Wednesday, January 7, 2015 5:16 PM CST

It is with a broken heart that I type the following words

Hunter passed away suddenly and unexpectedly this morning. His mom was by his side and he died peacefully. He is now in heaven with his little brother Tommy. Please pray for John, Alicia, Ciara and the entire family. All of our hearts are broken.

I will update again when I have funeral arrangements.

With Love,

Alyssa - Godmother

Sunday, March 16, 2014 8:11 PM CDT

This is Alyssa with an update. As most of you know Hunter was admitted to the PICU a little over 3 weeks ago with pneumonia and both lungs partially collapsed. While one lung has improved the other has not. He remains in the PICU on the bi-pap. This morning John woke up to find Ciara was blue and not breathing well. He rushed her to the ER and she was admitted as well and is now in the PICU with pneumonia. Both kids are now very sick and on bi-pap machines to help them breathe. So far they have been able to avoid being placed on a ventilator, but Ciara has had some scares today where it has come close. Tomorrow morning Hunter will have a bronchoscopy and they will discuss from there if he needs a trach, they are also thinking perhaps Ciara needs one as well. As you can imagine Alicia and John are very overwhelmed. This has all happened so fast. Please keep all of them in your prayers. Either her or I will update as things progress.

Thank you

Alyssa

Monday, July 22, 2013 3:54 PM CDT

Wow, it’s been a LONG time since I updated, I am so sorry! A lot of things have been happening since our last update in November. We had a quiet Christmas since John had to work but the kids were doing pretty well. Hunter had his 15th birthday in March so that was a milestone I didn’t think he would ever see. Hunter is pretty much on oxygen 24/7 for the past year but he is still the feisty Hunter he always has been. Ciara turned 17 years old in May so we had a joint birthday party for Ciara and Hunter and invited a few of their local friends to come for their Cinco De Mayo birthday party, we had a lot of fun. After fighting for three years to get Sleep Safe Beds for the kids, last month Hunter’s bed was finally approved and delivered. Ciara’s Sleep Safe Bed is going to be delivered day after tomorrow, I can’t wait! Also, after 17 years of lifting children and countless back injuries because of the lifting, we finally got funding and had a track lift system put into the house so now we don’t have to lift the kids anymore, woohoo! We are planning on going to the MPS Conference in October which will be in San Antonio Texas. Since the kids have fly anymore we will have to drive from California to Texas, not sure how that is going to go LOL. Not much else happening around here since my last update which is a good thing, Ciara and Hunter have been doing fairly well (knock on wood).

Oh wait, there is one little thing I forgot to mention, WE MOVED! For the past two years we have had our eye on a specific lot on the golf course and they finally started building this neighborhood about a year ago. After many many months of going back and forth on which model we wanted to build we finally settled on one for the main reason that it was the only model that had a garage big enough to fit our giant wheelchair van LOL. So we signed papers on the house in November and it was completed in March and we were able to move in a few days before Hunter’s birthday in March. Since we moved we have just been busy getting settled and just enjoying golf course living. For the Fourth Of July we had a block party which was the second neighborhood get together in the past month. It has been so wonderful meeting all of our new neighbors, most of them moved here from the bay area and out of state. We have lived in Ione for 16 years and never even knew the names of our neighbors before we moved here so it is just so different living on this side of town. Plus everybody on this block has been so wonderful with Ciara and Hunter which makes me so happy. We are inviting to a neighbor’s house for dinner this week and they just finished building their swimming pool and keep inviting Ciara and Hunter over to swim. I haven’t taken them yet because I haven’t found their swim suits in all of the boxes in the garage we have yet to unpack LOL. So if you would like our new mailing address please send me an email at mps3mom@gmail.com, we are NOT using our old address which was the PO Box in Ione. I guess that’s all for now, I will try an update for frequently now that my computer is up and working again and we are settled into our new house. Thank you all for continuing to check in on us after all these years! Below are a few pictures taken since our last update. You can see pictures of our new house here, actually pictures of the lot and pictures I took of the model house: HOUSE PICTURES


Ciara - Christmas 2012


Hunter - Christmas 2012


Hunter's 15th Birthday


Ciara's 17th Birthday


Hunter's Sleep Safe Bed


Ciara On Friday


Hunter On Friday


Track Lift Installed In Living Room Above The Kids' Recliners. It Was Also Installed In Their Bedrooms And Bathroom.


Our New House We Built




and ^^Angel^^

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Friday, November 30, 2012 1:23 PM CST

Since my last update things have been going fairly well. In October we went to Knott’s Berry Farm for our anniversary and had a great time. We started off the day having brunch at Knott’s and then Ciara and Hunter got to Trick Or Treat with Snoopy and the Gang, can’t beat that!



The other reason we were in Southern California was for the 1st Annual MPS Poker Ride. Here is a little video clip I took of the MPS/ML Angels Memorial part of the day:

http://youtu.be/FzP7ph6BRvo
http://img.photobucket.com/albums/v412/oshabb/Misc/Family and Friends/28764_10151268061475560_695527063_n.jpg

For Halloween Ciara and Hunter went has ducks in honor of our Sanfilippo buddy Henry. Henry’s little sister wrote a story for school which won 3 place in a contest, it was called “Henry The Duck” Here is a link to Henry’s sister reading her story which is illustrated by her:

http://youtu.be/4oJOnWpXG2k





November 25 was Tommy’s nine year Angelversary. I can’t believe it has been that long since I last saw his little face. In memory of him we went out to dinner with John’s cousin Don and his son Wesley and we let a balloon go for Tommy: http://www.youtube.com/watch?v=i5d32tWmQas

On Friday I took the kids to the tree lighting. John was working so we met Kim, Tom & Scotty (MPS-II) there and we had a great time seeing Santa!






Two days ago Ciara and Hunter had their routine doctor appointment with the Pulmonologist. I was surprised when she said Hunter didn’t sound good, he was looking OK. She gave him some antibiotics and we headed home. He was doing OK until yesterday afternoon/evening when he took a nosedive. I worked on him for a few hours, breathing treatments, constant suctioning, shaky vest, etc. Because his airway is so tiny and because of all of the suctioning I had to do, his airway because swollen and was bleeding a little bit and things just got worse. Don’t forget, Hunter has ITP which means his spleen eats his platelets and without platelets your blood will not clot so anytime he bleeds it scares me. When John came home I asked him what he thought about the weird noise Hunter had just started making and he was really worried so I started getting him ready for the hour drive to the ER. When I got him strapped into his wheelchair and settled in he stopped making that strange honking/gasping noise and started to calm down. We decided to keep him home and see how he did instead of dragging him out into this horrible rainy windy weather. He kept us up all night but his airway seems to be a little better. I guess we will just keep doing what we are going and hopefully today he will have had enough antibiotics in his that he will start to get better. Ciara has been doing very well lately but this morning she has had two seizures so please keep them both in your prayers.

If you would like me to send you a Christmas card and picture please email me your name and address and I will add you to my list, thanks! Mps3mom@gmail.com

and ^^Angel^^

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Thursday, September 6, 2012 2:22 AM CDT

Saturday we took the kids to the Logging Jamboree in Arnold, up near Big Trees. That night Ciara was up all night with breathing problems and Hunter started up around 2:00 AM also with breathing problems so I assumed it was allergies from being up in the redwoods. Sunday was a better for Ciara but not Hunter. He spent the day on oxygen and getting breathing treatments. When I woke up Monday morning I went to feed the kids and get them up when I noticed that Hunter was breathing really fast. John was at work so I sent him a text message telling him about Hunter. Then I put Hunter in his wheelchair, gave him a breathing treatment and then 20 minutes with his shaky vest. As soon as the vest treatment was over he really started having trouble breathing, he was retracting, his pulse ox was down to 77 on two liters of oxygen and he was making a horrible noise so I called John at work and told him I was going to take Hunter to the emergency room. So in the time it took me to get the kids fed, meds given, bag packed, kids dressed and in their wheelchairs John came home from work. Just as he got home Hunter started breathing a lot better and his pulse ox came back up although he was now on 5 liters of oxygen and his pulse was now 90. We were going to take him to Sutter Memorial ER in Sacramento (an hour drive) but since he was doing better we thought that maybe he just had a mucus plug that shook loose during his treatments and since he coughed it up he would be OK so John took him to our local ER at Sutter Amador just to be safe and have him checked out, I stayed home with Ciara. It turns out Hunter had a pneumonia in his right lower lobe so that bought him an ambulance ride to the PICU at Sutter Memorial. So John followed the ambulance to Sutter Memorial and Ciara and I met them there. John said he would stay the night with Hunter so when it started to get dark outside I took Ciara home.

The next morning right before Ciara and I headed back to the hospital she had a big seizure and then had another seizure on our way there. When I rushed to get the back packed the day before I forgot to put Diastat in the bag so we didn’t have any to give her to stop the seizures. Since I was staying the night I ran out to get some food the dinner and the morning so I wouldn’t have to leave later on and while I was out Ciara had five more seizures. As soon as I got back to the hospital John took her home and by the time he got there she had had a total of 11 seizures that day. Once he gave her the Diastat she was knocked out and didn’t have anymore. Hunter was doing alright that day, had a rough patch when they wouldn’t listen to John about what he needed but once they finally listened and he got over it but it took three hours and he was worn out by then. This morning Hunter was still doing OK so I told the doctor that we were taking him home so get everything ready. He said he had to check some lab results and if they were good we could go home. So when John and Ciara arrived we ran out to get some lunch really fast and when we got back they told us that Hunter had an episode so they increased his oxygen and now he had a fever. Turns out they couldn’t suction him and he was so agitated because he couldn’t breath that he worked himself into a tizzy. So I suctioned him and he calmed down, temp went down and we told them we were taking him home, they weren’t doing anything there that I don’t do at home anyway so we left. Because nothing seems to ever go right for us we only had half a tank of oxygen for the ride home and no suction machine so John drove the van home with the kids and I drove the Challenger but I had to stop to get gas. As I was pulling into the gas station I saw the van stopped on the highway ahead. I called John to see what was wrong and he said Hunter was having a rough time breathing so he did what he could and then took off again for home and after I filled the tank I was back on the road not too far behind them. All of a sudden, out of nowhere, there it was a rainbow! I grabbed my cellphone to call John but as I was about to dial, he was calling me. He said that all of a sudden Hunter was fine and looking out the window and that was the same time we both saw the rainbow. So we have to say “Thank you Tommy for always being there to help Hunter and Ciara get better!” Here is a picture I took when I saw the rainbow, funny it was at the turn off to Ione, Tommy was showing us the way and telling us everything was going to be OK.




Here is a picture of Hunter and Ciara at the Logging Jamboree:




Tommy's birthday is September 18, he would have been 13 years old this year. You all know that to us, a ladybug represents Tommy. What I would love to do is have everybody paint a stone to look like a ladybug, no bigger then a baseball but they can be small stones too. Mail your ladybug stone to me so I can have my Tommy ladybugs with me all the time. Once we move they will be placed outside so make sure the paint is waterproof. You can mail them to:

Tommy Bennett
PO Box 1423
Ione, CA 95640




and ^^Angel^^

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Monday, September 3, 2012 4:51 PM CDT

Alyssa here....Alicia wanted me to update to let everyone know that Hunter went to the hospital today and is being admitted as he has pneumonia. She or I will update when more is known. As always...your prayers are appreciated.

Thank you....Alyssa

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Wednesday, July 4, 2012 11:21 AM CDT

Well, it has been quite a while since I updated you all on Ciara and Hunter. Since our last update things have been rocky for the kids. I believe I left off on Hunter’s 14th birthday which was fun. We had a birthday party for him and then went to the Rivercat’s baseball game which is always a great time.

HUNTER’S 14TH BIRTHDAY PARTY




Ciara hit a HUGE milestone, she turned 16 years old on May 7, woohoo!!!! So what do you do when your daughter turns 16? Well, we went to Las Vegas baby! It was almost a 9 hour drive to Las Vegas and when we got there Ciara immediately started to have respiratory problems because of the sand/dust storm they were having so she was on oxygen and getting treatments all night long. The next day the air was a lot better so she was happy. We took her to the chocolate factory and the cactus garden which was fun. The next day Andrew joined us, his son Alan is 4 with Sanfilippo and was transplanted at Duke a year ago so that was great to finally meet them. Because of the long drive back home Hunter got a pressure sore on his tailbone which he still has over a month later. No matter what I do I can’t get it to go away. It is so hard to keep him off of that area so say a prayer that it doesn’t get any worse. Hunter also is cutting 6 new teeth so as you can imagine, he has been a little grumpy these days. We finally figured out what was making him scream for months. It turns out the Ativan was reacting with his Elavil so no more Ativan for Hunter. The kids also just got their feeding buttons changed last week from BARD buttons to AMT Mini One buttons so they are healing and getting used to the new buttons.

HUNTER & CIARA IN LAS VEGAS AT THE CACTUS GARDEN FOR CIARA’S 16TH BIRTHDAY




Last night we took the kids to watch the fireworks with friends and family in Jackson so that was fun. Ciara doesn’t look great in this pic but she really was having a great time, just a bad pic LOL.

WATCHING THE FIREWORKS




After two years of trying to get them wheelchairs that fit them it finally happened, they both got new wheelchairs! Because of Ciara’s scoliosis they made a custom molded seat for her which is fantastic and Hunter’s chair has a lot of padding which is old chair had none so I hope he is happier and they are both more comfortable in their new chairs. Well, I guess that’s all for now, things are still trucking along around here, crazy most of the time but we are still hanging in there. Thank you all for checking in on us and please sign the guestbook so we know people were here. Thanks!

CIARA & HUNTER GOT NEW WHEELCHAIRS







and ^^Angel^^

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Monday, March 26, 2012 12:49 AM CDT

Again I have to appologize for not updating you all since January. Things have not been going very well around here so this journal was the last thing I was thinking about. Since I last updated we have switched Hunter back to his original formula and that seems to be working much better for him. Of course with all of this warm weather we have had here both kids have been dealing with allergies. As you can imagine that is pretty rough on them. Hunter has been screamiing for hours every night, ALL night for weeks and I think we finally figured it out. One night while I was holding him and watching him it reminded me of when he was having a reaction with two of this medications. Because of the allergies I have been giving him Benedryl which looks like it reacts with his Elavil. I stopped giving him Benedryl 3 days ago and he has been so much better.

Yesterday was Hunter's 14th birthday, woohoo! We will be having his party this weekend since John had to work all of this weekend. Ciara will be 16 in 6 weeks, I can't believe it. We will be celebrating her 16th birthday in Las Vegas because it is amazing that she has made it to this age. I guess that's it for now, thank you for checking in on us and don't forget to sign the guestbook so we know you were here.

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Monday, January 23, 2012 1:01 PM CST

I am so sorry it has been a couple of months since I last updated. It has been a rough couple of months around here. The first week of December Ciara was in the PICU for pneumonia. Thankfully she was only in the hospital 3 days but this was the first hospitalization since we do not have Kaiser anymore so it was a huge eye opener and we learned a lot and now have a game plan for the next time one of the kids needs to go to the ER or hospital. Since that time I haven’t had much sleep at all because if Ciara didn’t have me up all night because of her respiratory problems then Hunter had me up all night because he was screaming because his tummy hurt. It took me a while to figure out it was his tummy but eventually I did. His tummy was hurting because we switched his formula to one that he had been on a couple years ago before they discontinued it. Ciara is still on that same formula because they started making it again so I switched Hunter back to it because I thought it would be easier to have both kids on the same formula. Once I realized what was sing his screaming I called our new GI doctor and asked her to change his formula back to what he was one two months ago. She insisted that his pain was because he was constipated, I knew he wasn’t and told her so. But she insisted we do an xray to see if he was impacted, the xray showed he wasn’t. So the doctor told me they discontinued making the Isosource HN formula which I didn’t think they had but she insisted they did and told me to drive an hour to her office and she would give me samples of a different formula to try. We picked up the samples and gave it a try but Hunter screamed all through the night again. I thought I would give it one more day with this new formula but I only gave him half a bottle and mixed it with water which he tolerated much better. I continued to do that for another day until I was almost out of the samples so I called the doctors office to ask her to have some sent to our house. In the mean time I had found out that Isosource HN was NOT discontinued and told the doctor that so she agreed to finally order it and have it sent to our house. Of course it took her two days to call me back and by the time she agreed to order it was Friday. So I called Apria who delivers all of our medical supplies and told them that I was out of formula and they needed to send some out today. After many transfers and phone calls I was told that they couldn’t get me any that day but would over night it and I would have it the next morning. Needless to say it never arrived on Saturday and by the time I was able to get somebody to deliver a case it was Sunday morning. I was so happy to get a case that I didn’t even look at it until I brought it in the house and opened it. It was the wrong formula, UGH! I ran back out the door just as the guy was driving away but I got him to stop and told him is was wrong but he insisted it was the same thing. Hunter needs Isosource HN and he brought me Fibersource HN, the problem is Hunter can not tolerate fiber, it makes his tummy hurt and cramp and he screams. This guy insisted it was the same and drove away. I thought I would give it a try and after one can Hunter was screaming again so I didn’t give him anymore. So if you are counting that makes it two days without formula. I was able to find one can of Isosource so I gave him half a can mixed with water and more juice so he wouldn’t get dehydrated. First thing this morning I was on the phone again and after many transfers and phone calls I pray it has been straightened out. They are supposed to deliver one case by 5:00 and then they rest will arrive tomorrow. Hunter is already too skinny and now he has gone two days without formula, I am not happy but I just refused to give him the wrong formula and have him in pain and screaming again. It has been a long month of screaming and I pray that they deliver the right formula today. Thank you for checking in on us!



and ^^Angel^^

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Sunday, November 27, 2011 2:26 PM CST

Friday was the 8 year anniversary of the day we lost our goofy little Tommy. I can’t believe it has been that long since I have kissed those cheeks, I miss him so much.

As for Ciara and Hunter, they both had a rough week with this respiratory bug we all have. Ciara has been on 4 liters of oxygen for about 2 weeks now and her asthma is really acting up. Hunter hasn’t been as bad as her but he has his moments, more so in the past couple of days, where he is keeping me pretty busy trying to keep his throat and airway clear.

We took the kids to San Francisco yesterday, along with our nephew and his friend, to the Auto Show. I must say that after looking at all the new cars for 2012 my favorites have always been and still are the Jaguar and the Bentley. To my surprise I actually liked the Hyundai Genesis Coupe too. After the auto show we went to Fisherman's Wharf because I HAD to go to the Boudin Sourdough Bread store, YUM!!! Then we turned the boys loose for a couple hours to roam around the Wharf and Pier 39 before we met up for dinner and then headed home. I was SO happy that Ciara and Hunter were both having a wonderful day and didn't need any oxygen or breathing treatments, even though we did drag 2 oxygen tanks and everything else with us everywhere we went, just in case. This morning Hunter was having an asthma attack so I gave him a breathing treatment and he is sleeping now. Ciara’s pulse ox is 88 so I just put her back on some oxygen but she looks good so I hope they are both on the mend. Thank you all for the prayers!

This is a picture from Kassi’s Prom Birthday Party. From left to right is the Thornton Family (Johnny has Sanfilippo), the Bennett family (Ciara & Hunter have Sanfilippo), and the Offenbacker family (Kassi has Sanfilippo).



and ^^Angel^^

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Monday, November 14, 2011 11:26 AM CST

Since my last update Ciara and Hunter have been doing about the same. This past week we went to San Diego for John to take a class and then spent a few days in Seal Beach with some of our MPS friends which was a lot of fun. Of course the day we hit Seal Beach I got sick with a cold and 2 days later Ciara got it along with a fever and a few seizures so we are keeping a good eye on her, hopefully it won’t turn into a pneumonia. Hunter had a great time on vacation and even gave us a couple days of smiles which was fantastic! Before we headed home yesterday we had brunch at Knott’s Berry Farm with Snoopy, we LOVE Snoopy! It is getting to be that time of year which I dread, the holidays. Tommy passed away November 25 so I don’t like Thanksgiving anymore. Don’t get me wrong, I am very thankful for many things but I just can’t get the memory of Tommy in his casket all alone at the airport on Thanksgiving, waiting for the holiday to pass so somebody could bring him home, that just killed me. Then comes Christmas which isn’t the same anymore, the kids can’t play with toys but they do like all of the hoopla of the day. I just can’t wait for the New Year to get here. Sorry for ending on a bummer note but thank you all for checking in on us. Below are a few pictures from our trip.

and ^^Angel^^

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Tuesday, October 18, 2011 1:55 AM CDT

Martha, the Beg girls are doing alright. They have had a lot of respiratory issues lately so keep them in your prayers. Thanks for asking!

Happy Halloween everybody! I am so excited that Halloween is coming, it’s my favorite holiday. I still have to make the kids’ costumes so I guess I better get on the ball with that. This past month has been very hectic around here. We do not have Kaiser insurance anymore so after 10 years, I have now spent the past 6 weeks trying to find new doctors/specialists for Ciara and Hunter. So far we really like our new doctors and tomorrow is our last appointment so I hope our new Neurologist is just as good as our others. We just weighed the kids last week and Ciara gained 7 lbs and Hunter gained 5 which is amazing! They have both been stuck at 65 lbs for a couple years so I was thrilled when they both passed the 70 lb mark. Allergies are still causing issues with both kids but mostly Ciara. Hunter has had some bruising and bleeding so his spleen is playing games with his platelets again so we are keeping a good eye on that. Other then that, they have been doing pretty well lately (knock on wood). Last week we spent a couple days in Lake Tahoe which was fun and we are planning our next little trip so I can’t wait. Today we took the kids to the pumpkin patch which was fun. I guess that’s it for now, thanks for checking in on us and please sign our guestbook so we know you where here. Thanks!

and ^^Angel^^

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Sunday, September 18, 2011 10:03 AM CDT

Happy 12th birthday to my sweet Tommy. I know you are up in Heaven celebrating your special day, I wish you could come and celebrate with us, oh how I pray! You are the best gift I have received and I thank the Lord for sending you to me. We will be sending you some balloons today so keep your eyes open for them, we love you Angelface and I know you are going to have a wonderful birthday. Hugs and kisses!

Hugs To All,
and ^^Angel^^

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Monday, August 29, 2011 9:26 AM CDT

Since my last update, Hunter seems to be plugging along just fine. His lungs are still very fragile but he hasn’t needed oxygen during the day or evening in about a month. He still has to wear the Bi-Pap mask at night so he gets oxygen then so not doing too bad but it will take about a year for his lungs to recover, if they recover at all. School started but we made the decision to not send Hunter back to school anymore because we just can’t afford for him to catch a bug that will put him right back in the hospital again. Ciara hasn’t gone to school for the past 5 years for that same reason, we just have to do what is best for them. We have been taking them out and doing a few fun things but not traveling too far from home because we just aren’t sure how Hunter will do yet. We have taken them out to baseball games and last week we headed up to the mountains for the day which was fun. Ciara has been having more seizures lately, 4-5 in a day, so we have increased her Trileptol so now we just wait and see if that works. Not much else to report, things are just cruising along around here so thanks for checking in!

Hugs To All,
and ^^Angel^^

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Friday, July 22, 2011 1:01 PM CDT

Each day we have been home Hunter has been needing oxygen and the Bi-Pap machine earlier each day. Yesterday he had a wonderful day and didn’t need oxygen until last night and I put the Bi-Pap on him around midnight, he was even able to get out of the house and go for a drive which he seemed to enjoy. Ciara had two seizures yesterday so I gave her some Ativan after the second and she was out like a light for the rest of the evening. I decided not to go to the MPS Conference in St. Louis because Hunter is way too fragile to make that long drive and I can’t leave him with anybody in this shape so we will stay home but I will miss all my MPS friends! This update is short but sweet and I hope we have another day like yesterday. (knock on wood)

TEAM SANFILIPPO needs your help to win $250,000 to help find a cure for Sanfilippo. You need a Facebook page to be able to vote, here is the voting link VIVINT CONTEST


Hugs To All,
and ^^Angel^^

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Monday, July 18, 2011 12:12 AM CDT

Saturday I got to bring Hunter home, finally! When we got home Apria delivered the Bi-Pap machine which Hunter will have to wear at night when he sleeps. Somewhere around 8:00 Saturday night he was needing some oxygen so I hooked him up. Around 11:00 I put on the Bi-Pap on him and he did OK for a couple hours, then he became a little agitated so I gave him an Ativan to calm him down and he did OK for the rest of the night. The Bi-Pap in the hospital covered his whole face but the one they delivered to our house only goes over his nose so I think he likes it better because it doesn’t cover his face. Yesterday he did pretty good all day without any oxygen. Around 10:00 he needed some oxygen and then a little later I put the Bi-Pap on him and he didn’t fuss once and slept all night. The only issue is that the oxygen tubing comes off the Bi-Pap very easily so several times during the night I had to get up and plug it back in but he did very well. Ciara has been a happy girl since we came home too. Now I have to figure out what to do about the MPS Conference next week. Do I leave Hunter home with John and if so, who is going to take him overnight when John has to work. The Bi-Pap is a lot to ask somebody to deal with. Or do I take him with me and Ciara on the drive to St. Louis? Not sure what to do yet.

