again but it got even rockier and we were afraid that we might tip the kids over or something so we turned around and headed back. When we got back to the creek I took Ciara down to the water but she didn’t really care too much. I took some pictures and then we went back up to the bridge. We walked back to the car and drove over to the North Grove to stop by the visitor’s center. We took a few more pictures and then we left the park. On the way home we stopped at Mark Twain’s Cabin, this cabin is where he wrote Huck Fin for Tom Sawyer, I can't remember. We walked around for a little bit, changed some diapers and then started out for home, making a quick stop at the store on the way. When we got home we did some laundry, played some Nintendo, had dinner and relaxed. I talked to Annabelle’s grandma for a while tonight and she is doing wonderful! Annebelle’s website is Annabelle's Journal CHECK OUT THE NEW PICTURES!
TRIP TO DUKE: I just wanted to let you know what was going on with our trip to Duke. We have been trying for 4 months to get Kaiser, who agreed, to do the testing here before we go to Duke but we are having problems with that now. Last week I even talked to Dr. Lipson on the phone and explained everything to him and he seemed to agree with me and said that he would talk to Dr. K and see what tests she wanted and order them. I just can't believe that in April Kaiser agreed to do the testing but now they refuse. Are they really that stupid, don't they remember us? I guess it is time for another wake up call to Kaiser!
Hugs To All, and ^^Angel^^
Thursday, July 29, 2004 8:21 PM CDT
I just updated Jillian's journal so stop by and see how she is doing!
Jillian's Journal
TUESDAY’S JOURNAL:
John had to leave for work at 3:00 this morning, I didn’t even hear him leave. I woke up around 8:00 and when I checked on Ciara, she was sleeping in a weird position so I checked her to see if she was breathing but I couldn’t tell so I shook her several times before I saw movement, I hate when she does that to me. I woke her up around 9:30 but Hunter just wouldn’t wake up. I have to go to Sacramento to pick up Ciara’s prescriptions and my mom is going with me so I don’t have to drag the kids into the pharmacy. I picked my mom up and we headed out to Kaiser. I didn’t know that our co-pay had been increased from $15 to $40 per prescription so that was a surprise. On the way home we got the kids something to eat and headed back home. I picked Mason up on the way and dropped him and my mom off at her house. We finally got the air conditioner fixed a couple of days ago and it has been much better, Ciara isn’t fussing anymore. We really didn’t do much for the rest of the evening. We had dinner, John went on a call for the fire dept and then it was time for bed.
WEDNESDAY’S JOURNAL:
After the kids woke up we had our breakfast and watched cartoons. Around 1:00 I had to take my mom to her doctor’s appointment in Sacramento. I dropped her off at the office and then the kids and I went to the drive thru to get something to eat. We headed back to the parking deck and waited for my mom to come out. When she was finished we went back home, John was already home from work went we got there. He went out to mow the lawn while the kids ran around the house watching their TV. While John was outside he got a call for the fire department so he left. Later on we all had dinner, watched TV, and went to bed.
THURSDAY’S JOURNAL:
When I got up this morning I cleaned the house while the kids still slept. Apria Healthcare came over with their new equipment and I was very excited. Hunter got his new wheelchair and Tumble Form chair while Ciara got her new feeding chair, wheelchair ramp for the front door, and gel & air cushions for her wheelchair. Everything is great except the Tumble Form chair is too small so they will have to order a bigger size. As soon as the man left I put Ciara in her feeding chair and gave her some yogurt and crackers and it was wonderful! John got home from work around 11:30 but had to go out on a call for the fire department. Around 1:00 I put the kids in the car, picked up Mason, and met my mom at the store. When we finished I dropped Mason off at my sister’s house and went back home. When I got there John said that he had to go back to the fire department to cover the county while the CDF fire trucks were out fighting a big fire. Ciara took a nap while Hunter ran from TV to TV yelling and laughing at his cartoons. Later in the evening we had dinner and relaxed before bedtime.
Hunter’s wheelchair – Convaid Scout Wheelchair
Hunter’s Tumble Form Chair – Tumble Form Seat
Ciara’s Feeding Chair - Tiger High-Low Seat
A couple of days ago I had mention Rory who was fighting Kaiser for the only drug that was saving his life, that was before they stopped giving it to him. Rory passed away yesterday morning at Kaiser hospital and his death could have been prevented if Kaiser had his best interest in mind, not saving money. Rory’s website is Rory's Website CHECK OUT THE NEW PICTURES!
Hugs To All, and ^^Angel^^
Sunday, July 2, 2004 2:16 PM CDT
WEDNESDAY UPDATE: Hunter is FINALLY getting is wheelchair tomorrow and Ciara is getting her feeding vchair and Tumble Form chair so I will update tomorrow after we get them.
SATURDAY’S JOURNAL:
We all slept in this morning and it was wonderful. Ciara and I woke up around 9:00 so I got her some juice and she was happy, watching TV in her recliner. Around 11:00 John went out skeet shooting with his friends and the kids and I ran out for a few minutes. When we got home Ciara took a nap for a couple hours while Hunter ran from TV to TV and had a snack or two. When John came home he had just finished eating his salad when his pager went off and he had to run off to fight a wild land fire. It was very hot in the house again so eventually I put the kids in the car and went out. I got them something to eat at Burger King and then pick up a few things that my mom needed and then we went home. John was home when we got there so we watched a little TV. Around 7:00 we decided to go to Sacramento to get some dinner so we loaded up the kids and we were off. We ate at the Spaghetti Factory and the kids gobbled up everything and even shared a huge piece of mud pie. After dinner it was 9:30 so we went back home. The kids roamed around the house while John and I played some Nintendo. John’s cousin came over for a little bit so Ciara fell asleep in the bed while Hunter jumped from couch to couch, it is 1:15 am and he is still jumping.
SUNDAY’S JOURNAL:
We didn’t do much of anything this morning, just the usual. We had breakfast, did some laundry and the kids ran around the house. In the afternoon we decided to go fishing up at Bear River so we put the kids in the car and headed out. We stopped to get them some juice and snacks for the trip and then we went up to John’s parent’s house. They have been gone on a trip for 3 months and they just got home this afternoon so we stopped on our way up to the lake. Ciara was still fussy but I don’t know why. When we got back in the car I gave her something to eat but she still fussed a little. When we got to the lake, John’s cousin was already there so we took Ciara out of the car and put her in her wheelchair and sat her in the shade by the lake. When John took Hunter out of the car, Hunter wasn’t very happy about it and wanted to go back in the car. He sat in there with the air conditioning and a magazine and chattered away while Ciara napped in the shade and the rest of us fished. I don’t think there were any fish in that darned lake! My new fishing pole kept getting the line tangled in the reel and we couldn’t fix it so I just got mad and threw my pole in the lake. I got my other pole out of the car, put on a new lure and after two casts, the lure flew off the line and that was it. I told John I didn’t want to fish there anymore so when he cast his pole for the last time, his lure also flew off the line. We packed up the car and headed back home. We stopped at John’s parent’s again to pick up our dog, stopped at the grocery store, and then went home. About an hour later Ciara was sleeping and Hunter was close behind her.
YOU ARE MY SUNSHINE
Like any good mother, when Karen found out that another baby was on the way, she did what she could to
help her 3-year-old son, Michael, prepare for a new sibling. They found out that the new baby was going be a girl, and day after day, night after night, Michael sang to his sister in mommy's tummy. He was building bond of love with his little sister before he even met her. The pregnancy progressed normally for Karen, an active member of the Panther Creek United Methodist Church in Morristown, Tennessee.
In time, the labor pains came. Soon it was every five minutes, every three, every minute. But serious
complications arose during delivery and Karen found herself in hours of labor. Would a C-section be
required? Finally, after a long struggle, Michael's little sister was born. But she was in
very serious condition. With a siren howling in the night, the ambulance rushed the infant to the
neonatal intensive care unit at St. Mary's Hospital, Knoxville, Tennessee. The days inched by. The
little girl got worse. The pediatrician had to tell the parents there is very little hope. Be prepared
for the worst. Karen and her husband contacted a local cemetery about a burial plot. They had fixed up a special room in their house for their new baby but now they found themselves having to plan for a funeral. Michael, however, kept begging his parents to let him see his sister. I want to sing to her, he kept saying. Week two in intensive care looked as if a funeral would come before the week was over. Michael kept nagging about singing to his sister, but kids are never allowed in Intensive Care. Karen decided to take Michael whether they liked it or not. If he didn't see his sister right then, he may never see her alive. She dressed him in an oversized scrub suit and marched him into ICU. I looked like a walking laundry basket.
The head nurse recognized him as a child and bellowed, "Get that kid out of here now. No children are
allowed." The mother rose up strong in Karen, and the usually mild-mannered lady glared steel-eyed
right into the head nurse's face, her lips a firm line. "He is not leaving until he sings to his sister" she stated. Then Karen towed Michael to his sister's bedside. He gazed at the tiny infant losing the battle to live. After a moment, he began to sing. In the pure-hearted voice of a 3-year-old, Michael sang: "You are my sunshine, my only sunshine, you make me happy when skies are gray." Instantly the baby girl seemed to respond. The pulse rate began to calm down and become steady. "Keep on singing, Michael," encouraged Karen with tears in her eyes. "You never know, dear, how much I love you, please don't take my sunshine away." As Michael sang to his sister, the baby's ragged, strained breathing became as smooth as a kitten's purr. "Keep on singing, sweetheart." "The other night, dear, as I lay sleeping, I dreamed I held you in my arms". Michael's little sister began to relax as rest, healing rest, seemed to sweep over her. "Keep on
singing, Michael." Tears had now conquered theface of the bossy head nurse. Karen glowed. "You are my
sunshine, my only sunshine. Please don't take my sunshine away..." The next day...the very next day...the little girl was well enough to go home. Woman's Day Magazine called it The Miracle of a Brother's Song. The medical staff just called it a miracle. Karen called it a miracle of God's love.
NEVER GIVE UP ON THE PEOPLE YOU LOVE.
LOVE IS SO INCREDIBLY POWERFUL.
Hugs To All, and ^^Angel^^
Friday, July 23, 2004 12:29 AM CDT
MONDAY’S JOURNAL:
John didn’t work today since he worked all weekend so everybody slept in this morning. After we had breakfast we discussed what to do for the day. We did have a few things to do so while we ran some errands we went thru the drive thru and had some lunch while we finished up with the errands. We went home and relaxed a little. It is getting hot here so we took it easy. The kids spent the day running around the house, watching cartoons, and just goofing around. In the evening we decided that it was way to hot to cook in the house so we went out for dinner. We went to the All-you-can-eat buffet at the casino and it was good. After dinner we went back home and played some Nintendo and that was about it for the evening. Ciara was a little fussy today but I don’t know why, maybe it is the heat that is bothering her.
TUESDAY’S JOURNAL:
It was still hot when I went to bed last night so I left the cooler on all night long so it was nice when I got up this morning. The only problem is that when I woke up, for some reason I only had one contact lens in, I don’t know what happened to the other one. Since it has been over a year since my last eye appointment, the doctor won’t give me another lens and I can’t find my glasses anywhere. After I fed the kids, I searched everywhere, there must be one more contact lens somewhere in the house. I finally found one in the afternoon so I could finally go out and get some things done. I put the kids in the car and drove to Lodi to pick up some papers at John’s work. After that I ran to the post office, got them a snack and then headed home. My mom called and asked if I could take her to the grocery store so around 5:00 we picked her up and went shopping. I didn’t take Ciara’s wheelchair out of the car, I wanted her to walk and she did great thru thru store. Hunter wasn’t too happy when I put him in the back of the cart, he thought that he needed to run around the store, I thought differently. When we were finished I dropped my mom of at her house and went back home. John is doing an overnight haul so it is just the kids and myself for the rest of the evening. Again it is over 100 degrees and Ciara is fussy again but she went to sleep around 11:00 and slept all night long.
WEDNESDAY’S JOURNAL:
I left the cooler on all night again, I just can’t stand the thought of another hot and miserable day! After the kids got up and had breakfast, it was already hot in the house. I put the kids in the car and went for a drive in the air conditioned van. I stopped to get them a box of potato wedges from KFC and they happily munched while I drove around. I was going to take them to the pool this afternoon but it was too hot to even think about sitting in the sun for an hour. After an hour or so of driving around we went back home. Ciara took a nap while Hunter ran around the house. I had some hamburger in the refrigerator that I had to use today or it would go bad so I made a huge pot of taco meatballs. Of course that heated up the house even more so I put the kids and the dog back in the car and we went for another drive. Smore was very happy to sit in the front seat with the cold air blowing on her furry little face. We drove around for about an hour and then headed home. It was around 7:00 when we got home so the kids relaxed, had some cold juice and watched cartoons.
THURSDAY’S JOURNAL:
I woke up early this morning so I went out to the living room and watched a little TV. It was already hot in the house so I didn’t feel like doing anything today. The kids woke up and had breakfast and watched their usual cartoons. The news said that it was supposed to be 103 degrees today, AAHHH!!! We just stayed in and tried to stay as cool as possible, I can’t wait for John to be home long enough to fix the air conditioner. We were going to go to the Fair today but it is so hot that I think we might wait until the evening to go. John came home around 2:00 or so and it was steaming in the house so again, we just sat around. I got the kids a snack and they watched their cartoons again. It amazes me that it is 103 degrees, it seems to be hotter in the house then outside, we are all miserable (including the dog) but Hunter still runs and runs all day long and it doesn’t bother him. I think he is a robot or something! Around 5:00 I ran to the grocery store and when I came back it was time for John to go load his truck for work. A few minutes after he left, my sister came over, she had just dropped Mason off at his dad’s house. John came home and said that there was a 2 hour wait to get the truck loaded so he will do it in the morning. My sister went home and we got the kids dressed and headed out. Again, it is too hot to cook so we went out to eat. My sister went with us so we picked her up and went to Denny’s. The kids ate like we hadn’t fed them in a week and Hunter chattered and squacked the while time we were there, he had a good time. After dinner we dropped my sister off at her house and went to the store to get new pads for the air conditioner. Of course they didn’t have the ones we needed so we went home. We decided not to go to the Fair today, it was too hot. Saturday they are having “Amador Idol” at the fair so we might go and watch all the idiots try to sing, that should be worth a few laughs. I guess we will have to deal with the heat again tomorrow, until John can get to the hardware store anyway. We spent the rest of the evening relaxing, playing games, and watching TV.
I would like to thank all of you for signing our guest book, it really means a lot to hear from you! A couple weeks ago I received an email from a woman who's husband has a very serious medical condition. They have Kaiser and Kaiser refuses to give him the only medication that was helping him get better. If he doesn't get that med soon, he will die and Kaiser doesn't seem to care. Please stop by and see how he is doing and call Kaiser and raise some heck! Rory's website
Hugs To All, and ^^Angel^^
Sunday, July 18, 2004 10:58 PM CDT
I WILL UPDATE THE JOURNAL TOMORROW (Thursday) NIGHT AFTER WE GET BACK FROM THE COUNTY FAIR.
SATURDAY’S JOURNAL:
After we had breakfast this morning it was bath time. John is gone overnight again so we spent the day at home. We met my sister for dinner and the kids ate like piggies. After that I ran into the store to pick up my mom’s prescriptions and some groceries for her and then dropped them off. When we got home we watched TV and Ciara snuggled on my lap, that is where she fell asleep. Hunter was up until midnight or so, boy is he a night owl!
SUNDAY’S JOURNAL:
I woke up at 7:00 this morning so I popped in a movie and tried to wake up. When Ciara woke up I gave her a cup of juice which she guzzled right down. She has had a mucousy cough lately so when she coughed up some “stuff”, everything else came up with it. I cleaned her up and she watched some TV and napped a little. Hunter had breakfast when he woke up and roamed from TV to TV all morning. I cleaned the house, did the dishes, and then watched another movie. That was about all we did all day. My sister came over around 4:00 but then she left. A couple hours later I put the kids in the car and went to the grocery store and then over to a friend’s house. Hunter didn’t care for it too much, there were too many big dogs and a swimming pool. Ciara liked it though, she dangled her legs in the water and really enjoyed herself. We left around 8:30 and headed home, Ciara was getting cranky and she needed her meds. We had dinner and spent the rest of the night watching TV.
ON A PERSONAL NOTE: I can’t even begin to tell you how it feels to lose your baby. It hurts so much and nothing makes the pain go away. Sure, I can get thru each day, but a big part of me is dead, it died with Tommy. Most things don’t matter to me anymore, only my family and soon Ciara and Hunter will be gone. I can’t tell you how much I want to have another child, but we can’t. People keep telling me how strong I am, but I am not. I just do what I have to do and take care of my kids as best I can. I am not a Saint, just a mother.
Hugs To All,
Alicia and ^^Angel^^ Tommy
Thursday, July 15, 2004 1:12 AM CDT
WEDNESDAY’S JOURNAL:
For some reason I woke up at 5:00 this morning, drat! Hunter woke up at 6:00 and was raring to go. We goofed around, had breakfast, and watched TV. When Ciara woke up she had breakfast too. Around noon I picked Mason up at his dads and dropped him off at my sister’s. I went to the county offices to pick up John’s birth certificate and then we went back home. John came home from work at 6:00 and the kids were sleeping so he stayed home with them while I went over to my dad’s house because today is his birthday. My sister and Mason met us there and we had cheesecake and pizza. I stayed there until 7:30 or so but then it was time to get home. I made dinner for the kids and fed them while they watched their cartoons. Not much else happened for the rest of the evening.
THURSDAY’S JOURNAL:
Hunter didn’t go to sleep until almost 4:00 this morning. He has been doing this for the past two weeks and I don’t know how much longer I can go with no sleep. I woke up around 9:00 this morning so I got dressed and ran out to the store to get some bacon. When I got home I made breakfast for John since he didn’t have to go to work today. Ciara woke up around 10:00 so I fed her and she was happy. John and I played a little Nintendo while Hunter still slept. We woke him up around 11:30 and got him something to eat. We got the kids dressed and then headed out to Sacramento. We had to go to the Veteran’s office to get some forms filled out for the kids’ SSI. After that we went to CompUSA to fight with them over my laptop. It is under warranty and they refused to fix it so John made them keep it and he is going to call the supervisor tomorrow. On the way home we stopped at Krispy Kreme to get the kids some doughnuts and then we went home. The kids watched their cartoons and roamed around the house. I played on the computer for a little while. For all of you who have kids with MPS, you should stop by www.mpsforum.com and check it out. It is a place for parents, family, and friends of MPS kids to chat, ask questions, etc. Around 9:00 they each had a doughnut but I don’t know who was happier, the kids or the dog who got to eat all the pieces that Ciara dropped. John went on a fire department call and then we just watched some TV and went to bed around 11:30.
Hugs To All,
Alicia and ^^Angel^^ Tommy 
Monday, July 12, 2004 0:43 AM CDT
SUNDAY’S JOURNAL:
Ciara slept all night without fussing once, yeah! Hunter woke up around 6:00 this morning and continued to jump all over my bed until 8:30. That is when I just couldn’t take it anymore and got up. He stayed in the bedroom and watched his cartoons while I went out to the living room. I popped in a movie and made some breakfast. Ciara woke up around 10:00 and just as I finished changing their diapers, John came home from work. We finished watching “Pirates Of The Caribbean” and then we played a little Mario Kart. I flipped thru the channel on the TV and “A Few Good Men” was on so we started to watch that. John’s scanner went off, there was a fire in Plymouth so he went to the fire station to fill the canteens and see if they would need Ione Fire to respond. He stayed there for about 45 minutes and then came home because nobody paged them yet. We started watching the movie again and then my sister and Mason came over. Mason was at camp last week so it was good to see him again. They wanted to know if I could go to the movies with them but just as they were asking me, John’s pager went off and he ran out the door to the fire. So, that meant I couldn’t go with them. They stayed with the kids while I ran to the store to get hamburger for dinner, John wants chili. When I got back home they headed out to the theater and I made the chili. Ciara fell asleep in the recliner around 2:30 and Hunter has spent the day running all over the house, going from TV to TV and snacking here and there. While Ciara was napping I gave her the pain meds so she wouldn’t wake up screaming. Hunter continued to dance around the house while watching Barney and Winnie The Pooh. I woke Ciara up at 6:00 and gave them something to eat. She walked around the living room for a while but kept nodding off so at 7:45 I put her in her recliner so she could sleep if she wanted to. John’s cousin, Don, came over so they sat outside and chatted while I talked to Alyssa on the phone, then Mason called me.
