History

Saturday, May 2, 2009 2:13 PM CDT

OK we're back her on our old page. Not sure what's going on with it but that's for another day, I've just about had enough of the computer for one day.

She's doing great (hate to jinx us). Hopefully the up coming allergy season won't be too much for her.

She has a weight check scheduled with Dr. Evans on Tuesday afternoon. So far she's lost 6 1/2 pounds since we started the Keto in October. Dr. Evans just wants to keep an eye on it.

We'll have a bunch of follow ups in June once school gets out.

We ordered her some cool hubcaps for her wheel chair. When they come in I will be sure and up date the site with photos. Check them out thought www.coolhubcaps.com

Big hugs
Barbara

Please continue to pray for all of her friends and grandpa Joe.

Sunday, March 29, 2009 3:13 PM CDT

Please visit our new page:

http://www.caringbridge.org/visit/saraswalk

Thank you

Sunday, March 29, 2009 3:13 PM CDT

Please visit our new page:

http://www.caringbridge.org/visit/saraswalk

Thank you

Wednesday, March 18, 2009 4:57 PM CDT

WOW... it's been forever and a day since I last updated. YIKES!!

How pathetic that there is really nothing exciting going on. I guess that's a good thing though right?!

We've had quite a few appointments and everything went well. The allergist is pleased with the way she looks. The GI doc is also pleased along with the eye doctor.

Dr Katz and Dr. Ghaciebeh (?spelling) our neruo and epileptologist were just completely in awe at how well she looks. We even visited with Stacey (the new old married women) and she couldn't get over how well she's looking. The keto diet seems to be working well for her. We have increased to the 2:1 ratio. If we decide to push her up tot he full force of 4:1 she would have to go in the hospital so they could watch her sugar levels. So we're not doing that just yet.

We were able to slide through the winter with no big issues. Amazing. She seems so much more alert and aware of her surroundings. Lots more smiles and she chuckles quite a bit now which just makes my day. Never ceases to stop me in my tracks and make me giggle along with her.

Hard to believe we are fast approaching Easter already. Where is the time going? Thank goodness Spring is coming on Friday. I'm ready to get the windows open and get outside.

Thanks for continuing to check on us and hopefully I will update sooner then later. I know my pictures are old just don;t have any new ones yet.

Monday, January 12, 2009 3:54 PM CST

Hi Everyone:
Happy New Year. Not much to update on. We had a wonderful Christmas despite everyone getting sick, one right after the other and then we enjoyed our new years eve. Amy managed to stay up to see the ball fall on TV and was VERY disappointed. She thought "the ball" was going to roll down the street. Her exact words were "That's it?" Guess she won't ever want to make a trip into the city to see it live. Thank God.

Sara is doing ok, she has a lot of appointments coming up this month so I will update afterwards.

I've been checking up on our friends and would ask that you please pray for Elijah and Fletcher, these boys are so amazing and they are really struggling right now. Both are facing more brain surgery and my hearts just aches for them and their family.

Taylor is back in the hospital and they are unable to find the source of her on going infection. She too is a little beauty and we just adore her and her family.

Elena is suffering with seizures again and they sound like they are worse then ever. She's just adorable and we have been following her for years.

Please pray for Sara's friends and also for her granpda (my dad) he is in the hospital and we they are trying to get a handle on his issues, which seem to be many. Thanks

Bigs hugs
Barbara

Monday, December 8, 2008 10:17 AM CST

Wow... where is the time going. I feel behind the eight ball already.

As you can see we did manage to get a Christmas picture. Despite Gus's reluctance.

Sara is doing good. I hate to type it and jinx us but she really is. She seems much more alert and aware of her surroundings. She's happy. We're still on the Keto diet 1:1 ratio and she seems to tolerate it well. Her seizures are about the same, rarely does she get a day off. They seem to be coming on much stronger but with one swipe of her VNS they tend to decrease almost immediately. Why is that? No clue, trying not to figure it out and just going with the flow.

So we're just trying to get ready for Christmas. Baking cookies, wrapping presents all that fun stuff.

Hope all is well with everyone checking in on us and please sign in we love to hear from all of you. If I don;t get back on again, Merry Merry Christmas and health and happiness for the New Year.

Big Hugs
Barbara

Saturday, November 1, 2008 9:28 AM CDT

Well we made it through October despite going through and unbelievable snow storm three days before Halloween. By the time it was over Mother Nature dumped 7 inches on us. It was crazy. Hard to believe it was October. It scares me to think what's coming when winter actually hits.

Sara is doing well. We are trying the ketogenic diet. We are on the 1:1 ratio so it's not as restrictive as the full fledged diet. She seems to be doing well. Have not noticed a big decrease in seizures but they do seem to go away a bit quicker. If we decide to do the full 4:1 ratio then we have to go in the hospital to start that. Have to check ketones, blood sugar and all that stuff. We don't do that now. So we'll see.

Don't have time to really update any more now. It took me a while to get her halloween pics us. They kept coming over too tiny, so annoying. Anyway she's doing well... thanks for checking on us and continuing to pray for her and her friends.

Big hugs
Barbara

P.S.
Please pray for her grandpa Joe, he's in the hospital having multiple issues to deal with.

Thursday, October 2, 2008 2:51 PM CDT

Wow... it's been a while since I updated.

Let's see, Sara... we'll she's Sara, what else can I say. We spent this past Monday in Hackensack ER. She had a seizure in the morning and was given her normal dose of Diastat. About 2 hours later in school, she was very pale, her nail beds were dusky colored and her sats were in the low 90's. She looked absolutely horrible. We had her on Oxygen and took off for Hackensack. She spiked a fever in the ER but we were never able to find a source of infection. We could have admitted her. Docs didn't feel it was not necessary but would do it just to watch her. They felt she is getting a virus and she was looking a bit better. Obviously she didn't feel herself but wasn't requiring oxygen so we opted to come home. The last place we want her is i the hospital where she can pick up anything. So she was home for two days and just went back to school today. What ever it was seems to have passed and she's back to her old self again. She really likes to keep us on our toes, I wish she would stop that.

I went postal on poor Dr. Katz in the ER and feel like such a fool. He's done nothing but care about her and I just let all my frustrations out and unfortunately he was in my line of fire. Just an FYI to everyone out there... Never get in the way of a frustrated, over stressed, on the verge of breaking down mother with a cronically ill child. It's not a pretty picture.

So that's about it. We're getting ready for Amy's 8th birthday party next Saturday so that's giving us something to look forward to. She's excited and on countdown.

Thank you so much for all your prayers and e-mails of concern. We're doing better and I hope to get back on track with my updates.

Big hugs

Monday, August 25, 2008 11:34 AM CDT

Hello everyone:

Well Sara gave us quite a scare last week. I don't know how much I can go into because, seriously, I've had nightmares. Jeff was working midnights so I was home alone with the girls. Sara was having trouble sleeping so I brought her in with me. She started having a seizure around 1am on Wed. Not her usual just kept twitching on and off and it didn't go away. I gave her Diastat and by 2:00 am it was still going on and I had to give her another dose of Diastat. The second dose of Diastat was a lot for her and that's where I got scared. OF COURSE I could NOT get Dr. Katz on the phone and was in a near frenzy. She started to calm down and I got Jeff on the phone to come home and my in laws on the way to stay with Amy and by 4:30 we were headed to Hackensack. She proceeded to dot the same thing around 7am in the ER and and she was given Atvian via an IV that they got in her within seconds. All hell was breaking out around us, it was a flash back to 5 years ago. Unfortunately Ativan does not have the same effect on Sara that it has on most others. Instead of knocking her out it aggittates her. She's been having stomach issues and on top of that with the Ativan, she cried from 7:30am to just about midnight when she finally fell asleep. It was awful. She was so tired but so annoyed that you just couldn't comfort her. She didn't want you touching her but would get even more upset when you stopped. She of course was admitted and hooked up to the video EEG. Since her last admission in July her seizures during the night were much worse. Thursday morning Dr. Ghazebeich (epileptologist) came in to see her and he is like a breath of fresh air... a light at the end of the tunnel, we love him. His suggestion was that her Keppra dose is SO low, she was only getting 250 mg a day and could easily be on about 1000mg. So he order a bolus dose and she's like a whole new Sara. Thursday night her seizures were much much better. He also increased her VNS a bit and she seems to be tolerating that well. Since we were in the hospital and she was already scheduled for a stomach scope on Friday she had it done while we were there. She does have some gastritis and something else that I can't pronounce let alone spell. Her prevacid was increased and we added Carafate and she definitely seems better with that as well. We came home late Friday afternoon, well evening. Because of what happened we know have oxygen in the house. In order for it to be covered by insurance we also have to have portable oxygen with us when we travel. So we waited 4 hours for the guy to arrive with it before we could come home. Oh well, now we have it and I pray to God we never need to use it.