TEAM SANFILIPPO needs your help to win $250,000 to help find a cure for Sanfilippo. You need a Facebook page to be able to vote, here is the voting link VIVINT CONTEST
Hugs To All,
and ^^Angel^^

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Friday, July 15, 2011 3:06 PM CDT

Hunter has been off oxygen since yesterday afternoon which is wonderful. But, because his lungs are so damaged, he can’t get them fully inflated which causes his CO2 levels to increase. That means he is the lucky winner of a Bi-Pap machine at home! He looks good and I just want to take him home today but they won’t let me because they can’t get the Bi-Pap machine there until tomorrow, but most likely on Sunday. Now my other problem is what to do with Miss Ciara since she can’t stay here past 11:00 PM. I think I just have to get a hotel room down the street and Ciara & I will go there at 11:00 and then come back to the PICU early in the morning but I just hate leaving Hunter by himself all night long. If anybody wants to spend a fun filled night sleeping in the PICU let me know!

TEAM SANFILIPPO needs your help to win $250,000 to help find a cure for Sanfilippo. You need a Facebook page to be able to vote, here is the voting link VIVINT CONTEST

Hugs To All,
and ^^Angel^^

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Thursday, July 14, 2011 10:29 AM CDT

After a rough night, yesterday morning they put Hunter back on the Bi-Pap machine because his CO2 level is high and the Bi-Pap will help get his lungs open and to blow the CO2 out. The plan is to switch from Bi-Pap to Vapotherm every 3 hours. Since Hunter was sleeping so long we were able to leave the Bi-pap on for over 6 hours but when he woke up we switched. Hunter’s little buddy from school, Todd, came to visit, thanks for coming Stacy & Todd! When John and Ciara came to visit Ciara had her third seizure of the day so we gave her some Diastat which knocked her out so she slept in the chair for a few hours. Since she was asleep Kathy stayed with the kids so John and I could run out to get some dinner, thanks Kathy! When they put the Bi-Pap back on his last night be was not happy and cried and flailed about again so after a couple doses of Ativan he was finally asleep around 2:00 this morning. The doctor said that because Hunter’s lungs are so damaged from previous aspiration pneumonias and from being on the ventilator so long 3 months ago that he could be in the PICU for weeks before/if he gets over this pneumonia. John has to work Friday-Sunday so I have no idea what we are going to do with Ciara since she can’t stay here past 11:00 PM.

TEAM SANFILIPPO needs your help to win $250,000 to help find a cure for Sanfilippo. You need a Facebook page to be able to vote, here is the voting link VIVINT CONTEST



Hugs To All,
and ^^Angel^^

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Wednesday, July 13, 2011 9:33 AM CDT

Yesterday morning they did another chest xray on Hunter which again was worse then the previous one but he was still hanging in there. In the afternoon the doctor came in and said that he thinks Hunter might be aspirating again because of all the secretions in the back of his throat which is why the xray is worse. Around 5:00 I ran out to get something to eat and when I came back there were several nurses in his room which is never a good sign. They were getting a blood gas because he wasn’t keeping his SATs up and he lost his fight. It wasn’t long after that when they had to put him on the Bi-Pap machine to help him breath. I immediately started crying because he wasn’t on the Bi-Pap long before they had to intubate him in February and I was scared for him. After about an hour on the Bi-Pap he seemed to be breathing easier and his fight came back and he let the nurses know what he thought which was nice to see. All week the doctors have been wanting to give him Robinul to dry up his secretions but it is Robinul that caused all of his problems 3 months ago so I wouldn’t let them give it to him. But, this afternoon it was getting to the point where we needed to do something before he got worse so we agreed to let them start him on a half dose of Robinul to see if it helped. He got the first dose at 9:00 last night but a few hours later he was in a full blown screaming rage. They thought it was because he was angry about the Bi-Pap mask on his face (picture below) so they took him off the Bi-Pap around 2:00 this morning and put him back on the Vapotherm. He continued to scream and jerk his legs until almost 4:00 this morning, Ativan & Tylenol hadn’t calmed him down and nothing I did seemed to calm him down. Then it dawned on me, it’s because of the Robinul! I told the nurse, who was on the phone with the doctor, that is was the Robinul and to NOT give him anymore. They came in and gave him another dose of Ativan which seemed to finally calm him down and he was been sleeping ever since. Poor guy is so exhausted! Please keep Hunter in your prayers, I don’t know what today holds but I will admit, I am very nervous.



TEAM SANFILIPPO needs your help to win $250,000 to help find a cure for Sanfilippo. You need a Facebook page to be able to vote, here is the voting link VIVINT CONTEST
Hugs To All,
and ^^Angel^^

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Monday, July 11, 2011 10:51 PM CDT

Yesterday’s xray showed that Hunter had some mucus in his lungs which would explain why he was needing more support and oxygen with the Vapotherm. When I was coming back from lunch I was coming through the doors and I could hear Hunter in a full blown rage. I pushed Ciara even faster towards Hunter’s room and he was just insane! He was kind of on his side, butt in the air, screaming his head off. I straightened him out and calmed him down. He was so mad that he was red and feverish but once I got him to calm down he was fine and fever gone. Man he can get himself worked up! Every day a different nurse tells me that Hunter doesn’t like it when I leave the room and he gets very upset. I honestly didn’t think he would notice if I left the room. It never bothered him before but I am wondering if he is freaking out because the last time he was in the hospital he was on the ventilator which scared him. He was very cranky and fussy all evening and needed a lot of suctioning.
This morning they did another xray which looked worse then yesterdays. The doctor came in and said that the xray looked worse and that he thinks Hunter has fluid on his lungs. He decided to give Hunter Lasix to try and get the extra fluid off and to increase his shaky vest & Cough Assist treatments to see if that will help. By the afternoon Hunter’s lungs are sounding better and they have been able to turn the Vapotherm down a couple of times. We are hoping by tomorrow to be able to get him back on a nasal canula so say a prayer that this will happen. I left the hospital to get some dinner and when I came back I heard him screaming, again, and when I got into his room the respiratory therapist was giving him his treatment. After it was all over it must have loosened up the gunk in his lungs which is good but he sounds horrible and they had to increase his oxygen a little bit. The nurse manage came in about 5 minutes after I took Ciara out of her wheelchair and put her at the end of Hunter’s bed so she could relax for a little bit. He said that there can only be one person in the bed and that was Hunter but whatever, she is still there and I don’t care. She was crying in her wheelchair, she has spent too much time in it this past week. I tried to lay her on the stupid chair that I sleep on but it is so hard that she can’t lay on it comfortably and cries. What else am I supposed to do with her? John had to work today so she has been here with me all day. They won’t let her stay past 11:00 tonight so I have to leave and take her home and John doesn’t get off work until late so he won’t get to the hospital until 2:00 this morning. It breaks my heart to have to leave Hunter by himself for a few hours and I will be over an hour away. Especially since he isn’t sounding that great and now has a fever. This really sucks and we need to get Hunter back home!

TEAM SANFILIPPO needs your help to win $250,000 to help find a cure for Sanfilippo. You need a Facebook page to be able to vote, here is the voting link VIVINT CONTEST

Hugs To All,
and ^^Angel^^

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Saturday, July 9, 2011 9:39 PM CDT

Hunter is still in the PICU and he is still on the Vapotherm. The good news is that he didn’t need C-Pap or to be intubated like he was in February. He has had a rough few days but is getting a little better each day. Today they took him off the Vapotherm and put him on a nasal canula but that didn’t last long. His SATs kept going down into the 80’s so he is back on the Vapotherm but that’s OK, he must need it still. The plan is if he is still doing well enough to get off the Vapotherm then he will be transferred out of the PICU and into a regular room and I hope we are home by Monday but Hunter doesn’t follow my plans most of the time so I guess we will just wait and see what his plans are. We caught this pneumonia very early but because his lungs are still damaged from when he was on the ventilator a few months ago it didn’t take much to get him into respiratory distress. The doctor is going to get another xray tomorrow to see how things are looking and other then that we are just waiting for him to get better. This has been tough on Miss Ciara too, she hasn’t been able to rest and relax much because she always seems to be in her wheelchair and/or traveling back and forth. This morning I had to leave the hospital at 4:00 am, drive over an hour home to pick up Ciara so John could leave for work. She has been at the hospital all day but has spent most of the day in the bed with Hunter relaxing. Thank you all for the prayers!

TEAM SANFILIPPO needs your help to win $250,000 to help find a cure for Sanfilippo. You need a Facebook page to be able to vote, here is the voting link VIVINT CONTEST

Hugs To All,
and ^^Angel^^

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Saturday, July 9, 2011 9:39 PM CDT

Hunter is still in the PICU and he is still on the Vapotherm. The good news is that he didn’t need C-Pap or to be intubated like he was in February. He has had a rough few days but is getting a little better each day. Today they took him off the Vapotherm and put him on a nasal canula but that didn’t last long. His SATs kept going down into the 80’s so he is back on the Vapotherm but that’s OK, he must need it still. The plan is if he is still doing well enough to get off the Vapotherm then he will be transferred out of the PICU and into a regular room and I hope we are home by Monday but Hunter doesn’t follow my plans most of the time we I guess we will just wait and see what his plans are. We caught this pneumonia very early but because his lungs are still damaged from when he was on the ventilator a few months ago it didn’t take much to get him into respiratory distress. The doctor is going to get another xray tomorrow to see how things are looking and other then that we are just waiting for him to get better. This has been tough on Miss Ciara too, she hasn’t been able to rest and relax much because she always seems to be in her wheelchair and/or traveling back and forth. This morning I had to leave the hospital at 4:00 am, drive over an hour home to pick up Ciara so John could leave for work. She has been at the hospital all day but has spent most of the day in the bed with Hunter relaxing. Thank you all for the prayers!

TEAM SANFILIPPO needs your help to win $250,000 to help find a cure for Sanfilippo. You need a Facebook page to be able to vote, here is the voting link VIVINT CONTEST

Hugs To All,
and ^^Angel^^

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Wednesday, July 6, 2011 11:34 PM CDT

Sunday Night Hunter started foaming out of his nose and mouth so I suctioned and suctioned and then he was needing oxygen. I had him on 5 liters of oxygen all night and then took him to the ER on Monday. On the drive there I was able to turn the oxygen down to 2 liters and turned it off when I took him into the ER and his SATs were in the low 90's. He was looking pretty good and I felt stupid for bringing him in but after a couple hours there he tanked and was struggling. The xrays showed he had pneumonia in both lungs so he was admitted to the hospital. John came to the hospital when he got off work and he stayed the night with Hunter and I took Ciara home. The next morning when I got back to the hospital I was surprised to see that Hunter was off oxygen and they were going to send him home the next morning. John left to run some errands and not long after he left Hunter took a nose dive again and was really struggling to breath, kind of like the last time he had pneumonia and ended up in the PICU. Later in the evening John took Ciara home and I stayed at the hospital. When I went to sleep Hunter was on a non rebreather mask and still having a rough time but when I woke up this morning he was back to a nasal cannula and on only 3 liters of oxygen so I was happy. That didn’t last too long, he started needing more oxygen and needed more than they could give him on the regular floor so they moved him to the PICU, same room we had last time. They immediately put him on a Vapotherm which is a high flow nasal cannula that keeps his nose and airway moist. When they put that one Hunter he really seemed to calm down and seemed much more comfortable. His xray today looks better but I think his problem is all of the gunk and mucus in his throat/airway that is causing him to desat. We discussed with the doctors how far we are willing to go with his treatment which is something I hate to do but thankfully John and I have always been on the same page when it comes to that which makes it a little easier. He will be in the hospital for a while still so please keep him in your prayers and also Ciara, the long drive to and from the hospital and the long days are really hard on her but she is such a trooper and Hunter is a spunky little guy and makes sure he lets everybody there know what he is thinking.

TEAM SANFILIPPO needs your help to win $250,000 to help find a cure for Sanfilippo. You need a Facebook page to be able to vote, here is the voting link VIVINT CONTEST

Hugs To All,
and ^^Angel^^

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Sunday, July 3, 2011 4:37 PM CDT

We just took our first road trip since we bought the new van and it went pretty well. We drove to Oregon to attend the wedding of another MPS family. We got there on Thursday and everybody seemed to be doing well. Friday Morning when I got up and checked on the kiddos I noticed that Ciara had white foam pouring out of her mouth and nose and was having trouble breathing. I gave her some meds and suctioned her but her Pulse Ox was 80 so I asked John to run down to the car and grab the oxygen tank, but we had forgotten to bring the Regulator! Without the Regulator you can't use the oxygen tank. I called Apria which is who we use here to get our oxygen from but they weren't open yet and the person who answered the phone said they would try and get ahold of the on call person and they would call me back in an hour. I told her we didn't have an hour, if we didn't get the regulator now we were calling 911. John found a company, Norco, which was just down the street and they had a regulator for sale. We didn't care how much it cost so John ran out the door to get it. When he got there the man was waiting for him in the parking lot. He gave John the regulator, said it was on him and told John to get back to Ciara ASAP. How awesome was he! Once we got Ciara on a little oxygen she was fine and by the time we got to the wedding she was off the oxygen all together. Both kids were perfect at the wedding, nobody made a peep. Hunter has been screaming for a week because he has new teeth coming in. This has caused another issue because he has low platelets. I woke up during the night on Friday because he was screaming and when I went to get him he was covered in blood from his mouth. You need platelets to clot so this could be very serious. Since we are in the process of changing insurance, we don't have Kaiser anymore, which also means we have no doctors at all which is a major issue! John is doing to talk to the ER doctor when he gets to work today and see what he thinks we should do about Hunter. Well that is all for now, keep them both in your prayers and thanks for checking in!



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Hugs To All,
and ^^Angel^^

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Wednesday, June 22, 2011 10:24 AM CDT

Not too much going on around here. Hunter is in summer school and Ciara is still having some airway issues so she is on oxygen on and off for the last month now. That's it, nothing much else to say LOL.

TEAM SANFILIPPO needs your help to win $250,000 to help find a cure for Sanfilippo. You need a Facebook page to be able to vote, here is the voting link VIVINT CONTEST

If you use TWITTER, please tweet the voting link!

Hugs To All,
and ^^Angel^^

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Sunday, June 12, 2011 9:04 PM CDT

I still start with the good news first, Hunter is back to his old self again, thank God! He does have two teeth popping through so he is cranky but I can deal with that. Now for Miss Ciara, she has been on oxygen for a couple weeks or so and we don’t know why. I took her to the emergency room two weeks ago she her lungs are good so no pneumonia. Then I took her in the next week to the doctor for a follow-up and again her lungs were good. We decided to schedule a sleep study which we just did today and it will be a couple weeks before we get the results so we will see what they say. We are thinking that her airway might be collapsing so she might need a C-PAP machine to help her breath or maybe it is time to get a trach so she can breath easier. Keep her in your prayers that all goes well and we can figure this out. Poor little girl has had two seizures this evening so I am praying that there are no more. I need to get her “fixed up” before our long drive to St. Louis for the MPS Conference!
Hugs To All,
and ^^Angel^^

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Friday, May 20, 2011 11:42 PM CDT

Since Hunter came home from the hospital in February he has been having an issue with his neck. His head has been thrown backwards and we can’t get him to straighten his neck or hold his head upright and he screams and cries. He also started this weird facial twitching and arm jerking, possibly seizure activity? The doctor thought that he might have stenosis of the foreman magnum which means that the hole in the base of the skull is narrowing and pinching the spinal cord so the spinal fluid isn’t flowing like it should. If that was the case then we would have to find a neurosurgeon to go in and fix the problem. The thought of that scared the you know what out of me! We finally got an MRI a couple of weeks ago which only showed “normal” Sanflippo damage so that was great news, the spinal fluid was moving good. Last week Hunter had an EEG to see if it was seizures causing the facial twitching and arm jerking which again, showed no seizure activity. Great news! The next day my friend updated her son’s journal, he has MPS-II. She had mentioned that her son started a new med not long before, it was called Robinul. His doctor said that Robinul can affect the spinal cord. Aha! When Hunter was in the hospital they started him on Robinul to decrease his secretions. Ciara has been taking Robinul for years so I didn’t really think much about it. So, after reading that journal I weaned Hunter off of the Robinul and he is pretty much back to normal. Yesterday I took Hunter back to the Neurologist to hear what he had to say about the test results. He walked in and said that everything looks good and he has no idea what is causing Hunter’s problem. So I told him what I had read and that I weaned Hunter off the Robinul and he said “Thanks for making me feel stupid.” Now you know it makes my day to make a doctor feel stupid LOL. After he thought about it for a couple of minutes he said that the Robinul shouldn’t cause the issues that Hunter had but he bets that the combination of Robinul and the Elavil Hunter takes for Migraines interacted and caused that all to happen to him. So, I bet the doctor doesn’t forget that for a long time and Hunter doesn’t need surgery so yesterday was a great day!

A couple of weeks ago Ciara turned 15! We had a birthday party for her at Micke Grove Park. We BBQ’d and then everybody went to the zoo, it was a lot of fun. I can’t remember if I told you all that John is working in an emergency room and he loves it, he is very happy. I am still debating on going to the MPS Conference this summer in St. Louis. John can’t go so I would have to drive by myself with the kids and that is a long drive. So far I haven’t been able to find anybody to go with me so it isn’t looking good but I am still holding out hope! That’s all for now and below are a couple pictures from Ciara’s birthday party.





Hugs To All,
and ^^Angel^^

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Friday, May 20, 2011 11:42 PM CDT

Since Hunter came home from the hospital in February he has been having an issue with his neck. His head has been thrown backwards and we can’t get him to straighten his neck or hold his head upright and he screams and cries. He also started this weird facial twitching and arm jerking, possibly seizure activity? The doctor thought that he might have stenosis of the foreman magnum which means that the hole in the base of the skull is narrowing and pinching the spinal cord so the spinal fluid isn’t flowing like it should. If that was the case then we would have to find a neurosurgeon to go in and fix the problem. The thought of that scared the you know what out of me! We finally got an MRI a couple of weeks ago which only showed “normal” Sanflippo damage so that was great news, the spinal fluid was moving good. Last week Hunter had an EEG to see if it was seizures causing the facial twitching and arm jerking which again, showed no seizure activity. Great news! The next day my friend updated her son’s journal, he has MPS-II. She had mentioned that her son started a new med not long before, it was called Robinul. His doctor said that Robinul can affect the spinal cord. Aha! When Hunter was in the hospital they started him on Robinul to decrease his secretions. Ciara has been taking Robinul for years so I didn’t really think much about it. So, after reading that journal I weaned Hunter off of the Robinul and he is pretty much back to normal. Yesterday I took Hunter back to the Neurologist to hear what he had to say about the test results. He walked in and said that everything looks good and he has no idea what is causing Hunter’s problem. So I told him what I had read and that I weaned Hunter off the Robinul and he said “Thanks for making me feel stupid.” Now you know it makes my day to make a doctor feel stupid LOL. After he thought about it for a couple of minutes he said that the Robinul shouldn’t cause the issues that Hunter had but he bets that the combination of Robinul and the Elavil Hunter takes for Migraines interacted and caused that all to happen to him. So, I bet the doctor doesn’t forget that for a long time and Hunter doesn’t need surgery so yesterday was a great day!
A couple of weeks ago Ciara turned 15! We had a birthday party for her at Micke Grove Park. We BBQ’d and then everybody went to the zoo, it was a lot of fun. I can’t remember if I told you all that John is working in an emergency room and he loves it, he is very happy. I am still debating on going to the MPS Conference this summer in St. Louis. John can’t go so I would have to drive by myself with the kids and that is a long drive. So far I haven’t been able to find anybody to go with me so it isn’t looking good but I am still holding out hope! That’s all for now and below are a couple pictures from Ciara’s birthday party.





Hugs To All,
and ^^Angel^^

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Sunday, May 15, 2011 10:37 AM CDT

Today, May 15, is National MPS Awareness Day! I am sure that you all know what MPS is by now so I am not going to repeat myself on that part. But I did want to share something that my friend Robin wrote, her son also has MPS. As I read it, it was as if she was writing about us. Unfortunately it is how all MPS families live, but I thank God every day for giving me Ciara, Hunter and Tommy. I am who I am because of them and they are truly gifts from Heaven!

To a mother, MPS means:
Watching your bright child lose his intelligence
Watching your talkative child forget how to speak
Watching your jumping child become land-bound
Watching your singing child become silent
Watching your epicurean child struggle to chew and swallow
Realizing that you have heard your last “Mommy”
Breaking out the baby toys that were long ago put away
Watching your child’s beautiful hands and feet become stiff and painful
Watching medical equipment replace toys
Giving up dreams of the future
Holding your child through painful procedures
Having a pharmacy worth of medicines in your cabinet
Sleepless nights while your child plays all night
Sleepless nights while your child struggles to breathe
Sleepless nights every time you travel
Sleepless nights because your mind won’t stop turning
Sleepless nights in the hospital
A parade of nurses, therapists, and respite workers invading your home
Beeping alarms in your child’s bedroom
An IV pole in your living room
A bath chair in your bathroom
A ramp to your front door
The blender becoming your most important kitchen appliance
Cold dinners
Soggy cereal
Heartburn from choked-down meals
Sore knees and back from lifting and carrying your ever-growing child
Bruises from head-butts and kicks
Missing toenails when your child steps on you bare feet with his shoes on
Emptied surfaces
An alarm on your front door
Chewed remote controls
Chewed phones
Chewed furniture
Chewed doors
Chewed sheets and blankets
Drool on your shirt
Toothpaste on your shirt
Food on your shirt
Knowing how to clean poop off of or out of just about anything in your home, including your shirt
Diapers, diapers, and more diapers
Laundry, laundry, and more laundry
Changing sheets
Washing blankets and comforters
Owning a “hospital wardrobe”
Keeping a few things packed in your overnight bag, just in case
Considering hospital stays a good time to catch up on your reading
Being recognized by the PICU staff
Waiting in doctors’ offices
Waiting in Radiology
Waiting in the Surgery Family Waiting Area
Knowing what is “good” in the cafeteria
Bringing your own food from home
Eating in your child’s room right next to the sign that says “Only patients may eat in this room”
Interrupting rounds to correct the attending when he is talking about MPS
Educating medical students, residents, and nurses about MPS
Reciting your child’s medical history over and over again
Having your child’s date of birth roll off your tongue more easily than your own
Long phone calls to the pharmacy
Long phone calls to doctors’ offices
Long phone calls to home healthcare agencies
Long phone calls to school
REALLY long phone calls to the insurance company
REALLY, REALLY long phone calls to Medicaid
Picking up a month’s supply of diapers
Picking up a month’s supply of feeding tube formula
Picking up a month’s supply of medications
Deliveries of feeding supplies
Deliveries of respiratory supplies
Deliveries of infusion supplies
Closets and cabinets full of supplies
Pulse oximeter
Bi-PAP machine
Oxygen tanks
Oxygen concentrator
Nebulizer
Feeding pump
Infusion pump
Suction machine
AFOs
Hearing Aids
Medical Stroller
Adaptive chair
Adaptive carseat
Adaptive tricycle
Adaptive swing
Cutting your child’s door in half to make a dutch door
Mounting toys on the wall
Putting a tv in your 4 year old’s room
Mickey Mouse Clubhouse
The Wiggles
Barney
Sesame Street
The Backyardigans
Blue’s Clues
The Very Hungry Caterpillar (chewed by the very hungry boy)
Good Night Moon
5 Little Monkeys
Green chewies
Red chewies
Purple chewies
Drool bibs
Feeding bibs
Adaptive Spoons
Pureed pizza
Pureed sandwiches
Pureed tacos
Poking a new feeding tube through a hole in your child’s abdomen
Crushing pills
Opening capsules
Dissolving tablets
Inserting suppositories
Laughing seizures
Absence seizures
Autonomic seizures
Massaging purple hands and feet
Haircuts at home
Pulling out loose teeth
Belly laughs
Screeches of joy
Unconditional love
Beautiful smiles
Knowing that as hard as it is, it is all worth it to get to be his mommy



Hugs To All,
and ^^Angel^^

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Thursday, April 21, 2011 9:57 PM CDT

Well, not great news at the Neurologist's office today. He is going to schedule an EEG to see if Hunter's twitching/jerking is seizures or maybe just a tick or something else. He is much more worried about the fact that Hunter can't hold his head up straight, it is thrown back. He thinks Hunter might have his spinal cord compressed so he is scheduling an MRI. Hunter needs prayers because I don't know if he can go though the surgery to fix that problem.