MONDAY’S JOURNAL:
John and I woke up at 8:00 this morning but he didn’t have to go to work until 11:30. When the kids woke up we had some breakfast and then I ran to the grocery store before he left for work, of course the store was out of what I needed, so I went home. When John left for work I got the kids dressed and headed out. I picked up my sister so that she could sit in the car with the kids while I had some papers notarized. I need a copy of my birth certificate for Hunter’s Make-A-Wish trip so that is what I was doing. When we left there we drove to Mason’s dad’s house to pick him up and then went back to Sutter Creek. We stopped at McDonalds and then I dropped Mason and my sister off at her house and I went back home. I got home around 2:00 and the kids watched some cartoons and ate. John came home at 3:30 and he relaxed for a while, then it was time to go to Sacramento. My laptop was broken so 2 months ago we took it in to get fixed but we haven’t heard from them so we are going to see what is going on. Since it was 4:30, that meant that we would hit rush hour traffic so we decided not to go today. Instead we decided to go to my dad and Gloria’s and go fishing. We didn’t catch anything but we had fun. We stayed and chatted for a little bit but it was getting late so we left. On the way home John went running and then it was home and dinner time, it was already 8:30. Hunter ate while sitting at his TV and I fed Ciara and she ate everything so I was very happy. It is now 11:00 and Ciara is getting tired but Hunter is jumping on the couch and chatting to himself.
WORDS FROM AN ANGEL
I have not turned my back on you,
So there is no need to cry.
I’m watching you from heaven,
Just beyond the morning sky.
I’ve seen you almost fall apart,
When you could barely stand.
I asked the Lord to comfort you,
And watched him take your hand.
He told me you are in more pain,
Than I could ever be.
He wiped his eyes and swallowed hard,
Then gave your hand to me.
Although you may not feel my touch,
Or see me by your side.
I’ve whispered that I love you,
While I wiped each tear you cried.
So please try not to ache for me,
We’ll meet again one day.
Beyond the dark and stormy sky,
A rainbow lights the way.
Hugs To All,
Alicia and ^^Angel^^ Tommy
THIS WAS ME TODAY!
Saturday, July 10, 2004 9:52 PM CDT
FRIDAY’S JOURNAL:
Hunter woke me up at 7:30 this morning and I was surprised to see that John was still home. He went to work about an hour later and then the kids and I had breakfast. I got them dressed and then we headed out to Lodi to pick up John’s paycheck. When we got back into town I went to the grocery store and then over to the County offices. I needed to get copies of their birth certificates for the Make-A-Wish trip and then we went home. We had some lunch and then watched a little TV. John came home and we took it easy for about an hour, then we headed out to the park. While we were there my mom called and asked if John could come over and see what was wrong with her TV so we did and then we went home. I ran back to the store to pick up a couple things I forgot and then went home and made dinner. It is now 9:00 and Ciara is getting fussy so I better get her some juice. Hunter is beating on the TV, yelling at it. Hunter’s new favorite TV show is Jimmy Neutron, Boy Genius.” He screeches VERY loud and hops all over the place every time it comes on, which is a lot! John has to go to work at 1:30 in the morning so he went to bed early, so did Ciara, and Hunter stayed up until midnight or so. I stayed up to make sure that John woke up and then I went to bed. Kaiser called earlier and they have set up a couple appointments for the kids in August so once we have all the testing done and the results sent to Dr. Kurtzberg, we should be hearing when they want us to fly to Duke so I will keep you all posted on that.
SATURDAY’S JOURNAL:
John got up at 1:00 to get ready for work and I finally went to bed. Ciara woke me up at 4:00 so I gave her some juice and she went back to sleep. At 7:00 I woke up when I heard noises in the kitchen so I got up and found Ciara playing with the dishes in the sink. I brought her out to the living room and put her on the couch and I went back to bed. About half an hour later I heard a thud and she had slid off the couch and was on the floor messing around with her toys. That is were I found her an hour later when I woke up again, at least she kept herself busy! It is now 10:30 and Hunter is still sleeping and Ciara just got her meds, some juice, and is just about to fall asleep. We spent the day watching movies and just relaxing. Around 5:30 I put the kids in the car and we went to Wal-Mart. I forgot to give Ciara her pain meds so when we got there she was crying so hard that she wasn’t even making a sound. I didn’t want to drive 15 minutes back home and then back to the store again so we rushed thru the store, stopped at McDonalds, and then went home. I gave her her meds and she ate a cheeseburger while Hunter ate his dinner and watched cartoons on his TV. I called John around 7:00 but he was already sleeping so I will try calling again in the morning. It is now 8:00 and I am going to try to eat my dinner and watch a movie or something before bed. I put up new pictures of the kids so check it out! Jillian came home from the hospital yesterday and is doing well. Her journal is Jillian's Journal
Hugs To All,
Alicia and ^^Angel^^ Tommy 
Thursday, July 8, 2004 11:09 PM CDT
MONDAY’S JOURNAL:
John doesn’t have to work today so after I made breakfast for everybody we decided to head up to Bear River and do a little fishing. It is way to hot here today and it is only 10:00 in the morning so we want to go up to the river where it is cooler. Around noon we headed out, making a couple of stops on the way. We parked at the dam and the kids got out and roamed around a little bit. John fished while I walked on top of the dam, chasing one large fish that was swimming back and forth in front of my. He ignored my lures and mad me very mad! Bad fish, bad fish! After about 45 minutes, John’s allergies were really bothering him, his eyes were very red and watery so we headed back home. On the way home there was a fire call on the pager and it was on our way so we stopped. John took my camera with him and snapped some pictures for the fire department. While he was doing that, one of Ciara and Hunter’s classmates drove by. Tami stopped the car and Patrick was very excited to see he and insisted on getting out and giving me a hug. He is such a funny kid. We talked for a little while and then John came out and we went home. Ciara was crying and I thought she might be hungry so we stopped at Denney’s and got the kids something to eat, she was very happy after that. When we got home it was still very hot in the house so we didn’t do anything else but sit around and watch TV until it was time for bed. Mason went to camp today, he will be gone for a week. It will be very quiet here without him!
TUESDAY’S JOURNAL:
John had to go to work this morning at 1:30 which was about the time that I went to bed. The kids and I had breakfast and then we didn’t really do much all morning. It is very hot again today, almost 100 degrees, so we are just taking it easy. In the afternoon I took the kids to the grocery store with me. I had Ciara’s wheelchair and Hunter’s jogger stroller in the back of the van and I didn’t feel like dragging all of that out so I didn’t. I sat Hunter in the back of the shopping cart, he wasn’t very happy about that, and Ciara held onto the handle of the shopping cart as we walked thru the store. When we were finished we went back home and I made them something to eat. John came home around 7:00 or so and I made him dinner too. We watched some TV and the kids went to bed around 10:30 or so.
WEDNESDAY’S JOURNAL:
When we got up this morning it was time for breakfast and cartoons. My mom called and asked me to meet her around noon at the store so we took it easy until then. After I was finished with my mom I stopped to get gas and then drove up to Pine Grove to drop off something for John’s brother. I then headed home and we had lunch. John came home from work around 2:30 and about an hour later my sister stopped by for a few minutes. Around 6:00 we headed out to play some tennis but when we got to the high school there were a lot of people there playing so we drove over to the park and nobody was there. We didn’t play too long because Ciara was crying so we went home, stopping at the grocery store on the way. While John went for a jog, I made dinner. Ciara took a nap for about 30 minutes but then she woke up crying so I gave her 3 cups of applesauce and a soft pretzel and she was happy. Around 9:00 I was typing my journal and Hunter walked up to me and kissed me on the cheek, sat down next to me and gave me a high five. YEAH!!! No more 100 degree temps, it was in the 80’s today, finally!
THURSDAY’S JOURNAL:
I was surprised when I woke up this morning and it was 9:30! Hunter got up the same time I did and we went out to the living room. Ciara woke up around 10:30 and she drank 2 cans of Boost in 10 minutes, wow! John is doing another over-night haul so the kids and I aren’t doing anything exciting today. We stayed in and played around, watched movies/cartoons, and not much more. For the past week Ciara has been very fussy and cried a lot, but yesterday and today she has been back to her happy little self again and I am very happy about that. My sister came over around 6:00 to sit with the kids while I ran to the store to get wipes, that is one thing you don’t want to be without! A few minutes after she left, John came home. I wasn’t expecting him home tonight so I was surprised! I didn’t have anything for his dinner so he ran to the store and then I made dinner for him. While he was eating I fed Ciara spaghetti and she ate the whole bowl, I was surprised! Hunter ate his dinner while watching his TV and a Barney video. It is now 9:15 and everybody is quiet and watching one of the TVs so it looks like it will be a good evening. The Make-A-Wish people called today so they are working on Hunter’s Wish to Hershey, PA. It looks like Alyssa will be coming with us so I can’t wait to get there and goof around with her again. We are all going to have a lot of fun. I will let you know more about the trip in the next couple weeks when things get put together. I put up new pictures of the kids from 4 years ago. Ciara was 3, Hunter was 1 1/2, and Tommy was 4 days old.
Claire, are you pregnant?!
Don’t forget to stop by and see how Jillian is doing, I know it means a lot to Michelle to hear from all of you! Jillian's Journal
Hugs To All,
Alicia and ^^Angel^^ Tommy .gif?dc=4675435969180832675)
Monday, July 5, 2004 2:13 AM CDT
TUESDAY UPDATE: Michelle just called me and Jillian is back in the PICU. Yesterday she aspirated and now has pneumonia. She is on the bi-pap machine but she is doing good. Please check her journal for updates http://caringbridge.org/oh/jill/
SATURDAY’S JOURNAL:
After the kids woke up and had some breakfast, it was time for a bath. We just watched TV and didn’t really do a while lot. John came home from work around 3:00 and relaxed for a bit. Around 4:30 we got dressed up and went to a wedding. We actually decided not to take the kids to the wedding because we didn’t want Hunter screaming during the wedding but we went to the reception. Of course Hunter screamed and yelled so I took him outside to get Ciara’s wheelchair out of the car. Ciara was doing so well that we didn’t put her in her chair. The groom is on the fire department with John so John and Ciara were out schmoozing with all of his buddies while Hunter and I walked around taking pictures. Ciara was starting to get a little tired, after all she had been walking around for over an hour, so we headed over to the buffet line and then sat down to eat. She and Hunter both ate very well but it was very hot so we decided to go home. It was still hot in the house so we just took it easy for the rest of the night.
SUNDAY’S JOURNAL:
Hunter woke me up at 7:30 this morning so we watched some cartoons for a while. Ciara woke up around 8:30 so that is when we had a bite to eat. Around 11:00 John took Ciara with him to the track to run while Hunter and I stayed home. Hunter watched Barney and had some cheese, he was pretty happy. In the afternoon we went to the grocery store to get some things for dinner tonight and then we went home. I did a little cleaning up and the kids goofed around. My sister came over around 4:00 and then around 7:00 my dad, Gloria, and Donny came over. We had dinner and then we went outside to do our fireworks. Around 10:00 my sister and my dad & Gloria went home while John and Donny went out for a couple hours. It is now almost midnight and the kids are still up!
CHECK OUT THE NEW PICTURES!
For those of you who follow Cody’s journal at www.forcody.org,he is now using a new website which is www.caringbridge.org/va/cody so stop by and let them know you were there!
Hugs To All,
Alicia and ^^Angel^^ Tommy 
Friday, July 2, 2004 11:29 PM CDT
TUESDAY’S JOURNAL:
John took the day off so that he could go to the kids’ doctor’s appointments with me. Every time we have had to take the kids to the doctor we just got which every doctor was available that day so after three years, we still had never met their pediatrician. So, I made an appointment three months ago and today we finally get to meet her. I figured she should actually “see” the kids since she is always getting calls about them from school, the regional center, etc. Of course she is going on maternity leave tomorrow so hopefully we won’t need her for the next three months. We talked to the doctor about Ciara’s seizures and we decided to not give her any seizure medicine and see how she does. Ciara hasn’t had any for a couple of months and has been doing so much better. If she starts to have the seizures like she was 6 months ago, then they will change her Tegratol to something else. We talked about her pain meds and we told her that we have decreased them so she was happy about that. Next it was Hunter’s turn. Hunter had been screaming and throwing things and just was not happy so she didn’t really do a lot with him. She did look in his ears and they were fine but that is all he let her do. We told her that we were concerned about his right foot/leg turning in and that he has times when he isn’t able to walk so she is going to refer him to an orthopedist. She will refer Ciara also because of her hips so that is good. The doctor is also going to order the tests that Dr. Kurtzberg wants done on the kids so hopefully that will be done soon. After the doctor’s appointments we stopped to get a bite to eat and popped into John’s sister’s office to see her but she wasn’t there. One day soon Julia, we will find you. We then headed home and relaxed for a little bit. John went to his fire department meeting at 7:00 and my sister came over for a little while. After dinner the kids had a bath and then watched their cartoons until it was time for bed.
WEDNESDAY’S JOURNAL:
John had to go to work around 4:30 this morning but the rest of us didn’t get up until 8:00 or so. After breakfast I spent the morning cleaning the house because the Make-A-Wish people are coming over this evening. The kids just roamed around the house doing whatever they wanted while I cleaned the carpets, Ciara’s recliner, and mopped the floors. My sister came over around 3:00 for a couple hours. She left around the time that John came home from work. At 7:00 the Make-A-Wish people came over, it was the same couple that came out for Ciara’s Wish so we already knew them and they knew the kids. They had most of the paperwork already done before they got here because of Ciara’s Wish so that was a good thing. We decided that Hunter’s Wish is going to be a trip to Hershey Penn. to visit the Hershey factory. We will also go to Hershey World which is an amusement park and there are a couple other places to go to but we will have to wait and see what they approve. Alyssa will be coming with us so we are both excited about that. After they left I made dinner and then we just watched some TV before we went to bed.
THURSDAY’S JOURNAL:
Hunter woke me up around 8:00 so we had some breakfast while Ciara slept, she ate when she woke up. John didn’t have to leave for work until 10:00 so while he was still home I made a quick trip to the store. The kids and I spent the morning doing nothing, just being lazy. In the afternoon I had to run a couple errands for my mom and then we went home. When I talked to my mom earlier, she sounded different so I think she is going to have another mini stroke soon. My sister and Mason came over in the afternoon and we had pizza. John came home around 5:30 and my sister and Mason left a little after that. I made dinner, even Hunter ate it, and then we watched some TV. John went out on a call for the fire dept. Some idiot left his hamburgers cooking on the stove and went next door to his neighbor’s house. Later on Hunter was pretty tired so he went to bed, but it only lasted about an hour. Around 11:00 he woke up and cried, kicked, pulled my hair, and just couldn’t go back to sleep. I think he finally fell asleep around 2:00.
FRIDAY’S JOURNAL:
John had to go to work at 3:30 this morning. Hunter and I woke up around 7:30 this morning so we went out to the living room and watched a little TV. When Ciara woke up I got everybody dressed and we headed out to Lodi to pick up John’s paycheck. On the way back I stopped at Burger King and the kids were very happy with their lunch. When I got home I went by the bank and then it was time to pick up Mason. We went over to my sister’s house to pick her up and then we went to the grocery store. When we were leaving the store we ran into some friends that I haven’t seen since Tommy’s funeral so we talked for a while but then it was time to head home. I dropped my sister and Mason off at their house and then went home. John was already home when I got there, around 1:30, so we played a little Nintendo while the kids ransacked the living room. Around 3:00 John was exhausted so he took a little nap while I started dinner. I made taco meatballs, so they will be ready whenever John gets back form loading his truck later this evening. My sister called and said that my mom is having a bad day again today. She has fallen twice and cut her chin but so far she isn’t going to the emergency room. When she fell, Mason was there so he ran to help her up and walked her to the couch and kept checking in on her to make sure she was OK, he is such a great kid. I wouldn’t be surprised if she has to go in the next couple of days. Around 8:00 my sister came over for a while so we laughed and had a good time. It is now 9:30 and Ciara is whining so I gave her a cup of Boost and hopefully she will go do sleep soon. Hunter is still sitting on the couch watching “Cops” with John.
I updated Jillian’s journal this morning so stop by and see how they are doing. Jillian's Journal 
The young man was at the end of his rope. Seeing no way out, he dropped to his knees in prayer.
"Lord, I can't go on," he said. "I have too heavy a cross to bear." The Lord replied, "My son, if you can't bear its weight, just place your cross inside this room. Then, open that other door and pick out any cross you wish."
The man was filled with relief. "Thank you, Lord," he sighed, and he did as he was told. Upon entering the other door, he saw many crosses, some so large the tops were not visible.
Then, he spotted a tiny cross leaning against a far wall. "I'd like that one, Lord," he whispered. The Lord replied, "My son, that is the cross you just brought in."
When life's problems seem overwhelming, it helps to look around and see what other people are coping with. You may consider yourself far more blessed than you imagined.
Hugs To All,
Alicia and ^^Angel^^ Tommy
Friday, July 2, 2004 11:29 PM CDT
TUESDAY’S JOURNAL:
John took the day off so that he could go to the kids’ doctor’s appointments with me. Every time we have had to take the kids to the doctor we just got which every doctor was available that day so after three years, we still had never met their pediatrician. So, I made an appointment three months ago and today we finally get to meet her. I figured she should actually “see” the kids since she is always getting calls about them from school, the regional center, etc. Of course she is going on maternity leave tomorrow so hopefully we won’t need her for the next three months. We talked to the doctor about Ciara’s seizures and we decided to not give her any seizure medicine and see how she does. Ciara hasn’t had any for a couple of months and has been doing so much better. If she starts to have the seizures like she was 6 months ago, then they will change her Tegratol to something else. We talked about her pain meds and we told her that we have decreased them so she was happy about that. Next it was Hunter’s turn. Hunter had been screaming and throwing things and just was not happy so she didn’t really do a lot with him. She did look in his ears and they were fine but that is all he let her do. We told her that we were concerned about his right foot/leg turning in and that he has times when he isn’t able to walk so she is going to refer him to an orthopedist. She will refer Ciara also because of her hips so that is good. The doctor is also going to order the tests that Dr. Kurtzberg wants done on the kids so hopefully that will be done soon. After the doctor’s appointments we stopped to get a bite to eat and popped into John’s sister’s office to see her but she wasn’t there. One day soon Julia, we will find you. We then headed home and relaxed for a little bit. John went to his fire department meeting at 7:00 and my sister came over for a little while. After dinner the kids had a bath and then watched their cartoons until it was time for bed.
WEDNESDAY’S JOURNAL:
John had to go to work around 4:30 this morning but the rest of us didn’t get up until 8:00 or so. After breakfast I spent the morning cleaning the house because the Make-A-Wish people are coming over this evening. The kids just roamed around the house doing whatever they wanted while I cleaned the carpets, Ciara’s recliner, and mopped the floors. My sister came over around 3:00 for a couple hours. She left around the time that John came home from work. At 7:00 the Make-A-Wish people came over, it was the same couple that came out for Ciara’s Wish so we already knew them and they knew the kids. They had most of the paperwork already done before they got here because of Ciara’s Wish so that was a good thing. We decided that Hunter’s Wish is going to be a trip to Hershey Penn. to visit the Hershey factory. We will also go to Hershey World which is an amusement park and there are a couple other places to go to but we will have to wait and see what they approve. Alyssa will be coming with us so we are both excited about that. After they left I made dinner and then we just watched some TV before we went to bed.
THURSDAY’S JOURNAL:
Hunter woke me up around 8:00 so we had some breakfast while Ciara slept, she ate when she woke up. John didn’t have to leave for work until 10:00 so while he was still home I made a quick trip to the store. The kids and I spent the morning doing nothing, just being lazy. In the afternoon I had to run a couple errands for my mom and then we went home. When I talked to my mom earlier, she sounded different so I think she is going to have another mini stroke soon. My sister and Mason came over in the afternoon and we had pizza. John came home around 5:30 and my sister and Mason left a little after that. I made dinner, even Hunter ate it, and then we watched some TV. John went out on a call for the fire dept. Some idiot left his hamburgers cooking on the stove and went next door to his neighbor’s house. Later on Hunter was pretty tired so he went to bed, but it only lasted about an hour. Around 11:00 he woke up and cried, kicked, pulled my hair, and just couldn’t go back to sleep. I think he finally fell asleep around 2:00.