I'm so thankful that Dr. G chose to be so aggressive with her. I'm seeing a side of her that I don't know if I've seen before. She's so bright eyed and alert. Very content, even happy. Lots of smiles and even some giggles again. Even making noises vocally that she's never made. She's doing some new things that I question seizure activity but don't know if it is or just something new now that she feels better.

Finally got the laundry done and now have all our follow up appointments scheduled for next month. She goes back to school on the 28th as will Amy. Poor Amy, she was just beside herself. She woke up in the middle of the chaos as I was packing a bag and she just went to pieces. It just tears me apart that she has to go through all of these emotions, so unfair. She was delighted Friday when we came home, she met us in the driveway, hootin and hollerin. Even Mr. & Mrs. Moore were out giving a cheer that Sara was home. So nice to be loved like that.

So on that note, I need to get going. Please pray that the Keppra increase along with the VNS increase continue to be the key to keeping her stable.

Big hugs and thanks for checking in on us.

Wednesday, July 30, 2008 5:35 PM CDT

Hello everyone:

Where is the summer going? So hard to believe that We are closing in on August already. Sara will be 6 on Sunday. We don't have anything planned, just us. I still can't believe another year has come and gone. She's grown and changed so much. She's the biggest blessing to have ever come into my life. She is my life.

She's doing well. Everything is pretty much the same. We are still trying to figure out how we could manage to try the ketogenic diet again. Jeff has some vacation time in December that he's going to try and see if he can move it to October. We refuse to go into the hospital the week of Christmas so hopefully we can work something out for October. We have gotten the OFFICIAL approval from the insurance company to pay for the Keto Cal. I made an appointment next month to see Dr. Katz. We would really like to sit down and talk things over with him.

She has a couple of more weeks to go with summer school and then she's off for about two weeks. We may try and see if we can go to Dorney Park or something fun for a day.

That's about it, thanks for checking in on us. Big hugs

Saturday, July 5, 2008 7:24 AM CDT

We're home... much sooner then we expected.� We came home Tuesday evening.�� I won't go into all the details other then the process was doomed from the very beginning. We have decided to change our last name to Murphy, as in Murphy's law.� Anything that can go wrong... even if it's the tiniest, smallest, almost non-existing chance, with us it will.� I had raised a red flag three months ago when we started this process about our insurance company paying for the Keto Cal.� They claimed that they would if she was admitted and it was necessary for her discharge.� That changed on Monday and then changed again on Tuesday.� The end result is that Jeff and I do not trust our insurance company.� We have been burned by them before, promises always seem to get broken.� So unfortunately Sara came home and we are NOT doing the keto diet.� We have been on a roller coaster of emotions from anger to disappointment to feeling like failures to just plain sad about the whole thing.� Sara thankfully seems no worse for the wear and was a complete trooper through the whole process.� We do have to send thanks and big hugs to Stacey and Leigh for all the effort they put into fixing this issue.� Their genuine care and concern for us and Sara means so much to us.� After being home for a day or two we've been in talks with Stacey and we may consider doing the diet the old fashion way.� Weighing and measuring food and putting it through a food processor and then through her tube.� It has to be done on an OUT PATIENT basis or we won't go for it.� So for now we're just� getting back to our normal.� We did have a fun day on Thursday.� We were given free passes to any amusement park in the country for one year with Sara's Make a Wish trip.� So we decided to go to Hershey Park.� Amy had an absolute blast, she rode nothing but roller coasters all day.� It was a great day for all of us.�� Sara will start summer school on Monday.� So for the rest of the weekend we're just laying low and taking advantage of having daddy home with us. Thanks for checking in on us.� Please continue to pray for our friends.� Big hugs to everyone.

Tuesday, June 24, 2008 2:23 PM CDT

Hi All:

I was just checking in on some of our friends and wanted to ask you to pray for them. Angela is not feeling well and having blood pressure issues. Joey is going to have surgery. Fletcher is n the PICU you as I type and has undergone Grid surgery. Sara had the same procedure done years ago and it's rough. Please check out his page and send him and his family some prayers. Tabby just recently started the Keto diet, please pray for much needed seizure relief and control. Thanks.

P.S.
We're fine here just waiting to head to the hospital on Sunday.

Monday, June 23, 2008 8:20 AM CDT

Hi everyone:
Not much to update on just waiting for the 29th to roll around.

Schools out and the girls seem to be enjoying their time off. Sara will start summer school July 7th. She's been very content and happy lately. I'm noticing some changes in her. She is definately more aware when you come at her and talk to her. She gets the cutest little grin on her face. She seems stronger too. She's rolling all over the place and gets up on her elbow. When you sit with her she gets her elbow in your side and tries to sit up further. This may not seem like much but to us it is.

She had a dentist appointment last week and all is well. She has about 3 loose teeth. Because of the phenobarb her gums are very swollen so it seems like her teeth have taken forever. She did great though. We found out that they are used to treating kids on the keto diet as well. Which is good to know if we're still on it this fall when her next check up is.

I have a really vain prayer request. Please pray for nice weather this Friday. I'm planning a day at the beach and I'm so looking forward to getting to relax and listen to the ocean. This will be the first time Amy and my niece Allie is going with me. We're going with my buddy Polly and her future daughter in law Becky. Girls day out. We're so excited and this is a BIG DEAL for Amy. She's about going out of her mind. It's out day to bond and hang out before we're seperated for a week. Thanks.

So that's it for now. I don't know if I will update again before we go in. Please pray for Sara and this whole process. I'm sure she'll be fine but I guess it's mommies job to worry myself sick.

Hugs and thanks for checking on us.

Wednesday, June 4, 2008 3:05 PM CDT

Nothing new to update on. We're managing with her dust allergy. The Veramyst seems to be working well.

Trying to get all our ducks in a row for our June 29th admission into hotel Hackensack. I've checked out some web pages on the ketogenic diet and although it all seems a bit over whelming I'm sure we'll get the hang of it. Thankfully she has the g-tube (strange thing to be thankful for) which right off the bat makes this eaisier. Regardless... I'm still nervous. Just knowing were going back in for maybe as long as a week scares the you know what out of me.

Please pray for peace about all of this. We have to trust that we're doing this to make things better for her and prayerfully that will be the outcome.

Thanks for checking in on us. Big hugs.

Saturday, May 10, 2008 5:48 PM CDT

Hi everyone:

Turns out Sara is allergic to dust. One of the hardest to control due to dust being just about everywhere. So we'll try the best we can. We have air purifiers in the house and are going to get the mattress encasement, which will enclose her whole mattress. Reading about dust mites just about set me nuts, YUK. She's using Veramyst nasal spray twice a day and the allergist thought she saw improvement in her nasal passages. Yeah.