Ciara has been doing pretty good, other then the allergies which are really giving her a rough time but she is happy. Her birthday is coming up on May 7, I can't believe she is going to be 15 years old! Where is all the time go?

Hugs To All,
and ^^Angel^^

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Sunday, March 20, 2011 7:38 PM CDT

I hate to jinx anything but since my last update Ciara and Hunter have been doing wonderful! (Knock on wood!) Hunter is pretty much back to his old self after being on the ventilator a few weeks ago. Ciara has had a few bumps in the road and has needed oxygen a few times but I am pretty sure it is all allergy related. John started his new job a couple of weeks ago and he is now offically an ER Nurse and he is very happy and doing very well. Hunter's birthday is on Friday and he will be 13, can you believe it, 13!!! We are having a party for him in a couple weeks, we need to celebrate this one in style! Last weekend we went to Monterey for a few days, we got there the day of the Tsunami. We met up with several other MPS families and had a wonderful weekend and the weather was perfect! Below are a few pictures from our Monterey trip.

Ciara and Hunter on Tsunami watch in Monterey


Hunter is afraid of birds and wouldn't look at this little guy


Our MPS group


Hugs To All,
and ^^Angel^^

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Saturday, February 19, 2011 5:44 PM CST

Sorry I haven't updated sooner but I have computer issues, our last remaining running computer is just about dead so I can't use it very much and no idea when we will be able to purchase another laptop. Anyway, we extubated Hunter last week Friday and he did very well. The only problem he had was that he was having withdrawls from one of the meds they had him on while he was on the ventilator so he had a very rough couple of days because of that but we were able to bring him home on Sunday. The doctor said it will take 3 months for his lungs to recover from this so for now we have him on 1 liter of oxygen only because it is helping to keep his airway dry from all of the gunk. Two days ago he actually acknowledged that I was touching him and reached for my hand so he is slowly coming back around but he still isn't “Hunter” yet. Ciara has been doing very well (knock on wood) so we are just hanging out and not doing much of anything. Thank you all for continuing to check in on how the kiddos are doing!

Hugs To All,
and ^^Angel^^

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Friday, February 11, 2011 10:04 AM CST

Hunter has been getting better every day. They were going to extubate him yesterday but because Hunter had too much secretions they couldn't do it. They did however turn off the pressure settings on the ventilator and Hunter was breathing on his own but still getting the oxygen from the machine so that was great. They started him on Robinul, which Ciara already takes, which decreases the secretions last night to see if it would make a difference. They tried to decrease his sedation yesterday but he was too awake and active and they were afraid he would pull the tube out so they increased it again last night, thank God, because every time I would touch him and talk to him he would look at me and cry. John just called and they just decreased his sedation again and will extubate him today so keep your fingers crossed and say a prayer that all goes well.

Hugs To All,
and ^^Angel^^

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Monday, February 7, 2011 11:01 PM CST

The past several days have been pretty scary but Hunter is slowly making progress. It is two steps forward and one step back but at least he is showing some improvement. I was awakened at 2:30 by the sounds of people in our PICU room, never a good sound. Hunter was desating so the doctor ordered a stat xray and increased his ventilator settings. After everything settled down I went back to sleep and when I woke up at 6:00 Hunter was awake which was amazing! I talked to him and touched his hand and he lightly squeezed my hand and tried to sit up so he knew I was there. He is retaining fluid and his lungs are wet so they are giving him Lasix to get the fluid off and his spleen is bigger so they are watching that but not too worried about it yet. He has also had a couple bleeding issues because of his spleen eating his platelets so we are watching that too. So far the only test that has come back positive was for the Parainfluenza so the plan is to start decreasing his antibiotics over the next few days and just support him on the ventilator for the next week. Hunter is still very sick and anything can happen but for now he is heading in the right direction. Keep the prayers coming for him and thank you to all that have been sending prayers and coming to visit!



Hugs To All,
and ^^Angel^^

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Friday, February 4, 2011 3:03 PM CST

Update 7:45am PST: Hunter has been placed on a ventilator. His body was fighting too hard to get air in. His last x-rays also showed his lungs were in very bad shape. The hope is to give his body some rest (the vent breathes for him) and he can slowly be weaned off of the ventilator. This is a very critical time. Please pray....not only for Hunter, but also for John and Alicia. This is very hard and scary. I or Alicia will update as things change. Thank you

Alyssa





Update 9:45 PM CST.
Alyssa here. Hunter is still in the PICU and is having a really hard time. He is in 20 liters of oxygen and getting Vapotherm through the nasal cannula and continuous Albuterol through the mask. they don't want to put him on C-Pap yet because the Vapotherm is doing pretty much the same thing and it Is more comfortable so he will fight less. They did blood cultures to see what is causing this but we won't get the results until Sunday.

This was working for a bit, but now his pulse ox is low, hanging around 87 and they have called in the doctor. He will be getting chest PT and looks like he might need to be put on the CPap soon. Please keep praying for Hunter. He is fighting really hard to breathe. I will update you as I know more. Thank you.

. This morning they moved him to the PICU. Please keep him in your prayers!

For those that voted in the Pepsi Refresh Project for Team Sanfilippo, WE WON!!! $250,000 to go towards Gene Therapy!


Hugs To All,
and ^^Angel^^

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Sunday, January 23, 2011 6:48 PM CST

Hello Everybody! I hope you are all having a happy start to 2011. Things have been holding steady around here so for us that is a good thing. As usual there have been a few bumps in the road, a few trips to the Emergency Room but thankfully no hospital stays so that has been very nice. The past week Ciara has been very alert and happy which is so wonderful to see her that way. Hunter has been grumpy and fussy for a couple of weeks, we are thinking it is his migraines but the past few days he has been pretty good. Other then that, not much to report. I do need you all to help us win the Pepsi Refresh Project to help find a cure for Sanfilippo Syndrome. Please click here PEPSI VOTE and vote every day through January 31. You can also vote with your cell phone by texting 105582 to Pepsi (73774). We need to win this $250,000 to find a cure for Sanfilippo!!!

Here is my photo album called "Living With Sanfilippo" so you can all see what my children have gone through because of this horrible disease: SANFILIPPO PICS


Hugs To All,
and ^^Angel^^

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Tuesday, December 21, 2010 11:57 AM CST

Merry Christmas Everybody! Not much going on here, Ciara and Hunter are doing good (knock on wood). Just trying to finish up the Christmas shopping but with all the rain here lately it is too hard to get out with the kids so I am going to take advantage of the break in the rain and get out right now. Hopefully tonight we will be able to put the kids in the van and drive them around to see all of the Christmas lights, I think they would love that. Sorry this is so short but no news is good news in our world LOL. I wish you all a happy and healthy 2011!

Here are some things that amused me so I thought I would share:

10 REASONS TO GIVE THANKS FOR YOUR SPECIAL NEEDS CHILD:
1.You never have to worry about worrying over nothing. Let other parents obsess over the frivolous and the shallow. Your child will make sure you always have something to worry about.
2.Developmental delays = more years of hugs, kisses, & little kid sweetness. My teenager still wants to sit on my lap, give me hugs & tell me he loves me. What mom of a sullen teen doesn't secretly wish for the same?
3.Maybe, somebody, Ty Pennington will come build you a house. Hey, Extreme Home Makeover: Home Edition loves families of children with special needs. Your little one may be your ticket to a lavish living space.
4.Any little milestone is a cause to throw a party. Your child works hard for every step, sit up & syllable, giving you lots to be excited about.
5.Every day is a learning experience. Some days it's a pop quiz, some days it's a crash course, but life with your child is always an education, for sure.
6.You have the privilege of putting several doctor's children through college. After paying all those appointments, you may feel like one-family scholarship foundation. Put your child's name on some letterhead and take pride.
7.You meet a better class of parent in waiting rooms and support groups. Your child frees you from having to hang out with those snotty parents on the playground and gives you entry into an exclusive club of people who are sensitive, sarcastic, and sure of their priorities.
8.You have an iron-clad excuse for any occasion. You'd love to stay at the boring party, crowded event, church service, but, you know, your child just can't tolerate it. (And if sometimes it's you who can't tolerate it, who's to know?)
9.Coming up with new strategies every day keeps your brain sharp. They say doing crossword puzzles “keeps your brain sharp”. Figuring out your child's schedules , treatments, lessons, rights & restrictions must easily provide twice the protection.
10.Your blessings will always be counted. Other parents may take the gifts that their children make for granted. Not you. Not ever.



Even though this poem is about Autism, it is the same for MPS
Autism Night Before Christmas
by Cindy Waeltermann
Twas the Night Before Christmas
And all through the house
The creatures were stirring
Yes, even the mouse
We tried melatonin
And gave a hot bath
But the holiday jitters
They always distract
The children were finally
All nestled in bed
When nightmares of terror
Ran through my OWN head
Did I get the right gift
The right color
And style
Would there be a tantrum
Or even, maybe, a smile?
Our relatives come
But they don’t understand
The pleasure he gets
Just from flapping his hands.
“He needs discipline,” they say
“Just a well-needed smack,
You must learn to parent…”
And on goes the attack
We smile and nod
Because we know deep inside
The argument is moot
Let them all take a side
We know what it’s like
To live with the spectrum
The struggles and triumphs
Achievements, regressions…
But what they don’t know
And what they don’t see
Is the joy that we feel
Over simplicity
He said “hello”
He ate something green!
He told his first lie!
He did not cause a scene!
He peed on the potty
Who cares if he’s ten,
He stopped saying the same thing
Again and again!
Others don’t realize
Just how we can cope
How we bravely hang on
At the end of our rope
But what they don’t see
Is the joy we can’t hide
When our children with autism
Make the tiniest stride
We may look at others
Without the problems we face
With jealousy, hatred
Or even distaste,
But what they don’t know
Nor sometimes do we
Is that children with autism
Bring simplicity.
We don’t get excited
Over expensive things
We jump for joy
With the progress work brings
Children with autism
Try hard every day
That they make us proud
More than words can say.
They work even harder
Than you or I
To achieve something small
To reach a star in the sky
So to those who don’t get it
Or can’t get a clue
Take a walk in my shoes
And I’ll assure you
That even 10 minutes
Into the walk
You’ll look at me
With respect, even shock.
You will realize
What it is I go through
And the next time you judge
I can assure you
That you won’t say a thing
You’ll be quiet and learn,
Like the years that I did
When the tables were turned…….



Hugs To All,
and ^^Angel^^

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Thursday, November 25, 2010 8:36 AM CST

Happy Thanksgiving everybody! I cooked my turkey last night so I am happy that is done and I don't have to worry about cooking for a few days. Ciara and Hunter are doing pretty good (knock on wood). They both had a rough couple of months with the weather staying so warm to late into the year which causes their allergies to get the best of them. But after sinus infections and some antibiotics they both seem to be doing much better. They both saw the Pulmonologist a couple of weeks ago and we were all surprised to hear that Ciara's lungs sound a lot better and even better then Hunter's. We started her with the “shakey” vest in May and it has really made a huge difference in her lungs/congestion issues. Hunter's lungs didn't sound that great so the doctor ordered a “shakey” vest for Hunter too so for the past two weeks he has also been getting the Albuteral, Hypertonic Saline 7and then the vest treatment everyday so I think he will be doing better in no time. I think every MPS kid should have the Vest and here is the website is you are interested www.thevest.com. John is still looking for a nursing job because nobody is hiring unless you have a year experience so I pray he finds something soon. After two years we finally got a new van and last week it was converted for the kids' wheelchairs so now I don't have to carry them anymore! We got a Ford E350 extended van and then we added two Easy Lock systems, a wheelchair lift and a back seat that folds down to a bed so they can lay down when they need to. It is pretty awesome and I love it but the best part is that the kids love it too! Hunter used to scream and cry when we would put him in the car but now he loves to look out the window and will ride for hours without making a peep.

Seven years ago today my precious Tommy took his last earthly breath before becoming the most beautiful little angel in Heaven. I miss him terribly but today I am just going to smile and laugh at how silly and goofy that little boy was, he always made me laugh. Please light a candle for him today and take a moment to send up a little “Hello” to him today.

Missing You

You're our sunshine in the day,
You're the stars that shine bright in the night.
You're the gentle breeze across our face,
...With the love you gave us there will never be a goodbye.

You're the unspeakable sadness in our eyes.
You're the tears that stream down our cheeks.
You're the constant heartache we feel,
We remember all the love we had for you.

But this Thanksgiving Day will never be right,without you here,
You will be tucked away deep inside our broken hearts.
But you will never be replaced or forgotten.
Because we can never again be torn apart.

So the next time we feel that gentle breeze,
Or the tears that start to warm our eyes,
We will smile and always remember the love you gave us.
There is no goodbye.




Hugs To All,
and ^^Angel^^

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Friday, September 17, 2010 10:38 PM CDT

September 18, 1999 Thomas Gunner Bennett was born and he was perfect in every way. He was 12 hours old when I brought him home from the hospital and on the way home we stopped to get lunch. That was how Tommy's life started, he didn't waste a second, he started living life out and about from the moment he was born and he loved everything about the world, and the world loved him. Tommy only said one word, once, and that was “mom”, but he used sign language and didn't have a problem letting people know whatever it was he wanted them to know. Tommy's favorite place to go was Chuck E Cheese, if possible he would have lived at Chuck E Cheese. He loved to play SkeeBall and the basketball game and of course the rides. He was such a funny little guy and I miss his little face so much. Happy 11th birthday Tommy, I love you and miss you so much it hurts. If you have a memory of Tommy please post it in the guestbook.

You can see pictures of Tommy while we were at Duke by clicking here: PICTURES

Today is your Birthday,and like many more
I will always love you ,even more than before.
I can't buy you new clothes,or buy you new toys:
I can't give to you anymore new joys.
I can't hold your hand and say I Love You!
I can't hold your hand and tell you why the sky is blue.
You are not here with us anymore,
for you have went thru that other door.
When God took you from us and chose you for him,
I thought my world would come to an end.
I can't hold you in my arms and give you hugs and kisses:
I can only hold the memories of the days that I've been missing.
I can hold the memory of how you called my name,
and how we played those baby games.
I can still hear your laughter although it's many years after.
I will meet you at this very spot,whenever I want to be with you in thought.
Today is your Birthday and now you are nine,
I think of how much time has passed since you were mine.
I think of you often, almost everyday,
I will love you forever, forever and always.


Hugs To All,
and ^^Angel^^

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Monday, September 6, 2010 2:06 PM CDT

Not much has been happening around here since my last update. Hunter has started back to school and he is doing very well and is happy when he comes home. Ciara has been doing pretty well also but a few days ago she had eight seizures in one day which really wiped her out and she slept for almost two days. Since then she has been back to her happy self “chatting” non stop for days now, she is so cute! Last week we went to Kassi's Kause MPS Run which was a lot of fun, I posted the pictures here Kassi's Kause Pics . We are going to the MPS Conference this month which is at Knott's Berry Farm and we are very excited! Now my Northern California MPS friends get to meet my Southern California group and hopefully we can all get together more often. But the best news of all is that we FINALLY are getting a new van, woohoo! We ordered it a week ago so we should have it right after we get back from the MPS Conference. Once we get the van it will only take two days to do the wheelchair conversions so then we will be traveling and having fun again! Tommy's 11th birthday would have been September 18 so please remember him and have some cake!

Hugs To All,
and ^^Angel^^

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Wednesday, July 7, 2010 11:12 AM CDT

Since my last update Hunter wasn't doing very well but after 2 months he is finally not screaming and crying all the time. We got his tummy problem taken care of and then he started getting new teeth but he is a much happier guy these past couple of weeks. Ciara is back to her silly self, laughing and giggling this week which is wonderful! Last week I was trying to cut a zip tie off of the new cheese grater with a steak knife because I couldn't find any scissors and of course the knife slipped and I stabbed myself. John took me to the ER and of course I severed the nerve in my hand. Hopefully I will get feeling back in a few months but we will have to see what happens. John is about to take his state nursing boards so if anybody knows of a place hiring new graduates, please let me know! We are still trying to get a fullsized Ford van for the kids so I can get them out of the house but we will see how that goes. Well, I guess that is about it for now, the first half of this year was horrible for the kids but I hope the second half keeps on going the way it is! :o)


Hugs To All,
and ^^Angel^^

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Tuesday, May 18, 2010 9:31 AM CDT

A lot has happened since my last journal update. Ciara’s birthday was May 7 which was also the day we rushed Hunter to the emergency room because of bleeding. Since he has the problem of his spleen eating up his platelets so he won’t clot, it scared me when I saw all that blood in his diaper. The night before he had also caught my cold so he was congested as well. John was at school taking a test so I called him to tell him what was going on and then called my friend Debbie who is a captain on the fire dept and her husband is our fire chief so they met me at the fire station. I wanted them to check Hunter to make sure he would be OK for the hour plus drive to the ER. Debbie took Ciara for the day while I headed to the hospital with Hunter and John met us on the way. By the time we got there Hunter needed oxygen and had two bloody diapers so they admitted him to the hospital. Debbie sent me pictures of Ciara, they took her to the carnival at the Ione Homecoming and she was having a great time. Debbie even entered Ciara in the frog jump contest, can you picture Ciara smacking a frog on the butt to make him jump! LOL In the evening I drove home and John stayed at the hospital with Hunter. I went to the Homecoming to pick up Ciara from Debbie, they were watching the fireworks and Ciara had a big smile on her face. Thank you Debbie and Kenny for taking such good care of Ciara and making sure she had a wonderful birthday! Hunter stayed in the hospital for a couple more days and the doctor thinks that the reason Hunter has been screaming for the past few weeks is from reflux so they changed his reflux med and sent us home. The next day the hospital called and said that Hunter has C-Diff in his poop so that is what caused all of the bleeding so they started him on an antibiotic. That was a week ago and I haven’t noticed a change so I think we need to change the antibiotic. Of course the day Hunter came home from the hospital is the day Ciara caught my cold so she that night we didn’t get any sleep because we such a hard time getting Ciara’s oxygen level to stay up enough where we didn’t have to take her to the hospital too. Her oxygen SATs were in the 70s-80s but we got her through the night and after a week she is still on oxygen darn it. We had her birthday party this weekend and it was so much fun. We went roller skating, I found a rink that would let us take the wheelchair out onto the rink. They had Ciara come out to the middle of the rink and everybody that was there made a circle around her and sang happy birthday and did the chicken dance around her and she loved it!

Today John graduates from nursing school and I am so proud of him! I will post some pictures later on this afternoon!

CIARA'S BIRTHDAY PARTY





Hugs To All,

and ^^Angel^^

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Wednesday, May 5, 2010 8:55 AM CDT

Today, Friday May 7, is Ciara's 14th birthday, yippee!!! They are having fireworks in the park tonight so I am taking the kids to go and watch them. I told Ciara that the City of Ione was having them just for her birthday. :o)



Well the past couple of weeks have not been good for Hunter. He has been screaming, and I don’t mean fussing or crying, I mean SCREAMING and we can’t figure out what is bothering him. I took him to Kaiser a week ago and they didn’t know either but gave him antibiotics and pain meds to see if it would help. He isn’t screaming as much but I have noticed that he seems to scream when laying down. He didn’t go to school last week but he has gone the past couple of days which is nice for me. Ciara is doing very well and her birthday is on Friday, she will be 14 years old! The Ione Homecoming will be Friday and Saturday so on her birthday, Friday night, they will be having fireworks so I think I will take her out to the park to watch them. It’s not everybody that gets fireworks on their birthday LOL. After all these years, the time has finally come, John is graduating from nursing school in less then 2 weeks! Hopefully he will find a job soon, it seems hospitals don’t like to hire new grads. But we are very excited and can’t wait!


Hugs To All,

and ^^Angel^^

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Sunday, April 4, 2010 2:02 PM CDT

Happy Easter everybody! I hope you are all having a wonderful day today. We are getting ready to for hunting eggs and dinner. Ciara and Hunter are doing pretty good these days, they have their moments but over all things are going well. That’s it for now, I might post a pic later when we get home, that is if I get a good pic LOL.



Happy Easter in Heaven Tommy! I love you!

The sky is full of bunny clouds,
So soft and fat and white,
I wonder if they're hiding eggs
For stars to find at night.

Because it's Easter time,
There is no reason why,
There shouldn't be an Easter hunt
In meadows in the sky.




Hugs To All,

and ^^Angel^^

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Sunday, April 4, 2010 2:02 PM CDT

Happy Easter everybody! I hope you are all having a wonderful day today. We are getting ready to for hunting eggs and dinner. Ciara and Hunter are doing pretty good these days, they have their moments but over all things are going well. That’s it for now, I might post a pic later when we get home, that is if I get a good pic LOL.



Happy Easter in Heaven Tommy! I love you!

The sky is full of bunny clouds,
So soft and fat and white,
I wonder if they're hiding eggs
For stars to find at night.

Because it's Easter time,
There is no reason why,
There shouldn't be an Easter hunt
In meadows in the sky.


Hugs To All,

and ^^Angel^^

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Thursday, March 25, 2010 10:34 AM CDT

Today is Hunter’s 12th birthday, woohoo! I sent him off to school this morning with cupcakes for everybody so I know he will have a good day. His party is this weekend and a bunch of MPS friends will be coming so we are very excited.

Ciara and Hunter have been doing very well, things seem to be about back to normal and I am very happy about that. I took the kids to Daffodil Hill over the weekend with the Whitecottons and we had a good time. Not much else to report, thanks for checking in!










Donations can be made here to help with the traveling & medical expenses; ACTIVE GIVING DONATIONS

Hugs To All,

and ^^Angel^^

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Friday, March 12, 2010 1:17 PM CST

This past week has been a busy week but a good week. With all of the meds Ciara came home from the hospital on and the fact that every 2 days the doses change because we are weaning her off of them, it is confusing and very time consuming. Ciara is pretty much off of the oxygen, we only put in on her when she is sleeping at one liter so that's pretty good. Hunter is doing good too, he goes to school every day and really enjoys that. John has been very busy getting everything in order for when he graduates in May, there is a lot of paperwork involved to get a RN license. That is pretty much all I have to say, short but sweet. Thank you all for checking in!

PS: Jacomien, what is Harmen's website, I don't have it on this computer, thanks!!!

Ciara was sleeping but we took her out for a walk yesterday.



Hugs To All,

and ^^Angel^^

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Sunday, February 28, 2010 10:14 PM CST

SATURDAY 10:20 AM UPDATE: Ciara has been home with us now for a day and a half. She is still on oxygen and agitated but not as bad as when she was in the hospital. We are pretty sure it is the steroids that are making her so agitated but it takes a week to wean her off of them. This morning I lowered the dose by half so hopefully by tomorrow she will be a little happier. Thank you all for the prayers and donations, you are all so wonderful and I don't know what we would do without you!