FRIDAY’S JOURNAL:
John had to go to work at 3:30 this morning. Hunter and I woke up around 7:30 this morning so we went out to the living room and watched a little TV. When Ciara woke up I got everybody dressed and we headed out to Lodi to pick up John’s paycheck. On the way back I stopped at Burger King and the kids were very happy with their lunch. When I got home I went by the bank and then it was time to pick up Mason. We went over to my sister’s house to pick her up and then we went to the grocery store. When we were leaving the store we ran into some friends that I haven’t seen since Tommy’s funeral so we talked for a while but then it was time to head home. I dropped my sister and Mason off at their house and then went home. John was already home when I got there, around 1:30, so we played a little Nintendo while the kids ransacked the living room. Around 3:00 John was exhausted so he took a little nap while I started dinner. I made taco meatballs, so they will be ready whenever John gets back form loading his truck later this evening. My sister called and said that my mom is having a bad day again today. She has fallen twice and cut her chin but so far she isn’t going to the emergency room. When she fell, Mason was there so he ran to help her up and walked her to the couch and kept checking in on her to make sure she was OK, he is such a great kid. I wouldn’t be surprised if she has to go in the next couple of days. Around 8:00 my sister came over for a while so we laughed and had a good time. It is now 9:30 and Ciara is whining so I gave her a cup of Boost and hopefully she will go do sleep soon. Hunter is still sitting on the couch watching “Cops” with John. I updated Jillian’s journal this morning so stop by and see how they are doing. JIllian's Journal
The young man was at the end of his rope. Seeing no way out, he dropped to his knees in prayer.
"Lord, I can't go on," he said. "I have too heavy a cross to bear." The Lord replied, "My son, if you can't bear its weight, just place your cross inside this room. Then, open that other door and pick out any cross you wish."
The man was filled with relief. "Thank you, Lord," he sighed, and he did as he was told. Upon entering the other door, he saw many crosses, some so large the tops were not visible.
Then, he spotted a tiny cross leaning against a far wall. "I'd like that one, Lord," he whispered. The Lord replied, "My son, that is the cross you just brought in."
When life's problems seem overwhelming, it helps to look around and see what other people are coping with. You may consider yourself far more blessed than you imagined.
Hugs To All,
Alicia and ^^Angel^^ Tommy
Sunday, June 27, 2004 0:38 AM CDT
FRIDAY’S JOURNAL:
Hunter woke me up at 7:00 this morning and he sounded congested, I hope it is only allergies and not a cold. We had some breakfast and Hunter’s nose wasn’t running so things were looking good. In the afternoon my sister called and asked if I wanted to go out to lunch so I put the kids in the car, picked up Mason from his dad’s and then met my mom and sister at the restaurant. Of course Hunter’s nose started running now. I forgot to bring Ciara’s wheelchair so she and Hunter sat next to me. They ate chips and tortillas like they were going out of style. When the food came I moved across the table from them so Ciara couldn’t grab my food, boy does she have fast little hands! They both ate everything and were very good, I was a little surprised. After lunch we headed home. John came home around 6:00 and I made dinner. We spent the rest of the evening taking it easy. It is hard to believe that Tommy has been gone for 7 months today. I can’t tell you how much we miss his chubby little face and silly little grin. Tommy was a very smart little boy, he even ate his Oreos by twisting them. I know, everybody does that, but you’re wrong. I don’t eat them that way, but Tommy automatically knew that they MUST be twisted, see how smart he was!
SATURDAY’S JOURNAL:
We all slept in this morning, yeah! When I got up I had to run to the store for some eggs and then I made breakfast when I got home. We watched some TV and then eventually we headed out to Sacramento. We had to go to the mall to try and find a certain video game. We forgot to put Ciara’s wheelchair in the van and didn’t realize it until we were at the mall so she had to walk. She walked almost the whole time we were there which was a lot of walking for her. The Disney Store was having a sale so Ciara and I browsed around there while Hunter and John went to look for the game. I got Ciara a couple cute dresses and a t-shirt for Hunter, then we went to look for Hunter and John. We hit a few stores but nobody had it. The last store was out but they said that one of their other stores had it so we left the mall and went to the store and they had several of them so I was very happy. We went back home and played the game, had dinner, and watched some TV. Ciara was fussy all night long, I think she hurts from all of the walking she did. Around midnight I had to give her some Motrin and then she fell asleep.
SUNDAY’S JOURNAL:
John went to work around 8:00 this morning, Hunter was already awake but Ciara was still sleeping. After John left, Hunter and I had a bite to eat and watched some TV. Ciara woke up around 10:00, crying, so I gave her her meds and she went back to sleep. Hunter spent the next few hours running around the house going from couch to bed, watching cartoons. I woke Ciara up to change her diaper but then she went right back to sleep. My sister is going to watch Hunter while I take Ciara and my mom to the movies to see “Dodgeball.” Around 4:30 I got Ciara up and dressed and around 4:50 I stood her up as I was about to go out the door. When I stood her up, her legs started shaking, very slightly and then her legs just gave out and I caught her. I sat her on my knee and then I looked at her face. Her head was turned to the left and her mouth was a little droopy on the right, she was having a seizure. I carried her to the couch and propped her up, the seizure only lasted about 30 seconds. She went right back to sleep so I waited a few minutes to see how she was. She was doing alright so I put the kids in the car and drove to my mom’s house. My sister took Hunter and my mom got in the car and we were off to the theater. Ciara was still sleeping when we got there and she slept thru the whole movie. Right at the end of the movie she woke up and drank some juice. We walked out to the car and then headed home. On the way home she went back to sleep which is normal after a seizure. I dropped my mom off at her house, picked up Hunter and then headed home. I carried Ciara into the house and put her on the couch with her juice cup. She was a little whiney so I stood her up and she walked around a little. I thought she must be hungry so I got her something to eat and she perked up a bit. By 9:30 she was back to her old self, walking around the house and even chirping once or twice. It is now almost 11:00 but it doesn’t look like Ciara or Hunter will be going to sleep any time soon. John is doing another over night but he will be home tomorrow.
Hugs To All,
Alicia and ^^Angel^^ Tommy 
Thursday, June 24, 2004 10:19 PM CDT
MONDAY’S JOURNAL:
Today is John’s last day off so he slept in and I made him breakfast. We were lazy for most of the morning and then in the afternoon we went for a drive. I didn’t know that there was an air strip here in Ione so John drove out there to show me. It is for all of the rich people who live out there. Apparently they own their own planes and they taxi the plane from their houses, out to the air strip and then take off. Now that is a lot of money! After that we drove out to Lake Tabeau and walked around. We used to go fishing there all the time, before we had kids and it has changed a lot. It was time to head back home for dinner. We spent the rest of the evening watching some TV and playing games.
TUESDAY’S JOURNAL:
We slept in this morning but once we woke up we had breakfast. Eventually I got the kids dressed and then we went to the grocery store. I didn’t put Ciara in her wheelchair, I was feeling brave, so I let her walk with me. I haven’t done that in a long time because she wasn’t able to walk that far but she is doing so good these days so I thought I would give it a try, she did great. We headed back home and then John called and said that he wouldn’t be home tonight. I made dinner for the kids and then we just watched some TV and played around. The kids went to bed around 11:00 and I watched some TV in peace before I went to bed.
WEDNESDAY’S JOURNAL:
I woke up around 7:00 this morning but I just didn’t feel like getting out of bed so I crawled under the covers again. I eventually got up around 9:00 and started getting ready. The kids woke up and after they had some breakfast, it was time to leave. I had to meet my mom at K-Mart because her TV broke yesterday and she needed to buy a new one and it wouldn’t fit in her car. I had to leave Ciara’s wheelchair at home so the TV would fit in the back of the van so she walked thru the whole store, skipping and giggling all the way. When we left the store I dropped the TV off at my moms and then we went home. We had some lunch and then around 2:30 I put the kids’ bathing suits on, picked up Mason, and then headed to my sister’s. I dropped Mason off there and then the kids and I went to the swimming pool. When we got there I was surprised to see so many people there. I put Ciara on the step in the pool while Hunter ran around the pool, grabbing everybody’s pool toys. Eventually Hunter got into the pool and had a great time, splashing and throwing the toys all around. Ciara didn’t like getting wet today, she cried every time I took her into the water so she sat on the step with her legs in the water, playing with her toy. We stayed until 4:00 and then we headed back home. After I dried them off it was time for dinner and a little cartoon watching. John came home around 7:00 so while he watched some TV I made his dinner. The Make-A-Wish people called and they will be coming over next week to discuss Hunter’s Wish so I will keep you all posted on what they decide. After the movie we played some Nintendo and by the time we finished, it was 10:00. John has to get up at 4:00 to go to work in the morning so he has to go to bed soon.
THURSDAY’S JOURNAL:
John had to leave very early this morning, but the kids and I slept until around 8:30 or so. We had some breakfast and watched some TV. I was playing a computer game when I noticed Hunter sitting on the couch with the carton of ice cream. Check out the pictures to see what happened. After I cleaned him up we just took it easy. Around 3:00 my sister came over for a few minutes, the she left to go see Mason. I did a few loads of laundry and then around 5:00 we went to dinner with my mom and my sister. I didn’t bring Ciara’s wheelchair with so she sat at the table and did great. I haven’t been using it a lot lately so she has been walking and just keeping up with everybody else and she is doing wonderful. While we were out I washed the van and then headed back home. We just stayed in and watched some TV. Hunter beat me up all night long and Ciara trotted around the house, chirping and chattering away. John is gone over-night again but he should be home tomorrow. It is 8:15 and the kids are still going strong. Hopefully they will go to bed before midnight! CHECK OUT THE NEW PICTURES!
Hugs To All,
Alicia and ^^Angel^^ Tommy 
Sunday, June 20, 2004 1:26 AM CDT
SATURDAY’S JOURNAL:
We all woke up around 9:00 and had some breakfast. Around 11:00 we got in the car and drove to Isleton for the Crawdad Festival, it wasn’t what we were expecting though. We walked around but the majority of people there were bikers and it just wasn’t very enjoyable. We stopped and John had some crawdads and then we headed over to the ride area. There weren’t any rides that I would put Ciara on and they didn’t have any good games to play. John did take a helicopter ride and then we took Ciara over to get a pony ride. She really liked that, then it was time to leave. It was around 1:30 so we headed over to Sacramento so John could get something that he needed to fix the DVD player and VCR. We goofed around for a little while and then we headed home. When we got home I wasn’t feeling well so the kids and I stayed inside and took it easy. John decided that the tires on my van needed to be rotated so he did that and then he tackled the lawn. We had some dinner and then John’s cousin Don came over and they went out for a while. Ciara and Hunter ran around the house all night long, just having a good time. I think they fell asleep around midnight but I was still up and watching TV.
SUNDAY’S JOURNAL:
HAPPY FATHER’S DAY!!!
Since I didn’t get to bed until 2:00 this morning, I wasn’t very happy when I woke up at 6:30 and I couldn’t go back to sleep. Ciara had fallen asleep last night before she got her pain meds so she was up and crying around 7:00 so I gave her her meds and put her in bed with me and she went back to sleep. John, Donny, & Hunter were still sleeping so I watched some TV in the bedroom. Finally around 10:30 people started waking up and then around 11:30 we went out for breakfast, Donny went back to his house. My sister met us for breakfast and then we headed over to my dad’s house for Father’s Day. Hunter and Ciara sat in their strollers in the shade while my dad opened his presents. It was now time to go fishing so my dad and Gloria sat with the kids and watched us fish from their dock. There were a bunch of ducks splashing around and quacking and I think they were scaring off the fish so we didn’t catch anything. Well, except for my sister, she got the catch of the day so don’t forget to check out the new pictures I posted and see what she caught. When we had had enough, we went back up to the deck and talked for a little bit. Around 3:00 we had to leave so we all went back home. We were very tired so we all took a little nap and then around 6:00 we headed out to the Spaghetti Factory for dinner. Hunter and Ciara were very good in the restaurant and ate everything in sight. After dinner John went to the book store and then we went back home. We played a little Nintendo and then watched some TV before we went to bed. CHECK OUT THE NEW PICTURES!
Hugs To All,
Alicia and ^^Angel^^ Tommy
Wednesday, June 16, 2004 1:05 AM CDT
I just updated Jillian fitpatrick's journal for Michelle because she doesn't have access to the internet anymore. Please stop by and read the journal, they are in need of your help right now. Jililan's journal is http://caringbridge.org/oh/jill/
THANKS!
TUESDAY’S JOURNAL:
The kids and I slept in this morning. Hunter had woke up around 1:30 in the morning, that is when I went to bed, and he was up for about an hour but then he went back to sleep. After we had breakfast I out the kids in the car and we went to Lodi to pick up John’s paycheck. We passed John on the way so he got home around 10:30 or so and we got home a little before noon. The kids played in the living room while John and I played Nintendo, I won every game. We didn’t do much for the rest of the afternoon. Around 5:30 John went to load his truck for work and then he went to his fire department meeting. I put the kids in the car and we went to Mason’s last baseball game. When we got there my mom and sister were already there and Mason was pitching, yes pitching. He hasn’t pitched before but he did a good job. Mason has been trying different batting techniques so he hasn’t been hitting the ball very well lately. When he got up to bat for the last time, I grabbed my blue “Tommy” pearl on my necklace and asked Tommy to help Mason hit a great ball. Sure enough, Mason hit that ball so hard that it went all the way out to the fence! Thank you Tommy for helping for cousin, you are a wonderful angel! After the game, the kids and I went home and relaxed. It was 100 degrees today and very hot and miserable in the house. John got home around 9:30 and we played Nintendo again, this time he won all of the games. While we were playing, Hunter snuggled up next to me and watch us, hanging on to my arm the whole time. That was about it for the night.
WEDNESDAY’S JOURNAL:
Hunter and I woke up around 8:00 this morning and it was still hot in the house. I turned on the swamp cooler and the fan and then we watched a little TV. When Ciara woke up I got them dressed and went out to run a few errands. I picked up some KFC on the way home and we had lunch and watched cartoons. It is very hot again today so we just stayed inside for the rest of the day. John called and said that they were sending him out to the desert again so he won’t be coming home tonight. Around 5:00 I headed out to go to the grocery store with my mom and when I drive past the bank at 6:00 the temp was 100 degrees! I stopped to wash the van and then we went back home. I brought the groceries inside but since it was still light outside and had cooled off a little, I took the kids to the playground. When I got Ciara out of the car, I noticed that she was walking/stumbling and her head was turned to the right. Of course that scared me, I don’t want her to have another seizure, she has been doing so well lately. I sat her on the play structure and tried to turn her head but she wouldn’t. At least her eyes kind of moved and looked at me so it wasn’t a “seizure” but it looked like one was about to happen. While I went to see where Hunter had run off to, Ciara jumped up and chattered while she walked around the play structure so I felt better. Hunter ran around, climbing and sliding. After about 15 minutes, Ciara started fussing so I put them back in the car but Ciara’s head was turning to the right again. When we got home I gave her a big dose of her seizure medicine and put her in the recliner with some juice. While she was resting I got Hunter some dinner. About half anhour later Ciara was up and skipping around the living room again so I got her something to eat and she was back to normal for the rest of the night. Around 9:00 I found Hunter in the bedroom, curled up with his blanket and pillow, watching cartoons. It is now 11:00 and Ciara is almost asleep and Hunter will be soon.
Hugs To All,
Alicia and ^^Angel^^ Tommy 
.......................
Sunday, June 13, 2004 11:13 PM CDT
FRIDAY’S JOURNAL:
I didn’t even set the alarm this morning and it was wonderful! Actually, I did wake up around 7:00 and Hunter woke up around 8:30. After we ate some breakfast I took a little nap, until around 10:00 but then it was time to get up again. Hunter and I watched some cartoons and goofed around. Ciara finally woke up around 12:00 so I got her something to eat and then dressed them both. John came home about half an hour later and we watched the news about Ronald Reagan’s funeral. We left the house around 2:30 and headed over to my sister’s house, making a stop at Burger King on the way. She watched Hunter while John, Ciara, Mason, my mom, and myself went to the movies to see “Garfield.” The movie was funny and Ciara was just wound up, of course she ate a bunch of chocolate during the movie so she kept getting out of her wheelchair. After the movie we dropped my mom off at her house and then we stopped by Wal-Mart to get Mason a new baseball glove and a fishing pole for me. We headed back to Ione and dropped Mason off at his house and then we went to our house. Again, it was about 6:15 and time for Reagan’s funeral so we watched TV for a couple of hours, until it was over. John and I both cried when his daughter mention how he opened his eyes right before he died, eyes that hadn’t opened in days. It was Tommy all over again. We both laughed when his son talked about how Reagan had a “thing” for ear lobes. Hunter also has a “thing” for ear lobes and will latch on to anybody’s ear lobes that he can get his hands on. Ronald Reagan was a wonderful man and will be greatly missed.
I am so sad that we lost Tommy, 4 years was not enough to have with him. But I am also grateful that his 4 years were very happy years. When I think of him I have great memories. I never had to see him decline and go thru what Ciara and Hunter are and will be going thru. God spared him from all of that pain.
SATURDAY’S JOURNAL:
Hunter, John and I woke up around 7:00 this morning. John went skeet shooting with his friends so the kids and I stayed home. Mason had a baseball game at 9:00 this morning but my sister didn’t go and I just didn’t feel like taking the kids by myself, especially since I can’t push two strollers at the same time. Ciara woke up around noon so she ate and then they both got a bath. My mom and my sister came over for a little bit and then they went shopping. By that time my throat was so raw I couldn’t even make a sound. Hunter was just being a terror since he woke up and all I did was yell “Hunter!” all morning long. John came home around 2:00 so we put the kids in the car and we went to Sacramento. We had a bite to eat and then we went to the Roseville Galleria. We stopped at Sears so John could look for some kind of tool that he needed so while we were there, Hunter sat on a riding lawn mower and pretended he was driving it. John and Hunter then rode the escalator, Hunter loves that and Ciara took a ride on the Carousel and she loved it! After that we headed home, making a stop at Krispy Kreme, we all had a doughnut on the ride home. We got home around 8:30 so we watched some TV and then went to bed.
SUNDAY’S JOURNAL:
John, Hunter, and I woke up around 8:00 this morning. John went to work, he is doing another overnight haul, so Hunter and I had some breakfast. I was feeling pretty brave today so I decided to take the kids to the city pool. We stopped at Wal-Mart to pick up some water shoes for them and we went to the pool. Hunter has always been afraid of water, especially pools and lakes, so I didn’t put a swim diaper on him, just his floaty suit. When we got there I put Ciara in the pool and she was happy, flapping her arms and chattering away. Hunter ran around the pool, splashing his hands and feet in the water. I sat Ciara on the step and then took Hunter by the hand. Boy was I surprised when he just jumped right in! We were in the kiddie pool which only goes to 2 ½ feet deep and he walked all over that pool, laughing and splashing. I took a picture because John won’t believe me when I tell him Hunter was in the pool. We only stayed there for about 45 minutes because Hunter was wearing a regular diaper and it had soaked up a lot of the pool and was very droopy. People were looking at him funny because of his droopy drawers so we went home, but he didn’t want to go. On the way home I stopped at the cemetery to give Tommy the Dora The Explorer balloon that I bought for him. We stopped at our house to change into dry clothes and then we went for a drive. We got back home around 6:00 and took it easy for the rest of the night. Ciara actually sat and watched TV, I mean really watched the cartoons! She hasn’t paid attention to the TV for a long time so that was great to see. I actually remembered to go to the MPS Forum for “Chat Time.” If any of you have a child, family member, or friend with MPS, please stop by the Forum and check it out. It is a place for us to go and ask questions to other MPS families, to scream and to remember friends that we have lost. You can visit their website by clicking here: www.mpsforum.com 
CHECK OUT THE NEW PHOTOS!