We met with the dietician and I've got the basics that I'll be needing. Because she is tube fed the feeding part will not be as difficult for us as it is for others. It's controlling her environment that has me a bit flustered. She has to use certain shampoo, soap, lotions, sun screen, pain medication, the list goes on and on. We should be set for admission on Sunday June 29th into the hospital to get her going. Because she has to fast and get into the "ketosis" state they have to monitor her. If I understand right it can throw her system out of whack. They anticipate a couple of days but Jeff and I know Sara so we're not going to hold our breath on that one. We're just praying for no issues and a decrease in her seizures. She may even loose a little weight which would be a good thing. Because of the hypothalamic obesity she's gained so much but we have been able to hold steady at 63-64 pounds for over a year now. For which my back and shoulder in particular are grateful for.

We went to see walking with the dinosaurs in Baltimore Maryland last Saturday and it was fabulous. We all really enjoyed it. They really could fool you into thinking they were real. We also hit the aquarium which I have to say was a huge disappointment for all of us. It's not very accessible for wheel chairs and we spent quite a bit of time riding the elevator trying to find things. Finally we gave up and left. All in all though the 3 hour trip was worth it just to see the dinosaurs. Amy our future palentologist was just blown away. Sara seemed to enjoy all the noise as well. So if you have any dinosaur lovers in your house I would highly recommend it. You can check it out at www.wwdshop.com/index.php

Some of you may already know that the photo of the bears was taken looking out our patio door onto our deck. They came for a surprise visit last Friday evening. Scared the you know what out of us. I can look at them now and think they are so cute but at the time they were just scary. First time I have ever seen one outside of a zoo and we have never had them come onto our deck. I guess there's a first time for everything though.

So that's about it. Happy Mothers Day tomorrow. I hope all of you are spoiled and get a well deserved day off.

Big hugs, lots of love to all of you and thanks for checking in on us.

Monday, May 5, 2008 1:26 PM CDT

Hi everyone:

Quickly wanted to update about the 2 bear photos I added to our page. We have a deck off the back of our house that is about 15 feet off the ground. I heard a noise on Friday early evening and looked out to find these two trying to get into the tucker tote holding my bird seed. They climbed up Amy's swing set to hang onto the railing and then pull themselves over. Needless to say I was terrified and quite shocked to see them. Never have I ever been that close to a bear in my life. Thankfully no one was hurt and they did little damage.

Sara has a follow up appointment tomorrow with the allergist to get tested so I'll now tomorrow what she's allergic to. I'll update then if I can.

Hugs

Sunday, April 20, 2008 7:36 PM CDT

Hard to believe another week has come and gone and we're already half way through April. Where is the time going?

Nothing new and exciting here. As you can see I was finally able to get some new pictures up. We had a gorgeous weekend with some fabulous weather. It was nice to get everyone out of the house and work in the yard a bit.

We have appointments in Hackensack next month to get the ball rolling on the Keto diet. We're going to see an allergist the end of this month. Long over due. Hopefully we can get to the bottom of Sara's nose issues. She's done with her antibiotic and she seems to be starting with her congestion all over again.

So that's it for now, please continue to pray for our friends and thanks for checking in on us.

Big hugs

Sunday, April 6, 2008 7:44 PM CDT

Hi everyone:
Just taking a minute to update. Not much going on here. We had a nice Easter, kind of quiet. We spent the day at Jeff's mom and dad's house.

Sara has a sinus infection and seems to be on the med now. Poor little bugger Her nose is so tiny and if she could just give it a good blow I think she would feel better. I help her the best I can but it's way up in there. Gross, I know. What an update.

Anyway we're going to be meeting with a dietician and Stacey to go over the Keto diet. We're planning on admitting her and getting this going the end of June.

Eye doctor appointment went well. Vision changed a tad but not enough to warrant new glasses at this time. Which is fine with us, we have a hard enough time getting these on her.

Please keep our friends and families in your prayers and thanks as always for continuing to check in on us. I have some new pictures to add I just need some more time to be able to sit and do it. Hopefully soon.

Big hugs.

Wednesday, March 12, 2008 8:46 AM CDT

Hi everyone:

Just a quick update. Not much going on. We have an appointment next week with the epileptologist to discuss the Ketogenic diet. Apparently Sara is NOT a candidate for the Modified Atkins (after speaking with John Hopkins) because she is not eating by mouth. So we're going to talk and find everything out about the Ketogenic. We have the option of going to Baltimore and doing this with John Hopkins (Katz would like that) but we're leary on how the follow up and all that works when she's discharged. Baltimore is not right around the corner, it's hours away. I've talked at lenghts with Stacey at Hackensack and they now have a prgram in place and a "protocl" that I know involves a 7 day (at least hospital stay) which I'm not looking forward to and frankly scares me silly. I'm a bit taken back by all that's involved with this diet. Food is not an issue because she will have Keto-cal formula but this effects lotions, soaps, diaper wipes anything that comes in contact with her and is absobed in her skin. WOW. So, if we decide to go forward with this it won't be until July when Jeff has vacation scheduled. Yeah... a vacation at hotel Hackensack, what worldy travelers we are.

Seizures are still the same, very bad days and then not so bad days. I just wish they would go away.

Love and hugs to all.

Friday, February 22, 2008 2:42 PM CST

Well we're getting hit by old man winter. The girls are home from school today and we're snuggled in.

Sara is hanging in there. Not much new to report. Seizures are still the same. I'm struggling with this so simple modified Atkins diet. Simple my rear. Ok wait yes it will be simple to change her formula. The company we get her current formula from already told me they have Keto Cal on hand so getting that will be easy. Getting someone to manage her during all of this is another issue. Dr. Katz said all we need is a dietician to help manage the ketosis levels. So I thought ok I'll contact Dr. Kogan's office (her GI) who deals with her formula, calories, fluid intake and all that. Piece of cake... wrong. No, they can't help me there's too much involved and I need to go to a metabolic center. Huh!? I want to do this and I'm willing to try I just don't have it in me to do the research and get nothing but the run around. Does that sound absolutely horrible? I just want to say if this is so darn easy then you do it for me. Now that... that would be easy. So, I'm going to ask everyone on the Aicardi list serv because I know some of the girls have tried it, and find out what kind of doctor helps them manage the girls during the process. If anyone has any suggestions or can point me in the right direction, I would so appreciate it.

Big hugs,
One tired momma

Monday, February 4, 2008 11:23 AM CST

We're home. We got here yesterday afternoon. Thank you to everyone for your prayers, e-mail and phone calls. We are blessed to have so many people that care about our girl.

She was hooked up to video eeg late Friday night and thankfully she started performing almost right away and they got plenty of information from her. The mild pulling that she's doing which seems to last about 13 minutes is definately a seizure. Some of her giggles are seizure related and some of them aren't.

Dr. Katz would like to try her on a modified Atkins diet. This is supposedly quite easy to do with a child who has a g-tube because we can switch her formula to Ketocal. That's it. No measuring food or anything, just switch formula. So I've put in a call to the GI doc and the nutritionist who helps us with her pediasure now. I've heard that this new stuff is liquid gold and most insurances don't cover it so I'm hoping and praying with the help of the GI docs we can get it covered. The good thing about trying the new formula and not messing with her meds is pretty obvious. We should know in about a month if the diet is successful.

That's about it. She's home today and seems to be getting back to herself. We're still picking glue out of her hair which has been washed about 6 times and who knows how long we'll be doing that. I'm just so thankful that we were able to get in and get out and not end up in the hospital for weeks on end. Dr. Katz stuck to his word and for that he really lives up to his name "The King"

I'll let you know how the formula situation is as soon as I have more information. Thank you again for all your prayers.