TUESDAY 6:15 PM UPDATE: We started Ciara on Haldol late last night but it was a very small dose & did nothing. She was extremely agitated & rubbed the skin off her other foot from flailing around the bed. This morning she was even worse so they gave her some Ativan. This afternoon we increased the dose of Haldol and she has been a little better. I am not taking her home until we get this under control so not sure how long we will still be in the hospital.



This past week and a half has been so very hard on Ciara but she sure is a tough cookie. We brought her into the ER at Kaiser and found out she had viral pneumonia in both her lungs so they admitted her. After a day they moved her from a regular room into the Pediatric ICU and put her on the Bi-Pap machine to help her breathe. After a week of Bi-Pap then Vapotherm then C-Pap we finally got her onto a nasal canula this morning and are now out of the PICU and in a regular room. The problem that we still have is that she is still very agitated, something is hurting her and we don’t know what. The past couple of days I noticed that when we are suctioning her we are getting stuff out of her throat that looks like curdled formula so I am wondering if she is having reflux or if her Nissen has loosened. When she got her feeding tube years ago she had a Nissen Wrap done so that nothing from her stomach can come up into her throat and cause her to aspirate. So, tomorrow she is having a study done, kind of like a swallow study, to see if she is refluxing. If that doesn’t show anything I don’t know what we are going to do next. Her feet are bloody from the thrashing around the bed and John had to lay on her tonight to hold her down so she wouldn’t hurt herself anymore. This is not the way I want her to live, nobody should have to live like this and it breaks my heart to watch her. Please pray that we can find what is hurting her!

Donations can be made here to help with the traveling & medical expenses; ACTIVE GIVING DONATIONS

Hugs To All,

and ^^Angel^^

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Thursday, February 18, 2010 1:29 PM CST

UPDATE FEB 22ND 3:00PM PST

This update will be quick. Ciara is still in the PICU and is holding steady on the C-pap. Thank god she was able to stabilize on that and not need further assistance. We are trying very hard to avoid the ventilator. She has not gotten any better and in fact her x-rays yesterday showed more fluid. BUT...in terms of her actual breathing she is still the same today so we will take that. Again we ask for prayers that she can beat this nasty pneumonia. Thank you...I will update again later

Alyssa

UPDATE FEB 21ST 11:00AM PST

Ciara was doing better yesterday, but today things have started to change. She was switched to a Vapotherm yesterday to help her breathe instead of the bi-pap and she did well. Today she is up to 70xygen and is still not getting enough air so they are taking x-rays and are thinking of switching her to a c-pap. I will update later tonight on how things are going as I will be without my computer for a bit.

Alicia also woke up sick today as did Hunter. They just can't seem to get a brake. Any of them... ALSO Paypal has shut them off from getting any more donations until further notice. (don't even get me started) so we have another site if people can help, just click the Active Giving link below:

ACTIVE GIVING DONATIONS

Thank you all so much and please keep the prayers coming.

Alyssa



UPDATE FEB 19th 1:15PM PST

URGEST PRAYER REQUEST. Ciara is in critical condition and is now in the ICU on a bi-pap machine. Her little body is tired and not getting enough oxygen. Please storm the heavens with prayers for her to recover. She needs them now more than she ever has.

Alyssa

UPDATE FEB 18th 5:30PM PST

Ciara is still about the same. She is still on 10 liters of 02 and is lingering in the lower 90's, upper 80's. She is still very unhappy and uncomfortable. Poor girl is very tired.

I have a request, or rather a favor to ask to all of you. Alicia and John are completely out of money and it is apparent Ciara will be there for a while and they don't have the money to drive back and forth to the hospital (they have to for the dog and for Hunter) and they can't afford to afford food while they are staying with Ciara. If ANY of you can please even just donate a few dollars to her Paypal.com account it would help out so much and they would be forever grateful. If you go to www.paypal.com and send money to Alicia's e-mail address: MPS3MOM@HOTMAIL.COM it goes straight to her and she can use it. If anyone has an questions on how to donate please e-mail me...Sabiemc@aol.com and I will help guide you through. Thank you and again...pray like crazy.

Alyssa

Ciara is on oxygen for pneumonia


Ciara has on the compression vest which shakes her and loosens the mucus, she hated that.



Hey everyone, this is Alyssa updating for Alicia. As a lot of you know yesterday Ciara was taken to the ER. She has been in a lot of discomfort lately and when Alicia took her pulse-ox yesterday it was down at 71. They rushed her in and after x-rays and other test were done it was shown that she has bacterial AND viral pneumonia. The x-rays shows that her lungs look "fluffy".

Last night was pretty rough for her and she had to be suctioned quite a bit and she is now on a mask instead of the cannula (as she is a mouth breather) and she is on 10 liters of oxygen. The doctors have not come in yet today, but when they do I will update again to let you all know what is going on. She did develop a fever recently that has been brought down by ice and meds. At the moment she is feeling pretty miserable.

As always please keep praying. This poor child had such a hard time lately, it is heartbreaking. She is strong though...she will beat this stupid pneumonia! Keep Alicia and John in your prayers too...

Ciara's Godmother,

Alyssa

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Thursday, January 14, 2010 11:42 AM CST

I am so sorry I haven’t updated in a while. Since my last update we went to Florida for the MPS Conference. I had been worried about Ciara having seizures on the flight like she did last time but she did wonderful. Hunter was the one that screamed both flights there and both flights back, I am assuming the pressure change made his migraines start up but who knows. The hotel we all stayed at was huge which nobody liked because we were all spread too far apart and it was almost impossible to visit and talk with other MPS families because we were all in different buildings and some were on the opposite side of the lake, I will never stay there again. But we had a wonderful time seeing old friends and making new ones. I didn’t realize how emotionally hard it would be on me and for two weeks after the conference I was still an emotional wreck. Ciara and Hunter were the most progressed kids at the conference, most of the other kids were fairly newly diagnosed and young so even though I know how “bad” my kids are, just seeing the other parent’s reactions when they saw for the first time what their kids futures will be was hard, I wasn’t expecting that. Some parents even walked out of the meetings because it was too hard for them and I totally understand, MPS sucks. It rained the first couple of days we were there but on Saturday when we all went to the Magic Kingdom it was a wonderful day and we had a great time and we didn’t get back to the hotel until after midnight. Sunday we stayed at the hotel and hung out with friends and then we came home that Monday. On the way home my car started having issues and just as we got home it died so I was without a car for a few days. I was still too emotional from the conference and then not having a car and it was Christmas Eve I just couldn’t wait for Christmas to be over and for the new year to come, I prayed that it would be a better year. We went to friends’ house for a New Years Eve party with the kids and had a great time. While we were in Florida Ciara started breathing funny and is still doing it three weeks later. We took her to the doctor last week and all they told us to do was give her Afrin, which of course hasn’t worked. The new year started off with Hunter having his first seizure which broke my heart, he has entered a new level of Sanfilippo and it sucks, I was hoping he wouldn’t have to deal with that like Ciara does. I don’t want to start him on any seizure meds until I know how often he is having them so I am just going to watch him and see what happens. For the past two weeks we have all been sick and no matter what I try we can’t seem to get any better. Other then all of that we haven’t done a whole lot because my back has been out for weeks and John’s arm is bothering him so we just stay home. Below are a few pictures from our Florida trip.

US WITH PLUTO & GOOFY


HUNTER HAS HIS CANDLE FOR TOMMY AT THE "REMEMBER OUR CHILDREN CEREMONY"


MAGIC KINGDOM


AT THE HOTEL


HANGING AT THE HOTEL


Hugs To All,

and ^^Angel^^

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Friday, December 4, 2009 7:17 PM CST

So far Hunter’s tooth seems to be holding it’s own (knock on wood). Last week I noticed that he had some bruises and he had dried blood on his mouth in the mornings which made me worry. I called the Hematologist and told him what was going on so he sent us for some lab work to check Hunter’s platelets. They called the next morning and his platelets which should be 150,000 and were 108,00 two weeks ago and now down to 83,000 which is why he is bleeding and bruising. They don’t want to do anything yet but I have to take him back on Monday for another blood test and then go from there. If his platelets are still low I am going to see if they will give him a bag of platelets before we fly to Florida for the MPS Conference. Ciara is doing alright, she had a couple seizures earlier this week but recovered well. I am worried about her flying because last time we flew to Florida she had seizures on the flight there and on the flight home so I am stocking up on Diastat just in case that happens again.

Here is a link to watch a video of our Sanfilippo kids and what it's like to live in their shoe: SANFILIPPO VIDEO

If you are on facebook, PLEASE vote for the Will Luthcke Foundation to win money from Chase, all monies will go to Team Sanfilippo to find a cure. There are only 7 days left so PLEASE VOTE!!!

CHASE COMMUNITY GIVING-VOTE

Hugs To All,

and ^^Angel^^

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Monday, November 23, 2009 11:48 AM CST

Hunter got his teeth fixed but when I had called the dentist to schedule the surgery I told them that my dentist said that Hunter might need a root canal. So, we are at the hospital waiting in pre-op for them to come take him to surgery the dentist came in and said that he would try and fix his broken front tooth but he doesn't do root canals so if he needed one he would pull the tooth. I said I didn't want to pull his tooth because they just pulled 13 teeth 3 months ago so he doesn't have that many teeth left in there plus he has the bleeding issue because of his spleen. I wasn't sure what to expect when Hunter came out of surgery, which took an hour and a half longer then they said it would, but his tooth looks good but the dentist said he filled his tooth but we need to watch it because it might need a root canal. I wasn't too happy about the thought of having to go through all of this again so we are praying hard that his tooth doesn't need any more work. Ciara seems to be doing pretty good, I just wish I could get her out of the house more, she really loves to go out but I can't carry her and now John has hurt his arm so he can't lift them either so we are home a lot. I wrote the Ellen Show asking if she could help us get a van for the kids but I know I won't hear anything from them but I thought I would give it a try LOL. This Wednesday, November 25, is Tommy's Angel Day. Tommy has been gone six years already, sometimes it seems like a lifetime and sometimes it seems like it was just yesterday and I miss him so much. Over the weekend I found the kids' photo albums and was looking through them and although it was sad to see them not doing all those things anymore, it was so much fun going back in time to the days where Ciara would yell at me if I touched her babies (Hunter & Tommy) and to see her baking and decorating cupcakes for her daddy. To see Hunter screaming on Santa's lap and in the audience watching Barney Live. Then there was my little Tommy always trying to keep up with Ciara and Hunter, just too precious for words. I miss those days so much but I am so thankful that took pictures of every moment of their lives. Don't rush though life, stop and take a moment to look at what you have and to cherish it.

BEFORE SURGERY


AFTER SURGERY




Hugs To All,
and ^^Angel^^

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Monday, November 9, 2009 6:07 PM CST

FRIDAY The 13th UPDATE: Hunter is going in for his dental surgery under general anesthesia this afternoon so please say a prayer that all goes well.


Hunter came home from school just now with half his front tooth missing. I called my dentist here in Ione to see if they might be able to fix it. I brought him in and they said that it is a big break and they wouldn't be able to fix it because Hunter wouldn't even let them take an xray. I called the dentist that pulled his 13 teeth a couple months ago and they won't see him because it is a permanent tooth and they only deal with baby teeth and the woman wouldn't refer me to another dentist that works with Kaiser. I told her that the dentist gave me the name of another dentist when he pulled Hunter's teeth but I couldn't remember his name and told her to look in his chart. She finally called me back with the phone number to this other dentist so I called and he isn't in on Mondays. Now the other issue is that Hunter has an issue with his spleen called Idiopathic thrombocytopenic purpura , it is eating up his platelets so he can't stop bleeding. When we saw the hemotologist he said that whenever Hunter needs dental work from now on he will have to be put on meds for a week before the dental procedure to try and prevent any more bleeding issues. Also, dentists that work with Kaiser are only at Kaiser one day a month so now I don't know if we will get this fixed before we go to Florida next month. I am just beside myself and don't know what to do, I don't want him to go under general anesthesia again after what happened last time but I guess I will just have to see what this new dentist says. Say a prayer that Hunter isn't in any pain and doesn't get an infection.

Oh, by the way, we are all still sick here too!

Hugs To All,
and ^^Angel^^

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Sunday, November 1, 2009 12:10 AM CST

TUESDAY 9:20 AM UPDATE: The doctor is putting Hunter on Prednisone so hopefully that will help with this tight wheezy cough. Ciara and I are sick now too, I pray she dosn't get pneumonia from this.

I am sorry I haven't updated for a month but nothing has really been going on around here. The kids have been doing pretty good and we all got our flu and H1N1 shots a couple of weeks ago. A couple of weeks ago we also went to the MPS Run LA which was amazing as usual. You can see pictures from the MPS Run by clicking here MPS RUN PICS I bought plane tickets so we are definitely going to the MPS Conference at Disney World and I am so excited to see all our friends again, it has been too many years! Yesterday we took the kids to Apple Hill and had a good time. We went pumpkin hunting and when we stopped at the Mill View Ranch Farm (#23 at Apple Hill) the owner was standing outside and he was so nice to us. He helped us get the kids into the pumpkin patch and then gave us 12 free pumpkins so if any of you are going to Apple Hill, please stop by Mill View Ranch and buy something, they were so nice to us and we will definitely be going back there every time we go to Apple Hill. When we got back home we headed over to the fire dept to have dinner and hand out candy and fire safety items to all the kids. John showed up in his gorilla costume and it was pretty darn funny, I think he had more fun then the kids LOL. I made the kids' costumes, Ciara was a Garden Fairy and Hunter was the Pumpkin King in the pumpkin patch, they were so cute and Hunter had the best time, he was smiling and just loving it. Ciara wasn't too happy but she did OK, it was a long day for her. Below are some pictures from yesterday and thank you for checking on us!

Hugs To All,
and ^^Angel^^

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Friday, September 18, 2009 10:32 AM CDT

SUNDAY UPDATE: SOMETIME LAST NIGHT OR EARLY THIS MORNING SOMEBODY STOLE ONE OF OUR WHEELCHAIRS OFF OUR FRONT PORCH. WHAT KIND OF ASSHOLE WOULD STEAL A KIDS WHEELCHAIR?


Today is my Tommy's birthday and he would be 10 years old. I can't believe he would be 10 but to me he is forever 4 years old and my little frog face LOL. Tommy, I miss you so much and I wish you were here with us to celebrate your birthday today but I know you have a lot of friends up there with you to party with today. I hope you visit us this evening when we are having your birthday party, just to let us know you are there. Thank you for watching over your brother and sister, you are the best guardian angel ever! I love you!!!

Now for Ciara and Hunter, they are doing pretty good. Hunter isn't screaming all the time anymore so that is wonderful. We had to increase Ciara's seizure meds and her Baclofen and she seems to be doing OK on the new doses. She also gained 5 lbs so now she has a flat tummy instead of a concaved one and the girl has thighs, it's great! Of course now I can't carry her at all but since John isn't working anymore he can help me which is very nice. We have decided that we are going to the MPS Conference in December at Disney World so I am very excited to see all of our MPS friends again, it has been too long. We lost a bunch of our friends this year which is very sad, I wish they could be there, it will be hard to not have them there this year. We decided to go because it will be the last time that Ciara and Hunter will be able to attend a Disney Conference since they are every 4 years. Who knows if they will be here for the next one and if they are I don't think we would be able to fly them. At the last conference 5 years ago Ciara had seizures on the flight there and the flight home so we are concerned about her flying this time but will be prepared if it happens. Christmas will be tight since the conference is the week before but it will be worth it! Thank you all for check in on us!

A BIRTHDAY IN HEAVEN

I heard you crying yesterday
And felt your heart-sent love
So I’m sending you this message
Now, from Heaven up above.

You’re wondering if I’ll celebrate
My birthday (way up here)
I know you’re missing me today
I feel your essence near.

God planned a special day for me
He told me with a wink
He’d ordered me a special cake
(It’s Angel food, I think)

I’m getting lots of hugs from God
He’s really good at that
And every time that I walk by
He gives my head a pat

Balloons will fill the streets for me
They float up through the clouds
And we have lots of clowns up here
That make us laugh out loud

There is a birthday carousel
Jeweled horses ride the wind
With music playing oh so sweet…
The magic never ends

I’ve made so many friends, you see
We laugh and play and sing
We ride our bikes and play jump rope
And sleep in Angel’s wings

We’ll have our cake and ice cream
And open gifts, surprise!
But we don’t blow out our candles here
Instead they light the skies.





Hugs To All,
and ^^Angel^^

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Sunday, August 30, 2009 4:53 PM CDT

This week started off good but ended up with Ciara and Hunter getting sick which I knew was going to happen since Hunter just started back to school. It all started on Wednesday with Ciara just not looking quite right and breathing a little funny so I put her in her wheelchair to see if that would help her breathe better. A few minutes later she had a big seizure and felt a little bit hot so I gave her some Tylenol and decongestant and she seemed a little better. But at 4:00 in the morning Hunter decided that he was going to get sick so he started coughing and choking so I gave him some decongestant and kept him home from school. On Thursday morning Ciara had another big seizure and then a couple hours later she had a third one and she felt hot again so I called John and told him to come home from the fire dept to listen to her lungs to see if she might have pneumonia. He listened to her and said that he thought he heard some crackles in her lungs so I and then hooked her up to the feeding pump because we decided to take her to Sacramento to the emergency room. After her feed was done I got her dressed and John listened to her lungs again and said that they sounded clear now so we decided to keep her home and take her to see her doctor in the morning. Again at 4:00 in the morning Hunter started coughing and choking so he stayed home from school again with John while I took Ciara to the doctor in Sacramento but thankfully Ciara didn’t have a fever anymore. The doctor said that the kids don’t have H1N1 and Ciara’s lungs sound clear and she had a good pulse ox so they just have a cold bug, thank God! Normally I wouldn’t have been too worried but Ciara never gets a fever when she is sick and I am terrified of the kids getting the H1N1 virus so that is why I took her in, better safe then sorry. John is doing his clinicals this weekend so the kids and I are stuck at home. Man, I really wish there was an organization that could help us get a new van so I can take the kids out places, my back is so bad I can’t lift them so if John isn’t home then we are stuck in the house which isn’t much fun for the kiddos. This coming week Ciara has appointments with her neurologist and GI doctors so that is good, I have things to discuss with both of them. Oh yeah, the day Ciara had the two seizures I think Hunter might have had his first seizure, I HATE SANFILIPPO SYNDROME!!!

Hugs To All,

and ^^Angel^^

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Sunday, August 23, 2009 8:50 PM CDT

Since our last update we have been on the move a lot. First off, Hunter started back to school this week and he really seems to be happy to be going again. Poor guy had such a horrible summer so he is due for some fun. On Friday we took the kids to San Francisco for the day and we had a blast. Our goal for the day was to stop at as many tourist spots as possible, usually we just go to Pier 39 and go home. Before we left for San Francisco I had found some coupons online so we only ended up spending $18 all day, it was great! After we walked around Pier 39 and Fisherman’s Wharf we saw Alcatraz and then drove down Lombard St. By that time it was time to feed the kids so we stopped at Alama Square and took a family photo in front of the “Painted Ladies” and then we let the kiddos lay on a blanket and stretch out for a while and Ciara was very happy about that and just kept babbling, it was cute. After they relaxed and I fed them it was time to hit more tourist spots so we stopped at the Golden Fire Hydrant which is the only fire hydrant that worked during the 1906 fires so that was cool. We stopped at other spots but our last stop was the Golden Gate Bridge and Treasure Island. We finally got home around 9:00 that night and Hunter was asleep two minutes later, they had a big day.

If you recall, a couple of months ago we won new couches. Well we finally took the old couches out and put the new ones in and they are great. But there is a problem, for some reason Ciara and Hunter keep falling off of them. I have had to take the back cushions off so they have more room so flop around and not roll off. So, we are now looking for a futon for them to lounge around on, but most of the ones we have seen wouldn’t work because they would be able to get their heads, arms and legs stuck on the armrests on the futons. We found one that will work but it is $300 and we don’t have that much money so tomorrow we are going to IKEA to see what they have. Well, I guess that’s it for now, thanks for stopping by!

Watching the Sealions at Pier 39


Alcatraz Island in the background


Those houses are called the "Painted Ladies"


Golden Gate Bridge


Hugs To All,

and ^^Angel^^

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Sunday, August 23, 2009 8:50 PM CDT

Since our last update we have been on the move a lot. First off, Hunter started back to school this week and he really seems to be happy to be going again. Poor guy had such a horrible summer so he is due for some fun. On Friday we took the kids to San Francisco for the day and we had a blast. Our goal for the day was to stop at as many tourist spots as possible, usually we just go to Pier 39 and go home. Before we left for San Francisco I had found some coupons online so we only ended up spending $18 all day, it was great! After we walked around Pier 39 and Fisherman’s Wharf we saw Alcatraz and then drove down Lombard St. By that time it was time to feed the kids so we stopped at Alama Square and took a family photo in front of the “Painted Ladies” and then we let the kiddos lay on a blanket and stretch out for a while and Ciara was very happy about that and just kept babbling, it was cute. After they relaxed and I fed them it was time to hit more tourist spots so we stopped at the Golden Fire Hydrant which is the only fire hydrant that worked during the 1906 fires so that was cool. We stopped at other spots but our last stop was the Golden Gate Bridge and Treasure Island. We finally got home around 9:00 that night and Hunter was asleep two minutes later, they had a big day.

If you recall, a couple of months ago we won new couches. Well we finally took the old couches out and put the new ones in and they are great. But there is a problem, for some reason Ciara and Hunter keep falling off of them. I have had to take the back cushions off so they have more room so flop around and not roll off. So, we are now looking for a futon for them to lounge around on, but most of the ones we have seen wouldn’t work because they would be able to get their heads, arms and legs stuck on the armrests on the futons. We found one that will work but it is $300 and we don’t have that much money so tomorrow we are going to IKEA to see what they have. Well, I guess that’s it for now, thanks for stopping by!

Hugs To All,

and ^^Angel^^

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Saturday, August 15, 2009 7:14 PM CDT

This is going to be short because my computer has been dead but I got it up and running for a couple minutes so I need to update before it dies again in a few minutes. I don't know when I can update again, it depends on when I get money for the computer so if you want updates on the kiddos you can find me on facebook at www.facebook.com/mps3mom. (Just let me know you follow me on here so I will know who you are.) Since our last update Hunter had a really bad time, he was screaming bloody murder until yesterday. I had thought that the pain was from some new molars that are popping through where they pulled out all his teeth but after giving him Orajel, Tylenol, Teething Tablets and Vicodin, he was still screaming so it couldn't have been his teeth. I started messing around with things to try and figure out what was hurting him. Sometimes when he cried he would have his hand on the back of his head and sometimes he would kick his feet like he had a tummy ache which was possible because he hadn't had a BM in a week. So I started giving him extra fluids a few days ago and after a couple days he stopped crying and last night he was laughing, then he finally had a BM. So I think he had a tummy ache from needing a BM and a headache because he was dehydrated. Today he has been very happy and hasn't cried once, thank God! I was wondering what I was going to do with him at school. Ciara had a few days where she was crying, she needed to have a BM too but something else was going on. She was having uncontrollable movements from head to toe and all of her muscles were so tight and she was bright red and sweaty all day. That night I had to give her a dose of Haldol which she hasn't needed in a year and she finally calmed down and slept all night and has been fine since. We did take the kids to Lake Tahoe last week because it was too hot here, it was 101. Of course on the drive to Tahoe it was snowing, raining and windy so we didn't do too much but we did have lunch with friends and watched them go scuba diving but we kept the kids in the car to stay dry. Maybe next time I update I will have been able to get my pictures downloaded, if I can fix my computer. We are looking for a place to go next week, just a day trip, so if anybody has any ideas of someplace new, let me know! Otherwise we might take a drive to San Francisco, but not if the transit people are still on strike. Thanks for checking in and please sign our guest book so I know you were here, thanks!