Hugs To All,
Alicia and ^^Angel^^ Tommy Let us know you were here
Thursday, June 10, 2004 11:53 PM CDT
THURSDAY’S JOURNAL:
Yeah, today is the last day of school! I put the kids on the school bus this morning and they were both in very good moods. After they left, it was time to grab a quick bite to eat and then get ready to go to school for Hunter’s kindergarten graduation. I got to the school around 9:45 and Hunter was having his snack a little early so that he could go to his graduation. Ciara and the rest of the class were doing the weather circle. Anne, the photographer from the Sacramento Bee, came to take pictures of Hunter and then we all walked over to the kindergarten class to get ready. We put Hunter’s graduation cap on his head and then everybody walked over to the cafeteria for the ceremony. All of the kids got up on the stage and then stood on the risers, but that was a problem. Hunter is afraid of heights so when we put him up on the stage, he was scared and tried his hardest to get off. While the other kids stood up, Hunter and I sat on the bottom step, I held his hand and he was happy. It was now time for the kids to do their dance so all of the kids got off the stage and lined up in front of the stage and they danced to La Bamba and The Mexican Hat Dance. Hunter even danced with his aid, it was cute. When they finished dancing, the kids got back up on stage, except Hunter because he was afraid, and they called Hunter’s name to get his diploma. He walked over to the steps but when he got to the second step, he started crying and flailing about. That made the other kids laugh at him, which was Ok because kids will be kids, but then all of the adults started yelling at the kids, which made it even worse for me, but oh well life goes on. Hunter grabbed his diploma and he came back and sat with the first graders. While the rest of the kids got their diplomas, Hunter ate part of his and he was having a good time. It was now time for cake so Hunter ate his cake outside with the rest of the kids and he enjoyed it very much. We walked him back to his class and then I left to get a few errands done before they got home from school at noon. Hunter and Ciara were both very happy when they came home and they played around the house. Mason came over and showed me his report card, he got all A’s and one B so he did very well. My sister came over and we watched a movie while the kids played. John came home around 2:30 and then my sister and Mason left. We stayed home for the rest of the day and evening. Although John did leave a couple of times for calls to the fire department. I talked to Michelle today and Jillian is doing wonderful. She was fitted for her wheelchair today so she will be more comfortable once she gets that, but she is doing awesome! Around 7:00 I made dinner and then we watched some TV. It is now 10:30 and I am hoping that the kids will go to bed soon, but at least I don’t have to get up early tomorrow!
DON’T FORGET TO CHECK OUT THE NEW PHOTOS!
As most of you have already heard, Annabelle has 100 percent donor cells! You can visit Annabelle’s journal by clicking here Annabelle’s Journal You can also ready the latest news article about Annabelle by clicking here Idaho Statesman Article
Hugs To All,
Alicia and ^^Angel^^ Tommy
Saturday, June 5, 2004 1:11 AM CDT
WEDNESDAY: I will try to do our journal this evening, but I may wait until tomorrow to do it so I can include Hunter's kindergarten graduation in the journal. Keep checking back, thanks!
FRIDAY’S JOURNAL:
The kids didn’t have school today so we took it easy all morning. We had some breakfast, watched some TV, and they played around the house. Around 11:00 I got them dressed and we went out to the post office and then I had to stop by my mom’s house. We grabbed some potato wedges at KFC and then headed home. Mason went swimming over at his friend’s house so I didn’t have to pick him up today. In the afternoon I decided to put on their swim suits and let them splash around. Ciara walked around the pool for a little bit, then she sat down while Hunter splashed his little heart out. He HATES water, except the bathtub, so I was surprised when he actually climbed into the pool and played around. When they had enough I dried them off and we went inside. That was about the time that John came home from work, around 4:00 or so. I was about to start dinner when he got a call on this fire dept. pager so he had to go. He got home around 6:00 so I made lemon garlic turkey breasts for dinner and everybody ate. I was sitting at my desk and out of the corner of my eye I saw the neighbor’s little dog jumping up at the other neighbor’s car. I didn’t see anybody out there and then I noticed what had the dog so excited. There was a chicken on top of the car and she was trying to get that chicken. It was so funny, only in Ione. After I took a picture of the chicken, John went next door and told them their chicken was out and they caught it and put it away. Around 7:00 he loaded everybody into the car and we headed out to the park to play tennis. We played around, both of us didn’t do very well today, but it was fun. When we finished playing it was time to head over to the Italian Picnic. We saw many friends that we haven’t seen for a long time. We played Bingo and ended up leaving with 4 salami’s, not a bad haul. While we played Bingo, Hunter and Ciara ate half a load of garlic bread and Hunter clapped and giggled at all of the people, they had a fun time. My sister showed up so she took Hunter and Ciara for a walk around the picnic grounds. It was then time to head over to the rides. Unfortunately they didn’t have any rides that Ciara could ride so we were bummed. We played a couple games and then since it was already 11:00 we headed home. I stopped at the grocery store on the way so it was almost midnight by the time we got home. We watched a little TV but everybody went to bed and was asleep by 12:30.
SATURDAY’S JOURNAL:
We slept in until 9:15 this morning and it was wonderful! I made breakfast for everybody and then we got dressed and headed out around noon. We picked up Mason from his dad’s house and took him to my sister’s house. Today is “National Airport Appreciation Day” so we went to out little airport to see what was going on. We took the kids out of the car and got their strollers out but Ciara wanted to walk, she didn’t even sit in her wheelchair once so that was wonderful. As we walked around all of the airplane, Hunter wasn’t very happy, but Ciara giggled and skipped around. She was having a good time and she even got to sit in the Forest Service helicopter! We looked at all of the airplanes and then it was time to leave. We stopped to get John’s cell phone fixed, it hasn’t worked for about a month so now you all can call him again. Now we had to drive to Sacramento to get Ciara’s medications at the pharmacy. I was surprised that I didn’t have to wait very long so that was a good thing. We then made a couple more stops and headed home. We brought the kids inside and changed their diapers but we all got back in the car and headed to Jackson. We went up to the high school to play some tennis. When we were too pooped to play, I ran into the grocery store and then we headed home. John BBQ’d a tri-tip for dinner and then we watched a little TV. It is now 11:00 and I am hoping that the kids will fall asleep soon. I know Hunter will because he has been laying on the bed since we got home, just watching TV. Ciara is still going strong so she is the wild card for the evening. John isn’t coming home tomorrow night so I don’t know what the kids and I are going to do yet. 
CHECK OUT THE NEW PHOTOS! 
Hugs To All,
Alicia and ^^Angel^^ Tommy
Tommy LOVED Snoopy so this is for him.
Thursday, June 3, 2004 7:40 PM CDT
SUNDAY’S JOURNAL:
We didn’t do much today because John isn’t coming home today, he has an over night haul for work. We did go to the grocery store with my mom in the afternoon but that was it. We stayed home and watched movies all afternoon. Hunter and Ciara had a nice day and went to bed early, I was pretty happy about that.
MONDAY’S JOURNAL:
Today is Memorial Day so the kids didn’t have school. We stayed home all day just being lazy. John came home in the late afternoon from work and that was about all we did. Oh, I almost forgot, around 5:00 we went to the park and played tennis. It was around 93 degrees and very hot outside so we didn’t play for too long. After that we went for a drive and then finally made it home around 6:30. You can read the previous journal entry for my tribute to Tommy on Memorial Day.
TUESDAY’S JOURNAL:
Yea, there is school today! I sent them off on the bus and then I had several things that I needed to take care of. Hunter came home and wanted a snack so while he ate and watche dhis cartoons, I did the dishes. Ciara came home at 1:45 and she had another good day today. Mason came over at 2:15 and my sister picked him up around 3:30. He has a baseball game today so I will meet them at the game. John came home and said that he had to go back to work around 4:00 and he would be home at 8:00 so he couldn’t go to the game with us. Around 5:30 my sister came over and we went to the game. Hunter and Ciara had a good time, they watched the game and had some snacks. After the game we went home and John had just gotten home. We watched some TV, had dinner, and that was about it.
WEDNESDAY’S JOURNAL:
After I got the kids dressed for school, Hunter walked out to the bus, all my himself. While the bus driver was getting Ciara’s wheelchair on the bus, Hunter climbed up into the bus and got into his seat. When they drove away I had some breakfast and then it was time for laundry. I haven’t done any laundry for over a week so I did 6 loads this morning. When Hunter came home from school I put him in the car and went to pick up my sister and take her back to my house. Ciara came home from school awake and happy. While my sister stayed with the kids, I drove to Mason’s school to pick him up. I don’t like him walking here when it is so hot outside so whenever I can, I pick him up. When we got back home we had a bite to eat. I bought a swimming pool for the kids so we blew it up and Mason filled it for me. I haven’t let the kids in it yet, maybe tomorrow I will. Around 4:00 I drove my sister and Mason to their house and then went back home. Around 7:00 I dropped Hunter off at my dad and stepmom’s house while Ciara and I went to the movie theater. Hunter is terrified of the theater, it is too loud and too dark, so he stayed at my dad’s and had fun. When we got to the theater my friend was working so we didn’t even have to pay, yea! I got some popcorn for me and some chocolate for Ciara and we went in to watch “Shrek 2.” It was funny, even though I haven’t seen the first “Shrek” yet. Ciara did great thru the whole movie, she didn’t fuss once and just watched and ate her snacks. After the movie we went back to pick up Hunter. He had a great time. He sat outside and watched the lake and the trees, had a bite to eat, and watched Teletubbies. We left around 10:20 and headed back home. Hunter went right to sleep in the chair so I left him there. Ciara was not going to sleep any time soon so she roamed around the house until midnight. That is when I took her to bed with me and she soon fell asleep. John is doing another overnight haul so he will be home tomorrow.
THURSDAY’S JOURNAL:
After I sent the kids off to school I put the laundry away. John called and said that he would be home around 10:15 so when he came home, we had breakfast. We stopped and took care of a few things, then we had to get home before Hunter’s school bus dropped him off. Hunter had a great day today, yeah! He spent the afternoon roaming around, going from the TV in the bedroom to his TV in the dining room. Ciara came home and took a small nap on the couch. She woke up when Mason and his friend Andy came over after school. My sister got here a few minutes later so Ciara was up and moving around. He and John shared some watermelon. Around 4:00 it was nap time for everybody, except Hunter. He is the Energizer Bunny, he just keeps going and going and going. I fell asleep for about 20 minutes but I woke up when Ciara started chattering next to me. That is when I noticed that Hunter had crawled into bed and he was napping, wow! Around 6:00 John went to work to get his truck loaded and then I made tacos for dinner. We are going to spend the rest of the evening watching TV and taking it easy. CHECK OUT THE NEW PHOTOS! Hunter has his Kindergarten Graduation on Thursday so I will post those pictures next Friday.
Hugs To All,
Alicia and ^^Angel^^ Tommy
Twin Cities-based CaringBridge the Subject
of Doonesbury Comic Strip
Minneapolis, MN - The nationally syndicated Doonesbury cartoon by Gary Trudeau is featuring Eagan-based not-for-profit CaringBridge™ (www.caringbridge.org), the free, easy-to-use Internet service developed to keep friends and family informed during medical treatment and other important life events.
The story line features character B.D. who lost a leg due to an injury sustained in Iraq. The first CaringBridge related strip ran Saturday, May 22. The other strips were published Monday and Tuesday in 1,400 newspapers.
"We are so pleased that Gary Trudeau has focused on CaringBridge; it proves that CaringBridge is part of our pop culture, used by millions of people to stay connected during a crisis," said Founder and Executive Director Sona Mehring.
Trudeau learned about CaringBridge through the Cartoon Art Association as part of a special program to promote not-for-profit organizations that are providing a meaningful service. "I'm glad CaringBridge made an impression. It is a free service that could benefit anyone during a challenging time," Mehring added.
Monday, May 31, 2004 4:11 PM CDT
Today is Memorial Day and instead of doing my regular journal, I wanted to do something special for my hero, Tommy. Below is the song that I listen to all the time, it is my “Tommy” song and I wanted to share it with all of you.
THERE YOU’LL BE (by Faith Hill – Pearl Harbor Soundtrack)
When I think back on these times
And the dreams we left behind
I'll be glad 'cause I was blessed
To get to have you in my life
When I look back on these days
I'll look and see your face
You were right there for me
In my dreams I'll always see you soar above the sky
In my heart there will always be a place for you
For all my life
I'll keep a part of you with me
And everywhere I am,
there you'll be
Well you showed me how to feel
Feel the sky was in my reach
And I always will remember all the strength you gave to me
Your love made me make it through
Oh, I owe so much to you
You were right there for me
In my dreams I'll always see you soar above the sky
In my heart there will always be a place for you
For all my life
I'll keep a part of you with me
And everywhere I am,
there you’ll be
'Cause I always saw in you my light, my strength
And I want to thank you now
For all the ways
you were right there for me
You were right there for me
For always
OUR HERO
There are heroes who walk among us
never looking for glory or praise
They don't seek recognition
for their thoughtful, caring ways.
Living lives of deep commitment
providing for those they hold dear
Steadfast with a quiet strength
through times of laughter and tears.
You are a person like that to me
The most selfless person by far
So Tommy, I'd like to thank you
For being the HERO that you are.
Love,
Mom, Dad, Ciara, & Hunter
This is for all of the other little heroes that we have lost along the way.
What Is a Hero?
A hero is someone who is proud and brave,
A hero is someone who is never afraid.
A hero is someone who is never done,
Until the battle is fought and won.
A hero is someone who is kind and smart,
A hero is someone who trusts his heart.
A hero is someone who is always unique,
A hero is someone you'd like to meet.
A hero is someone who will listen to you,
A hero is someone who is loving and true.
A hero can be tall or small,
A hero is not selfish at all.
And if you believe that wishes come true,
Maybe, just maybe, you will find a hero in you.
Hugs To All,
Alicia and ^^Angel^^ Tommy 
Friday, May 28, 2004 0:40 AM CDT
THURSDAY’S JOURNAL:
Again, I didn’t wake up until 7:00 but I rushed around and got the kids dressed and made their lunch, just as the school bus arrived. I spent the morning taking care of a few things, then it was time for Hunter to come home. He ran off the bus and into the house and turned on his videos. I gave him a snack and he was happy. When Ciara’s bus pulled up, the bus driver said that the wheelchair lift was broken so he had to take her out of her chair and carry her off the bus. One of the teenagers on the bus held her hands while the bus driver and I got her wheelchair off the bus by taking out of the back doors. Ciara was in a great mood this afternoon, we went inside and she and Hunter watched some TV and messed around with each other, grabbing and annoying each other. Mason came over and my sister picked him up around 2:30. That was it for the rest of the afternoon, I made a stew for dinner so it was ready when John came home around 6:30. After everybody finished eating, Ciara and Hunter watched TV while John and I played Uno. We watched a little TV and then it was bed time.
FRIDAY’S JOURNAL:
There is no school today, good thing because it is raining and gloomy outside. The kids woke up around 7:30 but they stayed in bed and watched some cartoons. They are both having a great day today. Hunter picked on Ciara a few times and knocks her to the ground, she has a bruise on her rear-end/tail-bone from falling. We spent the day at home until around 4:30 when I ran to the store. Michelle called and said that Jillian is doing very well. In fact while I was talking to Michelle, I could hear Jillian giggling in the back ground, it was funny. We talked for a long time but then it was time to get to work. I cleaned the house and John came home around 6:00. I made parmesan crusted chicken for dinner and everybody ate like little piggies, even Hunter. Ciara had such a good day today that she didn’t even need all of her pain meds today. She only had two doses, not three like she normally gets so that is wonderful. Tonight she kept laughing and laughing while she hopped and skipped around the living room. She is so funny! I will post some pictures of her laughing in the next day or two. We tried to watch a DVD but the DVD player didn’t want to work so we gave up. It is now 10:45 and hopefully the kids will go to bed soon.
CHECK OUT THE NEW PHOTOS!
I don’t know if this will make you laugh, or make your head explode but check out this link: Moon Song
Hugs To All,
Alicia and ^^Angel^^ Tommy 
Wednesday, May 26, 2004 0:56 AM CDT
TUESDAY’S JOURNAL:
After I got Ciara dressed for school it was Hunter’s turn. He couldn’t walk or even stand again this morning so it was hard getting him dressed. When I saw the school bus pull up, I got Ciara in her wheelchair and wheeled her out to the porch. I tried to get Hunter to walk but he couldn’t. I put his hand on the handle on the wheelchair and he took a few painful steps but then he fell to the ground and just couldn’t get up. The bus driver came to help him up and she carried him to the bus while I wheeled Ciara. After they drove away John called and said that he would be home in 45 minutes. When he came home we had breakfast and then we ran a few errands. We got home just in time for Hunter’s bus to bring him home, he was walking better. We put him in the car and headed to Wal-Mart. We decided that we were going to start playing tennis since we both need some exercise and we both stink at tennis, we would give it a try. We bought a couple racquets and we took Hunter to the park to play tennis. He sat and watched us run around until it was time to head home to get Ciara off the bus. Mason came over after school and my sister came over about the same time. She took Mason to his guitar lesson and then dropped him off at his baseball game. We got to the park at 5:00 to watch the game. Since the game didn’t start until 5:30, we played some more tennis. John could only stay until 6:00 and then he had to go load his truck for work and then go to his fire dept. meeting. My mom and my sister got there just as he was leaving so we watched the game. After the game we headed home and just relaxed. John got home around 10:30 and we all went to bed.
WEDNESDAY’S JOURNAL:
John went to work early this morning but I just couldn’t get up. Finally I looked at the clock and it was 7:00 and there was no way that I was going to get the kids up and ready by 7:15 for the school bus. So, I let them sleep and I called the bus and school and told them the kids wouldn’t be going today. She all slept in and had a nice morning. We stayed in, had breakfast and watched cartoons. Ciara and Hunter have been interacting a lot over the past few days and it is funny to watch. Hunter doesn’t like it when Ciara touches him or even sits anywhere near him. He pushes her or kicks her off the couch. Ciara keeps touching him, grabbing him, and just messing with him and it makes me laugh. Mason came over after school but he didn’t stay long because he has baseball practice at 3:30. I got the kids dressed and we took Mason to his practice. When we got back home my mom and sister came over and we went to Chevy’s for a bite to eat. We had a good time and the kids ate a lot. After that we went home and just goofed around for the rest of the evening, of course we had to watch American Idol. It is hard to believe that a year ago, Alyssa, Tommy and I sat in our apartment in Durham wearing our Claymerican Idol shirts and having a grand ol’ time. I sure miss that little guy! Oh, I forgot to tell you all something. I had given my friend Kelly some pictures of us wearing our Claymerican Idol shirts and watching Clay on TV. Well, she got them to Clay and he signed them and sent them back to me, isn’t that cool! Thanks again Kelly! 
I updated the upper portion ofthe journal with info about the procedure at Duke and donation info. Alyssa is working for a furniture company and part of her job is to put together the furniture groups and get them on-line. She put together a kid’s bedroom group and named it after Tommy. You can see the “Thomas” group by clicking here: Thomas Bedroom Group
Hugs To All,
Alicia and ^^Angel^^ Tommy
Monday, May 24, 2004 11:42 PM CDT
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Tommy became an Angel 6 months ago today. I can’t believe it has been that long, it feels like it just happened. Alyssa wrote a poem for him so here it is:
To my sweet angel,
Six months ago from this time and day
I held your hand as you passed away
You floated up to heaven with your angel wings
Sad to be leaving, but happy to be free
I know now you are playing with such glee
You watch over mom, dad and over me
I miss you dearly, a never ending hurt
Your brown eyes glistening, your cute little smirk
You are never to be forgotten, in my heart you will always live
A brave little boy with so much to give
And give you still do from heaven indeed
You gave light to so many families who were desperately in need
So shine bright my glowing star, from heaven above
I miss you so much; you will forever have my love
Love, Alyssa
SATURDAY’S JOURNAL:
I am going to try and remember what happened today but I have tried to block it out of my memory.