Big hugs
Barbara

Friday, February 1, 2008 3:21 PM CST

We're heading to the ER, please pray for Sara. Her seizures are just ridiculous. Mommy can handle them on a day to day basis and has sadly enough grown used to them. But when they start coming on a constant basis and mommy gets freaked out, we'll per Katz, see you in the ER.

Please pray for her. Please pray for my father as well he is being admitted on Sunday to have stents put in both legs on Monday.

Thanks
Barbara

Tuesday, January 29, 2008 5:14 PM CST

Hi everyone:

Long over due, I know. We'll we had an awesome time in Disney World. It was the best trip we have ever been on and I don't think any trip will come close in comparison. The drive down was a bit rough, we found ourselves stopping more then we had planned but we were leaving it all up to Sara and how she was handling things. We tried to get her out of her wheelchair as much as we could when we stopped and let her stretch. I'm so thankfully we have the full size van now. It made things easier.

Give kids the World was just amazing. The villa's are beautiful. Just right for a handicapped child. They think of everything. They go out of their way to make you comfortable and do what ever they can for you. We ate their every morning and chatted with many of the volunteers and it's just amazing how many people donate their time to the village and the children. There's so much to do right there but we of course were trying to see as much as we could so we didn't spend much time there. Little fact, there are over 50,000 stars on the ceiling in the castle of miracles. That means over 50,000 wishes granted. They added Sara's before we left :o)

We had passes to Magic Kingdom, Epcot, Animal Kingdom, Universal Studios and Sea World. We hit Sea World before we even checked in at GKTW. Anheuser Busch owns the park and as an employee Jeff gets passes so we took advantage of those knowing that we really wanted to spend most of the week at the other parks. Sea World was very nice. Shamu's show Believe was awesome. We didn't get to see any of the other shows but we enjoyed the park over all. Met some of the Budweiser clydesdales. Amy being the thrill seeker loved their roller coaster Kraken. On which you spend an amazing amount of time flipping upside down.

Tuesday we hit Magic Kingdom and it was just so, we'll magical. We took the ferry boat over from the ticket center and when we caught the first glimpse of Cinderella's castle we couldn't help but feel giddy. We were actually there. The Happiest Place on earth. We found out right away that this was going to be a special trip. We spotted Pluto as soon as we hit Main Street. So we got an autograph book and got in line. Pluto caught site of Sara and her GKTW button and pointed her out to a cast member. The cast member came over and said "hello Princess Sara, Pluto would like to meet you." She then lead us to the side around the line and told us that we don't wait in lines. The trip is designed for the family to get as much enjoyment out of what little time they have. Just make sure you see a cast member and they will take care of you. Jeff and I were like, ok. So we met Pluto and then Chip. Everyone in line was very understanding. We then headed to Toon town where we met Minnie and the big mouse himself. Before we knew it we had met, Goofy, Donald, Cinderella, Belle, Aurora, Jasmine, Alladin, Winnie and Tigger, Timon and Raffiki. WOW !! Sara was able to go on some rides. She went on Pooh's Adventure, The Pirates of the Caribean, and The caroussel of progress. Hard to believe it but we never made it to It's a Small World. I know, shocking. Amy on the other hand hit every thrill ride she could. Mommy and daddy would take turns riding with her. It was a great day and time of the year to be at the park because the crowd was minimal and the lines were very short. The only thing we didn't plan on was the cold. It was really cold. Sara spent most of the day with her hooded sweatshirt on and wrapped up in a blanket. We never did any of the special dinners we had planned. Mostly because we didn't want to take the time and leave the park knowing that we only had so many days and SO much to see.

Wednesday we hit Animal Kingdom and then we were brave enough to also hit Epcot. Again, the crowds were minimal and the longest line Amy and Jeff had to wait in was about 20 minutes for the Mount Everest roller coaster. Sara was able to stay in her chair and ride through the Safari. That was cool. At Epcot she rode in the "Golf Ball" I don't know what it's called. She seemed to like it though. Oh she also rode the ride "Soarin" where your lifted in front of a large screen and you feel like your flying. Your hair blows, you can smell trees and stuff. She was so cute, she had her feet hanging down and she started kicking them and squealing. She also did the Finding Nemo ride and the turtle talk with Crush which she slept through. We tried so hard to make it to 9:00 to see their "Illuminations" show but we just couldn't. Exhaustion hit us.

Thursday we went to Universal Studios. It was a yucky day. Kind of drizzly and really muggy. The air actually felt thick, kind of gooey. Weird. Once again Amy found the thrill ride. The Hulk and rode it 4 times in a row. Thank goodness I brought motion sickness medication with me. My stomach just can't take it like it used to. Does that mean I'm getting old? We all loved Shrek's 4 D show and then getting to meet him and Donkey afterward. We headed back to GKTW by 4 ish. Christmas was coming to the village that night. Mr. & Mrs. Claus, presents and even snow. It was a blast. All the kids loved the snow.

Friday, Mickey and Minnie came to the village and then we head back to Magic Kingdom for our last day. In hind site we should have gone back there on Thursday. Friday's crowd was much heavier. We thought it was mobbed only to hear that the crowd was nothing. It was actually a really rough day. We're not sure what was going on with Sara but she was just miserable. We were afraid we had pushed her too much. She was crying and just seemed so uncomfortable. Jeff and I took turns sitting with her in the first aid center. I actually thought by noon we were going to have to call it a day. She seemed like her belly was bothering her. So as a last resort, I completely emptied her out by venting her. She had some gas and then I got her Children's Mylanta. Gave her one dose and within 20 minutes to a half hour she was a whole new child. We actually closed the park that night. Amy and Jeff waited well over an hour to ride Big Thunder Mountain Railroad roller coaster, yeah the crowd was that big. Sara and I rode through the Haunted Mansion. Amy was horrified and absolutely refused. Thankfully she didn't ride because they had some difficulities and we got stuck in the attic for about 10 minutes. Regardless of the crowd we were still thrilled to be there. We met so many wonderful, genuine people. Everyone called Sara and Amy princess and just made us all feel special. We had gotten the Photo Pass when we entered the park. Which is when someone in the park takes your picture, they load it on a card and at the end of your stay you can view the pictures and decide if you want any. At the end of Friday night we went to look at our pictures and decided we wanted to purchase a CD, as I was getting out my money, the girl whispered to put it away, she told me twice to put it away. I asked if I could give her anything and she said no, so I asked if I could give her a hug. That she would take. That one special moment meant so much to Jeff and I.

So that's it, our trip in a nut shell. We sit here and watch the slide show I loaded on a CD and think how can it be over already. If any of you out there are thinking about going to Disney for your child's Make a Wish trip I would so recommend it. Truly it was a magical time, I know that sounds silly but it really really was.

Most of you know that Sara brought home some Disney magic with her and that she has been laughing. I don't know how to explain it but she's like a different child. It's almost like she has turned this tiny little developmental corner. She seems so happy, lots of grins and chuckles. She seems a bit more attentive and seems to give a bit more eye contact. She also managed to go 9 days without a seizure. Now for the typical Sara point. She seems to be seizing when she's chuckling. Which just breaks my heart. I just got off the phone with Dr. Katz about an hour ago. As I was explaining to him she's not having full blown seizures but she stiffens sometimes when she chuckles. Not every time but when she does it will go on for maybe 3-4 minutes. Very subtle. If you didn't know her you would probably miss it. Dr. Katz called it a name but I can't remember what it was. Apparently there is a form of epilepsy which is essentially a laughing seizure. He does not think it's that because she's not doing it every time. When she full out belly laughs she's not doing it. I really think it's a seizure but I don't know for sure and Dr. Katz said he's not convinced that it's a seizure so he said those dreaded words. Video EEG. 48 hours in hospital so we know for sure. I really do think she's over due for one, it's been years but I just dread doing it. I'm so afraid she'll pull a Sara and 48 hours will turn into who knows what. That said I don't want to medicate her for something if it's not. I also am on the fence about increasing her meds anyway. It's a quality of life issue. She's the happiest she's ever been and I don't want to see her stoned again with no personality or expression at all. So after talking to Jeff I have to call the office tommorow and tell them it's a go. We would like to do it on a weekend and unless they are empty up there were assuming it will be next weekend. I'll let you know though. Right now she's sitting next to me in her chair and she was just laughing away. Just laughing. Nothing else. That I just love and you can't help but laugh with her.