Hugs To All,
and ^^Angel^^

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Saturday, August 15, 2009 7:14 PM CDT

This is going to be short because my computer has been dead but I got it up and running for a couple minutes so I need to update before it dies again in a few minutes. I don't know when I can update again, it depends on when I get money for the computer so if you want updates on the kiddos you can find me on facebook at www.facebook.com/mps3mom. (Just let me know you follow me on here so I will know who you are.) Since our last update Hunter had a really bad time, he was screaming bloody murder until yesterday. I had thought that the pain was from some new molars that are popping through where they pulled out all his teeth but after giving him Orajel, Tylenol, Teething Tablets and Vicodin, he was still screaming so it couldn't have been his teeth. I started messing around with things to try and figure out what was hurting him. Sometimes when he cried he would have his hand on the back of his head and sometimes he would kick his feet like he had a tummy ache which was possible because he hadn't had a BM in a week. So I started giving him extra fluids a few days ago and after a couple days he stopped crying and last night he was laughing, then he finally had a BM. Today he has been very happy and hasn't cried once, thank God! I was wondering what I was going to do with him at school. Ciara had a few days where she was crying, she needed to have a BM too but something else was going on. She was having uncontrollable movements from head to toe and all of her muscles were so tight and she was bright red and sweaty all day. That night I had to give her a dose of Haldol which she hasn't needed in a year and she finally calmed down and slept all night and has been fine since. We did take the kids to Lake Tahoe last week because it was too hot here, it was 101. Of course on the drive to Tahoe it was snowing, raining and windy so we didn't do too much but we did have lunch with friends and watched them go scuba diving but we kept the kids in the car to stay dry. Maybe next time I update I will have been able to get my pictures downloaded, if I can fix my computer. We are looking for a place to go next week, just a day trip, so if anybody has any ideas of someplace new, let me know! Otherwise we might take a drive to San Francisco, but not if the transit people are still on strike. Thanks for checking in and please sign our guest book so I know you were here, thanks!

Hugs To All,
and ^^Angel^^

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Wednesday, August 5, 2009 1:14 PM CDT

Since my last update the kids have been doing OK. The past four days or so Hunter has been screaming in pain and I can see a new molar popping through his gums so I have been giving him Tylenol and Orajel. Yesterday was a little better but I can only assume that having 13 baby teeth pulled means that there might be 13 new adult teeth moving around and trying to come in and that must hurt like hell, poor guy. He just had an appointment with the Hematologist and that was interesting. First of all this doctor told me that he was on the transplant board which decided against paying for Hunter and Tommy's transplants at Duke all those years ago. I thought that was kind of ballsy of him to tell me that. Also, when Hunter was in the hospital after his teeth were pulled and they couldn't get the bleeding to stop, the hematologist that they were talking to studied under Dr. Kurtzberg at Duke and already new about our kids so I thought that was kind of cool, small world. Anyway, this Dr. showed me all of Hunter's lab results over the past year or so and I could see how his platelets and red blood cells had gone down and are now slowly going back up. There are two reasons for this, the first one is that Hunter could have ITC which I told you all about when he was in the hospital. The second is that his spleen might be eating up his platelets so the doctor checked out his spleen and it is enlarged so we are pretty sure that his spleen is causing the problems. Now for those of you who have been following us since Tommy's transplants you will remember that during Tommy's second transplant he had to have his spleen removed because of the same thing. So, Hunter's isn't extremely large right now so we are just going to watch him and see how he does and trust me, I will never forget the color Tommy turned when he crashed and was rushed to the OR so I know what I am looking for and I pray we don't go that route again. That is it for the medical portion of this entry and now on to other things. John is officially unemployed as of August 1st so it will be interesting to see how things go from here on out. We are still paying on the $20,000 we owe the cemetery to hold the plots by Tommy for Ciara and Hunter, we still have to pay $300 a month because of an IHSS mistake and now we have to pay $1000 of month COBRA to keep our health insurance so yeah, it will be interesting LOL. But, we are going up to the lake tomorrow to go fishing so I know the kids will be happy to get out of the house and so am I! School starts in two weeks so I am looking forward to that too and I know Hunter will be happy to get back to school too.

Hugs To All,
and ^^Angel^^

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Monday, July 20, 2009 4:11 PM CDT

WEDNESDAY UPDATE: Hunter's lab results came back and I am very happy. His platelets went up to 107. They are still not at 150-200 where they should be but I am happy with the 107. His white cells are back up to normal too and he is not anemic anymore so he is looking much better.

Our first night home from the hospital Hunter was screaming all evening but the next morning he finally had a BM, after not having one for 5 days. Since then he has been doing great. Now all we can do is wait and see what happens with his platelets over the next six months. Tomorrow we have an appointment with his pediatrition and to get some lab work done to see what his platelet count is. I doubt we will know the results tomorrow, it is Kaiser after all. Ciara has been much better since her ER visit last week too. Today she was being very silly, flinging herself around, smiling and laughing, she is just too precious. That's all I have for now, I will post an update when I know what his lab results are.


Hugs To All,
and ^^Angel^^

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Saturday, July 18, 2009 1:58 AM CDT

We got to bring Hunter home yesterday. He definitely has ITP so we have to watch him closely to make sure he doesn't bleed. We don't know why this is happening but the doctor says that hopefully in six months he will be back to normal but it will take six months to see. Last night he screamed a lot but he hadn't had a BM in 5 days. He has had a few since then and today was a very happy guy and didn't really need pain meds but twice so that was wonderful. His lungs are still sounding clear and so do Ciara's lungs so both kids seem to be much better then at the beginning of the week. Next week we have to have some lab work done to check Hunter's platelets, they were at 88 when we left the hospital yesterday, they should be 150-200. Thank you all for the prayers, they worked!

There are some Sanfilippo kids who are going through transplant at Duke so I thought I would post their websites for those who are interested:

AIDEN, OLIVIA, and ALAN

Hugs To All,
and ^^Angel^^

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Tuesday, July 14, 2009 10:57 PM CDT

Update Wednesday 5:30 PM: Hey, Alyssa here again. Hunter is still in the hospital with a new complication. First of all his breathing is doing better, but he did require platelets. For some reason he is thrombocytopenic (body not making platelets). So they gave him a bag today...took blood to look at his numbers and his platelet count went from only 78 to 96, when it should have jumped up into the high 100's, so something is killing off his platelets. They think he has something called ITP (Idiopathic thrombocytopenic purpura). They are running more test right now and we are awaiting the results. More than likely he will stay in the hospital tonight and receive IVIG as well as another bag of platelets. He is still bleeding, but not as bad. I will update more when I know more. Please keep praying...

Update 9:25 PM: Hunter's x-ray came back. There appears to be something in his right lung. They are not certain if it is blood or not, but most likely is. They are also not sure how filled it is. Either I or Alicia will update more later

Update 9:20 PM: Hunter's bleeding is really bad so they are doing test to see if there is something wrong other than the obvious. He should have clotted a while ago and it won't seem to stop. They are testing for bleeding issues

This is Alyssa updating for Alicia. Today has been a bit rough for Hunter. He went into surgery this morning around 9. They ended up taking out 13 teeth!!!! Most of them were baby teeth.

When they took Hunter out of surgery they had a hard time waking him up....in fact it took a few hours and he also was not breathing well on his own. He was stating in the low 90's with out oxygen. His mouth is also having a hard time bleeding...it just does not seem to stop. They also think that he must have aspirated his blood and that is why he was not breathing well, because the blood is in his lungs. They decided to transfer him to Kaiser Roseville to be admitted.

He just arrived at Kaiser Roseville and is awaiting the results from his x-rays. I just got off the phone with Alicia and she said he was acting more like himself, but he is stating at around 93 on 3 liters of oxygen. Needless to say he is going to be staying the night at the hospital...John will be staying with him and Alicia is going to bring Ciara home once she knows Hunters status better. I will update right when I hear the x-ray results and we know more. Please keep Hunter in your prayers and pray that his pain stays under control, as well as his bleeding and that his lungs clear.

Please also pray for John and especially Alicia. She has had a very hard time lately. With the insurance crap, then Ciara getting sick last night and going to the hospital, now Hunter...AND when she was at the hospital today her diamond came out of her wedding...which she didn' t realize so it is now gone. This family has been through enough....Please pray for their strength. Thank you...

Alyssa

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Friday, July 10, 2009 10:07 PM CDT

TUESDAY JULY 14 7:34 AM UPDATE: The xrays were clear and Ciara's blood work looked good so she didn't have to stay in the hospital. We are waiting for the RSV and H1N1 results to come back so we have to start her on Tamiflu this morning and when we get the results of those tests, if they are negative then we can stop the Tamiflu. We are now leaving for the hospital for Hunter's dental surgery so with us luck, they have to do it under general anesthesia at Kaiser.

MONDAY JULY 13 7:20 PM UPDATE: Ciara is on her way to the emergency room. She is having trouble breathing and it sounds like she has fluid in both her lungs. I will update when I know more but you can get better updates if you follow me on Facebook.

To get daily updates you can find me on Facebook here: MY FACEBOOK PAGE Just send me a note saying you follow our website and I will approve you.


I would like to say that everything is great, but it's not. We FINALLY got all of the feeding tubes we had been waiting for. Now as for Hunter's dental surgery, it is SUPPOSED to be on Tuesday but yesterday I received a phone call from the dentist's office. She said that they were having trouble getting whatever info they need from our insurance company and if they didn't get it by noon the next day, they would cancel Hunter's surgery again. I called the insurance and I think I got the info that the dentist asked for. I called the dentist's office and of course I got their machine at 1:00 so I left a message and asked them to call me back. We went to our appointment with our geneticist. Later on I called the dentist back because I hadn't heard from them and they had left for the day, it was 4:30, so I left another message with their answering service to have them call me in the morning. Hunter has been screaming every day because his teeth hurt and I am pissed at the dentist and heartbroken for Hunter. Of course nobody called this morning so I called the dentist at 11:00 and they said that at this point it is up to the dentist to decide if he wants to go ahead with the surgery even though they don't have the payment info from the insurance and if he says no, they will cancel the surgery. The dentist wasn't in the office and they were closing at noon today. I told her to tell the dentist that Hunter has been screaming every day all day and if he can't do this then I will find somebody else, this is unacceptable. Of course there is nothing else I can do right now, I just have to wait until Monday and I really think that I am going to take Hunter to the dentist's office and sit there so they can listen to him scream.

Hugs To All,
and ^^Angel^^

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Sunday, June 28, 2009 3:14 PM CDT

We finally have a date set for Hunter's dental surgery, July 14! So having solved that issue, all I can say is that we STILL don't have any feeding tubes for the kids. Friday I was told that one shipment came it but they gave them to other patients and the next shipment will be in a week or two. So, all I can say to that is Lord help the people that I get on the phone tomorrow when I start making my calls because I am calling everything from bottom to top at Kaiser and Apria and I will call the media too. I have one feeding tube left for the kids to share and it is time to place another monthly order and I haven't even received last months order. You all know what happens when people mess with my babies so tomorrow isn't going to be pretty and I don't care who I have to yell at, tomorrow I will get one tubes!

Ciara had a seizure on Thursday and another one on Friday but yesterday she had a wonderful day and was very happy and alert. John was supposed to do some overnight hauls this week but the company kept canceling them, I guess there isn't enough work right now so when he came home again yesterday I wasn't too surprised. We decided to put the kids in the car and drove around for a while but it was too hot to do much else with them, it was 104 degrees. We ended up in Elk Grove so we went out to dinner with John's sister and had a great time. Hunter had an appointment with the GI doctor this week and the doctor said that he didn't think Hunter has migraines and I honestly don't know if he does or not, I never fully believed that diagnosis. So this doctor said that I should start to ween him off of this migraine med so for the next three nights I lowered his dose. And for the next three days he was crying and fussing so last night I gave him his normal dose to see if it made a difference so I will see how he does today. I guess that's about all for now. We still would love to go to the MPS Disney Conference but as time goes on, it doesn't look like we will be able to make it. I just don't see us having the $3000 we need for the trip which makes me really sad, we have missed the conference for the last four years.

Hugs To All,
and ^^Angel^^

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Saturday, June 20, 2009 10:45 PM CDT

Since my last update nothing has really changed. We still don't have any feeding tubes, again I was told they would be here yesterday but they weren't. Hunter starts summer school on Monday and I need tubes to send to school so they can feed him, I am so angry. We still haven't heard anything else about Hunter's dental surgery but that will take another week or so I am sure. Honestly that is all that has been happening which is not much but to me I will take not much considering the alternative. I would like to wish John , my dad and Smoky a wonderful Father's Day!




THE GIFT
(For Grieving Fathers On Father’s Day)

Here I sit and stare
Out the window of our home,
On this Father’s Day
Feeling so very alone.

Oh, how I wish
My child was still here
Bringing me a Father’s Day gift
Even an ugly tie would be so nice this year.

But…my child has gone to Heaven
And is playing on streets of gold
Listening to Jesus tell stories
Of so many years ago.

And today I find myself thinking
About the meaning of a gift
For a gift is something given to you
That makes you smile and gives you a lift.

But…many times we receive a gift
And then lose it or misplace it someday
But we never forget the gift
For the memories stay tucked away.

And the most precious gift…that I was given
To me…so many years ago
Was the day my child entered this world
And touched my life, heart, and soul.

So on this Father’s Day
I thank the Lord for the most precious gift of mine
My child in Heaven…treasured times and memories
That will remain with me…my entire lifetime.

For a gift is a gift
And my most precious gift…remains in my heart
And just then…a rainbow appears out my window
Reminding me…that my gift and Heaven are not so far.






Hugs To All,
and ^^Angel^^

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Wednesday, June 10, 2009 7:50 PM CDT

This past week hasn't been a good week for me but at least the kids are doing well. (Knock on wood.) This weekend I had to mail $1000 to the cemetery to hold Hunter and Ciara's places next to Tommy and now I have to pay off the rest of the $20,000 so they don't give our spots away. I was actually OK writing out that check, I thought it would be harder but I guess I already know what the future holds and knowing that my babies will be together again made it easier to put that check in the mail. Hunter had a few pre-op appointments this week for his dental surgery at Kaiser on Friday and those went well. BUT, this morning the dentist called to get my credit card info for our portion of the bill. When I got off the phone with the dentist I spent a lot of time on the phone with Kaiser trying to find out what our co-pay would be for them when we got to the hospital and eventually I found somebody that knew. That is when the dentist called back and told me that they just tried to verify our insurance again before the surgery and they were told that it was canceled. I then called John's company and talked to them, yep, they switched dental insurance on June 1st but they didn't have a policy number or anything yet to give me. I called the dentist back to give them the new insurance info and they told me that they have to cancel Hunter's surgery on Friday and get it approved through the new insurance, which will take a few weeks. By now I was in tears, we have been trying for two years to find somebody that would take care of the kids' teeth and now it fell through again. Of course I had already given them my credit card info and they said they had already charged me so they will have to reverse the transaction so that was another $700 I will have to wait to get back, hopefully soon. After a few more calls to John's employer and the dentist there was nothing else that could be done. Poor Hunter wakes up every morning with a bloody mouth and now he has to wait at least another month until the insurance can pay or if it's after July then we are without any insurance and we will have to pay for the whole surgery so he will have to wait until we have the money, poor little guy, it breaks my heart. So now for the second half of my day today. For two weeks I have been trying to order Ciara and Hunter's feeding tubes,like I do every month, but they never come. I have been calling Kaiser for two weeks and today, after more phone calls, I was finally told that the company has discontinued their feeding tubes and they don't have anything for us. So, again, I was in tears, how am I supposed to feed them without any tubes? I called their GI Dr. to see if there was something that they could do but their phone number was changed and after being transferred to several different machine, I finally ended up at the Dr.'s answering machine so I left a message and nobody has called me back. I found the feeding tubes on Amazon but they are $160 for a case of 6 tubes which each kids uses 6 tubes a month, I can't afford that. BARD TUBE ON AMAZON So, that is what has been happening and I am don't know how much more I can take!

This picture was AFTER I had cleaned the blood off of him this morning, I can't get the rest off.





Hugs To All,
and ^^Angel^^

We have a donation page set up, just click here to check it out: BENNETT KIDS PAGE

I also set up an account at AdaptiveMall to get Ciara and Hunter a special needs tricycle to ride and help with their physical therapy. You can check out our page at ADAPTIVE BIKE ACCOUNT PAGE

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Sunday, May 31, 2009 2:26 PM CDT

Since our last update Hunter has been doing very well but Ciara was having a lot of trouble with her allergies, to the point where she was constantly coughing and choking on the stuff draining down her throat but she doesn't have enough power to cough it up. Her doctor called in a prescription for Flonase which has really helped Hunter with his allergies this year and since then she has been SO much better. This past week Ciara has been exercising her vocal cords and “talking” non stop, I guess she truly is a teenager now! We finally found a dentist who is willing to work with him, thank God, so in a couple of weeks Hunter is going to have a few teeth pulled and work done under general anesthesia at Kaiser. It will be done on June 12 so please say a prayer that all goes well, putting my kids under anesthesia freaks me out because of their delicate airways. Friday Hunter came home from school with ribbons pinned all over him, it was so cute. He got a first place for the 25 yard dash, second place for the tug-o-war and third place for the class relay, way to go Hunter! Yesterday we went to Travis Air Force Base for Kassie's Kause MPS Run and it was a lot of fun. I bough a few raffles tickets and we won a new set of couches, woohoo! Here is the link to see the pictures from the run, KASSIE'S KAUSE PICS

I also set up an account at AdaptiveMall to get Ciara and Hunter a special needs tricycle to ride and help with their physical therapy. You can check out our page at BIKE ACCOUNT

Hunter's Ribbons

We won these couches!





Hugs To All,
and ^^Angel^^

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Friday, May 22, 2009 10:53 PM CDT

This has been a very hard week for me. We lost our little buddy Andrew, he was 11 and had Sanfilippo Syndrome. We first met Andrew and his family when our kids were diagnosed and I feel like our kids traveled the MPS path together for all these years and it has been emotionally devastating for me having lost Andrew. I keep remembering when Tommy passed away and picturing Andrew like that and knowing that his parents and his little brother are feeling what we felt when we lost Tommy. I am cherishing Ciara and Hunter even more this week and feeling the pain of losing Tommy all over again. A few other Sanfilippo friends have been going through a difficult time and I know that all of us MPS parents are really struggling through this week but thankfully we have each other to lean on. Here are a couple of obituaries if you would like to read them: ANDREW and NATHAN and BRIGHAM

Now, for anybody that would like to help us find a cure for MPS, you can click here to find an MPS Run/Walk in your area MPS WALK/RUNS We will be attending Kassi's Kause which will be at Travis Air Force Base on Saturday May 30th and then in October we will be attending The National MPS Society's Walk/Run LA in Southern California and we would love to see you all there to help us find a cure for our children. If you would like to make a donation you can do so through the link above or you can send me a check made out to the NATIONAL MPS SOCIETY and I will take it to one of the runs with me. Our mailing address is:

Bennett Family
PO Box 1423
Ione, CA 95640





Hugs To All,
and ^^Angel^^

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Friday, May 15, 2009 1:17 AM CDT

Today, May 15th, is National MPS Awareness Day! Please take a moment and say a prayer for all MPS children, we MUST find a cure, and for those who are now in Heaven with my Tommy. MPS families and friends all across the world will be honoring our MPS kids by wearing purple today so please join us, WEAR PURPLE!!! I am decorating MPS cookies tonight and making grape Jello Jigglers to take to Hunter's school tomorrow, along with purple balloons for his class to release. If you do something in honor of Ciara and Hunter and in memory of Tommy, please take a picture and email it to me or leave a message in our guest book of what you did today, I would love to hear about it! Here are some links to MPS videos so enjoy!



MPS AWARENESS VIDEO

MPS AWARENESS DAY 2009



Hugs To All,
and ^^Angel^^

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Monday, May 4, 2009 0:38 AM CDT

First things first, Thursday is Ciara's 13th birthday, I can't believe she is going to be a teenager, who would have ever thought! We are having her birthday party on Sunday (Mother's Day) at Howard Park in Ione at 12:00. That weekend it is Ione Homecoming so we will be out at the park selling tri-tip sandwiches for the fire dept so we might as well have Ciara's party there again. So, if you can, please stop by and wish the princess a happy birthday!

OK, now for what has been happening since my last update. We did get Hunter's allergies and asthma under control but since then he had been screaming and crying non-stop for days and we couldn't figure out what it was. He would scream and hold his head so I was thinking it was his migraine or his teeth. The doctor gave him some Hydrocodone (it's like a liquid Vicodin) for pain and it did absolutely nothing, So I took him to Kaiser on Tuesday and he had a nasty bulging ear infection. He got some antibiotics and ear drops to numb his ear and we went home. After a couple days he was still screaming but instead of every 10 minutes he was crying every hour but by thing time we had gone a week with NO sleep. Friday night he cried until 3:00 in the morning and then slept for a few hours. He cried on and off for the rest of the day so I sent John to Wal-Mart to buy something for reflux, that was the only thing we hadn't tried yet. When it was his bedtime last night I gave him his regular meds, Zantac, Acidopholis, and Melatonin and he slept all night and woke up at 10:00, it was wonderful. I actually woke up at 1:00 this afternoon and I feel much better too. Hunter hasn't fussed or cried all day and this is the first day I didn't give him his ear drops or hydrocodone so all the pain must have been from reflux, poor guy. So, I pray that tomorrow goes just as well and he doesn't have anymore pain.

Hugs To All,
and ^^Angel^^

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Sunday, April 19, 2009 10:05 PM CDT

Well the past couple of weeks or so have been very bad for Hunter. He has been having a lot of trouble breathing. He coughs a lot and he has been wheezing on and off. This past week when he was on the school bus coming home, the bus driver had to stop the bus because he wasn't getting any air and she said that she was thinking about calling 9-1-1 but then he started breathing a little better. When I brought him in the house he was wheezing and that is when I realized that his allergies must have got his asthma all stirred up. He hasn't had asthma issues since he was a baby so I am not used to it, poor guy. I kept him home from school on Friday and called his doctor and she put him on Flonase, Qvar and gave him an Albuterol inhaler so that if this happens again at school, he will have an inhaler with him. She also had me switch him from Claratiin to Zyrtec. He has been on the new meds for 3 days and seems to be doing better. Now as for Miss Ciara, she has been doing alright but allergies and bothering her too. This morning she had a mucus plug in her throat and she wasn't able to breath but John suctioned her and she has been much better since. My birthday was last week and we went out to dinner with friends and family, it was fun. For Easter we stayed home and took it easy, below are a couple pictures. I guess that's it for now, thanks for checking in!

Hugs To All,
and ^^Angel^^

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Saturday, April 11, 2009 0:31 AM CDT

This is Alyssa interrupting Alicia's journal with breaking news....Today, April 11th is....drum roll please....ALICIA'S BIRTHDAY!!!!!!!!

Please join me in wishing her a very Happy 25th (again) Birthday!!! I hope you have a great day. Spoil yourself...you sure do deserve it!

Love, Alyssa
PS-Please don't kill me for sneaking around on your page...LOL

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Friday, April 3, 2009 11:48 AM CDT

I would like to start off with a big thank you to everybody who came to Hunter's birthday party. We had a great time and thank you all for the wonderful presents. We also just got back from our trip to Monterey which was fabulous. We went down on Monday and once our friends arrived we played on the beach but Ciara and Hunter stayed in the room with John because it was too cold and windy, then went to dinner at Bubba Gump's which was yummy as usual. After dinner we went to the pool but it was cold so we hung out in the hot tub. On Tuesday we had breakfast and then my met up with my dad for a little bit. Then it was time to go to Fisherman's Wharf and then had lunch at Fish Hopper. After lunch our friends went to take their dog for a walk so I walked the trail and took some cute pictures of the otters and seals in the ocean. When we got back to the hotel it was time to hit the beach again, this time we took Ciara and Hunter with and they had a good time. For dinner we went out for mexican and then we hit the hot tub again before it was time for bed. Wednesday morning we checked out and then stopped by to see some friends that live in the area and then we headed home. Ciara and Hunter had the best time, they were both very happy and I can honestly say that this was the best vacation we have had since we lost Tommy. This is the hotel we always stayed at when we went to Monterey with Tommy so it has good Tommy memories. Below is a picture from Hunter's birthday party and then a few from our trip.