The kids slept in but I woke up around 6:30 so I popped in a DVD. When they woke up I got them some breakfast and we waited for my sister to come over. Mason has a baseball game this morning at 9:00 so we headed over there. The field that they are playing on here in Ione is not the best. They are in the process of making it into 4 baseball fields, 2 soccer fields, and something else. There is no grass or bleachers so we all have to sit in the dirt and watch. Well, over the past week they finally filled in all of the trenches and they sprayed hydrograss all over the place. There were signs that said “Stay off the grass” and since they sprayed it everywhere, there was no place for us to walk or sit. To top it off, they turned the whole place into a giant mud field and we couldn’t get Ciara’s wheelchair thru. Of course Hunter decided that he just was not going to walk today and sat right down in the mud and refused to move. Since I had my hands full with the chair and snacks, etc I couldn’t get him to stand up and walk. Eventually we made it over to Mason’s side of the field and we had to sit in the mud, oh what fun! Mason’s team finally won a game and he did a great job. After the game we had to make our way back to the car and we went home. We waited for John to come home from work and then it was time to head out to the BBQ at John Garamendi’s ranch. He is the state insurance commissioner so we thought that it would be a fun time. When we got there we put the kids in their wheelchairs and waited in line to meet Mr. Garamendi. He and his wife were very nice. We walked around the ranch, listened to the music and watched the people. We had only been there about 15 minutes when I was already very angry because of all of the people who wouldn’t stop staring at Hunter. He wasn’t even doing anything, just sitting in his stroller and watching everybody, clapping his hands to the music. He got so many dirty looks and people literally stopped in their tracks to stare at him. I was livid and I told John that the next person so stares at my kids is going to get their head smacked off. The kids and I sat in the hay bales while John waited in line to get dinner. When he came back with the food, he said that he was stunned. The woman in line next to him had seen him walking with Hunter around the BBQ and told John that Hunter looks like too much trouble to have to deal with and we needed to put him in a “home.” As he was telling me this, Hunter was sitting very nicely, clapping his hands as the band played, just having a great time. Why would she think that he needed to be in an institution? Don’t get me wrong, Hunter is a hand full at times, but he just loves life so much and there is NO WAY that we would ever do that. I was so angry that I started to cry. I had just spent a year in the hospital with Tommy and I saw what he went thru, why would I want to put Hunter in a place like that, it would kill him. I told John to point that “woman” out but there were hundreds of people there. I just couldn’t take it anymore and we left. There was absolutely NO reason for us to have to have people stare at my kids and for several of them to have made comments about Hunter was too much. WE WERE AT THE INSURANCE COMMISIONER’S HOUSE! We were just at the park or something, these people are supposed to care about the disabled kids, apparently they don’t. We went back home and I just couldn’t do our journal that night because I would have said something that I shouldn’t have. We spent the rest of the night at home. John’s cousin came over for a while and then it was time for bed.
SUNDAY’S JOURNAL:
Everybody slept in this morning and it was wonderful! We didn’t go anywhere all morning. It is my mom’s birthday today so I put her presents together and wrapped them. Around 2:00 I picked Mason up and we went back to our house. He played on the computer while I got the kids dressed and ready. John went out for a while so around 2:30 I put the kids in the car and we went over to my dad’s to drop off something and to pick up my chairs that I had left there. After that we were off to meet my mom and sister and get a bite to eat for her birthday. My sister brought Mason’s friend along with her so Mason was happy about that. Ciara ate like a little piggy and Hunter ate his so fast I didn’t even see him eat it, all of a sudden his plate was empty. He kept trying to take Mason’s French fries, Mason didn’t appreciate that too much. After we finished eating we headed home. We watched some cartoons and Hunter and I chased each other around, he just laughed and laughed. When John came home I made dinner and then we watched “Pirates Of The Carribbean,” great movie! By the time the movie was over, Hunter was so tired that he was very cranky so I put him in bed and he didn’t move again after that. Ciara was another story, she was wide awake and did not look like she was going to sleep any time soon. Around 11:30 I put her down but she was still awake and I went to bed.
MONDAY’S JOURNAL:
Ciara was already awake and chattering to herself when I woke up at 6:00 this morning. I wondered if she had ever even gone to sleep. Anyway, she walked around the living room chatting and smiling, just having a good time. Hunter did NOT want to get up this morning, no way no how, so I left him in bed until the last minute. When I saw the school bus pull up I wheeled Ciara out but Hunter couldn’t walk to I carried him out to the bus. I went inside and had a quick bite to eat, then it was laundry time. While the clothes were drying I went to the grocery store and came home and cleaned up a little. When Hunter came home, he ran a couple laps around the front yard and then he came inside and had a snack. He goofed around until 1:45 when Ciara came home. She was in a very happy mood, still chatting, giggling, and smiling. I gave her her meds and she walked all over the house, getting into everything! Mason came over after school and played games on the computer. My sister came over around 3:30 and then she took Mason home. Ciara was walking past me so I picked her up and stood her on the couch and slightly bounced her up and down. All of a sudden she started jumping all on her own. She hasn’t jumped up and down for almost a year so I was very excited when she jumped and giggled, she had a good time. Ciara took a nap while Hunter terrorized the dog. In the evening Ciara took another nap and everybody else had dinner. When Ciara woke up she was in a great mood again. She has been doing so well the past few days, I can’t even begin to tell you the difference in her. She has been very vocal, giggly, smiley, and just so much fun. After her dinner tonight, John was playing with her on the couch and she was laughing and having a good time. He was tickling her and she was laughing and all of a sudden she kicked him in the cheek so he stopped, it was funny. Ciara never plays so we enjoyed it very much. It is now 9:45 but Ciara is not going to sleep any time soon, after all she had two naps today.
MY COMPUTER IS HAVING ISSUES AGAIN SO I HAVEN’T BEEN ABLE TO GET ANY PICTURES TOGETHER.
Hugs To All,
Alicia and ^^Angel^^ Tommy 
Friday, May 2, 2004 0:22 AM CDT
WEDNESDAY’S JOURNAL:
After I sent the kids to school I grabbed a quick bite to eat. John called and said that he was on his way home so I cleaned out the van and when he got home, we went fishing. We haven’t been fishing since Ciara was born. We went over to my dad’s since he lives by the lake. I caught 8 little fish and I threw them (still on my line) out into the lake and reeled them in, luring the big fish. I finally caught a big mouth bass when it swallowed my little fish, but my fishing line broke and they got away. That is when we went home because Hunter’s bus was supposed to be bring him home. Ciara came home and was awake and happy. They played around the living room for a while. John went to the fire department for a couple hours and then he had to go back to work. The kids and I watched a little TV in the evening and then we went to bed. John came home around 12:30, that is all I remember.
THURSDAY’S JOURNAL:
Since Mason hasn’t been here all week, it has been kind of boring since I don’t have to take him to all of his after school activities. After the kids went to school, John and I had breakfast and then we went home and got a few things taken care of. The kids came home from school and they had a great day. I made a few lasagna’s for dinner, I gave one to my mom and I will take one over to my dad and Gloria. John went out on a call for the fire department but that was about it. My sister called so we went out to dinner with her, it was fun. After dinner we went home and the kids went to bed fairly early.
FRIDAY’S JOURNAL:
The kids didn’t have school today so they slept in this morning, of course I still woke up at 6:00 darn it. John went to work so I watched a movie. The kids got up and watched some cartoons and had breakfast. I did a little cleaning up and then the kids and I went for a drive. We got home about 30 minutes before John did. He had to go back to work so I made him something to eat and he left, that was around 4:00. He is doing another overnight haul so he will be back tomorrow. That was about all we did today. I did take the kids to the grocery store which is always a sight. I have to push Ciara in her wheelchair while dragging the shopping cart behind me and keeping a hold of Hunter so he doesn’t run off. When we got back home I put the groceries away and we just sat around for the rest of the evening. Tomorrow we have been invited to a party at John Garamendi’s ranch. He is the Insurance Commissioner for the state of California. I am looking forward to that and we will have a lot of fun. They are going to have Peter, Paul, & Mary perform and pony rides, etc so I will let you know more tomorrow evening and I will post new pictures tomorrow.
Hugs To All,
Alicia and ^^Angel^^ Tommy 
Monday, May 17, 2004 0:31 AM CDT
SUNDAY’S JOURNAL:
I don’t know what it is but on school days I can’t get Hunter to wake up at all but when he doesn’t have to go to school, he wakes up at 6:00 am! He woke me up at 6:20 this morning, I was sleeping and he crawled up behind me and started brushing my hair with the brush. He did that for about 5 minutes and then he dove over me, fell off the bed, cried, grabbed his Barney doll, and then jumped back over me and crawled under the covers. But he DIDN’T go back to sleep. He just bounced around watching cartoons until I got up and we went out to the living room. John got up around that time, he had to go to work this morning and he won’t be home until tomorrow afternoon. We had breakfast and stayed in until around 1:00 when we met my sister for lunch. Ciara and Hunter both ate very well and had a good time. After lunch I went to the grocery store and then we went home. We just goofed around until 5:30 when I had to pick Mason up. Just before that my mom called and said that she was having chest pain and it was shooting down her arm, so I told her to call the nurse and I called my sister and told her to go over and see what was going on. When she was feeling better, I picked up Mason and we met my sister at the bowling alley for a couple of games. Mason is leaving tomorrow morning for Science Camp so we took him out before he left. Hunter and Ciara had a snack and watched us bowl. Every time my sister would throw the ball, Hunter would clap his hands and chatter at her, it was funny. My sister won both games but it was a very close race between Mason and myself. After we left the bowling alley I took Mason home but on the way we stopped at the cemetery to give Tommy a balloon. There was a little bunny munching the grass in front of his tomb, it was cute. While Mason chased the bunny around, I gave Tommy his balloon, talked to him, and then we headed home. I dropped Mason off at his dad’s house and then the kids and I went home. We watched TV, had dinner, and the kids went to bed early.
MONDAY’S JOURNAL:
Hunter just didn’t want to wake up this morning so he was not happy with me when I made him walk out to the school bus. Ciara woke up and trotted around the front yard while I got her wheelchair out of the car for her. After they drove away, I had breakfast and cleaned the house. My mom called and said that they are letting her come home this afternoon but I don’t know what they think was wrong with her yet. Around 11:00 I went out to do some errands for my mom and her grocery shopping before she came home but then I had to rush home to get Hunter off the school bus. The bus was already in my driveway when I got there and Hunter was just walking down the steps of the bus. We went into the house and he watched cartoons while I did some more cleaning. Ciara come home around 1:50 and she was bright eyed and in a good mood. She even came home with more birthday presents so I have to say “thank you” to Jami, Lisa, & Christina for the gifts, they are great! John came home about 15 minutes later and that was about the time that Ciara took a nap while Hunter rummaged around for snacks and things to do. Later on in the evening we went out. We stopped by to visit with my dad and Gloria. They live at the lake so John took Ciara down to the dock while Hunter played on the porch. After they came back up to the deck, John sat with Ciara in the porch swing and she fell asleep. When we left they house we took the kids to Denny’s for dinner. They both had a card for a free birthday dinner so we took them out. When we got there we realized that we left Ciara’s wheelchair at home but she sat next to me and did very well without it. After dinner we dropped a few things off at my mom’s and then we stopped by K-Mart and headed home. The kids watched some cartoons and ran around. It is 10:45 and they are still awake but I am hoping they will go to sleep soon. Mason is at Science Camp all week and it was kind of dull without him here, talking non-stop and there is always someplace that I am taking him, but it will be a nice break.
We have just kicked off our fundraising campaign and this year, we've found a new way to raise money all year long. It's fast and easy for you to help me reach my goal! When you buy, renew or extend your magazine subscriptions on our online store, 40 f each purchase goes back to our children! You can visit the website by clicking here: MAGAZINE FUNDRAISER
I have been selling some of our DVDs, computer games, and other items on Ebay so I thought that I would pass the link on to you all in case you would like to see what we have up for sale. I just put up some of Tommy’s DVDs for sale this afternoon and I will be adding over 60 of my DVDs over the next day or two. The link to our Ebay store is EBAY STORE
Hugs To All,
Alicia and ^^Angel^^ Tommy
Saturday, May 15, 2004 1:00 AM CDT
CHECK OUT THE NEW PHOTOS
FRIDAY’S JOURNAL:
Ciara woke up around 3:00 this morning crying so I got up and gave her some juice and she went back to sleep. Apparently my contact lens had fallen out and had dried and stuck to the side of my nose. Of course that was my last contact so I just went back to sleep and I would deal with that later. The kids don’t have school on Friday’s anymore so we got to sleep in today, yeah! We just lazed about until around 11:00 when I went to the eye doctor to get a box of contacts. Hey gave me a box and when I got in the car I put one in and started to drive away. That is when I noticed that I still couldn’t see so I went back to the office and it turns out that they gave me the wrong prescription. After I got the right box I put my lens in and Halleluiah I could see again! I went to the post office and then headed back home. John called and said that he was getting his truck loaded and was in Angels Camp. They are having the Calaveras County Fair & Frog Jump Jubilee and he wanted to know if the kids and I could meet him there and take the kids to the fair. I loaded the kids into the van and we were off. John was waiting for us in his big rig so we picked him up and went to the fair. We stopped to look at the booths but it was time to head over to the rides. Ciara and I rode a ride that I thought she would like, but she didn’t. We walked around looking at the rides, we played a game and I won a prize. Now it was time for Ciara and I to ride the Ferris Wheel. Since Hunter hates rides, he and John played and danced. They had a game where you have to catch a fish on the pole but they let Hunter just splash his hands in the water and they gave him a prize and John didn’t even have to pay them anything, that was very nice of them. After the rides it was time to go home. Ciara and Hunter shared a big soft pretzel on the way home. We waited for John to get home since he was driving his big rig and then we headed over to Mason’s baseball game. Ciara had a blast, she waved her arms in the air and walked around chatting to herself. Hunter sat in his chair and drank his water, walked around, and then it was time to take him to the slides. He ran around the play structure, chased some kids and slid down the slide several times. We walked back to our chairs and watched the rest of the game. Finally we got to go home and stay there. We had some dinner and everybody went to bed early.
SATURDAY’S JOURNAL:
Unfortunately I woke up at 7:00 this morning so I started to get things together for Ciara’s birthday party today. When Ciara and Hunter woke up they had some breakfast and then it was time to leave. We went to the store to pick up the birthday cake and food for the BBQ and then we headed to Micke Grove Park in Lodi. Of course we were late getting there but that was OK. The kids ran around while we got the food ready. Before we started cooking the burgers and hot dogs, Hunter went for a walk with a couple of the aides from school so the rest of us went to the Japanese Garden. We strolled around the pathways and looked at the fish. We walked back to the tables and John had already started cooking so it was time to eat. Hunter had already eaten several big pieces of watermelon but he still managed to eat 2 hot dogs, more watermelon and some chips. Ciara didn’t waste anytime either, she ate very well. After lunch it was time for the birthday cake and it was a darling cake. I was going to get her a Finding Nemo cake but when I saw the Tinkerbell cake I had to get it for her. Everybody sang Happy Birthday and then she ate a LARGE piece of cake while Hunter ate 2 ½ pieces, smearing the frosting all over his face in the process. After we cleaned them up and put away the food, it was time for the presents. John helped Ciara open them and she got a lot of cute clothes and toys which I know she will enjoy. Thank you all for sending gifts and for coming to the party, it was fun! After the party we headed home. John’s brother came over for a while and chatted. When he left we went to the hospital to visit my mom, of course I brought her some birthday cake which made her very happy. We visited for a while and around 8:00 we left and stopped by my sister’s to drop off a couple things, then we headed home. We had dinner and watched some TV and then it was time for bed. Ciara had taken a little nap after her party, but Hunter never stopped running all day and he was pooped!
Hugs To All,
Alicia and ^^Angel^^ Tommy
Wednesday, May 12, 2004 1:30 AM CDT
I am so sorry that I haven’t done the journal for almost a week. Things were very hectic and then by the time I remembered that I needed to do the journal, it was almost midnight and I was too tired.
FRIDAY’S JOURNAL:
Today is Ciara’s 8th birthday! I sent them off to school with a birthday cake for the class to share. I ran around trying to get everything done and then Hunter came home from school. He had a snack and we waited for Ciara to come home. She was awake and had a good day at school. Mason came over and goofed around until 3:30 when we had to take him to baseball practice. We decided to take a drive up to Big Trees which is a California Redwoods Forest. We forgot to bring Hunter’s jogger stroller with so he walked for as long as he could. My sister called and said that she was taking my mom to the emergency room again but then my cell phone cut out, there wasn’t any reception up there with the trees. We got out of the car, John gave Hunter a big stick and he happily walked along, bouncing his stick on rocks and trees. When he was having trouble walking we took Ciara out of her chair and put Hunter in. Ciara had so much fun walking, she chattered up a storm and waved her arms around, it was wonderful. We kept switching them in and out of the wheelchair until we got to the end of the trail but Ciara did a lot of walking. Eventually Hunter couldn’t walk anymore and neither could Ciara so we put Hunter in the wheelchair and John carried Ciara on his shoulders to the car. We drove around looking at the trees but we were starving so we headed back home. On the way we stopped for dinner and Ciara attacked her dinner like she hadn’t eaten in a month. When we finished eating we headed back to Jackson but we stopped at the grocery store on the way. My sister called and said that they had just sent my mom back home and she needed some things from the store so we picked them up and took them over to their house, then we went home. The kids slept very well that night!
SATURDAY’S JOURNAL:
When we all were awake this morning we decided to take the kids to the Sacramento County Fair. On the way we grabbed a bite to eat at the drive-thru and then went to the fair, this time we remembered Hunter’s stroller! We strolled around the fair for a while and then it was time for the rides. Since Hunter HATES the rides, he and John sat them out while Ciara and I rode a few. She loved the roller coaster and her favorite has always been the Tilt-A-Whirl. Hunter screamed every time we were getting on a ride, until he realized that he wasn’t going, then he was OK with it. After the rides we played a couple games and then it was time to head home because we forgot to bring Ciara’s pain meds with and she was getting cranky. We stayed in for the rest of the evening and took it easy.
SUNDAY’S JOURNAL:
Today is Mother’s Day and we were going to take my mom out for brunch but my sister called this morning and said that she didn’t feel like going out. She wanted to BBQ at our house so they would be coming over around 1:00. That meant that I had to clean the house and then go to the grocery store. Normally that wouldn’t be a problem, but today they are having a parade down Main Street so our street (which is one block from Main Street) was blocked off. Eventually I made it to the store and back home again just as the parade was ending. After the parade then had go-cart races at the end of our street so again, the streets will be closed so I hope my mom and sister can get here. I got everything ready and put the food out, but they didn’t get here until almost 3:00. John put the tri-tip on the BBQ and we just goofed around until it was ready. Ciara was taking a nap when it was time to eat so everybody else sat at the table and had dinner. After dinner Mason played around outside for a while and then around 6:00 everybody went home. Since I don’t eat meat and I hadn’t really had anything to eat all day, John took me out to dinner. Hunter nibbled but Ciara and I had a good dinner. We stopped at the store after dinner and then headed up to John’s parent’s house. We couldn’t stay long because Ciara needed her pain meds and she was a little fussy. When we got back home the kids went to bed and we watched some TV until we went to bed.
MONDAY’S JOURNAL:
I sent the kids off to school on the bus and then grabbed a quick bite to eat. I went out to run a quick errand but I had to get home because Libby from the Regional Center was coming over at noon for Ciara’s annual IPP. She got the doctor at Kaiser to fax her the prescriptions for Hunter’s wheelchair and Ciara’s feeding chair, ramp, wheelchair cushions, and Tumbleform chair so hopefully we will get those soon. She also got a prescription for Ciara’s Boost so we won’t have to pay for that much longer either. Hunter came home while we were talking but he was very good and sat next to me and watched Blue’s Clues. Libby left and then Ciara and Mason came home from school. My sister came over to pick up Mason and then the kids and I didn’t do much of anything. John came home around 5:00 and we played a game of Trivial Pursuit, he won. For the rest of the evening we watched some TV and took it easy.