Anyway, my goodness that was long winded, thanks for sticking it out with me. Big hugs to all and I'll let you know when were going in.

Love ya

Saturday, January 26, 2008 3:24 PM CST

Bear with me I'm working on updating the page. Having a hard time.

Sunday, January 6, 2008 7:37 AM CST

Friday afternoon we picked up Sara's Hip Abductor brace. She was supposed to be getting a new scoliosis brace as well but for some reason it just seemed way too small. New measurements were taken and they put in a new order. I was glad because she would have outgrown that one in no time. The hip abductor brace is quite the contraption. She has to wear it when she's sleeping. She's on her back, her legs are frogged legged out and slightly elevated. It looks like it would be uncomfortable but believe it or not, she seems to like it. She's been sleeping through the night and seems very restful. I hate to say all that and jinx myself but so far so good. This brace is hopefully going to help us postpone hip surgery. Only time will tell.

We go see Dr. Katz on Tuesday. We don't anticipate anything exciting happening at this visit. But, I guess you never know.

I don't know who's more excited about the Make A Wish Trip. I think it's mommy. I just can't wait. Having been to Disney a few times, many, many years ago, I just can't wait to see it through the girls eyes. Daddy as well, he's interested in meeting Cinderella :o) I made some reservations yesterday for us to have some character meals. We're going to have dinner with Cinderella, breakfast with Chef Mickey and dinner with Pooh and the Gang. I'm just jumping out of my skin. I'm very anal so I've been making my lists and revising them. Checking and double checking everything.

We'll Sara is just about done with her feed and needs to get in the tub so I'll sign off for now. I don't know if I'll get back on before we go or not. Please pray for a safe and healthy trip.

And they lived happily every after .....

P.S.
I added some new friends to our list. If you have time check in and say hello. Big hugs

Tuesday, January 1, 2008 1:06 PM CST

Happy New Year !!!

I hope everyone had a great Christmas and are ready for 2008. Our Christmas was very enjoyable. Sara had a good day and seemed to enjoy opening some presents. Her favorite so far is a drum that is connected to her mac switch. When she touches the switch the drum beats. It's hysterical when it really gets going and she just sits and watches it.

Her seizures have been strange. She'll have a couple really good days and then wham she gets hit and hit hard on and off throughout the day. This darn Aicardi Syndrome is so hard to figure out. Maybe that's the key... I should stop trying to figure it out and just deal with it day to day. Hmmm.... I'll have to work on that.

School starts again tomorrow. The girls are getting hair cuts after school and then Sara goes to see Dr. Katz next Tuesday. She had her well child check and a visit to the dentist and got rave reviews all around. She was fitted for her new scoliosis brace along with her hip brace. They might be in before our Disney trip.

Sara's Make A WIsh Trip to DISNEY is just around the corner. We're so excited. I'm already making lists and lists so I don't forget anything. We've been on line checking things out and just can't wait. At this point we're just trying to keep everyone as healthy as possible. If I can I hope to post a few pictures while we're there.

So, I think that's about it. Once again Happy New Year. Thanks so much to all of you for becoming a part of our lives and caring about our little girl enough to keep tabs on her. We love to read your guest book entries. God bless and big hugs.

Friday, December 8, 2007 7:16 PM CST

We just checked in on our friend Joey and saw that they had elfed themselves. We just couldn't resist. Check it out and go make one for yourself. Too much fun.

http://www.elfyourself.com/?id=1227497037

December 3, 2007
Thank you all for your prayers and well wishes for Sara. She seems to be on the mend. Her antibiotic is done but will remain in her system for a total of 10 days. Today she went back to school and had a good day. The hardest thing for her is to cough up the gunk. Most of us would be moving it out quicker then she can. You can hear it in there and think man if she would just give a good cough. Thing is when she does, she gets gagging on it and dosen't know what to do with it.

The best news is that she's feeling better and getting back to her happy self. Right now she's rolling around on the floor happy as a clam.

As we head into this crazy time of year I hope that all of you can take the time to enjoy your families and remember what this season is all about. My friend and I were just talking today about God's timing and the things that he lets happen that none of us can understand. Sometimes I think I take her off guard when I tell her how lucky I am. Why? This is the life that I have always known. Sara was quote un-quote normal for 6 weeks before her first seizure and our world turned upside down. So I had no time to get into a routine so to speak. The life we have with her now, I am grateful for. I'm glad that it happened the way it did. Not when she was a year old and I could say remember when she could do this or remember when she could do that. So I don't know what Im missing. Does that make sense?

When asked what if things were different and Sara was your average 5 year old. How would life be for me then. My answer is that I would probably be taking it for granted. Probably complaining about running here and there for girls scouts, brownies, this friends house, the girls fighting, blah blah blah.

This life has taught me and continues to teach me every day to take NOTHING for granted. Things can always be worse. I've spent enough time in the PICU with Sara to know that I wouldn't trade our problems for anyone else's. We have precious friends going through holidays without their children this year. So how about we all pledge to not worry about getting everything done and buying just the right stuff. Let's count our blessing instead. Right now I'm looking at one of mine. I think she needs some smooches from mommy.

God bless and if I don't get back to the computer again may you have a very Merry Christmas and a Healthy Happy New Year.

Love and hugs

Wednesday, November 28, 2007 6:29 PM CST

We just got home from the doctors about an hour ago. Sara has walking pneumonia. She's on an antibiotic. Please pray that we will be able to treat this at home and not end up in the hospital.

Thanks

Saturday, November 24, 2007 9:10 PM CST

Wow, It's been a while since my last update. I hope this finds all of you well and that you had a nice Thanksgiving.

Let's see... she's on a roll again with her seizures. It's so frustrating to try and figure out why we go through these spells where she gets worse. Nothing is new, we haven't changed anything. It seems to be Sara just being Sara. She's also been sleeping a bit more. She slept on and off most of the day today. That said the seizures are hard on her so being tired does make sense.

We went to see the orthopedist last week (I think). She definitely needs a new scoliosis brace. The one she has now is barely fitting. He also x-rayed her hips again and said that her right hip is subluxing (?) He said it's worse then last time and that we may have to think about doing something with it. If left alone, it will dislocate which would be extremely painful for her. So he would like us to consider surgery next spring. Jeff and I needless to say were completely taken off guard and shocked. He then informed us that he would do it at St. Joe's not Hackensack and got a bit testy with us when we explained that all her docs are in Hackensack and that we are so much more comfortable there. He also said her seizures would have to be under control. Well that just made us laugh out loud. If we wait for that we'll you might see pigs fly first. He annoyed me personally because he just has no clue what this child has been through. Just clueless. So for now he wants us to also get her a hip abductor brace and try that. We're going to talk to her other docs and get a second opinion and if it is warranted she will have surgery in Hackensack because we'll find another surgeon.

We have an appointment for the braces on the 30th. The hip abductor would have to be worn at night when she's sleeping.