Hugs To All,
and ^^Angel^^

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Wednesday, March 25, 2009 8:14 AM CDT

Today is Hunter's birthday, he is 11 years old, woohoo!!! I am bringing cupcakes to school so we will have a little party for him there but I don't think we will be doing much else since Ciara is still sick. In fact, I am sick too and I think Hunter is starting to get it, poor guy. We are having a party for him this weekend so I know he will have a lot of fun. For those of you who are coming to his party, I just thought of something that he really needs, beanbags! We need several so if anybody can find vinyl beanbags (not cloth please) that would be wonderful! As for Ciara, her lungs are getting better slowly so keep the prayers up!



We brought Ciara home Sunday but then that night she had a breathing episode and has been on oxygen ever since. She has been very agitated and I am not sure what is going on. When my car was broken into at Christmas they stole Ciara's PULSE OX MACHINE so now we have no idea what her oxygen level is and how much oxygen she needs and we don't have the $700 to buy a new one. So, we might be headed back to the hospital if we can't get her to calm down and figure out if she is hurting or having trouble breathing.





We have a donation page set up, just click here to check it out: BENNETT KIDS PAGE

Hugs To All,
and ^^Angel^^

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Monday, March 23, 2009 2:03 PM CDT

We brought Ciara home yesterday but then last night she had a breathing episode and has been on oxygen ever since. She has been very agitated and I am not sure what is going on. When my car was broken into at Christmas they stole Ciara's PULSE OX MACHINE so now we have no idea what her oxygen level is and how much oxygen she needs and we don't have the $700 to buy a new one. So, we might be headed back to the hospital if we can't get her to calm down and figure out if she is hurting or having trouble breathing.

We have a donation page set up, just click here to check it out: BENNETT KIDS PAGE

Hugs To All,
and ^^Angel^^

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Thursday, March 12, 2009 9:14 PM CDT

Saturday March 21st 5pm Update: Today was pretty uneventful...which is good! Over the course of the day Alicia has slowly turned down Ciara's oxygen and when I just spoke to her she was off and stating around 93, which she is normally around 95 so that is good! Hopefully she can remain off through the night. Last night she pulled out her IV and they had a hard time putting one in so they ended up doing it in her foot, poor girl. The only reason why she needs the IV is for IV antibiotics so hopefully she will be done with that tomorrow. AND, hopefully she will get to come home tomorrow. She has been so strong through this...Ciara is a fighter! Of course all of your prayers helped her through! I will update again as things change...and hopefully the next update will me be saying she is coming home!
Alyssa



Friday March 20th 9pm Update: Ciara is feeling a little bit better today. She is now down from 4 liters of oxygen to 1.5. Sadly we have no clue how she is actually doing inside because not ONE doctor came in today except for early this morning to update on her condition. On top of that Respiratory was supposed to come in every 2 hours and didn't show up all day until late afternoon. HELLO, she has double pneumonia and a collapsed lung. Ugh....Kaiser is so frustrating and at times neglectful. Don't get me wrong, the nurses are great there (can't say the same about all the doctors), problem is they have too many patients per nurse and they are overwhelmed so they have to pick and choose who is of higher priority (and this I got from an actual nurse there). It is just sad and sicking. No child should have to wait to get care in a hospital because people are to busy. Especially when a child can't speak to say "I hurt" or "I can't breathe well". Anyway....still no word on when Ciara can come home. Alicia was with her all day so John is taking the night shift. She pretty much slept all day and is just now starting to get fussy again. Hopefully she will calm down soon. I will update again when an actual doctor comes in to let us know how she is. Thanks for the prayers...they seem to be working =)

Alyssa



Thursday March 19th 11:00 PM Update: Doctors came in and said Ciara actually has pneumonia in both lungs along with something called Atelectasis in her left lung, which from what I have been reading is basically a collapsed lung...Alicia is thinking maybe that is why she has been crying so much, because it can be very painful. It makes it all the more heartbreaking, she has been in so much pain but can't vocalize why and sometimes...like in this case it is serious. Even though they believe it to be viral, they have started her on 3 different antibiotics. The calmness I reported earlier was short lived and she is once again thrashing in her bed and is not happy at all. They gave her ativan so hopefully that will allow her to sleep well tonight and get her body rested to fight this nasty pneumonia. Hopefully this is the last update for the night as we pray she will sleep peacefully. I will update again as things good or bad develop. Thanks guys
Alyssa



Thursday March 19th 6:00 PM Update: Ciara is being admitted to the hospital. She has viral pneumonia in her right lung. Normally she has bacterial pneumonia which antibiotics help her kick, but with viral her little body has to fight it out on her own. Doctor said she could easily get worse before getting better. Please pray for her to be strong and get over this soon. She is on 4 liters of 0xygen as her pulse ox kept going into the 70's. Her heart rate and blood pressure have come down and she is resting more comfortably right now. John is staying with her tonight. Hopefully she will only be in there for a few days. This month has been very hard in the MPS world....please keep your prayers going strong, for Ciara, John and especially Alicia as she is so very tired and running on basically weeks with hardly any sleep. Thank you
Alyssa



THURSDAY MARCH 19 3:30 PM UPDATE: Ciara was taken to the hospital today and is currently in the ER. She has been crying for days an nothing seems to help. Alicia was up with here all night again. She has a fever of 103, her pulse ox is 88 and her blood pressure is on the high side. They are giving her fluids, took blood for labs and they took x-rays. Hopefully it is nothing but another stupid virus. Poor girl keeps getting sick. Please pray for her... We will keep you updated
Alyssa


MONDAY MARCH 16 7:15 PM UPDATE: Ciara has had a high fever today but we are thinking she might just have the virus that John is getting over. We are watching her and will see what she does. Keep her in your prayers, thank you!

After two weeks Ciara is finally doing better but now she has a different issue. Her spine seems to be curving much more so then normal. She is in a half moon shape and her arms are tight to her chest so I can hardly move them to get her hooked up to the feeding pump. We had an appointment for today with the spine doctor but they had to reschedule it and can't get her in until April so I don't know what we are going to do with her. As for Hunter, I have been trying to help him with his migraines so I have changed his diet and added vitamins that are supposed to help prevent migraines and he has been better. He still cries couple times a day but nothing like he was so hopefully he will continue to improve and keep laughing. I have been sick, again, for the past few days and now John came home sick yesterday. I tell you, 2009 has been a very bad year so far, I pray that it gets better! Hunter's birthday is coming up, March 25, and he will be 11 years old. We are having a small party for him and then going to Monterey with some friends and family so we will celebrate there too. Now, in the world of MPS, there will be an MPS Run to help raise money for research coming up on May 30 at Travis Air Force Base in Sacramento. Keep that date marked on your calendar and I will post more info in my next update. The next MPS Conference is coming in December and this year it is going to be at Disney World, woohoo! We haven't been able to go to the past three conferences because of the money issues but we really would love to go to this one, everybody goes to the Disney conferences and it is a lot of fun. I am not sure if it is going to happen though because John isn't able to work much because of school and we are now paying for the kids spots in the cemetery next to Tommy so that isn't cheap but it must be taken care of. Well, I guess that's it for now, thank you all for checking in on us!




We have a donation page set up, just click here to check it out: BENNETT KID'S PAGE


Hugs To All,
and ^^Angel^^

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Sunday, March 1, 2009 2:17 PM CST

MONDAY 5:30 PM UPPDATE: Last night Ciara wasn't doing well at all. She had a high fever and was having a lot of difficulty breathing and we had to put her on oxygen. She finally was able to sleep for a three hours last night and this morning she didn't have a fever. Hunter had an appointment with the Neurologist this morning and he said that the issues that Hunter was having at Christmas time was and is migraines so we will keep him on the Topomax until I can figure out what is causing them. Just as we were leaving I received an email from Ciara's doctor and she said that she wanted to get a chest xray and start her on some antibiotics in case she has pneumonia so we were off to Kaiser South. The chest xray showed that Ciara had a lot of air in her belly which was pushing her left lung up so it was hard to see if the hazy stuff they saw was pneumonia or the squished lung. After compairing today's xray to last week's xray the doctor seems to think that there might be something in her lung so she gave us a prescription for antibiotics, steroids and eye drops because whatever virus started all of this has made her eyes red and crusty too. We also did a nasal swab to see if she has a flu bug for RSV. Stay tuned for further updates and thank you all for the prayers!

Ciara is still sick, poor thing. I talked to her doctor on Friday and she said that there are a couple flu bugs going around but RSV is going around too. I read up on RSV and it looks exactly like what Ciara is going through so as long as her breathing is “ok” then we can keep her at home. Friday night her fever went back up to 102.5 but thankfully no seizures. She was breathing fast again yesterday morning but she slept all day and as of this morning is finally fever free. The doctor said that she might be sick until the middle of the week so we are just keeping her hydrated and giving her Tylenol and cold meds when needed and keeping a really good eye on her. Tomorrow Hunter has an appointment with the Neurologist. When Hunter was discharged from the hospital in December they wanted him to see the Neurologist in a few days but we weren't able to get in until now so I have had to play around with Hunter's meds myself so we will see what he says. February was a horrible month for the kids and I, we were sick the whole month so I am very happy March is here and we are ready to be healthy and happy again!





Hugs To All,
and ^^Angel^^

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Monday, February 23, 2009 11:10 PM CST

THURSDAY 10:30 AM UPDATE: Tuesday afternoon Ciara had three seizures in a 2 hour period so after the third one I gave her some Diastat so she wouldn't have anymore and she didn't. Since then she has done a lot of sleeping and she seems to be doing better. Thank you all for the prayers!

TUESDAY 1:45 PM UPDATE: Ciara was breathing really fast this morning so I gave her some cold medicine and she is breathing much better. She did have two seizures this afternoon in a 30 minute period so I am watching her very closely.

TUESDAY 7:30 AM UPDATE: Good news, Ciara does not have pneumonia, woohoo! The doctor thinks it is just a viral bug so we will watch her and see how she does. Thank you all for the prayers!



This is a quick update because Ciara needs your prayers. She in on her way to the Emergency Room in Sacramento. This afternoon she started breathing funny and when I saw that she was retracting I knew something wasn't right. I called John and when he came home he listened to her but only heard Rhonchi so we sat her in her wheelchair hoping that sitting up would help her cough up what was in her throat. After a while I asked John to put her back on the couch and as soon as he did I could hear her loud breathing start up again so I gave her a breathing treatment. He listened to her again and this time he said that her lung was flat and of course now she has a temperature. So, since I have been up since 2:30 this morning and can't drive an hour to the hospital, John is taking her and I am staying home with Hunter. I will post an update as soon as I hear anything but please keep Ciara in your prayers!

Hugs To All,
and ^^Angel^^

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Saturday, February 14, 2009 3:43 AM CST

I am so sorry I haven't updated for awhile but I have been so sick I have just slept the past few weeks away. Hunter and I were both sick for a couple of weeks and just as I was getting over that I got a toothache that was worse then child birth. After three days of the worst pain ever, I finally got into the dentist and they pulled my molar but it still hurts really bad. Of course I was allergic to the Vicodin they gave me for the pain and spent a day very dizzy and throwing up so I am happy to say that at least that is over. As for the kids, they have been doing pretty good. Hunter is much better after his cold and Ciara never caught it was stuns me. I have been playing around with Hunter's Topamax dosage and I think I finally have him one a dosage that he is happy with. He is eating again and laughing so that is so much better then the little boy who was like a veggie on the couch and not able to eat or drink anything. Ciara did have two seizures this evening which happened while she was trying to have a BM. This is interesting because of this article ABDOMINAL EPILEPSY. It snowed today so just as the school bus dropped Hunter off at school, the school called and said that school was canceled. So we drove to the school to pick him up and he was the only kid that had made it to school, poor guy. We then stopped, bought a sled and John and I did a little sledding and then drove back home before the next storm hit. I would like to thank everybody that has come over from Sarah Smith's website, you are all wonderful!

Hugs To All,
and ^^Angel^^

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Wednesday, January 21, 2009 8:23 PM CST

Again, it's been slow and boring around here and I like it that way. Hunter has been doing very well lately (knock on wood) and is almost back to where he was before he went into the hospital last month. He is holding his head up most of the time and he started laughing and smiling again a few days ago so that is the best thing ever. He did have trouble sleeping for about 3 nights in a row and then Ciara was awake for 48 hours straight so I am still exhausted from 5 nights with NO sleep but thankfully they are both back to their normal sleeping schedules. Ciara is doing well, nothing good or bad to say, just doing the same and I have no complaints. The kids are going to their buddy Ryan's birthday party this weekend so that will be fun. Next month is the World Symposium on Lysosomal Storage Disorders and it is actually here in the US and in San Diego CA. We were planning on going to that but it doesn't look like that is going to happen now darn it. Other then that, I don't think we have anything planned for a while.

In my last journal update I mentioned that Sharon Browne and her kids were in a movie that was showing in Los Angeles. The event went very well and they raised $9000 for Sanfilippo Research, woohoo! Jonathan Formica is the man that made the movie and he is going to be on Good Day LA tomorrow morning (Thursday January 22) so if you are in the Los Angeles area, please watch. If not, you can watch it on their website which is GOOD DAY LA

For more information about the movie you can visit the website which is WWW.COURAGE MOVIE.COM.





Hugs To All,
and ^^Angel^^

We have a donation page set up, just click here to check it out: Bennett Kids Page

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Tuesday, January 6, 2009 9:18 AM CST

THURSDAY 4:30 PM UPDATE: Just a quick update. The school called on Tuesday and said that Hunter had a small seizure, he has not had one before. Since then he has been crying on and off but cries all night so neither of us has had much sleep. I have been sick and praying that the kids don't catch it but I think Ciara is getting my cold now darn it. That's it, say a little prayer that the kids don't get sick, we usually start the new year off with a hospital stay for pneumonia so I would love to break that tradition this year!



Not much has happened around here this past week and in the world of Sanfilippo, that is a good thing! Ciara is still doing well (knock on wood). Hunter went back to school yesterday and had a very good day so I am very happy about that. John goes back to school this week too so things are finally getting back to normal around here. The reason that I am updating today is ask anybody that can, to go to see the Courage Movie on Saturday January 10. It is a movie about the Browne family who has two children with Sanfilippo. This is one of the families that we went to Disneyland with a few months ago. All proceeds will go Sanfilippo research to please pass this info in to anybody you think would like to go. For more information you can visit the website which is WWW.COURAGE MOVIE.COM. One of the Browne's children, Russell, is going in to get a feeding tube put in in a couple of weeks to please keep Russell in your prayers for a quick and easy surgery. Below is a picture of Sharon Browne, Russell, Alex, Ciara, Hunter and myself.



and ^^Angel^^

We have a donation page set up, just click here to check it out: Bennett Kids Page

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Wednesday, December 31, 2008 7:56 AM CST

Happy New Year Everybody!

Well this year was a fairly good year for us because Ciara and Hunter were pretty healthy all year long. Ciara started the year off with a hospital stay for pneumonia in early January and Hunter ended the year with a weeks stay in the hospital the week before Christmas but this is the longest both kids have ever gone without getting pneunomina and going into the hospital so I pray that this new year will be just as good for them. John is now half way through nursing school so another year or so and he will be finished. As for right now, Ciara had two seizures last week but seems to be doing fine now. Hunter is still having a little trouble holding his head up but he isn't crying much anymore and has been off all pain meds for about a week now. We have had to change his diet a little more so he doesn't choke. The only fast food he seems to be able to eat is mexican, his favorite is Jimboy's chicken quesadillas, be LOVES them so I get him one whenever I go into town. We are still trying to get a new van so that we can put a lift on it so I don't keep hurting my back putting the kids in the car but it will probably be a while before we can get one darn it. We looked at the vans this week and they are $35,000 just for a plain old van. Then it will be around $15,000 to do the conversion, add the lift and take the seats out and put in the tie downs for the kids' wheelchairs, that is way too much money if you ask me but we need one so I guess we just keep saving away. Well, I guess that's it for now. I hope you all have a wonderful New Year!

This picture was taken right before Ciara had a seizure so John is trying to hold her up, not choking her LOL.






Hugs To All,
and ^^Angel^^

We have a donation page set up, just click here to check it out: Bennett Kids Page

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Wednesday, December 24, 2008 2:41 PM CST

FRIDAY UPDATE: Well Ciara had a moderate seizure yesterday evening but seemed fine afterwards. She woke me up around 5:15 this morning when she was having another seizure but this one was very small. She slept until 1:30 this afternoon but seems fine now. Hunter hasn't had any pain meds for two days now so that is also good news.

Merry Christmas Everybody!

Not much has changed with Hunter since he came home from the hospital. He still can't hold his head up, he is still doing the head nodding/facial twitching, and his hands are still moving. As long as we give him the Tylenol with Codeine he seems OK but once in a while he will scream so I am trying to slowly get him off of that med. We had to increase Ciara's Baclofen because she was moving and jerking around really bad while Hunter was in the hospital so the increase seems to be working, thank God. Since I lost a week while Hunter was in the hospital I didn't get all of my Christmas cards done so if you didn't get one, I apologize. I also didn't get my gifts mailed until a couple days ago so hopefully they will get there today. But, things happen and I know everybody understands. I just got home from the cemetery, I took Tommy a little Christmas stocking with a toy and candy in it, a Santa to keep him company and a poinsettia. I guess that's it for now, not much going on here but the kids keep me very busy. Have a wonderful Christmas everybody!






Hugs To All,
and ^^Angel^^


We have a donation page set up, just click here to check it out: BENNETT KIDS PAGE

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Friday, December 12, 2008 3:38 PM CST

FRIDAY 7:00 AM UPDATE: Hunter finally got his EEG yesterday and it showed no seizure activity so the doctors have no idea what is causing his problems. Of course just as the doctor came in to tell me Hunter was not having seizures, Ciara decided that she wanted some attention too so she had a big seizure. So, they sent us home with Tylenol with Codeine for any pain and Topomax to see if that helps with his movements and jerking. He actually help his head up the whole hour ride home which he couldn't do last week so that was great to see. Both kids had a good night and I guess we just wait and see how Hunter does.

This is Hunter during his EEG



WEDNESDAY 8:42 PM UPDATE: Alyssa again...I wish I had better news, but I don't. Hunter is still in the hospital with no idea what is wrong. He was supposed to have the EEG today, but his "slot" was taken by another patient. They are saying now they might not be able to do it until Friday because the techs keep calling in sick! Can you believe that!?!?!? MPS does not take a holiday, nor should a hospital, especially when someone is in pain and this test will help tell us why. Tonight Hunter's pulse ox has been very low. Dropping into the 70's. Needless to say he is back on oxygen. Please pray for his comfort and answers and for his breathing to improve. I will update again as soon as I know more. Alicia is staying with him tonight. Thanks for your prayers and for checking in.

WEDNESDAY 7:00 AM UPDATE: It turns out that Hunter does not have Hydrocephalis or Foramen Mangus Stenosis so that is good news. They have an EEG scheduled for 3:00 this afternoon to see if he is having seizure activity. If the EEG doesn't show anything then the doctors are stumped and have no idea what is causing his problems. Yesterday he didn't cry as much so that was good. They started him on Topomax to try and control his constant movements so we will see if that works. Ciara is having trouble too, she is constantly moving and thrashing around again so the Neurologist said to increase her Baclofen so I did that last night and we will see if that works for her. She was really bad yesterday so I put her in Hunter's hospital bed and put Hunter in the wheelchair and they were both happy. I also got Hunter to eat for the first time in a couple days, he had a chicken quesadilla for lunch and PB&J and peaches for dinner so I know he was feeling better. He was on oxygen all day but by late last night be was off. I haven't talked to John yet this morning so I hope he is still off. I will try and update when I know more this evening, but I am hoping to be home with him. Thanks for checking in on us!

Hunter After MRI






MONDAY 10:30 PM UPDATE: Well, Hunter's MRI shows some extra fluid on his brain but the doctor doesn't really know much about it. He is waiting to talk to the Neurologist tomorrow, they will also check his fluid pressure tomorrow and then go from there. We still don't really know anything darn it but hopefully tomorrow we will have some answers. Thank you all for checking up on Hunter and keep the prayers going!

MONDAY 5:50 PM UPDATE: This is Alyssa updating for Alicia. Hunter is getting his MRI as we speak. Today was another rough day for Hunter. He was screaming most of the day and his pulse ox has been all over the place, dropping a lot into the lower 80's. Despite it being so low his color remains good. They took another chest x-ray and also one of his belly. They did more blood work also about an hour ago so. They had a very hard time getting his IV in for the MRI sedation. They had to call in several people to get it done. I will update when we know more. Please pray his MRI is clean and for comfort for the little guy. Thank you

SUNDAY 10:16 PM UPDATE: Well, Hunter had some lab work done, and xray and Cat Scan and they still can't figure out what is going on with him. They want to do some sort of special MRI tomorrow to see if he has a narrowing of the Foramen Magnum which might be compressing his spinal cord. Keep checking in and I will update when we know more.

SUNDAY 12:55 PM UPDATE: I am taking Hunter to the Emergency Room At Kaiser. He is still having trouble holding his head up, he is still screaming and something is really hurting him. John checked him over last night and said that he didn't think it was Meningitis and his ears didn't look red so maybe it might be Hydrocephalis or possible a tooth? He screams and puts his right hand behind his ear on the back of his head so something hurts him. I don't know if I will be able to update here right away but I will post updates on my Facebook page, I can do that from my phone. Say a prayer that is nothing big!



Well this past week was horrible. We all got our flu shots a week and a half ago and since then Hunter starting having some problems. He wasn't able to hold his head up when sitting so we had to put pillows and blankets behind his head to keep his head up and so he wouldn't choke. He also started a weird twitching thing with his face and his hands started a kind of jerking thing. I was wondering if it was related to the flu shot or just Sanfilippo creeping up on us. A couple of days ago Hunter came home on the school bus screaming and he didn't stop. That night I took the kids to the fire department Christmas party and Hunter was still screaming on and off and Ciara was very upset because she hadn't pooped in days and her tummy was bothering her. The next day the kids had their physical therapy appointments so the therapist worked on their necks the most. Hunter had pooped a little in the morning so he wasn't as fussy today but he was still doing the face twitching which the therapist thought meant that he was in some sort of pain. I assumed his tummy was bothering him but who knows. On the way home Hunter was holding his head up a little better and was able to eat a few french fries, he hasn't been able to eat in the car for a little while because of his head getting stuck back and he would choke. Hunter had another poop that night and has been a happy camper ever since. Ciara has a few sores/abrasions on her leg and feet because she was kicking and crying in her wheelchair because her tummy hurt so we are keeping an eye on those wounds but as of right now, I think they will be OK.

As for me, my car was broken into and my purse was stolen last week. They got my new camera, my new GPS, a lot of cash I had in my purse and some gift cards I had plus a few other items. So, I have no money, no credit cards, no check book and it stinks. Since that night, I haven't been able to sleep and I keep letting the dogs out all night long in case somebody is out there again, I hate thieves! I am not sure what we are going to do but thankfully they didn't take or damage the kids' wheelchairs which were in my car.




We have a donation page set up, just click here to check it out: BENNETT KIDS DONATION PAGE


Hugs To All,
and ^^Angel^^

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Friday, December 12, 2008 3:38 PM CST

Well this past week was horrible. We all got our flu shots a week and a half ago and since then Hunter starting having some problems. He wasn't able to hold his head up when sitting so we had to put pillows and blankets behind his head to keep his head up and so he wouldn't choke. He also started a weird twitching thing with his face and his hands started a kind of jerking thing. I was wondering if it was related to the flu shot or just Sanfilippo creeping up on us. A couple of days ago Hunter came home on the school bus screaming and he didn't stop. That night I took the kids to the fire department Christmas party and Hunter was still screaming on and off and Ciara was very upset because she hadn't pooped in days and her tummy was bothering her. The next day the kids had their physical therapy appointments so the therapist worked on their necks the most. Hunter had pooped a little in the morning so he wasn't as fussy today but he was still doing the face twitching which the therapist thought meant that he was in some sort of pain. I assumed his tummy was bothering him but who knows. On the way home Hunter was holding his head up a little better and was able to eat a few french fries, he hasn't been able to eat in the car for a little while because of his head getting stuck back and he would choke. Hunter had another poop that night and has been a happy camper ever since. Ciara has a few sores/abrasions on her leg and feet because she was kicking and crying in her wheelchair because her tummy hurt so we are keeping an eye on those wounds but as of right now, I think they will be OK.