TUESDAY’S JOURNAL:
After I sent the kids off to school, I had some breakfast and then headed out to run some errands before Hunter came home from school. Hunter came home around 12:30, had a snack, and watched his cartoons. John came home about an hour later, around the same time Ciara came home on the bus. I picked Mason up at school and stopped by his house to get his baseball uniform and then we went back to our house. He goofed around until 3:30, that is when we had to leave to pick up my sister and get to Mason’s baseball game. The game was up-country which means it was colder then where we live and I forgot to bring jackets or a blanket for the kids. We sat outside and watched the game for a while but then Ciara got cold and wet from her drool so we put them in the car with the heater on and they were happier. Mason’s team lost badly so we left before the game was over, that was around 7:00 or so. On the way home we stopped at our storage to pick up our double jogger stroller and we dropped it off at a friend’s house. We then dropped my sister off at her house and we went home. We watched some TV and then went to bed early.
WEDNESDAY’S JOURNAL:
After I got the kids dressed for school, I put Ciara I her wheelchair. When I saw the school bus pull up to the house I opened the front door and Hunter skipped out the door and he literally danced down the driveway and got into the bus, he is a funny kid. After they drove away I started to get the laundry together, I ended up with only 3 loads so that wasn’t too bad. I went out to get some things done and today is my sister’s birthday so I bought a few things for her and then I went back home. When Hunter came home from school, the bus driver said that he had a great day at school and ran out to the bus when he got there to pick him up. Hunter watched some cartoons while I put together and wrapped the birthday presents. Ciara came home and she was sleeping so I let her nap for a little while. Mason came over after school and helped me with the presents. He played around the computer until it was time for me to take him to his baseball practice at 3:30. On the way home I stopped at the post office and the gas station. The kids roamed around the house while I tried to take a nap but that didn’t work out. Mason’s dad dropped him off at my house after practice at 5:30 and then around 6:15 we loaded the kids and presents in the car and went to pick up my mom and sister for dinner. We went out for Mexican and after dinner I dropped them off at their house, took Mason back to his dad’s, and then I finally got to go home and relax. I watched American Idol, the kids had a bath, and then we just took it easy for the rest of the night. John went over night again so he will be home tomorrow.
YOU ARE ALL INVITED TO CIARA’S BIRTHDAY PARTY!
You can get the info from her invitation which is in with the photos so check it out, we would love to have you come and enjoy her special day with us!
Hugs To All,
Alicia and ^^Angel^^ Tommy
Thursday, May 6, 2004 0:49 AM CDT
I AM SORRY THAT I HAVEN'T DONE THEJ OURNAL FOR A FEW DAYS. I PUT UP NEW PICTURES TONIGHT SO DON'T FORGET TO CHECK THEM OUT. I AM TOO EXHAUSTED TO DOTHE JOURNAL THIS EVENING SO I WILL DO IT IN THE MORNING. THANKS!
TUESDAY’S JOURNAL:
Ciara was in a fairly good mood this morning when I got her up for school, Hunter didn’t want to get us as usual. I spent the morning running some errands and visiting my mom at the hospital. They are still running several tests on her and we don’t really know anything yet. On the way home I washed the van and then it was time for Hunter to come home. He ran into the house and immediately wanted a snack so he ate his cheese and watched cartoons. Ciara came home around 1:45 and after I changed their diapers I put them in the car and headed out to the school to meet some friends. When I got there I chatted with Lisa, their teacher, and then Margie called and said that they wouldn’t be able to make it, their meeting ran long. I talked with Lisa a little more and then I headed home. Mason has a baseball game today so I grabbed his drinks and drove to Jackson. The game hadn’t started yet so I gave him the drinks and then headed back home, it was already 5:00. Today Ciara and Hunter’s school is having their Open House and the BBQ starts at 5:00, the Open House is at 6:30. When I got back home, John had just pulled up so he got in the car and we went to the school. We had a bite to eat in the cafeteria and stayed until the raffle was over. Then it was time to visit the classroom. After we finished there we headed home and relaxed for the rest of the evening.
WEDNESDAY’S JOURNAL:
After I sent the kids off to school I had breakfast and watched my usual morning shows on TV. I got a few things done< washed the dishes, cleaned up a bit, and then Hunter came home from school. It was about that time that my mom called and said that she was being discharged from the hospital and she needed a ride. I hadn’t been able to get a hold of my sister all morning so I told my mom that I could come get her right now but I had to get back home in time to get Ciara off the school bus. That wasn’t going to work because she still had to get dressed and the nurse had to discharge her still and do the paperwork. I finally talked to my sister and told her that she needed to pick up my mom and take her home so that worked out OK. When I saw Ciara’s bus pull up I immediately heard her crying. The bus driver said that she had a bad day at school, she fussed and cried a lot. I gave her her meds and we tried everything, holding her, feeding her, gave her juice, etc. but nothing stopped the crying. Mason walked over after school and my sister picked him up and took him to his baseball practice. Around 6:00 she came back and we went to Mason’s open house at school, John stayed home with the kids. Mason had several tests hanging around the classroom with A on them and then he showed us some other things that he did. After that we went back home and Ciara was still fussing. Around 8:30 I gave her all of her meds, some Motrin and hoped that she was fall asleep. Eventually she did and since John and Hunter were already sleeping, I went to bed also.
THURSDAY’S JOURNAL:
When I got up to get the kids ready for school this morning I was surprised to see John still home. He wasn’t feeling well so he didn’t go to work. Hunter woke up just a couple minutes after I did and immediately started bouncing on the bed, watching his cartoons. I got them dressed and John helped me get them on the bus. My laptop hasn’t been working since we were at Duke so we took it into get fixed and then I went back home. A few minutes later Hunter’s bus pulled up and he was in a good mood. He ran around, had a snack, and watched his cartoons until Ciara came home. The bus driver said that she had a good day at school today and she was awake and happy when we took her off the bus. I brought her inside and she was quiet for 15 minutes, then she started fussing. I held her in my lap and she played with my hair and held my hand, 5 minutes later she was asleep. I put her on the couch and she slept for a couple hours. Mason came over after school and played some computer games until my sister came to pick him up. That was about it for most of the evening. John was finally starting to feel a little better, Hunter was running around giggling and dancing, and Ciara was starting to fuss again. Around 7:00 I went to my sister’s to pick her up and take her back to our house to watch the final “Friends” episode so I took Ciara with me. When we got back home we had dinner and Ciara ate like a horse. After that we watched “Friends” and she fell asleep on the couch about half way thru the show. Hunter went into the bedroom around 9:45 and rolled himself up in the comforter and went to sleep. When the show was over I took my sister back home and then it was time for bed, I am exhausted!
TOMORROW (FRIDAY) IS CIARA’S 8TH BIRTHDAY! HAPPY BIRTHDAY BABY! YOU ARE ALL INVITED TO CIARA’S BIRTHDAY PARTY!
You can get the info from her invitation which is in with the photos so check it out, we would love to have you come and enjoy her special day with us!
Hugs To All,
Alicia and ^^Angel^^ Tommy.gif?dc=4675452801917265661)
Monday, May 3, 2004 0:44 AM CDT
SUNDAY’S JOURNAL:
We all got to sleep in a little bit this morning which was wonderful. I called the hospital to talk to my mom and she said that they haven’t really found anything wrong yet. We think she had another small stroke but they are doing a lot of tests on her heart so I am not really sure what the problem is yet. Around noon we put the kids in the car and picked up Mason at his dad’s and then met my sister for lunch. It was fun, we told Mason a bunch of embarrassing stories about when he was little and we all had a good time. After lunch we went to the hospital to see my mom and bring her a few things. We could only stay for a few minutes because they were getting ready to take her for an echocardiogram on her heart. When we left the hospital we took Mason back to his dad’s and then we went home. I did have to make a quick trip to the grocery store and when I came back, Hunter had gotten into the whipped butter, again, and buttered the couches and his head. In the evening John’s cousin came over so they chatted for a few hours. Ciara and Hunter were both crying because they were hungry so I started making their dinner. When it was finally finished I cut up Ciara’s chicken and when I went back to the kitchen and then came back to her, I found the dog up on the couch and she ate Ciara’s dinner. I was very angry, Ciara was still hungry, Hunter was still crying and I had to make more parmesan chicken. After the kid’s ate and Donny went home. It was time for bed.
MONDAY’S JOURNAL:
After I sent the kids off to school I had a bite to eat and then just as I was about to take the van to the auto shop, the school called. Apparently while Ciara was drinking her Boost, she sneezed which made her throw up a little of what she was drinking. She started to drink again and then coughed and more Boost came up. They had a substitute teacher today and she called me to come pick Ciara up, but there was a problem. I had to get the oil changed and a tune up before I reached a certain mileage on my van and I only had around 40 miles left until I went over. So, if I drove to the school to get Ciara and then went to the auto shop, I might go over the limit but what else could I do? I went to pick Ciara up and she was sleeping. I talked with the aides for a while and then I loaded Ciara into the car and headed to the auto shop. I was under the impression that it would only take 20 minutes for them to work on my van so I put Ciara in her wheelchair and started to walk downtown when they told me it would be an hour. I wasn’t too happy about that, it was very hot already and the sidewalks in Sutter Creek are not wheelchair friendly, they have rocks and bumps and lots of steps. I called my sister to come pick us up so when she did we decided to go visit my mom in the hospital. Ciara’s wheelchair doesn’t fit into her car so we had to leave it at the auto shop. When we got to the ICU they told us that they had just moved my mom to a regular room so we had to walk over there, with Ciara. She will be staying again tonight but she might be able to come home tomorrow. We stayed for a little while but then it was time to get my van back and get home in time to get Hunter off the school bus. The bus was already in my driveway and Hunter and the bus driver were walking up to the porch when I pulled in. Hunter ran in the house and I put Ciara in her chair to relax for a little bit. Around 2:00 I put them in the car, picked Mason up from school and then went to my sister’s house to pick her up. I had a few stops to make so she stayed in the car with the kids while I ran around getting everything done. Mason’s friend came home at 3:30 so we picked him up and went to the bowling alley so they could bowl a couple games. Ciara and Hunter had a snack while the boys bowled, Hunter ran around having a great time. After they finished bowling we went home. John wasn’t supposed to be home tonight, when he left this morning he said he was doing an overnight load and wouldn’t be back until tomorrow. Anyway, we were only home about 2 minutes and John walked in, he scared me. For the rest of the evening we watched some TV, the kids played and had dinner, and then around 11:00 they went to sleep. Margie called and said that she was coming to Sacramento tomorrow and she wanted to stop by and see Ciara and Hunter’s classroom. Margie has two daughters with Sanfilippo and we have been talking on the phone for a couple years but this will be the first time we have been able to meet, I am excited. YOU ARE ALL INVITED TO CIARA’S BIRTHDAY PARTY!
You can get the info from her invitation which is in with the photos so check it out, we would love to have you come and enjoy her special day with us! For more information and directions to Micke Grove Park you can visit their website by clicking here: MICKE GROVE PARK. Ciara's birthday "Wish List" is above our journal if you are interested.
Hugs To All,
Alicia and ^^Angel^^ Tommy
Saturday, May 1, 2004 10:12 AM CDT
I think I woke up around 8:30 this morning and the kids were up not too long after that. We had some breakfast and then I got them dressed and we went out to run a couple of errands before John came home. Ciara was in a great mood this morning so when I got back home, I left the kids in the car, grabbed John, and we went out for a drive. We ended up in Stockton playing miniature golf. Ciara loved it but Hunter didn’t care for it too much. It was in the 90’s today and very hot so we put the kids back in the car, grabbed some drinks out of the cooler and drove around for a little while, then we headed home. The kids relaxed and watched some cartoons. Around 6:30 we went out to have dinner with my mom and my sister. Ciara ate like a horse and she was very happy about it. Hunter ate 3 pieces of pizza and chattered VERY loud the whole time. As we were walking out to the car, my mom started to have an episode so we took her to the emergency room. We got lucky, she was the only patient there and since I worked there for 14 years, I knew everybody and they knew her. We stayed until the tests were done and they had to wait for the results. I talked to Dr. Hood and he said that they would be keeping her overnight so we left. On the way out I put Ciara on the scale and was very happy to see that she has gained 2.5 pounds! YEAH CIARA! We dropped my sister off at her house and then went home. We watched a little TV and the kids fell asleep around 10:00. I found Ciara curled up in the recliner sleeping and Hunter sprawled out on the bed, snoring. 
DON’T FORGET TO CHECK OUT THE NEW PICTURES! Today we received a package from Harmen. Ciara and Hunter got some birthday presents and chocolates from Holland. Thank you all, everything is wonderful!
Hugs To All,
Alicia and ^^Angel^^ Tommy
Fri, April 30, 2004 0:37 AM CDT
I have been trying to update the journal tonight but my computer is giving me problems again so I am giving up! We had to take my mom to the Emergency Room tonight and they admitted her to the ICU. I will try again in the morning to post the journal.
THURSDAY’S JOURNAL:
Ciara woke up at 3:30 this morning so John changed her poopy diaper and she went back to sleep. She woke up again at 5:00 and cried so I snuggled up with her and she went back to sleep, John went to work. I couldn’t get back to sleep so when I heard her snoring, I got up and watched some TV. Around 6:30 I got the kids up and ready for school. The bus picked them up at 7:20 and then I just relaxed for a while. I tried, again, to fix my computer and I finally got the files out that I needed so I was happy about that. I got dressed and then ran a few errands and then went home. John came home from work around 11:30 and Hunter came home at 12:30. He was smiling and couldn’t wait to get off the bus, he ran into the house. John went to his parents to borrow their truck to make a dump run so Hunter and I stayed home. My sister came over at 1:30 to sit with Hunter and get Ciara off the school bus while John and I went to their school. The school was having a tea to honor their special parents and they invited me. We had a bite to eat and then Lisa, Ciara and Hunter’s teacher, talked about me and then brought me up and gave me a rose. She will not be their teacher next year, she is moving to the high school and I will miss her very much. She has been their teacher for 3 years now, in fact she is the one that diagnosed Ciara when none of the doctors could! After the tea we went back home so that my sister could pick up my mom at the hair salon. I gave my sister my rose and she brought it to the cemetery and gave it to Tommy. We didn’t really do much for the rest of the night.
FRIDAY’S JOURNAL:
Ciara woke up happy this morning and Hunter even walked out to the bus, with a slight limp. After they drove away I got the laundry together and did several loads. I ran to the store to pick up some drinks and snacks for Mason’s baseball game this evening and then I ran into an old friend that I haven’t seen for over a year so we had a quick bite to eat together. After lunch I drove her home and then had to rush home to get Hunter off the school bus. I put him in the car and then we had to go back to Jackson and try to collect items for our raffle basket. Ciara and Hunter’s school is having a fundraising raffle at the open house Tuesday. They asked me to put together the basket for our class and then theme is “A Night Out” so I got
* Lunch/Dinner for 2 at El Torero
* Dinner for 2 at Jose's Mexican
* Dinner for 2 at Bonanza Bar & Grill
* 6 Movie Passes
* Bottle of Champagne & 2 glasses
* 2 rounds of golf with cart at Mace Meadows
Not too bad eh! I hope it brings in some money. I rushed home again to get Ciara off the bus, I put her in the car and then picked Mason up from school. I stopped to get him a sandwich at the deli and then dropped him off at his house to eat and get dressed for his baseball game. I then headed back to Jackson to pick my sister up and we went to Plymouth to drop everything off at the school. The kids were fussy so we stopped to get them something to eat and then went back to my house to change their diapers before we went to the game. Just as we got everything set up at the game (chairs, coolers, stroller, etc) everybody had to move over to the next field, I wasn’t too happy about that! So we moved everything over , at least there was some shade over there. Ciara was still fussy but Hunter laughed as he watched the kids run around chasing the balls. Ciara cried most of the time we were there so around 7:00 we loaded the kids back into the car and left before the game was over. At least we got to see Mason make a 3 base hit. I took my sister back to her car in Jackson and then the kids and I went back home. Ciara walked around the living room for about 10 minutes and then she fell asleep in her chair. Hunter had been running around the house and watching his cartoons. It is now 10:45 and I know he will be sleeping soon. John will be home tomorrow, he is on another overnight haul to Southern California.
I am hoping that somebody out there can help me. I am trying to find a pacifier that is bigger then the Size 3 that they sell in the stores. I heard that somebody makes pacifiers for older disabled kids but I haven’t been able to find them so if you know of something, PLEASE let me know.
Hugs To All,
Alicia and ^^Angel^^ Tommy
Tuesday, April 27, 2004 9:47 PM CDT
MONDAY’S JOURNAL:
Ciara woke up smiling and giggling this morning but Hunter couldn’t walk. Sometimes his knees and ankles turn inward and he can’t bare any weight, usually in the mornings so I had to carry him out to the school bus. I haven’t weighed him in months but last time I did he weighed 65 lbs and he definitely has plumped up since then so trying to carry him while he is wiggling is no easy task! After the bus drove away I watched a little TV and then did some laundry and ran some errands. Hunter came home from school and he was still having some trouble walking but he did walk into the house and sat down in front of his TV. I did some cleaning until my sister came over, that was around 1:30. About 15 minutes later Ciara came home so my sister went out to get her off the bus. I had never met that bus driver before but he said that he met Ciara in December when he was driving along, learning the route. He was amazed at how well Ciara looks and the big difference in her since December. She was still smiling and laughing when they took her off the bus and continued when she came inside and trotted around the house. She and Hunter had a snack while my sister picked Mason up from school, then they came back to our house. Mason played some computer games for a while and then they went home. John came home around 4:30 and we relaxed for a while and then he did some work outside. Later in the evening I made cheeseburgers and then that was it. Michelle (Jillian’s mom) called and we talked for a while. By 10:00 Ciara was STILL laughing so I took some pictures and video, it was so cute! I can’t tell you how long it has been since I have seen her laugh like that. Hunter had been running back and forth across the living room, right in front of her, and he was laughing hard and then all of a sudden, Ciara started laughing, it was darling. I think they finally went to bed around midnight.
TUESDAY’S JOURNAL:
Ciara didn’t want to wake up this morning and neither did Hunter. After I got Ciara dressed she crawled up onto the couch and went back to sleep. I had to carry Hunter out of the bedroom because he couldn’t stand up or walk again. Hunter is afraid of heights and HATES being held so every time I have to carry him, he kicks, screams, and fights which makes it even harder to carry him. As the bus driver was putting Ciara on the bus, I had to carry Hunter out to the bus and she helped me get him into his seat. After they left I made a poster with pictures of Tommy. I mailed it to Alyssa so that she could bring it to the Rainbow Of Heroes Walk and put it on the wall for me. It is so hard to look at Tommy’s pictures. Since we moved back here, I still don’t have any pictures of the kids up on the walls or anywhere. It is just too much right now, I can’t put his picture up and look at it all day, it makes me cry. I also can’t just put up pictures of Ciara and Hunter with Tommy’s so our walls are bare. After I mailed that to Alyssa I went to the grocery store and then went back home. I put some water and Gatorade bottles in the freezer to take to Mason’s baseball game later today and popped a lasagna in the oven, for dinner later. It is 96 degrees here today and I wanted to bake it now while it was fairly cool still, we can just microwave it later. Since Hunter came home he spent his time in the bedroom, bouncing on the bed watching his cartoons. When Ciara come home, the bus driver said that she had been a little fussy so I brought her inside, gave her some meds & juice and she was still fussy. Mason came over after school and then around 2:30 we had to leave. I stopped at Mason’s house to get his guitar and baseball uniform and equipment and then I dropped him off at his guitar lesson. I stopped at my sister’s work to drop off Mason’s baseball stuff and then I had to meet my mom. I picker her up and dropped her off at my sister’s work so that she could go to the baseball game, then I went back home. I had just enough time to change the kid’s diapers and stop at the store to pick up some sodas for my mom and then we went to Mason’s ball game. It was very hot and before I left the house I slathered the kids in sun screen but we were lucky, there were some trees so we got to sit in the shade. Hunter ate half of what I packed in the cooler and wasn’t very happy when I stopped him for eating everything else that was in there. Ciara did pretty well, she played with her toy, drank her water, and had a snack. After the game we went back home, that was about 7:45 and I sat Ciara in her recliner with some juice and she was happy. Hunter continued where he left off, bouncing around the bed watching cartoons. He still had a lot of trouble walking and my sister had to carry him to the car after the game, I hope he has a better day tomorrow. John isn’t coming home tonight, he is on another Southern California run so the kids and I had the lasagna I made earlier and then just took it easy for the rest of the evening. 