Last week we also ended up in the ER for 6 1/2 hours. She was having trouble with her g-tube. We had no idea that children out grow these things. Yes of course it makes sense but unless you think about it, we never thought about it. Yes in the past 4 years we have changed the tube many many times. I've become quite the pro at it but it's always been the same size 14 french 1.7cm in length. We've been to the GI doc and they knew the size was the same and then all of a sudden we started having trouble. The last tube I changed, every time I tried to inflate the balloon blood was coming out around the tube. Finally a large clot came out and it stopped. I was freaked and the called GI. Of course our doc is away and the covering doc said it was normal to have blood. I then explained that we don't get any gas when we vent her, and fluid will leak out around the site, more then usual. The gas thing was key because I can hear it in her belly but couldn't get it out. After two days of playing phone tag and my persistence that something was not right they suggested calling the surgeon that put the tube in. So we did and got in to see him right away. We'll when he measured for a tube, she actually needs a 3.7cm. Of course then we feel like idiots because we had no idea and they look at us like Duh. So I begged the lady at the medical supply company we use to fed ex a tube to us and we had to meet Dr. Valda in the ER so he could put the new one in. He needed to have x-ray to make sure the tube was in her stomach. Long story we had to wait 6 1/2 hours for about a 15 minute procedure. Oh well, it's working for sure now. We're back to getting gas out of her and not as much leaking.

Let's see what else. We have all had our flu shots and hopefully they will work. As most of you moms out there know we are in the worst months of the year. Trying to keep our kids healthy during this time is not easy. A cold can turn into bronchitis, that can turn into pneumonia and that could be life threatening for Sara especially. My dad has been staying with us and I even insisted he get the flu shot. I told him if he didn't and he got sick he had to leave the house. (he he...) Needless to say he got one this week.

Our Make a Wish Trip is a go for January. I don't know if I mentioned that already. We're very excited. I got a book on Disney and am overwhelmed at the amount of stuff there now. I can't wait to see the park through my children's eyes.

We'll I think that's it. Please continue to keep our friends in your prayers and thanks as always for checking in on us and for singing the guest book.
Big hugs to all.

Thursday, November 1,, 2007 93:49 PM CDT

Alec earned his wings today. Please pray for his family.

October 31, 2007
Happy Halloween:

I know it's been a while but I really haven't had too much to update on. I have a bunch of pictures to update and hopefully I will get to that soon.

Amy turned 7 on the 24th and we had a great party for her with friends and family.

I'm going to the school this afternoon for their Halloween parade. We're gonna go trick or treating briefly after school. We'll be home before dark. The girls are 50's girls with poodle skirts and they look adorable. So far Sara is having a rough day, She's had three seizures already. Hopefully the day will get better.

We got our offical call from Make a Wish and they are working on our Disney trip in January. Yeah! Something so exciting and fun to look forward to.

Please please pray for our friend Alec. His web site is above and his family could really use your prayers. His time is limited.

Take care and I'll update more when I have some time.

Sunday, October 7, 2007 7:49 AM CDT

Wow I didn't realize it had been so long since my lasy update. Yeah... October is here. My absolute favorite time of the year. Get out the sweatshirts and enjoy the foliage. Too bad we're in the middle of a heat wave here. They say it will be back to normal come Tuesday... They had better be right, I'm holding them to it.

Sara is doing well. We're still battling seizures every day and sadly they have become such a part of our lives that we're just used to it. My one girl friend still freaks when Sara has one and I just go through the motions I guess.

The exciting news is her new Zippie Wheel chair was delivered on Friday. Hot pink. She looks so good in it. Gives her all the support she needs. Mommy is just trying to get used to it. Seeing her in an actual wheelchair was a bit hard to swallow. We know it's best for her though. I'm hoping to get some pictures of her in it and I'll post them soon.

She seems to be enjoying school. It's very cute. They send home little projects that Nancy has helped her complete. We are proudly displaying them on the fridge.

We saw the GI doc and everything looks good. She's up to 62 pounds and seems to have leveled off on her gaining. Which is good since we can not cut her feeds or calorie intake any more. The one issue we had with her last G-tube Dr. Kogan thinks could have been a malfunction with the tube itself. I didn't even think of that. Her newest one seems fine. We don't go back until January.

Our next visit is to the Orthopedist in November. I'm sure she's going to need another back brace. She's getting to big for this one and closing it is getting harder.

My father was in the hospital for 7 days. They are thinking he had 3 mini strokes and he also had a slight bought of pneumonia. He's been staying with us for the past week and seems to be doing better. I have to admit that I enjoy having him here. His sugar levels have been better and his spirits are definately up. He's even getting around better. Going up and down the driveway without his walker. He just loves sitting with Sara. Amy gives him a head massage every night, it's hysterical. She's having fun enjoying grandpa. They get singing goofy songs and playing games. Gus is even enjoying the extra person to mooch food off of. Jeff is great and so supportive. Grandpa is welcome to stay as long as he wants.

We'll I think that's it for now. Amy's 7th birthday party is this coming Saturday. We're all looking forward to that. The girls are going to be 50's - 60's girls in poodle skirts and poodle shirts for halloween. We're hoping to get out pumpkin picking soon.

Our Aicardi family is going through some rough times, Last month we lost another Aicardi sister. Please pray for her family. Our other Aicardi sister Katelyn is coming home under hospice care and her mom has had to make some very hard decisions regarding her care. Please continue to pray for her and her comfort.

Thank you as always for checking in on us and signing the guest book. Two more pray requests would be for Christopher and his family. They are making some hard decisions as well. Alec is having good days and bad so if you could remember him as well. Big hugs.

Saturday, September 15, 2007 11:21 AM CDT

Hi everyone:

Quick note this morning. Sara's hemaglobin test was normal. YEAH !! The Prevacid really seems to be helping as well. The mom in me is a bit worried about her g-tube site and we're keeping an eye on it. She has a GI appointment on 10/3 but if necessary I may try and move it up come next week. We'll see how she does over the weekend.

I would like to ask all of you to please pray for one of the Aicardi girls. Her name is Katelyn Bickel and she is in the hospital. Her mom is having to make some tough decisions that all of us Aicardi families may have to face one day. She is on the Aicardi page under meet some of us if you want to put a cute little face to her name. Please keep her in your prayers.

Please continue to pray for our buddy Alec as well. His site is accessible under Sara's freinds.

Thanks
Big hugs and love to you.

Monday, September 10, 2007 5:10 PM CDT

Hi everyone:

Well we're back from our trip to Wildwood. We left last Tuesdau after the girls got home from school and came home on Sunday. We couldn't have asked for better weather. It was absolutely beautiful. The Harely's arrived on Thursday. The Roar to the Shore Harley Davidson gathering. Sara just loves all the noise and excitement. Amy on the other hand thinks they are just too loud. Jeff and I have no worries (at the moment) of her ever running off with a biker dude.

We spent quite a bit of time just relaxing by the pool. Sara even made it in a couple of times and really seemed to love it. I'm sure that weightless feeling is nice for her. We took a day and went in to Cape May, such a beautiful area. I could get used to beach living.

Every night excpet the last we walked the boardwalk. Amy rode all the rides and had a blast. Thankfully daddy's stomach can handle all that. I used to be able too but not anymore. Sara and I sat and did some people watching. I have to admit I had a sentimental moment and started to tear up. We were watching all the siblings and familes having fun riding together and it just got me sad. I wanted so bad for Sara to be able to ride with Amy and laugh and have fun with her. Jeff noticed my teary eyes and knew exactly what I was thinking and said he was thinking the same thing.

Saturday night we hung around the hotel and went down to the beach to fly our kite. Amy flew it all by herself until the string burnt her hand and she let it go. I got a chuckle out of watching daddy run for it. It was the first time we actually got Sara down to the beach. They now have a board walk that walks out onto the sand and we were able to get her out pretty far. She was kicking her feet and swinging her arms just enjoying all the wind in her face. It was a great experience for all of us. Amy even found a nice completely intact sea shell.