As for me, my car was broken into and my purse was stolen last week. They got my new camera, my new GPS, a lot of cash I had in my purse and some gift cards I had plus a few other items. So, I have no money, no credit cards, no check book and it stinks. I am not sure what we are going to do but thankfully they didn't take or damage the kids' wheelchairs which were in my car.

Hugs To All,
and ^^Angel^^

We have a donation page set up, just click here to check it out: BENNETT KIDS DONATION PAGE

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Wednesday, December 3, 2008 10:50 AM CST

I hope everybody had a wonderful Thanksgiving. Things here have been going well. Ciara had a seizure a week ago which means that she went three weeks between seizures so that was pretty good. The bad part was that for about 3 days after the seizure she slept pretty much all day and all night, this one really wiped her out. But she is back to her old self again and happy so that is wonderful. Hunter has been doing very well also but he is having a hard time holding his head up, like his neck isn't strong enough anymore, and he really hates it and cries. So I have been having to roll a towel or blanket to put behind his neck when he is in the car but he does pretty well in his big wheelchair which is the one he takes to school. He really can't hold his own sippy cup anymore either, he tries and can for about a minute, but that's it. Over the weekend John and his brother built a deck and a wheelchair ramp on the front porch so now I can bring Hunter's huge wheelchair into the house. He wasn't very happy when I would put him in a freezing cold wheelchair in the morning so I am sure he really appreciates the ramp. I guess that's it for now. Thank you all for checking in on us and have a wonderful week!

I know every year people ask us what the kids would like for Christmas but this year I am asking you not to send us anything. But instead there is another MPS family who is in great need of help. I am not going to post their information on here but if you would like to help this family just send me an email with MPS FAMILY IN NEED in the subject line and I will send you their address and what they need.

I also need cookie recipes. One of our fire fighters, who is in the Army, is being sent to Afganistan in two weeks. His wife asked us to make cookies to send over to him and I really need some new cookie recipes so please post them in our guestbook, I need all the help I can get!

Hugs To All,
and ^^Angel^^

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Monday, November 24, 2008 8:02 PM CST

Well, another year has come and gone and my heart is still breaking and hurting because I don't have my Tommy here with me. I feel him with us, I know it is him making Hunter laugh. I know it is him waking me up when Ciara is having a seizure and I know he is the one that keeps clearing up her lungs. Whenever the front door opens for no reason, we always say “Tommy, close the door behind you!” He is here helping us get thru every day without him. Whenever one of our MPS friends is very sick and in the hospital I always ask Tommy to fly to them and watch over them and to help them get strong enough to come back home again. Tommy always wanted to help people and he still flies to help people from here in the states to over seas and that I can't thank him enough for. So Tommy, I love you so much and thank you for everything you do each day for us all!

As Tommy took his last breath, the Charlie Brown Thanksgiving was playing on the TV. I know that it is going to be on TV Tuesday so please watch it and remember Tommy, he took his last breath during Woodstocks little song.



MEMORIES OF YOU, MY CHILD

Today, I awoke with memories of you, our days were too short, our memories far too few. Every season which passes, each anniversary of that day, I look up to our Father, and I begin to pray.

O, Father in Heaven, hold my baby close; and give him the love, which he needs the most. Allow him to look down and see us here below; may all the love we bear, be his to know.

I realize that with you, Father, my child is even more blessed; but it's difficult, you see, as we do our very best. To live each day, without him in our view, but I know my child is happier, up in Heaven with you.

Take my child by the hand, Dear Lord, and give to him a flower. And tell him that we still cherish and love, and so happy that he was ours.

We borrowed our dear one from you, for just awhile, savoring each moment we had; he's all safe now, away from every harm, and we are ever so glad. Touch our hearts, Father, and mend the broken pieces.

And may the love we hold for our child, extend to others, as it reaches out to the hurting, those who are grieving and in the same pain, and may we feel Your mighty embrace, as we remember once again.

May we linger safely until we, too, cross upon the Golden Strand, and there to greet us on one side will be our Sweet Jesus and on the other, our little angel with an outstretched hand.

Tommy Bennett





Hugs To All,
and ^^Angel^^

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Monday, November 24, 2008 8:02 PM CST

Well, another year has come and gone and my heart is still breaking and hurting because I don't have my Tommy here with me. I feel him with us, I know it is him making Hunter laugh. I know it is him waking me up when Ciara is having a seizure and I know he is the one that keeps clearing up her lungs. Whenever the front door opens for no reason, we always say “Tommy, close the door behind you!” He is here helping us get thru every day without him. Whenever one of our MPS friends is very sick and in the hospital I always ask Tommy to fly to them and watch over them and to help them get strong enough to come back home again. Tommy always wanted to help people and he still flies to help people from here in the states to over seas and that I can't thank him enough for. So Tommy, I love you so much and thank you for everything you do each day for us all!



MEMORIES OF YOU, MY CHILD

Today, I awoke with memories of you, our days were too short, our memories far too few. Every season which passes, each anniversary of that day, I look up to our Father, and I begin to pray.

O, Father in Heaven, hold my baby close; and give him the love, which he needs the most. Allow him to look down and see us here below; may all the love we bear, be his to know.

I realize that with you, Father, my child is even more blessed; but it's difficult, you see, as we do our very best. To live each day, without him in our view, but I know my child is happier, up in Heaven with you.

Take my child by the hand, Dear Lord, and give to him a flower. And tell him that we still cherish and love, and so happy that he was ours.

We borrowed our dear one from you, for just awhile, savoring each moment we had; he's all safe now, away from every harm, and we are ever so glad. Touch our hearts, Father, and mend the broken pieces.

And may the love we hold for our child, extend to others, as it reaches out to the hurting, those who are grieving and in the same pain, and may we feel Your mighty embrace, as we remember once again.

May we linger safely until we, too, cross upon the Golden Strand, and there to greet us on one side will be our Sweet Jesus and on the other, our little angel with an outstretched hand.





Hugs To All,
and ^^Angel^^

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Sunday, November 16, 2008 12:05 AM CST

Well since the last update Ciara's lungs got much better but for the past week both Ciara, Hunter, and myself have had a lot of stuff draining down our throats, kind of feels like allergies, so both kids have been having some issues. I had John listen to Ciara's lungs last night and they sound like they have a little fluid in them again so I have to keep her up and moving and do some chest PT on both kiddos to make sure it doesn't turn into pneumonia. Other then that, they are both doing great. Ciara's seizures went from 1-3 a week to this last one which was 29 days between seizures so that is fantastic! As for me, my back has been out for a couple of weeks now so I haven't been out doing anything, just staying home and praying that it gets better. The past couple of days hasn't been as bad so I hope things continue to improve. I guess that's it for now, have a wonderful week!

Hugs To All,
and ^^Angel^^

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Thursday, October 23, 2008 10:48 PM CDT

SUNDAY 11:00 AM UPDATE: Well John took Ciara to the Kaiser emergency room after he talked to the nurse on the phone. Her lungs are wet but it hasn't turned into pneumonia yet so they gave her a breathing treatment and sent her home on steroids. They got back home around 3:30 this morning and John just listened to her lungs and they sound better then last night so things are moving in the right direction. Please say a prayer that she continues to improve!

SATURDAY 10:20 PM UPDATE: Ciara's lungs are both full of fluid. We have been trying to get her to cough it up but she just won't cough no matter what we do. John is on the phone with Kaiser right now and he will most likely be taking her to the hospital. Please pray that she gets to come home tonight and that this isn't something major like the last time. I will update again as soon as I know more.

Well, it was an interesting trip to Los Angeles, that's for sure! Thursday morning I loaded the kids into the car around 4:30 and we hit the road. We drove to Sacramento to pick up Shaun and Zach at the train station and then we were off to LA. We arrived in Los Angeles at the hotel around 1:00 and checked in. Apparently the room I reserved wasn't available to they upgraded me to the suite and it was fabulous and very big, it was awesome! We put our bags in the rooms and then walked across the street to get some lunch. Just as we were leaving the restaurant my friends were walking past on their way to the hotel so I took Ciara and Hunter up to the room to lay down and relax after a long drive and everybody else went down to the pool. While my kiddos were resting, I stood on my patio and watched our friends at the pool until it was time for all of us to walk across the street to Disneyland. We walked over to Downtown Disney and had dinner and then we dressed the kids in their halloween costumes for MICKEY'S TRICK OR TREAT PARTY. We had a great time riding the rides and getting a TON of candy, fresh fruit and freeze dried fruit. By the time we got back to the hotel it was around 11:30 or so and my feet were blistered and killing me, but oh so worth it.

Friday morning we had reservations for the STORYTELLER'S CHARACTER BREAKFAST and Hunter and I ate a lot. After breakfast we were off to ride the rides at Disneyland. First we went on Indiana Jones and just as we were exiting the ride my other friends called and said that they were in the park at The Tiki Room. So, our friends from the fire dept had to leave to drive back home which means that I lost my wheelchair helpers, bummer! Shaun and I pushed Ciara, Hunter, and Zach over to the Tiki Room and met up with Sharon with Russell and Alex and Patty with Jesse, they all have Sanfilippo Syndrome like Ciara and Hunter. It was very hot while we were there and there were a lot of people at Disneyland which made it even harder to push two wheelchairs but I had a great time being with my MPS friends. After we left the park for the night we got in the car and drove to San Dimas and checked into the new hotel for the next two nights. Saturday morning I was up at 5:00 and started getting everything together because we had to be at the MPS RUN by 8:00 am. When I woke up my back hurt so bad that I couldn't even put the kids in their wheelchairs so Shaun helped me get the kids in and out of the car, thank you Shaun!!! So, I decided that there was no way that I could do the MPS walk with my back hurting so back so I stayed behind and took pictures of everybody else. Once the run was over it was time for the family picnic. We had great food, wonderful friends and at the end we all did a butterfly release which is always emotional for everybody. I let one butterfly go for Hunter and his butterfly landed on his shoulder and then walked down to his hand and sat there for a while. Ciara's butterfly landed on her shoulder but only stayed for a short time before it flew away. I also had a butterfly for Tommy so when I opened his envelope I told the butterfly that he needed to fly up to Heaven and find Tommy. When I let him go, he came out and landed in my hand for a couple minutes and then he flew away. Once we were all done at the picnic we all went across the street to Tami's house for another MPS BBQ which was a lot of fun, as usual. I think we finally got back to the hotel around 8:30 or so and as soon as I put Ciara and Hunter on their bed, they were asleep. The hotel has a free cooked to order breakfast in the morning so when I woke up I grabbed some strawberry waffles, french toast and english muffins and took them back to the room for Hunter and I to eat, it was very good. Around 10:30 Shaun and I packed up the car and started the long trip back to Sacramento. John was at Kaiser doing his clinicals and asked us to stop by so he could say hello to Shaun and Zach. After we saw John we headed to the train station to drop them off and then another hour to our house. BUT when I got home I realized that I didn't have a key to the new lock we put on the front door so I couldn't get in. So I took the kids to our friends' house, the ones we did Mickey's Trick Or Treat with, because we were having a football party over there and we stayed with everybody until John came home from the hospital to let us in the house. Monday school started again but I just couldn't stand the thought of putting Hunter in his wheelchair again all day so I let him stay home and relax for one day but he did go to school on Tuesday.

Here is the link to the pictures, just click on which photo album you want to see: CLICK HERE FOR PICTURES






Hugs To All,
and ^^Angel^^

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Thursday, October 16, 2008 3:14 AM CDT

Well wish me luck! In three hours I am putting the kids in the car and driving to Disneyland and John is staying home because he has school this weekend. I am picking up my friend Shaun and her son who has MPS at the train station and we are heading to Disneyland. We are meeting some friends from the fire dept and a couple other Sanfilippo moms and their kids. Thursday night we are going to go Mickey's Trick Or Treat Party, Friday we are having breakfast with the characters and then off to Disneyland for the rest of the day. Saturday we are up early and going to the MPS Run and I can't wait to see all of our MPS friends again. If anybody needs to get a hold of me you can send me a text message on my cellphone or email me on my cellphone at mps3mom@gmail.com.

Hugs To All,
and ^^Angel^^

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Sunday, October 5, 2008 0:33 AM CDT

WEDNESDAY: Ciara has been taking the Baclofen for two days now and she is doing great! No more constant moving and flailing and she is very happy. Praise God!!!

Well things have been going fairly well around here since I updated last. Hunter is still doing well and continues to laugh all the time. Ciara is doing alright but she is having seizures more often lately. For years she would have one seizure every 6 weeks but over the past several months they have increased to 1-3 seizures a day every two weeks and now she is having 1-3 seizures a day every week. I am assuming that it is because of her hormones changing but I am not sure. I took her to the Neurologist yesterday and he said that puberty might be the problem but it might be her medication. I told him that around 7 months ago her Trileptol started coming coated which means that when I have to crush it and put it in her feeding tube, some of the medication is stuck to the coating and some of it falls out when I try and get the coating pieces out of the crusher because they will not go down her tube. So I wasn't sure if she was getting enough medication. He looked up her meds and said that the pharmacy had switched her to generic in February so that explains why it is coated all of a sudden. He gave me a prescription for liquid Trileptol so we will see if that makes a difference, at least she will be getting the full dosage. I also asked him about starting her on Baclofen which several other Sanfilippo kids are on and it has stopped their constant movements and he agreed to give it a try. You should see her poor feet, legs, and nose, nothing but sores and scabs from the constant rubbing on her wheelchair, couch, etc. Last month when I called to order the kids' feeding supplies Kaiser told me that they stopped carrying the two forumlas they were on and they sent me two different ones. Ciara has been pooping a lot and crying and kicking because her tummy hurts. Yesterday I just noticed that her forumla has Benefiber added to it, that made me so mad. I have told them several times that she can't have any formula with fiber because it bothers her tummy, yet they keep sending us different brands with fiber. So I started giving her Hunter's formula until I can get this straightened out. But when we were at the doctor's office yesterday we weighted Ciara and she has gained 7 lbs and is finally back up to 60 lbs! I have been trying so hard to get her to gain some weight so I was thrilled. Of course Hunter has gained weight too and boy is my back paying the price! Earlier this week both kids had their physical therapy appointments and Hunter is doing very well, the therapist was very happy with how loose and flexable he has become. Ciara's legs are a little better but her arms are worse so we have to work on trying to get her arms straighter but I don't really see that happening. Below is a picture I took the other morning while we were waiting for the school bus to come. Hunter was sitting on the couch and just layed down and snuggled with Ciara, it was so cute!





Hugs To All,
and ^^Angel^^

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Tuesday, September 23, 2008 2:44 PM CDT

Hello Everybody,

This week has been a fairly good week. Hunter has been a happy little guy giving lots of smiles and giggles. Ciara is doing well, just a little fussy but we are working on that. Yesterday was John's 40th birthday so a bunch of us took him out to dinner, it was fun. This morning the kids had physical therapy appointments and the therapist was very happy with how much Hunter has improved. Ciara's legs are a little better but her arms are very tight still so we need to work on that. I had talked to the therapist about things that might help Hunter at his new school like special crayons and adapted items that he might be able to work with so she is going to put in a referral for Occupational Therapy to see what they can tell us might work for him. Next month we are going to the MPS RUN in Los Angeles but John has school that weekend so the kids and I are going without him. While we are there we are going to Disneyland, not sure how I am going to do that so it will be very interesting!




Hugs To All,
and ^^Angel^^

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Tuesday, September 23, 2008 2:44 PM CDT

Hello Everybody,

This week has been a fairly good week. Hunter has been a happy little guy giving lots of smiles and giggles. Ciara is doing well, just a little fussy but we are working on that. Yesterday was John's 40th birthday so a bunch of us took him out to dinner, it was fun. This morning the kids had physical therapy appointments and the therapist was very happy with how much Hunter has improved. Ciara's legs are a little better but her arms are very tight still so we need to work on that. I had talked to the therapist about things that might help Hunter at his new school like special crayons and adapted items that he might be able to work with so she is going to put in a referral for Occupational Therapy to see what they can tell us might work for him. Next month we are going to the MPS RUN in Los Angeles but John has school that weekend so the kids and I are going without him. While we are there we are going to Disneyland, not sure how I am going to do that so it will be very interesting!

Hugs To All,
and ^^Angel^^

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Thursday, September 18, 2008 7:55 AM CDT

Today my little Tommy would be nine years old, wow! I can't help but wonderful what he would look like today, how he would be doing. Would the transplant have worked and he would be doing things the other kids are doing? Or would Sanfilippo have control over him and he would be like Ciara and Hunter? At least I know that he is in Heaven and as happy and healthy as he can be. We love you and miss you so much Tom Tom and we will be sending you some balloons today so keep looking for them!



A BIRTHDAY IN HEAVEN

I heard you crying yesterday
And felt your heart-sent love
So I’m sending you this message
Now, from Heaven up above.

You’re wondering if I’ll celebrate
My birthday (way up here)
I know you’re missing me today
I feel your essence near.

God planned a special day for me
He told me with a wink
He’d ordered me a special cake
(It’s Angel food, I think)

I’m getting lots of hugs from God
He’s really good at that
And every time that I walk by
He gives my head a pat

Balloons will fill the streets for me
They float up through the clouds
And we have lots of clowns up here
That make us laugh out loud

There is a birthday carousel
Jeweled horses ride the wind
With music playing oh so sweet…
The magic never ends

I’ve made so many friends, you see
We laugh and play and sing
We ride our bikes and play jump rope
And sleep in Angel’s wings

We’ll have our cake and ice cream
And open gifts, surprise!
But we don’t blow out our candles here
Instead they light the skies.






Hugs To All,
and ^^Angel^^

---

Sunday, September 7, 2008 11:05 AM CDT

THURSDAY 9:00 PM UPDATE: Thank you all for the prayers, Ciara's lungs are now clear and dry, woohoo!!!

TUESDAY 6:30 PM UPDATE: Ciara had a seizure at 5:00 this morning and another one at 9:30 this morning, both lasting 4 minutes each. After the second seizure I gave her a dose of Diastat which was the first time I have ever had to give it to her, it is supposed to stop anymore seizure activity and so far she hasn't had anymore. BUT, I had John listen to her lungs and he said that she has fluid in her lungs. I did get her to cough a big goobie but there is still more in her lungs. Please pray that we can get her thru this without having to go into the hospital!

Hello Everybody!

Not much happening around here which is always a good thing. School is going great for Hunter and he is really enjoying himself. We had school pictures last week and they even let Ciara get her picture taken so I can't wait to see them. John is still going to school and working so we don't see him too much. I guess that's all for this update, I honestly can't think of anything else that we have done.





Hugs To All,
and ^^Angel^^

---

Wednesday, August 20, 2008 8:22 PM CDT

Sorry I haven’t updated since before we went camping. We had a great time at Lake Tahoe with our friends. Of course before I headed off to Tahoe my car wouldn’t start, the battery was dead. John jumped it for me and then the kids and I were off to Lake Tahoe. John had school that day so he was going to meet us up there late that night. Ciara had a seizure right before we left the house so I was praying that she wouldn’t have any more and thankfully she didn’t. When we got to the campground our friends were out to lunch so I got Ciara and Hunter out of the car and started getting everything out of my car and setting up camp. When our friends got back they helped me set up the tent, which was pretty darn funny to watch I must say, none of us had any idea what we were doing. Once the tent was up I pumped up the air mattresses and put the kids in there to lay down and relax for a while after the long drive. Not long after that our other friends arrived so we got them set up and then it was time for dinner. After dinner it started to get dark which meant that John would be there soon so all of the other kids in our group changed into their camouflage clothes, grabbed their Nerf guns and waited for John to arrive, it was funny. Once John arrived we sat around the fire and had fun until it was time for bed. In the morning my car wouldn’t start again so after we had breakfast, goofed around, and then had lunch, John and I went in search of a new car battery while everybody else went to the beach. Once everybody was back at camp I made dinner and we sat around the fire until midnight. Friday morning we had reservations to go rafting down the Truckee River which was a lot of fun. I just wish I was able to go with everybody but I think we will go next time. The river is so calm that they let babies and dogs go on the rafts so we should be able to take Ciara and Hunter next time, can’t wait! Well that’s about it for the camping trip.

Tired after a long two hour drive to Lake Tahoe:



Ciara and Hunter still sleeping in the morning:



Most of our group rafting:



Hunter went back to school last week and to my surprise, he is going to a new school. I didn’t know that until two days before school started but thank God he is with Jami and Hilary. They both have known him for years and they are the only reason that I am letting Hunter stay in school this year, I trust them completely. I took Ciara to his new school on the first day to check it out and make sure they knew what to do for Hunter and I was very happy with his new class and his teacher and aides. Usually when Hunter would come home from school I could hear him screaming when the bus would pull up but this year he is so much happier and he can’t fussed yet so he is having a great start to the school year. As for Miss Ciara, she has been doing wonderful until today. She has had three seizures so far today and they seem to be coming every two weeks and usually three a day. I am assuming that her changing hormones are causing the increase in the seizures. We have an appointment schedules with her neurologist coming up so we will see what he has to say. John started school this week so things have gone back to our “normal” crazy around here. I will update again soon and please pray for no more seizures!

Here are a couple pictures from last month:






Hugs To All,
and ^^Angel^^

---

Friday, August 1, 2008 8:04 PM CDT

WEDNESDAY 7:00 AM UPDATE: Ciara had a seizure at 3:15 this morning and I pray that she doesn't have any more today. I am taking the kids camping in Lake Tahoe today so if anybody needs me you can get me on my cell phone or email my cell phone at mps3mom@att.blackberry.net.

Ciara had a very rough day yesterday, poor thing. She had two seizures about 6 hours apart but a few hours after the second one she started having some breathing issues and we had to put her on oxygen for a while. Around 11:00 last night I gave her a breathing treatment and she fell asleep and has been off oxygen since. Today we went to little David's funeral and I have been crying all week, it just brought back all of the memories of when Tommy died and it was tough. On a different note, a week ago I started giving Acidolophus to Ciara, Hunter, and myself and since then, Hunter hadn't been screeching and kicking and my stomache has been much better too so thank God we are feeling better! I guess that's it for now but I will update after we get back from camping.

Hugs To All,
and ^^Angel^^

---

Friday, July 25, 2008 10:04 PM CDT

Well I don't have much to report again, but for us that is a good thing. Ciara and Hunter are doing well, Ciara was laughing last night and Hunter has been giving smiles lately which he never does so I am happy and take the smiles and giggles from them whenever they will give them to me. We are going camping soon with a bunch of friends so I am very excited and can't wait! I guess I better start looking at beds and cots to see what would be best for Ciara and Hunter to sleep on in the tent. Alyssa has been traveling this past week and I have been on the phone ALOT with her so I feel like I have been on a virtual vacation already LOL. I have been to Boston, New York, and have driven thru Conncecticut twice and New Jersey and I even rode the subway with her, woohoo! Hey, it's the most exciting thing around here this week! LOL Well, I guess that is it for us but I will try and post again soon.

I do want to ask all of you to say another prayer for our little friend David and his family. His mom called me today to tell me that he passed away yesterday. David didn't have MPS, I think he had a Mitochondrial disease. They live here by us and we met them at the mexican restaurant on Main Street earlier this year. David was such a sweet, adorable little boy and although I didn't get to know his as well as I would have liked, we will miss him terribly. I was looking forward to him joining Hunter at school this year.

Hugs To All,
and ^^Angel^^

---

Tuesday, July 15, 2008 10:20 AM CDT

Hello Everybody,

Everybody here is doing well. Hunter had a rough week with constant screaming and crying but I couldn't figure out what was bothering him. The past couple of days he seems to have calmed down so hopefully he will continue to improve. Ciara is doing great so nothing new to report. We will be going to the MPS Run again in October so I thought I would post the LA MPS Run website for anybody that would be interested in joining us to help find a cure for MPS. You can visit the website by clicking here: LA MPS RUN.