May 1st, the Family Support Program at Duke is having their annual Rainbow of Heroes Walk. Hunter, Tommy, Alyssa and I went while we were they last year and we had a lot of fun. I remember we couldn’t keep Tommy out of the Jump House, he was throw a fit when we made him get out just so he could get a drink and cool down. We were hoping to be there this year to walk in memory of Tommy, but it just isn’t going to work out. Alyssa is going for us so if anybody would like to sponsor her and send her a donation in Tommy’s memory to help out the Family Support program you can send her a tax deductible check made out to Duke PBMT-04RH. Don’t forget to put Tommy Bennett on the Memo line. For more information about the Family Support program you can visit their website here: Rainbow Of Heroes Website
MAIL CHECKS TO:
Alyssa Boreiko
100 Rock Spring Court
Carrboro, NC 27510
Hugs To All,
Alicia and ^^Angel^^ Tommy.gif?dc=4675438025903926924)
Sunday, April 25, 2004 11:50 PM CDT
CHECK OUT THE NEW PHOTOS!
THURSDAY’S JOURNAL:
The kids didn’t want to get up this morning so I dressed them while they slept and that is how they were when the bus drove off, sleeping. I rushed around to get a few things done and then I had to get ready for their party at school. Today Ciara and Hunter’s class is having a Teddy Bear Picnic and an Un-birthday Party at the park. When I got to the school we loaded the supplies into my van and then the kids and teachers walked to the park. The city had just put in new playground equipment so the kids were very happy as they ran around trying out the new slides, swings, and other interesting play things. There is a gazebo at the park so that is where they set up the Teddy Bear Picnic. Each student was supposed to bring their favorite stuffed animal for the picnic, it was cute. They all sat on the blanket with their animals while the teacher read “The Teddy Bear Picnic” and then they listened to the song. When they were done singing, it was time for cupcakes! Ciara couldn’t wait for us to take the wrapper off, she grabbed a handful of frosting and was pretty happy with herself. She ate two cupcakes while Hunter gobbled down three of them. After the kids ate, they went back out to play while the teachers set up the Un-Birthday Party (from Alice In Wonderland) out at the picnic benches. The kids sat around the table and they each wore a crown that they had made. They had their snacks, juice, and more cupcakes! When they finished eating it was time to head back to the school, it was almost lunch time. I drove everything back to school and then I headed home to get a few things done before Hunter came home at 12:30. He came home and then Ciara came home at 1:45, followed by Mason. Mason has a baseball game today so I took him to his house to get his uniform. I then stopped to fill the cooler with drinks and snacks for the kids and then I headed over to my sister’s to pick up her and my mom. Mason had to get to the baseball field by 4:30 but his game didn’t start until 5:30. The game was in Pine Grove and the field is right on Ridge Road which is a busy road. I took Ciara out and put her in her wheelchair and we sat by the fence but I didn’t feel like chasing Hunter around, I just knew he would get away and run out into the road. I decided to leave him in the van with the sliding door open so he could still see what was going on. About half way thru the game the batter hit the ball and it flew backwards over the fence and hit a car parked out on the road. The man ran out to move his car and I looked at John and said “What would we do if a ball flew over and hit Hunter in the head” since he was sitting there about 15 feet from where that last ball hit. Not more then 2 minutes later, a ball flew backwards again and flew right into the sliding door where Hunter was sitting, barely missing him. I guess I better watch what I say! After the game I dropped my mom and sister off at their house and we went back home. The kids relaxed and played for the rest of the evening. Annabelle’s grandmother called me, tomorrow is Annabelle’s transplant day so we chatted for a while and it was nice talking to her.
FRIDAY’S JOURNAL:
After I sent the kids off to school, I had some breakfast and tried to fix my computer. I don’t know what is wrong with it, there might be a virus or something but it just keeps doing strange things and I can’t get into some programs and files. That was about the time that John came home from work. He decided it was a good time to get some work done on the van so we dropped it off and then ran some errands. It only took an hour and then they were finished with my van and we headed home. Hunter came home from school and he had a snack and watched his cartoons. Ciara came home around 1:45 and was very grumpy and fussy. I gave her some pain meds but that didn’t seem to help. Mason came over so I dropped him off at my sister’s and we headed home. We didn’t do much for the rest of the evening, some laundry, dinner, etc. Today was Annabelle’s transplant, she is the 12th Sanfilippo child transplanted so stop by and read her journal and sign her guestbook: Annabelle's Journal
SATURDAY’S JOURNAL:
I woke up around 8:00 and started getting things ready for our trip today. I packed the kid’s backpack with their clothes, I packed a cooler with their snacks, and finished some laundry. When the kids got up we dressed them and around 10:00 we headed out. I had to make a few stops on the way, the gas station, the post office, etc. and then we went to John’s parent’s house. They are going to watch Ciara, Hunter, and our dog S’more while we are gone over night. The plan was to leave at noon because it is a 3 hour drive to Reno so we started out for my sister’s house. She called and said that she and Connie wouldn’t be ready to leave until 1:00 so John and I stopped and grabbed some ice for the cooler and snacks for the trip. We ended up having to wait until 2:15 before we could all finally leave and I wasn’t too happy about that. We weren’t able to get a room for the night and the longer it took us to get there, the smaller the chance we would get one. Anyway, we finally got to Reno around 5:30 and not a single hotel had an empty room. My sister saw a friend of hers and told her that we couldn’t get a room so her friend knows somebody that works there and after waiting for about an hour, we got a room for FREE! They gave us the room keys and said that we had a room with 2 beds but when we got up to the room, there was only one bed. We were curious how that was going to work but we decided to figure it out later. Around 7:00 we headed downstairs and goofed around until about 8:30. We had 9:30 tickets to see Ron White, comedian, and it was time to pick up our tickets and get in line for the concert. When we sat down in our seats I must say that it was a tight squeeze. They had put the chairs very close together and we were like sardines in a can or peas in a pod, take your pick. Everybody was chatting, the row in front, the row in back, and the people sitting to our right, we were all talking, laughing, and having a good time. Until the people with the seats to our left arrived. The woman was mad that Connie was talking, but so was everybody in the room and the concert didn’t start for another 30 minutes. The woman was also angry that Connie’s leg and shoulder were touching her husband’s, but we were all squished together. The woman got up and went to get security to complain about Connie but when the security guard came, he just told her there was nothing he could do, it was very stupid. The concert was great and afterwards we all had to pee VERY bad. Every single restroom was closed, yep, every restroom in the casino was closed because of some water problem. Well, only the women’s restrooms were closed, John went with no problem. By this time, after walking back and forth around the casino looking for a bathroom, I was angry and hopping on one foot. Finally, when the last man told me that all the bathrooms were closed, I told him I was going to get a change bucket and use that. Well, imagine my surprise when he showed me a bathroom I could use. Before the concert we had tried to have dinner but the lines to the buffet were very long and we couldn’t get into the restaurant until 9:30 when the concert started so by this time John and I were starving. The only place still open at 11:30 was the Café so that is were we ate and it was very good. That is when my sister called me and told me to come and get her at the Rum Room. After we finished eating I found the Rum Room and found her, I will leave it at that. I finally got her out of there and Connie said that she was going up to the room to go to sleep and she would take my sister with her. I went to find John and after a little while, we headed up to the room too, we were exhausted. We got to the room around 1:30 and that is all I remember. Well, until Connie and my sister got there. I remember my sister rolling across me and then she didn’t move again for the rest of the night. Poor Connie ended up sleeping on the floor.
SUNDAY’S JOURNAL:
John and I got up around 9:00 this morning but Connie and my sister were still sleeping. We got dressed and then headed downstairs to get some breakfast. We went to the buffet and boy was it good! After breakfast it was time to head home. We stopped to get gas and food for the 3 hour drive and then we headed home. WE stopped at John’s parent’s house to get Ciara and Hunter, oh yeah, and our dog too. When I walked in I saw Ciara sitting down, playing with her toy and Hunter was in the bedroom rolling around on the bed with his string cheese, watching Bear In The Big Blue House. We stayed there for a little while but Ciara was getting fussy so it was time to go home. When we got home Hunter ran about the house while Ciara relaxed in her recliner. A little while later John’s dad called and said that we forgot Ciara’s pain meds at their house so since it was time for her next dose and she was just starting to get fussy, John drove over there to get them for her. It takes about an hour, round trip, to get to his parents so I was very happy when Ciara took a nap while he was gone, I thought she would cry until he came back with her meds. When John came home he gave her a dose and about 20 minutes later she was walking around the living room laughing and smiling and having a good time. While she roamed around and Hunter watched TV in the bedroom, I ran to the grocery store to pick up some things for their lunch tomorrow. We had dinner when I got home and then it was bath time. Ciara's 8th birthday is in 2 weeks and I haven't even started to plan a party or anything so I better get moving on that! May 1st, the Family Support Program at Duke is having their annual Rainbow of Heroes Walk. Hunter, Tommy, Alyssa and I went while we were they last year and we had a lot of fun. I remember we couldn’t keep Tommy out of the Jump House, he was throw a fit when we made him get out just so he could get a drink and cool down. We were hoping to be there this year to walk in memory of Tommy, but it just isn’t going to work out. Alyssa is going for us so if anybody would like to sponsor her and send her a donation in Tommy’s memory to help out the Family Support program you can send her a tax deductible check made out to Duke PBMT-04RH. Don’t forget to put Tommy Bennett on the Memo line. For more information about the Family Support program you can visit their website here: Rainbow Of Heroes Website
MAIL CHECKS TO:
Alyssa Boreiko
100 Rock Spring Court
Carrboro, NC 27510
Hugs To All,
Alicia and ^^Angel^^ Tommy
Wednesday, April 21, 2004 0:51 AM CDT
SORRY I HAVEN'T DONE THE JOURNAL FOR A FEW DAYS. I WILL UPDATE ON SUNDAY BECAUSE WE ARE GOING OUT OVERNIGHT AND THE BEST PART IS, WE WON'T HAVE THE KIDS WITH US! THIS WILL BE THE FIRST TIME WE HAVE EVERY LEFT THE KIDS AND GONE OUT OVERNIGHT!
MONDAY’S JOURNAL:
Neither one of the kids wanted to wake up this morning, Ciara did alright after I gave her some juice, that perked her up a little, but Hunter refused to walk to the bus, he didn’t even open his eyes. I went back inside, washed some dishes, had breakfast, and watched my morning shows on TV. I ran out to get a few things done and then came back to get Hunter off the school bus. Ciara came home around 1:50 and Mason walked over after school. He stayed and played around outside and then John came home from work. While Ciara napped and Hunter played, I took Mason to his baseball practice and then went back home. Charlene called, she works up on the transplant unit at Duke. It was wonderful to talk to her again, it has been about a month since I spoke to her. That was about it for the rest of the evening.
TUESDAY’S JOURNAL:
After I sent the kids off to school I cleaned a little, had some breakfast, and ran a couple quick errands. I had an appointment at 11:00 and then John came home from work around 11:30. Hunter came home at 12:30 and then we went to the grocery store and went back home. We had lunch and waited for Ciara to come home. She was sleepy when they wheeled her off the bus and she took a little nap when I brought her inside. I waited for Mason to come over but when he didn’t come, I called my sister and she told me that Mason was sick and he didn’t go to school today. He was supposed to have a baseball game today but since he is sick, we won’t be going. John worked on the engine in his truck while I took care of a few other things. I made dinner later on in the evening, the kids had a bath, and then we just watched some TV and then went to bed early.
WEDNESDAY’S JOURNAL:
Ciara woke up in a wonderful mood this morning, after I got her dressed for school, she just kept laughing, bouncing, and chirping around the house. Hunter didn’t want to get up this morning and after I got him dressed he crawled up onto the couch and went back to sleep. I was surprised when he hopped off the couch 5 minutes later. He was happy and running around watching cartoons. When I saw the bus pull up to the house I opened the front door and Hunter ran out, down the driveway and the bus driver caught him at the bus door and helped him into his seat. Ciara was still smiling when they wheeled her onto the bus and then they pulled away. I had some breakfast and then got the laundry together. 60 Minutes II called and said that they are editing Tommy’s story next week and they are hoping to get it on-air by the end of June but they will let me know for sure when it will be on. After I did 5 loads of laundry it was time for Hunter to come home from school. I saw the bus pull up and before I could get my shoes on, he was already off the bus and waiting for me with the bus driver. He ran a couple laps around the front yard and then he came inside and watched his cartoons. Michelle called and said that Jillian is doing wonderful. She is laughing and standing a little and her therapists are very happy with her progress. It was about that time that my sister came over so I had to get off the phone with Michelle. My sister only stayed a few minutes because Mason has been home from school the past couple of days because he is sick so she had to get back to him. Ciara came home from school about 1:45 and she was still smiling and happy when I got out to the bus to get her. I brought into the house, gave her the meds, and sat her by the TV to watch some cartoons. My mom called and asked if I could take care of a few things for her so around 3:30 I loaded the kids in the car and went out. I picked up my sister so she could help with the kids and we were off. My mom has Parkinson’s and it is hard for her to go a lot of things these days, not to mention driving so we have to do a lot of things for her. Eventually we finally got back to our house and just relaxed for the rest of the evening. Ciara still giggled and pranced around the house while Hunter played with his toys and watched cartoons. John isn’t home tonight, he is on another run to Southern California but he will be home tomorrow. It is now 10:45 and I am exhausted. I have tried to take a nap for 2 days in a row but I still haven’t had one. Tomorrow Ciara and Hunter’s class is having an Un-Birthday Party at school so I am going to go to that. They each have to bring their favorite stuffed friend and the class will walk to the park with their stuffed animals and have a picnic. I will take pictures and post them for you all to see. 
May 1st, the Family Support Program at Duke is having their annual Rainbow of Heroes Walk. Hunter, Tommy, Alyssa and I went while we were they last year and we had a lot of fun. I remember we couldn’t keep Tommy out of the Jump House, he was throw a fit when we made him get out just so he could get a drink and cool down. We were hoping to be there this year to walk in memory of Tommy, but it just isn’t going to work out. Alyssa is going for us so if anybody would like to sponsor her and send her a donation in Tommy’s memory to help out the Family Support program you can send her a tax deductible check made out to Duke PBMT-04RH. Don’t forget to put Tommy Bennett on the Memo line. For more information about the Family Support program you can visit their website here: Rainbow Of Heroes Website MAIL CHECKS TO:
Alyssa Boreiko
100 Rock Spring Court
Carrboro, NC 27510
We are now able to receive donations thru www.igive.com. All you have to do is sign up with them¸ choose Bennett Children’s Fund, and then whenever you shop on-line, a percentage of what you spend will be donated to us.
I have been selling some of our DVDs, computer games, and other items on Ebay so I thought that I would pass the link on to you all in case you would like to see what we have up for sale. The link to our Ebay store is Ebay Store
Hugs To All,
Alicia and ^^Angel^^ Tommy
Sunday, April 18, 2004 1:10 AM CDT
CHECK OUT THE NEW PICTURES!
FRIDAY’S JOURNAL:
I got Ciara dressed for school but Hunter just wasn’t going to wake up this morning. I dressed him while he slept and then walked him out to the school bus, he was still sleeping. He didn’t even wake up while the bus driver strapped him into his harness. After they drove away I had breakfast and then did several loads of laundry. Hunter came home from school and I worked on my Ebay auctions. Ciara and Mason got home around 2:15 so I put everybody in the car and we went to pick up my sister. On the way back to our house I dropped Mason off at his baseball practice and then went home. John isn’t coming home this evening, he is hauling another load down to southern California so my sister and I watched some videos. While she stayed with the kids I ran to the grocery store to do my mom’s shopping. By the time I got home it was time to take my sister back home. On the way, we stopped at the cemetery and then I dropped her off at home. When the kids and I got back to our house we relaxed. I went to bed around midnight and Ciara was still awake and sitting in her recliner watching cartoons, but I covered her with her electric blanket so I know she went to sleep right after that, she always does.
SATURDAY’S JOURNAL:
Mason called me around 8:00 this morning to tell me that he had a baseball game at 11:00 and he was going to be in a parade at 9:00 on Main Street. I had no idea he had a game today so I called my sister and my dad to tell them about the game, jumped in the shower, and then rushed around getting everything together. I called John to see what time he was coming home and he said that he would be here around noon so I told him to meet me at the baseball field. I loaded the cooler and chairs into the car and then my sister came over so we were off to the game. Just as we were getting out of the car I saw my dad and Gloria pull up and a couple minutes behind them I saw John so everybody was there. Mason’s team lost but we still had a good time. After the game we went home and let Ciara stretch out and relax. I got a phone call from Kaiser telling me that Ciara’s prescription was in so we all got back into the car and drove to Sacramento to pick it up. As we were driving I saw a rainbow but by the time I grabbed my camera it was gone. Thank you Tommy for letting me know you were with us! We stopped at the computer store and then headed home. We had dinner and then watched TV and went to bed.
SUNDAY’S JOURNAL:
I woke up around 8:30 this morning and Hunter followed me out to the living room. We watched some TV and didn’t really do much of anything until John and Ciara woke up. We spent the morning being lazy. Hunter woke up with a runny nose but it hasn’t really slowed him down. In fact he was full of spunk so after I made lunch, we got the kids dressed and took them out, hoping he would run some energy off. We stopped by my dad and Gloria’s for a little bit and then we headed out to the grocery store and then went back home. We had some dinner and then I went into the bedroom to watch TV and Hunter followed me in while John and Ciara watched The Blue Man Group in the living room. John said that Ciara really liked it, the loud music and all of the flashing lights. It is now 11:00 and I am going to try to get them to sleep. I would like to thank those of you who have purchased some of my auctions on Ebay, you are wonderful!
I have been selling some of our DVDs on Ebay so I thought that I would pass the link on to you all in case you would like to see what we have up for sale. The link to our Ebay store is Ebay Store
Hugs To All,
Alicia and ^^Angel^^ Tommy
Wednesday, April 14, 2004 0:56 AM CDT
I AM SORRY THAT I HAVEN'T UPDATED THE JOURNAL FOR A FEW DAYS. I AM EXHAUSTED RIGHT NOW SO I WILL DO IT IN THE MORNING AND I WILL ADD SOME NEW PHOTOS TOO. I JUST FINISHED ADDING SOME NEW ITEMS TO OUR EBAY AUCTION LIST SO DON'T FORGET TO CHECK THEM OUT, THE LINK IS LISTED BELOW!
Ciara woke up around 5:30 this morning crying so I got her a cup of juice and tried to go back to sleep. She cried again around 6:00 so I just stayed up with her. She hasn’t pooped since Sunday so I think that her tummy is hurting her. Eventually I got her dressed and ready for school and then I had to get Hunter ready. He didn’t want to get up so I had to drag him out of bed, literally, and then I dressed him. When I finished, he crawled up onto the couch and went back to sleep. I made their lunches and then the bus pulled up. I stood Ciara by the front door and then I had to fight with Hunter, he just wasn’t going to wake up and walk. Somehow I got them both out the front door and as we got to the driveway I let go of Hunter and he walked towards the bus driver and she put him on the bus while I got Ciara’s wheelchair out of the back of my van and strapped her in. After the bus pulled away I went inside and enjoyed the moment of quiet. After an hour or so I went out to run a few errands, did the grocery shopping, went to the post office, then I headed home. I started making taco meatballs and then Hunter’s school bus pulled up. I couldn’t wait for me to get there to help him off the bus, he jumped off and run up the driveway and into the house. While he watched his videos, I finished making the meatballs. Just as I finished the last one, Ciara’s bus pulled up so Hunter and I went outside to get her. I wheeled her into the house and she and Hunter watched some TV while I cleaned up the kitchen. Just as I finished, Mason came over so he had a snack and we watched TV for a little bit. My sister called and said that she would be late picking up Mason so that meant that I had to take him to his baseball practice. Around 3:15 I loaded everybody into the van and drove to the field. After I dropped Mason off I stopped at the gas station and then headed back home. We just goofed around and didn’t do much of anything else for the rest of the evening. John finally got home from work around 7:00, just as I was feeding the kids their meatballs, so he ate too. I gave the kids a bath later on and then we just relaxed and Ciara went to bed. It is now 11:00 and I am going to watch Letterman.