So we're home now and right back into the swing of the every day life. Sara is really keeping us on our toes. Having checked in on Mary and her family recently I can so relate to waiting around for the other shoe to fall. I feel like we live on the edge of our seat. When things are going well I'm always looking over my shoulder waiting almost anticipating the next bad time. It sucks. We'll go figure. Sara's seizures seem to be better. Why... we have no idea. Nothing new. She's averaging 2 a day and they have been pretty mild so we are so grateful. I just wish we could figure out what makes it better and what makes it worse. So that said I keep waiting and now it seems to be falling. Before we left for vacation she had some dark residual coming back through her g-tube when I would vent her before a feed. This is unsual because she only gets formula and it's not that color. Having gone through this once before and ending up in the ER to find out it was "old blood" I called the GI docs and asked if we could get a refill on her Zantac. So they called it in and I thought things would get better. On vacation we had a couple of days where there was about 20-30 cc's coming out and it was the color of coke. It was nasty looking. One day we strictly gave her pedialyte thinking maybe she had a bug and that day seemed ok and then the next it was back again. Her formuala is the same, no change there. So I called the GI docs today and explained what was going on. They told me they would like to switch her to Prevacid because its stronger. But they want me to have her Hemaglobin tested. They are mildly concerned that she may have a bleed somewhere. WHAT!!! OK OK I'm trying not to worry but here I go. I can't help it. So tomorrow after school we're headed to Quest Lab and hopefully we'll know within the week. Nadine the nurse told me it usuall only takes about a day to get results. Please pray for her.

As like my friend Kathy (Mary's mom) my faith has not been as strong lately. I struggle daily and it just tears my heart out to see Sara have such a hard time. Will life ever be easy for her? Amy is the best big sister but on vaction I saw a slight change. I have always known that we are going to go through changes with Amy and the way she deals with Sara. I saw for the first time that she was embarrassed and it just killed me. We were in a resturant at the hotel having breakfast and Sara started to get vocal. Jeff and I are very conscience of her getting loud and if she gets too loud one of us takes her out. We know people are out and we don't want to disturb anyone. So Jeff finished his breakfast and took Sara out by the pool. Amy told me after they left that she was upset because she thought that everyone was looking at her and thinking she was making the noise. She said I don't have Aicardi Syndrome Sara does and she was embarrassed. I just felt horrible for her. How do you explain to a six year old the public and their ignorance to someone who is differen't? I tried my best and I hope she understands. I know she is growing up in a unique sitation and she will be a more compassionate person for it. She already is. There are days though when I just want things to be "normal" not for me but for her.

So I've blabbed on for quite a bit and I apologize for being long winded. I'll hopefully post some vacation pictures this week. Take care and please check in on our friends they all need encouragment and support.

Love and hugs
Barbara

Monday, August 20, 2007 4:33 PM CDT

Sara's seizures continue to be a pain, we're just trying to deal with them the best we can. We were able to attend the 2nd Annual Aicardi Benefit Concert this past Saturday. What a great day. The weather couldn't have been any better. It was wonderful to get to meet some other familes with Aicardi girls. Their were three other families there and we got to visit with all of them. Devon's mommy and daddy put so much work into the benefit and I'm anxious to hear how much they raised for the Aicardi Foundation. We were able to get a goup picture at the end of the day that I hope to post. Sara was having a good day and I was thinking to myself how lucky we were to not have any seizures while we were there and bam. She goes into one. Typical, some times I think I jinx her by thinking she's doing well. I know that sounds silly but it just seems that when you say hey were having a good day... she hits with one. The funny thing was I said something to one of the mothers and she completley agreed with me. Anyway it was a great day and were looking forward to continuing the new friendships we made.

I wanted to ask all of you to pray for our little friend Alec. He is now in Hospice care and his family is preparing theselves for what is to come. He is such a sweet little boy that we have been in contact for years now and it's just heart breaking. His page is www.caringbridge.org/sd/alec
I know his family would appreciate your prayers.

Thanks as always. Love and hugs,
Barbara

Wednesday, August 15, 2007 2:37 PM CDT

Hello all:

We'll last Saturday we had Sara's family birthday party. We combined it with a surprise (sort of) 40th party for Jeff as well. It was sooo much fun. We couldn't have asked for more perfect weather. Despite having quite a few seizures which eventually led to Diastat Sara seemed to have a good time as well. I've added some new pictures from the day. We are so blessed to have everyone in our lives and we were just so glad that we could have them together. Family and friends mean so much to us and being surrounded by them and celebrating such a great day for Sara and Jeff was wonderful. So much laughter, I just love that sound. Making Memories !!

I still can't believe she's five already. Time sure has flown by. She has managed to pack a life time of troubles into her 5 short years. As tough as it has been at times we are just grateful to have her here with us. We are truly blessed. She has changed and inspired so many people. It's just amazing.

We finally got our new van on Monday. WOW. It's huge, I've named it Bertha. It's a 2007 Ford E150. It's obviously been converted for Sara. The room inside it is just, wow. We have all been in our glory. Amy loves the fact that she can climb in and not have to climb overtop Sara and get stepped on by me when I'm trying to strap Sara down. Once again we feel blessed that we were able to do this and are so excited. Disney World here we come. Next year that is...

Oh yeah... more exciting news. We had Sara measured for a new Zippie Iris Wheelchair and submitted everything to our insurance company. All the letters, scripts all that stuff and much to my amazement they are going to cover it. YEAH!!! The only thing they will not pay for is the sun canopy but we can do that. What a huge relief. I was all prepared to have to fight for it and bam, they said yes. It will be so much nicer for her. Her Kimba system has been great but she's getting to the point where she's out growing it. It will probably take a few weeks to get everything in but it will be worth the wait.

Now for the not so good news. Her seizures just plain suck. We can't seem to get them under better control. I think the increase in the Zonegram has actually brought on a different seizure. It dosen't last long and goes away with 1-2 swipes of her magnet but she's having quite a few of them. In hind site of where she's been I guess I really should't complain. But, she's my baby and heck I'm going to complain anyway. They suck, they really just suck.

She's got Impatiego (spelling?) again. I'm waiting for a call from Dr. Evans. I'm hoping he'll call something in and not want to see her. We'll see. She has a dentist appointment on Friday and that's about it.

Thanks as always for checking in on us. Please remember to sign the guest book. We love hearing from all of you. Please also continue to pray for Alec and Christopher. Big hugs to everyone.

Saturday, August 4, 2007 10:05 AM CDT

Good Morning:

Hope all is well with everyone. Yesterday was Sara's 5th birthday. So hard to believe or little girl is 5. Wow. She had a nice day. They sure do love her at school. When she came out she had on her hat and all her balloons trailing behind her. She looked so cute. They had some festivites for her and said she seemed to enjoy all the activity. We laid kind of low at home and are planning a party next Saturday. I'm hoping this horrific heat breaks a bit.

Her seizures are bad again. Last night she had 6 and as I type this she is sleeping off Diastat. Dr. Katz had us up her Zonegram and last night was her first dose. I don't know if that's what did it or not. She's been on a roll as of lately and we're trying to figure her out. HA!! He wants us to give the increase until next Wednesday and then call him. The thing is he's going away for two weeks and when he gets back we're going away. We certainly don't want her to keep going the way she is until September. So hopefully we can get this under better control.

We were supposed to go to a graduation party today but won't be going after all. She's been through enough already today and the heat as I mentioned is horrific. We're gonna drop off our stuff and come back home to the AC. We had a terrible storm here last night and lost power... thankfully it came back on by 9:30 this morning.

The Aicardi benefit concert in the park is coming up in two weeks and we are looking forward to attending. It will be nice to get to meet some of the families we have been e-mailing.

Other then the seizures, nothing else is new. We're caught up on doctor appointments except for the dentist next week. This month should be a nice quiet one for us. Her last day of summer school is the 10th and then she gets a break.