I did want to take a moment to ask you all to say a prayer for a new little Angel who gained her wings a couple of days ago. I don't want to post anything more because I am not sure if I should, but I just couldn't let her passing go without asking you all to say a prayer for her and her family.


Hugs To All,
and ^^Angel^^

---

Tuesday, July 8, 2008 6:11 PM CDT

Hello Everybody!

Not much happening around here but everybody is doing well. There is still a lot of smoke in the air from all of the fires and it has been around 105 degrees for the past few days and getting hotter so I haven't really taken Ciara and Hunter out of the house. I did take them to a friend's house Sunday for movie night which was fun. I just thought that I would post a little update now because I don't know when I will be able to again for the next few weeks. My laptop died so I am without a computer. John has his laptop but he always has it with him for his school so I will try and update when I can but not sure when that will be. If something major happens I will have Alyssa post an update for me though.


We have a donation page set up, just click here to check it out: BENNETT CHILDREN'S DONATIONS

Hugs To All,
and ^^Angel^^

---

Monday, June 23, 2008 3:48 PM CDT

We have had a very good week. Ciara and Hunter have been doing very well and have been happy but Ciara has had some issues. Friday night she started looking like she was going to have a seizure soon and then all day and night Saturday she was constantly moving and slumped to the left and her eyes didn't look normal so we knew there was some sort of seizure activity going on but not a “normal” seizure. Saturday night I gave her a dose of her Haldol to see if it would help and it did calm her down for a while and she was able to rest. Around 7:00 yesterday morning she had a fairly small seizure and then seemed OK until about 1:30 in the afternoon. I was just about to put the kids in the car to do to a bridal shower when Ciara had a very big seizure. For the rest of the day she was like a little rag doll but today she is back to her old self, alert and “talking” all morning.

Hugs To All,
and ^^Angel^^

---

Sunday, June 15, 2008 12:10 AM CDT

Sorry it has been so long since I updated. Ciara and Hunter have been doing very well (knock on wood). Well, school is out so the kids have been home with me and of course it has been over 100 degrees here so I haven't taken them out much, Ciara doesn't do well in the heat. We have gone out and done a few things with the fire dept so the kids had a good time. A couple of days ago I took the kids to a BBQ at the park with a bunch of friends but that is about all we have done. Not much going on here except that John has been working like crazy and going to school so we don't really see much of him at all these days so looking forward to spending today as a family. We were supposed to go camping next week but that doesn't look like it's going to happen. I would love to go to Monterey again soon but not sure if that's possible so it looks like we are stuck here all summer. Hopefully something exciting will come along! I am going to put a couple poems on here but don't think they are depressing, they are just a reminder to forget the everyday crap that we all have to deal with and take some time to spend with your kids!

TO JODIE: You must have some pretty crappy life and you must be a very miserable person for you to even have the nerve to post nasty remarks in our guestbook. What business is it of yours if we go out to dinner once a month or take the kids out and have a little fun? IT'S NONE OF YOUR BUSINESS!!! So keep your mouth shut, nobody here has any more time to waste on you, you are pathetic and sad and I know you will post something again but I will keep deleting them, you will not bring us down in any way, sorry!

THE GIFT
(For Grieving Fathers On Father’s Day)

Here I sit and stare
Out the window of our home,
On this Father’s Day
Feeling so very alone.

Oh, how I wish
My child was still here
Bringing me a Father’s Day gift
Even an ugly tie would be so nice this year.

But…my child has gone to Heaven
And is playing on streets of gold
Listening to Jesus tell stories
Of so many years ago.

And today I find myself thinking
About the meaning of a gift
For a gift is something given to you
That makes you smile and gives you a lift.

But…many times we receive a gift
And then lose it or misplace it someday
But we never forget the gift
For the memories stay tucked away.

And the most precious gift…that I was given
To me…so many years ago
Was the day my child entered this world
And touched my life, heart, and soul.

So on this Father’s Day
I thank the Lord for the most precious gift of mine
My child in Heaven…treasured times and memories
That will remain with me…my entire lifetime.

For a gift is a gift
And my most precious gift…remains in my heart
And just then…a rainbow appears out my window
Reminding me…that my gift and Heaven are not so far.





As Soon As He’s Ready by Rich Clingman (06/15/01)
 
Of course, Dear…,
 
I know I’m his father,
And I’m ready to start.
As soon as he’s ready,
I’ll do my part.
 
 
He really is cute!
But he’s really too small.
Just as soon as he’s ready,
We’ll have a ball!
 
But for now, don’t you see?
The job’s really Mom’s.
But as soon as he’s ready,
Dad’s got open arms.
 
For Mom’s job is full
Of the day-to-day stuff.
But the father’s job
Is much more tough.
 
I’ll teach him to throw,
Help him ride a bike,
And as soon as he’s ready,
We’ll go on a hike.
 
 
First day of school?
I can’t take him today.
But as soon as he’s ready
To run bases, we’ll play.
 
I know he’s got problems,
But don’t dwell on that, Dear.
And as soon as he’s ready,
I’ll be right here.
 
The doctor’s appointments?
You can handle that.
And as soon as he’s ready,
We’ll swing a bat.
 
See, I’m always supportive,
For that’s a Dad’s job,
And as soon as he’s ready,
We’ll fish with a rod.
 
 
Fifth grade science?
Now that job is Dad’s!
So as soon as he’s ready,
We’ll walk through some labs!
 
I’m sorry, Dear,
He’s just much too slow,
But as soon as he’s ready,
We really will go.
 
 
High school football?
Oh…, announcing the game…
Well, as soon as he’s ready,
Something not so lame,
 
See, when he is playing
You know I will care,
So as soon as he’s ready
I’ll be right there.
 
The auditorium?
To watch him debate?
No, as soon as he’s ready
To graduate.
 
 
Take the boy out?
He needs Mommy’s care.
But as soon as he’s ready,
Dad will be there.
 
I know he is older,
Almost sixteen,
And as soon as he’s ready,
For the dating scene…
 
But it’s not my job
To give him a ride,
So as soon as he’s ready,
I’ll teach him to drive.
 
 
He’s going to dance?
A boy in a 'chair?
Sure…, as soon as he’s ready,
You take him there.
 
 
He’s angry at me?
Whose broken whose dreams?
As soon as he’s ready,
He’ll stop his screams.
 
See, I’ve worked very hard
To make his life grand,
And as soon as he’s ready,
He’ll understand.
 
 
No…, the hospital’s too crowded,
I’ll talk on this phone,
But as soon as he’s ready,
You bring him home.
 
They will try everything
That money can buy,
But as soon as he’s ready…
 
 
We are now by his side,
Our boy’s life is dim,
And as soon as he’s ready,
We will bury him.
 
I honestly thought
We’d do more one day,
But since he was ready,
Angels took him away

Hugs To All,
and ^^Angel^^

---

Thursday, May 15, 2008 10:41 AM CDT

Hello Everybody! This past week has been one very busy but fun-filled week. We had Ciara's birthday party on Saturday and we spent Friday thru Sunday at Ione Homecoming selling Tri-Tip sandwiches for the fire dept. Ciara and Hunter had a great time at Homecoming and they are doing so well (knock on wood).

Today is National MPS Awareness Day which means it is a day to remember all of the children and adults who suffer from MPS and ML, think about Tommy and all of the other children we have lost, and to also think about the doctors and scientists who are dedicated to finding a cure for MPS and ML. Please take a moment to watch this video in honor of Ciara and Hunter and in memory of Tommy: MPS AWARENESS VIDEO



ANGELS IN WAITING

God gave me these babies for only a time.
He said, "They are Angels, remember they're mine.
One day they'll return to heaven above,
But for now they're your blessing
to care for and love."
I love their laughter, and cherish each grin,
Oh, those bedtime stories,
and just tucking them in.
Their beautiful faces, each one's so unique,
As they close their eyes and pretend they're asleep.
Tender hearts beating, the sweetest of hymns.
As they lay dreaming, I thank God for them
"Goodnight my babies, I pledge gratitude
For the angels in waiting that I have in you."
I'll treasure each moment with one thing in mind
I'm the keeper of angels for just a short time.

God gave me these babies for only a time.
He said, "They are angels, remember they're mine."



There is a very special place
I have within my heart
It holds the little children
Who know what REAL PROBLEMS are.
I know we all have problems,
We all have a cross to bear,
But I'm talking "bout the little ones
With a GREAT BIG world of care.
A world of pain and treatments,
And a fear of the UNKNOWN
Sometimes these little children
Call their hospital room "home."
They often suffer daily,
But they rarely will complain
About the treatments they endure
Which cause most of the pain.
Sometimes these treatments are much worse
Than the sickness in itself
And can cause some complications
Which could jeopardize their health.
Although these little children suffer
And are often ill from drugs,
They always have a smile to share
And they give the BESTEST HUGS.
So, next time you have a PROBLEM
which you feel you cannot face,
Just think about these LITTLE ONES
And try to have just half their FAITH.



Hugs To All,

and ^^Angel^^

---

Thursday, May 1, 2008 4:56 PM CDT

This past week has been such a wonderful week filled with smiles and laughs from Ciara AND Hunter. Ciara has been very silly and oh so cute but Hunter has also been laughing, and I mean belly laughs, this week. Now you may say, ok so he laughed, but for those of you who know Hunter, you know that I always call him Grumpy Hunter because he never smiles or laughs anymore so to see him so happy is wonderful. Ciara's birthday is coming up on May 7 and she is getting to be such a big girl, she will be 12 years old! Her party will be May 10 at Howard Park in Ione during Ione Homecoming so if you would like to stop by and have a cupcake, please do, we will be out there all weekend but the party starts at noon on Saturday. For those who are coming and are bringing a gift, Ciara is wearing a size 10 in pants/shorts and tops/dresses. She also loves to go to the movies so gift cards to Fandango Theaters. Last year at Ciara's birthday party she was so sick and ended up in the hospital two days later. She spent two weeks in the hospital and we almost lost her and we never thought that she would still be here to celebrate another birthday so this will be a very happy and exciting party for the little princess and I hope you can stop by and visit!

We have a donation page set up, just click here to check it out: Bennett Children's Donations

Hugs To All,

and ^^Angel^^

---

Sunday, April 13, 2008 10:28 AM CDT

Thank you all for the wonderful birthday wishes, I had a great birthday! I am still not happy about being 40 but what can you do. I started off my day by taking Ciara with me to Sacramento for lunch but when I got to my favorite place, they didn't have my normal food so I wasn't happy. I then decided to go to Olive Garden and got some food to go. On the way home I stopped at Dairy Queen for a Blizzard, very yummy, and then I tried to get home before John had to leave for school because he was gone for the past 2 days working and I hadn't seen him. When I got home I did get to see him for a few minutes and then he had to go to school and he wasn't going to be home until 10:00 that night. So the kids and I just stayed home and watched TV for a few hours. We were supposed to meet a few friends for dinner for my birthday at 7:00 but at 6:00 the fire chief called me and said that Debbie was in an accident with the Command Vehicle and I needed to come take pictures of it while the police were still there (I am the fire dept photographer). So I got the kids dressed, but them in the car and then spent the next 20 minutes looking for my camera. I couldn't find either one and I was getting very angry because I had it the night before in the car. Finally I just got in the car and thought I would go to the fire dept and see if there was a camera there but on the way I found my camera between the seats. I went to the fire chief's house and he said the car was parked out back. I opened the back door and BAM! I got smacked in the head with silly string and it was a surprise party and I was shocked that John was there, I thought he was at school. We had a great time and the best part was that I got the best present ever, thanks John!!! And thank you to everybody that came to the party and helped throw the party, it was wonderful! Now for the kiddos, Ciara and Hunter are doing very well (knock on wood). Hopefully I will have some new pictures soon but I don't have a photo editing system on my computer yet but I ordered one so when it gets here there will be new pictures.

Hugs To All,

and ^^Angel^^

---

Friday, April 11, 2008 12:32 AM EST

Today...FRIDAY April 11th is Alicia's birthday. Not only is it her birthday, but it is her 40th birthday (sorry Alicia had to tell) Please stop by and wish her a HAPPY BIRTHDAY in the guestbook!!! She will probably kick my butt when she see's I did this, but I can take her =) Alicia, I hope you have a great day. You deserve the best. You are an incredible mom, woman and best friend! You are a warrior for you kids and help so many people. Like it or not....you are awesome! I am so so very lucky to have you and my beautiful godkids in my life...oh yeah John is ok too...lol. Hopefully next year I will be there to party with you and I can beat you at skeeball. Anyway...have an awesome day. Know that little Tom Tom will be by your side all day giving you angel hugs and pinches.
Love ya and miss ya!!!! Alyssa

PS- you are only as old as you feel...wait, that won't work....uuhhhhh.....40 is the new 30!!!!

Hugs To All,

and ^^Angel^^

---

Tuesday, March 25, 2008 3:46 AM CDT

Today is Hunter’s 10th birthday, woohoo!!! I honestly can’t believe that he is 10 years old today, boy does time fly! I am not sure what we are going to do today but I ordered a chocolate birthday cake so Hunter will at least have some chocolate cake to celebrate. His birthday party will be on Sunday at Chuck E Cheese so that will be fun and he will have a great time. Since my last update the kids and I are finally feeling better. I thought we all had a bad cold but it turns out it was horrible allergies. Ciara got her new feeding tube and everything seems to be working well. Last week we went to Monterey for a few days and that was fun. We got to visit with my dad and some friends so it was a good time. Yesterday we went to John’s dad’s house for Easter. He is getting married in August so we got to meet all of Barbara’s family, although I went to school with her kids so I knew most of them already, but it was a full house and we all had a good time. I guess that is it for now but I just wanted to update you all and to wish Hunter a very happy birthday!

Hugs To All,

and ^^Angel^^

---

Wednesday, March 12, 2008 12:47 AM CDT

THURSDAY 7:00 AM UPDATE: Ciara had a good night last night but now I have to take her back to the hospital for a different reason. When I was feeding her last night I noticed that her feeding tube, actually the button in hertummy, was broken so now I am waiting for the doctor to call me back so I can take her in and have a new button put in. She is not going to be happy about that, it really hurts.

WEDNESDAY 7:00 PM UPDATE: Well Ciara does not have pnuemonia so that is good. We are not really sure what the problem is but we are leaning toward allergies and maybe it was a mucus plug that she couldn't cough up that caused her O2 SAT to drop. When we got to the hospital she had been off of oxygen for 2 hours and her pulse ox was 100 We did get some antibiotics for her but will only give them to her is she starts to sound like she has pneumonia. The doctor also put Ciara and Hunter on Zyrtec for their allergies so hopefully this will help. Thank you all for the prayers and keep them up that this doesn't happen again.


This is going to be a quick update. Ciara's lungs have been sounding a little wet on and off for a couple of days. Last night she got very pale and didn't sound good but after some chest PT, she looked and sounded much better. She was looking good this morning but sounded a little wet again so I have spent the morning doing chest PT and trying to get rid of the crap in her lungs. Around 10:30 I noticed that she was very pale again and all around her eyes were very dark so that worried me. I hooked her up to the pulse ox and she was at 87 I now have her on 3 liters of oxygen and her pulse ox is 98 I called Kaiser and they can't see her until 3:00 so John is trying to get home so that he can get Hunter off of the school bus. I will post an update when I know more but please pray that we caught this early and she doesn't end up in the hospital.

Hugs To All,

and ^^Angel^^

---

Monday, March 3, 2008 9:35 AM CST

Hello everybody. So sorry that I haven't updated in a while but I haven't been feeling well for weeks. The kids and I have had a cold which is just dragging on but thankfully Ciara and Hunter are getting better but I am not, I feel like I have slept the past 2 weeks away. We are really looking forward to going to Monterey in a couple weeks, it will be a lot of fun. I guess that is it for now, not much but like I said, I haven't done anything for weeks but at least the kids are better and that's all that matters to me.

Hugs To All,

and ^^Angel^^

---

Monday, February 11, 2008 8:25 AM CST

Hello everybody! Again, not too much happening around here which is always a good thing! Ciara and Hunter are doing well and keeping me busy. After 2 months my mom is finally getting out of the hospital on Wednesday so she has been keeping us busy with trying to get everything ready for her at her house since she can’t really walk anymore. We are planning on taking a trip to Monterey next month during spring break so we are really excited. It has been a while since we have gone anywhere and a bunch of our friends are going too so it will be a lot of fun. I guess that is it for now but the reason I am updating this morning is to tell you all about the Isabel Jurado Foundation. Isabel Jurado has Sanfilippo and her parent have started a foundation to raise money for Sanfilippo research and to help provide financial help to other MPS families. Izzy’s foundation is having a Pampered Chef Fundraiser so I thought I would put the info on our website in case anybody was interested in ordering and helping a wonderful cause. You can place your orders until noon on Thursday February 14 and here is the info from Izzy’s mom:

Hello,

The IJF (Isabel Jurado Foundation) will be the recipient of all proceeds on a pampered chef party held on Feb 10 here in SC but anyone in the US can participate online starting today. Remember we help MPS families get things they need to take care of their children. By supporting IJF you are supporting your MPS friends while getting some cool kitchen stuff.

Here is the link:

http://www.pamperedchef.biz/luanneduncan

click on the order products at the bottom left and make sure you put in Isabel Jurado as the party name in the first name box only. It is sensitive to capitals so type as above.

My friend is giving all of her cut (~15%) to us as well as the charity party standard percentage (15%) for a total of 30% to IJF. You can begin placing orders today but charges will not occur your credit card until Feb 14 when all orders are processed.

Please spread the word to your friends to help us make more money for MPS family assistance.

****Just a reminder that no money from IJF goes to Izzy or to us. We work for free for the foundation to help other families. Many of you here can testify to this.


THANK YOU!!!!

Leslie





Hugs To All,

and ^^Angel^^

---

Sunday, February 3, 2008 3:13 AM CST

I guess I better update, it’s been a while! Ciara is doing well since her hospital stay for pneumonia (knock on wood). She did need breathing treatments today but hopefully that is all she needs. Hunter has been funny lately, he has been laughing and smiling! For those of you who know Hunter, that doesn’t happen often, he is usually Mr. Grumpy. A couple of nights ago I had him sitting in a folding chair in the living room and I was in the office. Apparently he fell asleep and fell out of the chair (not good) but he crawled across the living room to the couch! Hunter hasn’t crawled in such a long time, I was so excited. He was crying because he fell but I didn’t want to pick him up, I wanted him to keep crawling (that doesn’t sound bad I hope, lol). When he made it to the couch I scooped him up and he was better. Last week we finally got the wheelchair carrier put on my car so now I can take their new wheelchairs with me, hooray! If anybody is interested we went thru NOR-CAL MOBILITY and they were fantastic!





In the past month the kids also received quilts which are just beautiful! Ciara and Hunter each got a quilt from LOVE QUILTS and Hunter got one from STITCHES OF LOVE AND KINDNESS and Ciara got hers a year ago. I can’t tell you how happy these quilts have made us and the kids just love them. You can see all the love that went into making each one of them and each square is cross stitched by a different person from across the country and in the UK, they are absolutely beautiful! I added pictures of their quilts on the photo page so check them out!



Hugs To All,

and ^^Angel^^

---

Sunday, February 3, 2008 3:13 AM CST

I guess I better update, it’s been a while! Ciara is doing well since her hospital stay for pneumonia (knock on wood). She did need breathing treatments today but hopefully that is all she needs. Hunter has been funny lately, he has been laughing and smiling! For those of you who know Hunter, that doesn’t happen often, he is usually Mr. Grumpy. A couple of nights ago I had him sitting in a folding chair in the living room and I was in the office. Apparently he fell asleep and fell out of the chair (not good) but he crawled across the living room to the couch! Hunter hasn’t crawled in such a long time, I was so excited. He was crying because he fell but I didn’t want to pick him up, I wanted him to keep crawling (that doesn’t sound bad I hope, lol). When he made it to the couch I scooped him up and he was better. Last week we finally got the wheelchair carrier put on my car so now I can take their new wheelchairs with me, hooray! If anybody is interested we went thru NOR-CAL MOBILITY and they were fantastic!






In the past month the kids also received quilts which are just beautiful! Ciara and Hunter each got a quilt from LOVE QUILTS and Hunter got one from STITCHES OF LOVE AND KINDNESS and Ciara got hers a year ago. I can’t tell you how happy these quilts have made us and the kids just love them. You can see all the love that went into making each one of them and each square is cross stitched by a different person from across the country and in the UK, they are absolutely beautiful! I added pictures of their quilts on the photo page so check them out!





Hugs To All,

and ^^Angel^^

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Sunday, February 3, 2008 3:13 AM CST

I guess I better update, it’s been a while! Ciara is doing well since her hospital stay for pneumonia (knock on wood). She did need breathing treatments today but hopefully that is all she needs. Hunter has been funny lately, he has been laughing and smiling! For those of you who know Hunter, that doesn’t happen often, he is usually Mr. Grumpy. A couple of nights ago I had him sitting in a folding chair in the living room and I was in the office. Apparently he fell asleep and fell out of the chair (not good) but he crawled across the living room to the couch! Hunter hasn’t crawled in such a long time, I was so excited. He was crying because he fell but I didn’t want to pick him up, I wanted him to keep crawling (that doesn’t sound bad I hope, lol). When he made it to the couch I scooped him up and he was better. Last week we finally got the wheelchair carrier put on my car so now I can take their new wheelchairs with me, hooray! If anybody is interested we went thru NOR-CAL MOBILITY and they were fantastic!






In the past month the kids also received quilts which are just beautiful! Ciara and Hunter each got a quilt from LOVE QUILTS and Hunter got one from STITCHES OF LOVE AND KINDNESS and Ciara got hers a year ago. I can’t tell you how happy these quilts have made us and the kids just love them. You can see all the love that went into making each one of them and each square is cross stitched by a different person from across the country and in the UK, they are absolutely beautiful! I added pictures of their quilts on the photo page so check them out!





Hugs To All,

and ^^Angel^^

---

Tuesday, January 15, 2008 9:37 PM CST

WEDNESDAY 9:40 PM UPDATE: We are home!!! Ciara does have double pneumonia but is off oxygen and back to her old silly self, babbling in the back seat on the drive home. Ciara's liver enzymes are elevated but they said that it was most likely due to the CK in her muscles. When the muscles tighten or spasm like when she was having the multiple seizures, it releases the CK and causes the liver enzymes to elevate. Hunter and I have been sick since yesterday and today he wasn't sounding good. Since we were already at the hospital with Ciara I took Hunter down to the doctor to check him out and he just has a cold but we put him on antibiotics just in case.

TUESDAY 10:15 PM UPDATE: Hey, this is Alyssa. Ciara is still waiting to go to Kaiser, but they took x-rays and her right lung has a spot in it and her left lung has haziness, which means she has double pneumonia. John is going to stay with her tonight and Alicia will drive down there in the morning to be with her. So I am sure she will update later tonight. I will update when she is at the hospital tomorrow. Please pray....

Alyssa

TUESDAY 9:52 PM UPDATE: They are transfering Ciara to Kaiser South. She is still having seizures and she has a temp of 101.2. Keep checking back here for updates. I will not have a computer but Alyssa will update for me and you can always get me on my cell phone.


This is a quick update to let you all know that Ciara has had seven huge seizures in the past 2 hours. We are giving her a breathing treatment right now because she is also having some breathing problems and then we are taking her to the emergency room. Please pray that she doesn’t have pneumonia, that is what I am afraid of!

Hugs To All,

and ^^Angel^^

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Tuesday, January 15, 2008 9:37 PM CST

This is a quick update to let you all know that Ciara has had seven huge seizures in the past 2 hours. We are giving her a breathing treatment right now because she is also having some breathing problems and then we are taking her to the emergency room. Please pray that she doesn’t have pneumonia, that is what I am afraid of!

Hugs To All,

and ^^Angel^^

---

Tuesday, January 15, 2008 9:37 PM CST

This is a quick update to let you all know that Ciara has had six huge seizures in the past 2 hours. We are giving her a breathing treatment right now because she is also having some breathing problems and then we are taking her to the emergency room. Please pray that she doesn’t have pneumonia, that is what I am afraid of!

Hugs To All,

and ^^Angel^^

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