Many of you have been asking me how Jillian is but I didn’t want to say anything because I didn’t know what I should say or what her family wanted me to share. They don’t have internet access right now but you can visit Jillian’s journal here: Jillian's Journal Michelle called me this morning and said that their local newspaper ran a story about Jillian today and she gave me permission to post it for you all to read: Jillian's Article
I have been selling some of our DVDs on Ebay so I thought that I would pass the link on to you all in case you would like to see what we have up for sale. The link to our Ebay store is Ebay Store
Hugs To All,
Alicia and ^^Angel^^ Tommy
Tuesday, April 13, 2004 11:34 PM CDT
After I sent the kids off to school I did a little cleaning and cut some coupons. I had to run to the store to get some cat food and dog food, we were out, and then John called and said that he was on his way home. He had to go out to the desert again so he didn’t come home last night. When he got home we went to the animal shelter to pick up our other new kitty. He is a large black cat with 7 toes on each foot, he is funny. When we got back home we let him roam around the house and he was very good. Hunter came home from school around 12:30 and immediately turned on his TV and watched a video. While he was watching the video he got excited and screeched and that freaked the cat out and he started running laps around the house. John put his blanket up on top of the book case and the cat sat up there and looked out the window, very happy that he was up high and away from Hunter and the dog. Ciara came home from school and was a little grump so I took her out of her chair and she sat on the couch but wasn’t happy still. Mason came over and I had to take him to his guitar lessons so John held Ciara on his lap which made her happy and I left. When I got back home Ciara was sleeping on the couch and Hunter was still watching his cartoons. He eventually fell asleep in the recliner but by that time we had to go to Mason’s first baseball game. We changed their diapers and headed out to the game. The past few days it has been 90 degrees but today it was in the 70’s and it is supposed to rain tonight and tomorrow so it was a little windy and cool when we got to the field. Ciara did alright for a little bit but she got cold and she started crying. We put a jacket on her and then I got her up and walked her around. Hunter had a great time watching the game, having a snack, and hitting my sister in the arm. Eventually I had to put Ciara in the van so she could warm up and then she was happy. Mason’s team won the game so after it was over we went back home. I made dinner and we watched some TV and then I worked on my Ebay auctions. It is now 9:40 and we are watching the President on TV.
DON’T FORGET TO CHECK OUT THE NEW PHOTOS!
I have been selling some of our DVDs on Ebay so I thought that I would pass the link on to you all in case you would like to see what we have up for sale. The link to our Ebay store is Ebay Store
Hugs To All,
Alicia and ^^Angel^^ Tommy
Monday, April 12, 2004 10:29 PM CDT
Ciara woke up crying around 4:30 this morning but I got her to go back to sleep a few minutes later. She woke up again around 6:00 and again I got her back to sleep a few minutes later, after another cup of juice. I tried to go back to sleep but I couldn’t so I went out to the living room and watched some TV. I gathered up the laundry and by that time it was around 9:00. Ciara was out of her pain meds so I got the kids dressed, put them in the car and headed to Kaiser in Sacramento to get her meds. We went thru the drive thru to get the kids something to eat because Ciara was fussing and then I went to Kaiser. When I got to the pharmacy there was a long line that we had to wait in. Hunter was not happy when we got there, he cried, screamed, hit me, and threw things around. I am sure that people thought that I was the worst parent in the world because he was acting that way but I don’t care. Everybody kept staring at Hunter and giving me funny looks as Hunter slapped me and pulled Ciara’s hair. There was one lady who must have recognized us from newspaper articles because she asked how the kids were doing so I think that maybe made a few other people catch on. Hunter kept him temper tantrum up for 20 minutes, until I got up to the counter, then for some reason he started laughing and laughing, go figure. I got the meds and we walked back out to the car and headed home. When I got home I did 5 loads of laundry and finally around 5:00 I got to sit down and relax. Hunter bounced around the house and Ciara roamed around the living room. We had dinner and that was about it for the evening. They go back to school tomorrow so I will have a few hours to myself and I can actually go to the grocery store, yeah! Well, it is 10:15 and Hunter hasn’t stopped climbing and running, until now. I turned on the Miss USA contest and as the girls were walking out in their bikinis, Hunter stopped, stood in front of the TV clapping his hands, dancing, and chatting at them Who knew he had a thing for skinny blondes?!
I am asking for some help. I am hoping that you have a few quick and easy fundraising ideas for me. I had mentioned in our journal about our upcoming trip to Duke a while ago but here is what is going on. It was the day before or day after Tommy's funeral when I received a phone call from Dr. Kurtzberg. We talked about Tommy and then she mentioned that she was working on something that would be ready to help Hunter and Ciara in about a year. I don't know too much about it yet but all I know is that they inject the stem cells right into the spinal cord/fluid and the stem cells get to the brain a lot faster then the transplant that Tommy had. It takes 6 months from the day of transplant for the stem cells to get to the brain but the new way is a lot faster, it has been proven in the lab rats. Dr. Kurtzberg is going to be doing follow-up testing on Ciara and Hunter (MRI, EEG, etc) to monitor the Sanfilippo damage. The problem is that Duke is not a Kaiser hospital and we have to come up with $3,000 to $4,000 in the next two weeks because they want us there around May 1st. THANKS!
If you would like to help raise money for us while you shop on-line all you have to do is go to www.igive.com. Just sign-up and choose BENNETT CHILDREN'S FUND as your grou to support. We will get a percentage of what you spend donated to us.
Hugs To All,
Alicia and ^^Angel^^ Tommy
Sunday, April 11, 2004 0:00 AM CDT
YIPPEE! I didn’t wake up until 9:45 this morning! As soon as I got up I had to start getting everything ready for the day. My dad stopped by with some cards and my birthday present, thanks dad and Gloria, it was exactly what I wanted! I then stuffed Easter eggs, finished making a basket, wrapped the prizes for the Fear Factor games at the BBQ, make the food and then get everybody dressed and out of here by 12:30. I had to drive by the cemetery on the way to the park and I cried. Last year we were at Duke and Hunter and Tommy were at Maple View Farms hunting eggs. Tommy didn’t want the little plastic eggs, he wanted the giant eggs that were the decorations and were as big as his head. He had so much fun that day and it sucks that he’s not here with us today. When we got to the park I got a few birthday cards from some friends and Connie gave me a dozen roses, thanks Connie! My mom and my sister arrived and my sister was dressed as a deviled egg. Since we were late getting there I didn’t have time to stop at the store so while John and my sister stayed there with the kids, I ran to the store to get ice and water. As I was waiting in the check out line John called and said that they were about to start the egg hunt so I got there just in time to hunt with the kids. John helped Ciara get a few eggs and then he took her back to sit down. My sister and I helped Hunter get a few but he wanted to play more then hunt. When the hunt was over we emptied out their eggs and they got a few dollars and some candy. By this time it was time for John to go to his parent’s house for Easter dinner so while Ciara sat and watched, Hunter and I hunted eggs with the older kids and he found another dollar in an egg. Hunter’s knees were just covered in dirt with a few scrapes but he was having a ball! His knees weren’t as bad as my sister’s. Apparently she took Hunter down one of the slides but as hunter was sliding down he jumped off and my sister slid off and landed on her knees and scraped them up pretty good, they bled for a while. Hunter disappeared but we found him a few feet away taking a little girl’s chocolate and eating it, she wasn’t very happy about that at all, but Hunter was pretty proud of himself. I put Ciara in a regular chair and strapped Hunter into Ciara’s wheelchair so I wouldn’t have to chase anybody for a few minutes, then I gave them some cheese to munch on. I let them open their Easter baskets and then they played with their toys while I sat and talked with some friends. We were getting pretty hungry but everybody was still playing games so I ran to KFC and got some chicken for the kids and my mom, they were happy once again. By this time it was around 4:00 and Hunter was still going strong. He did eventually sit down on the grass so I sat Hunter next to him to try and get a picture of them together but Ciara started scooting around and Hunter started poking and shoving her and then he tried to run away again. After I strapped him in the chair again I looked at Ciara and she was still sitting in the grass, feeling it with her hands and chattering and laughing, she must like the feel of the grass. A few minutes later I saw her, she was still sitting there but her head was lowered, yep, she was sleeping. My sister picked her up so hold her but she woke up and was ready to go. We stayed at the park until about 5:30 and then I was ready to go back home and Ciara was too. She was fussing and I forgot to bring her pain meds so we had to get back home. I loaded everything and everybody into the car and then drove my sister back to her place. John called and asked if I would bring the kids up to his parents so I did but I told him we could only stay a minute or two because Ciara wasn’t happy. We stayed long enough for the kids to open their Easter baskets and the kids had some birthday cake and we headed home. On the way home we stopped at the cemetery and then headed home. John gave Ciara her meds right away but that didn’t help, she continued to fuss and cry for an hour. John sat her on his lap and a few minutes later she was asleep. Hunter was still going strong and it was 9:00! It is now 10:00 and Hunter hasn’t slowed down yet, HELP!
DON’T FORGET TO CHECK OUT THE NEW PHOTOS!
Hugs To All,
Alicia and ^^Angel^^ Tommy
Saturday, April 10 2004 0:57 AM CDT
Ciara woke up crying around 6:30 this morning so after she got her meds and some juice, she went back to sleep, but I didn’t. I got up and decided to watch a movie, I watched “SWAT.” When Hunter woke up he joined me in the living room but he popped in his own video and ran back and forth between his TV and the TV in the bedroom. John came home from work around noon or so and then we went to Sacramento to Costco to pick up a few things, then we went home. On the way home we stopped and bought a flat of strawberries so I am going to make strawberry shortcake. By the time we got home it was 6:30 and we were supposed to meet my mom and sister at 7:00 for dinner. My birthday is tomorrow but everything is going to be closed because it is Easter so we are celebrating tonight. John changed their diapers while I made the strawberry shortcake and then we were on the road again. I dropped John off at my mom’s house so that he could drive her to dinner, my mom has Parkinson’s and can’t drive, and then I picked up my sister at he work and we met everybody at the restaurant. I was surprised to see that John’s cousin don even showed up so we were going to have some fun. Hunter laughed and screeched the whole time we were there. Ciara was fussing when we first got there but by the time the food came she was happy. After dinner I dropped my sister off at home and John drove my mom back to her house and then we went back home. John and Don went out to play a couple games of pool while I caught up on everybody’s journals. Ciara is very fussy this evening, it is 11:00 right now, so I am going to get her some juice and hopefully she will fall asleep soon. I still have to stuff the plastic eggs for the easter egg hunt tomorrow and then I have to make the Chinese chicken salad and garlic bread in the morning to take to the party. I don’t feel like doing the same thing we did when Tommy was with us so some friends are having a big BBQ, egg hunt, and they are going to play Fear Factor games (should be interesting) so I am taking the kids to that with my mom and my sister. I should have new photos to put up tomorrow evening.
I hate to have to write this again, but I just found out that we lost another special little friend. Our little buddy Julien lost his battle with Leukemia, he was 2 years old. Please remember him and his family tomorrow (Sunday) during your Easter prayers and stop by to sign his guestbook Julien's Journal
Hugs To All,
Alicia and ^^Angel^^ Tommy
Friday, April 9, 2004 10:41 PM CDT
Since the kids didn’t have to go to school today I was very happy that I got to sleep in. Of course that didn’t happen, I still woke up at 6:30 and I couldn’t get back to sleep. Ciara woke up around 7:30 so I gave her her med and she went back to sleep for a little while. After they both woke up we had breakfast and then watched some TV. My sister called me and said that Mason was bored at his dad’s and needed a ride to her work so I got the kids dressed, picked up Mason and took him to Bonanza. After that I took the kids for a drive and then we went home. When I got them home my sister called and asked if I could pick Mason up at 3:00 and take him to his baseball practice so I loaded the kids back into the car and picked up Mason. She said that she had to stay at work for a little while still but she would be at my house at 4:00 to work on our paper mache project. After I dropped Mason off I went back home and waited for her, as usual she didn’t show up. I am getting a tired of doing everything for everybody else and getting nothing back so we are going to have a little chat tomorrow. Anyway, Ciara, Hunter, and I spent the evening having dinner, watching cartoons, playing and just goofing around. John isn’t coming home tonight, his company sent him back down to Southern California. He called me from Bakersfield and said he will be home around noon tomorrow. Wish me luck, I am going to try to sleep in tomorrow morning!
DON’T FORGET TO CHECK OUT THE NEW PICTURES!
Hugs To All,
Alicia and ^^Angel^^ Tommy 
Thursday, April 8, 2004 11:52 PM CDT
WEDNESDAY’S JOURNAL:
After I sent the kids off to school this morning I went out to run a few errands and I washed my car. When I got home I decided that I should eat some lunch in peace before Hunter came home from school. John isn’t coming home tonight because he is hauling a load, for work, down to Southern California and he won’t be home until tomorrow. So, Hunter came home from school and he had a bite to eat and then played until 2:00 when Ciara came home from school. Mason walked over after school and my sister was supposed to pick him up at 3:30 and take him to his baseball practice but she didn’t so I took him. We had to stop at his house to get his cleats and then I dropped him off at the field. Of course it is a dirt road that leads to the baseball field and I had just washed my car so now it was very dirty again. Mason said that he left his catcher’s mitt in his backpack at home so I drove back to his house to get the mitt and then dropped it off to him. It was now time to meet my sister so I went to her house and took her to the laundry mat. While the clothes where washing we went to the animal shelter to pick up my new cat but he wasn’t there. He was still at the vet’s office getting his tests and they said that I could pick him up tomorrow. After we finished the laundry the kids and I went back home. We relaxed and took it easy for the rest of the evening. I made lasagna for dinner and Ciara couldn’t eat enough of it. She had a very good day today, she didn’t cry or fuss at all and laughed a lot tonight.
THURSDAY’S JOURNAL:
Hunter just did not want to get up this morning, he was still sleeping as we walked out to the bus. The bus driver had to carry him to his seat and he was still dozing while she strapped him in. I went back into the house and turned on the TV. All of a sudden I decided to look at the school lunch calendar and I saw that there is no school tomorrow. That meant that I had to hurry up and finish putting together the Easter surprises for their class, pick up a snack and get to school before snack time. When I got there the kids were just finishing up with circle time and the table was already set for snack time so I wasn’t too late. Usually they have snack at 10:00 but on Thursday’s they have music class and I forgot they had to have snack early so that they could get the music in time. Anyway, Ciara ate a lot and Hunter and the rest of the kids enjoyed their chocolate sugar cookies. I decided to stay and go to music class with them so we walked over to join Mrs. Evans, the singer. I have heard stories about Mrs. Evan, she always wears silly outfits and costumes every week and today I wasn’t disappointed. She walked in wearing a spring green sweater with chicks all over it and a BIG straw hat with a GIANT stuffed chicken on top with the legs and dangled down the side of her head. The kids had such a good time singing and dancing along as she played her guitar. They sang Day-O, Here Comes Peter Cotton Tail and they all danced the Chicken Dance. Ciara was awake for a little bit but since she had a very full tummy, she fell asleep. Hunter was kicking his feet, clapping his hands, bouncing n his seat and smiling and chatting the whole time, it was so much fun! After music was over it was time for recess so I went out with the kids. Hunter ran around, played on the slide, and then dug around in the wood chips while Ciara napped in the sunshine. When recess was over I went home and was surprised to see John was already home. We decided it would be a good time to pick up our new cat at the animal shelter so that is where we went. He hadn’t gotten his rabies shot so when we left the shelter we stopped at the vet and he got his shot. On the way home he was not happy to say the least and when we got home John held him and then took him outside and he has been running around the neighborhood having a good time. Hunter came home from school around 12:30 and an hour later Ciara came home. She was sleeping so I left her home with John while I took Hunter with me to pick up Mason from school. I dropped him off at my sister’s work and then we headed back home. Ciara was napping when we got home so Hunter took off running around the house for an hour or so while John went out to do a few things. As I was typing this I happened to glance over to see what Hunter was doing and I saw him sitting on the couch sucking on a stick of butter. What a goofy kid! After we had dinner Ciara snuggled with John while Hunter perched himself on me and we watched The Apprentice together. It is now 10:00 and it is, hopefully, time for the kids to go to bed but somehow I don’t think that is going to happen.
I PUT UP ONE PICTURE SO CHECK IT OUT!
Hugs To All,
Alicia and ^^Angel^^ Tommy
Tuesday, April 6, 2004 0:11 AM CDT
OH NO! I DID MY JOURNAL TWO DAYS IN A ROW! I AM SO PROUD OF MYSELF!
After I got the kids dressed I put them on the bus and relaxed in peace and quiet. After I had a bite to eat I started putting together the Easter surprises for their class. John came home early from work today so we went out to the grocery store and then we stopped at the animal shelter. I have been wanting to be a cat lately so John took me there to see what they had. We fell in love with a huge orange tabby cat and then they had a large black cat with 7 toes on each foot. Since we could leave either one of them there we are going to get them both. We can’t pick up the orange one until tomorrow afternoon and the black one can’t leave until the end of the week in case his owner wants him back. After we left there we went home. Hunter came home and was in a very happy mood, he even tried to drive the school bus but we caught him before he could. Ciara came home so I brought her inside and sat her in the recliner, gave her some meds and then she fell asleep. I put Hunter in the car and we went to pick up Mason at school and then took him to his guitar lesson. When we got home Ciara was still sleeping and Hunter started one of his videos so John and I watched some TV. John went back to work to load his truck and then he came home and did some work outside. We had dinner with my sister this evening and then we went home and I gave the kids a bath. Hunter then ran around from the TV in the bedroom his TV in the dining room while Ciara drank her juice in her chair. It is now 10:00 and I am hoping that they will go to bed in the next hour.
I don't have an exact date yet but I do know that our Golf Tournament will be in August. When I have more information I will pass it on to you all.
Hugs To All,
Alicia and ^^Angel^^ Tommy
Monday, April 5, 2004 0:13 AM CDT
SATURDAY’S JOURNAL:
When I woke up this morning John had already gone to work. I spent the morning cleaning and unpacking boxes. It was a very boring day, eventually I got everybody ready and we went for a drive and then to the grocery store. John came home from work and we just stayed in. The weather has been wonderful here, sunny and nice. That was about all that happened today.
SUNDAY’S JOURNAL:
YEAH, we got to sleep in this morning, even with the time change! After we all got up and had a bite to eat we did a few things around the house. In the afternoon we went out for a few hours and then had lunch. Hunter surprised me by not only eating his meatballs, he ate ALL of his macaroni, Ciara ate very well also. When we got home around 5:00 we did more work around the house and then had a late dinner. Michelle called and said that Jillian is doing very well so that was great to hear. Ciara spent the evening sitting in her recliner so around 1:30 AM she still wasn’t sleeping and had LOTS of energy to get rid of. She walked around the house, roaming around the living room, dining room, and bedroom. Somewhere around 2:30 I put Ciara back in her recliner with some juice and I turned on the cartoons and then I tried to get Hunter to go to sleep but he kept screaming and crying. He didn’t take a nap at all today and he was just over tired and that makes him very cranky at night.
MONDAY’S JOURNAL:
Hunter and Ciara didn’t go to sleep until 3:00 or so this morning so I didn’t send them to school, we needed some sleep. But, of course I had to get up at 6:30 to call the school bus to tell them not to pick up the kids and then I couldn’t get back to sleep. So, I watched some TV and then around 8:00 Ciara woke up so I gave her her meds and some juice and she watched some TV and then went back to sleep around 9:00. Hunter woke up around that time so he had a bite to eat and then ran around the house. John came home around 11:00 and then my sister came over a few minutes later. Hunter went goofy when she walked in, running up to her, smacking her, laughing and then running away. She has to make a paper mache piñata of her boss so we started working on that and let me tell you, it is hysterical! When we finally finish it I will take a picture of it for you. When we moved into this house there wasn’t a stove so the landlord bought one but there wasn’t a hood/vent so there was no where for the smoke to go. A few weeks ago we asked if he would put one in and today he came over with a hood/vent that is also a HUGE fancy microwave, it is so awesome! He and John worked on putting that in while I took my sister to pick up Mason from school and then I took them home. When I got back to our house Ciara was still sleeping so I worked on the paper mache a little more and then it was dinner time. I ran to the grocery store and then we had tacos. Ciara really enjoyed her dinner but Hunter didn’t want any s