Something terrific happened in our hospital friends lives last Saturday. Stefanie got married!!! She was with us during our Hackensack days and she and Sara were buddies. We're so happy and excited for her. You can check out her site from ours. Yeah Stefanie. Please keep some of our friends in your prayers. Mary and her family, Christopher and Alec. Thanks for checking in on us and please also pray for Sara and seizure control. Big hugs.

Wednesday, July 11, 2007 5:21 PM CDT

Where does the time go?

We saw the GI/nutrition doc on July 3rd. She says the dx of hypotholomic obesity makes sense. The Endo doc had suggested cutting her calories some more, if possible. Dr. Kogan said that we absolutely can not cut her calories any more. We have to be very careful with her. You can be over weight and malnourished. I didn't know that. Sara is not malnourished by any means and we certainly don't want that to happen either. So we stay the course we are on with the pediasure and her protein supplement. She only gained just shy of two pounds since her last visit. Dr. Kogan was ok with that. We go back again in the fall. If she has only gained a couple of pounds she would be ok with that. If by chance she gains quite a bit more then we would have to go back to the endo doctor and he would have to intervene. With what I'm not really sure. She mentioned sometihing about hormones. I'm just hoping it dosen't come to any of that. I just pray that she levels out and grows into the weight she's at. She's 59 pounds.

She's sitting next to me and I have to brag. She's just so beautiful. I love to just sit and look at her. She gets so excited when you talk to her and she recognizes you. It's the greatest thing. She's such a joy. She's been SOOO vocal lately. To the point where she has made herself hoarse. Now she sounds like Kathleen Turner when she screeches.

She's back to school and in the routine. She'll continue through August 11th. She seems to be doing well and comes home pooped out and I take that as a good sign.

She's still seizing every day. It's a rare occasion now if we get one without any. It's very frustrating and there are days when I just want to cry out. I'm trying to hold on and have faith but there are moments when that just seems impossible. I'm on the list serve for the Aicardi Foundation and everyday there are countless e-mails from famiies going through the same things. It's so heart breaking to hear all these stories about these little girls who are seizing every day and all that they go through in their little lives. It's just so unfair. I feel so connected to these families and would ask that you lift all of them in your prayers. You can connect to the Aicardi page from here and go to meet some of us. They are all beautiful little souls. Precious gifts from above. Since Sara's diagnosis last year, 3 little girls have passed away. What can I say after that? Nothing.

July 16, 2007
Please pray for our friend Alec. You can access his site above.

Monday, June 25, 2007 5:03 PM CDT

Hi everyone:

Quick update today. We got back to the Endo doc last week and he is diagnosing her with hypothalamic obesity. CRAP! He said that for the most part her bloodwork was all normal. Her insulin level was slightly elevated but she had not been fasting for the bloodwork. Even if she had been fasting it was not elevated enough that he would have done anything. He said that he would have to be hard pressed to add any medication to her because she does not have seizure control, not that he needs to add anything. He's just saying she would have to really need it for him to do it. He is suggesting that we get very close with the GI docs to figure out what she absolutely needs calorie wise. If I understand this right when we eat our brains tell us what to store and what to use for energy. Sara's brain is telling her to store everything hence the reason she's gaining so much. She's up to 59 pounds. The obvious concern is if she continues to gain she could develop high blood pressure, high cholesterol and diabetes, all those wonderful things that come with being heavy. We have a GI appointment on July 3rd and I'm very anxious to talk to Dr. Kogan about this new issue. She's just great and has been with Sara since our first stays at Hackensack so we trust her completely. I'll let you know what comes of the appointment.

She goes back to school on Thursday and will be going 4 days a week until August 10th. She'll have off a couple of weeks and then start her new year. We've had some issues with the school and Jeff and I are both very stressed over the whole thing. If I had more energy I would go into it but I just don't. Please pray that the situation rectifies itself for Sara's benefit.

Amy is enjoying summer so far. Thank goodness for blow up pools. What a life saver. She's becoming quite the water rat.

On a personal note I was diagnoised with Lymes Disease on Saturday and it's just reacking havoic with me. There are moments when I hurt so bad I don't know what to do with myself. I know you moms out there can relate. Even when were sick and feel like crying we don't get a day off.

My dad's carotid artery surgery was post poned until July 13th, he has to have a stress test first which is scedhuled for July 3rd. Please continue to pray for him and his health.

Thanks as always for checking on us. Please remember Sara's friends. Love and hugs

Friday, June 15, 2007 3:24 PM CDT

Amy is now a big first grader. I can't believe it. Where did the time go. I swear she grows over night. It just amazes me. She makes Jeff and I so proud. She's so sweet and caring and is really great with Sara. She even alerts me now if Sara is having a seziure and I'm not in the room. Very attentive. We're so blessed.

Sara is done with school for a couple of weeks. She'll go back the end of the month through the first part of August for summer school. Then back again in September for her regular year. They are offering her a longer day since she will no longer be in pre-school. I think it will be good for her if she can get past her nap time. I just don't know what I will do with my time.

We had an appoinment with Dr. Katz today. He's moved into yet another office and I could'nt help but tease him about how he's moved into a grown up building now. Nothing has changed with her meds. He thinks she looks amazing, which yes I must say she does. He has concerns about her weight as well. He's interested to hear what the Endo doc says on Monday. I told him how Dr. Aisenberg (Endo) is leaning to something called Hypothalamic obesity. He agrees that would make sense. She does not process her fat like we do. I put in the same way as a bear storing up for winter. He says if that is the case on Monday after we go over all her blood work than he and Dr. Kogan (GI) and Dr. Aisenberg will have to work closely together to monitor her nutrion, calories and what not. Becuase she is g-tube fed that should be easy to do. The concern is that she could end up developing high blood pressure, diabetes and all those nasty things that come with being over weight. He says it good that we are catching this now and it will be importnant to monitor her and keep her fro getting to that point. Why does that sound eaiser said then done? I'm trying not to worry about what the future could bring for her health wise but hey I'm mom... isn't that my job?

Her seizure count is about the same. She had 57 last month and 8 doses of Diastat. The decrease in the Diastat is a victory in itself so for that I will be grateful and thank God for. Her seizures are starting to take on a differen't look. She's not always throwing herself forward like she ususally does. We've had some so faint that it's all in her eyes and watching her face. Most people would probably miss it but I've seen it and thankfully Dr. Katz saw it today so I'm not imagining it. He's not surprised that they are changing and our hope would be that they don't get worse for her.

All right we'll I gotta go and figure out what Amy and I are going to have for dinner. I'll update more after Monday's appointment. Thanks for checking on us. Big hugs to all of you.

Friday, June 15, 2007 3:24 PM CDT

Sunday, May 27, 2007 6:22 AM CDT

Hello everyone:

Happy Memorial day tomorrow. We hope you are all enjoying nice weather as are we. It's been a bit hot and our air conditioning is on already. I'm hoping it cools off a bit again so we can open everything back up. Even though the house being closed seems to help a bit with the allergies.

We purchased a sunsetter awning, like you see in the tv ads. We are just loving it. If you have ever thought about getting one we highly recommend it. Our deck gets complete sun from about 10ish on and it gets unbearably hot. I rarely get to take Sara out there because it's just too much for her. Since putting up the awning we've been out there just about every day. It's so nice to be able to finally enjoy the deck. Sara seems to really enjoy being out there as well. Especially if the winds gets blowing on her, she gets so excited.

Sara is battling some sort of skin infection at the moment. It started Thursday and at first we thought it was bug bites. She had these welts up around her hair line. We had been outside and the knats are terrible. Then on Friday we noticed that it had spread more into her hair and they had a goey look about them. Knowing the long weekend was coing up and that it was driving her crazy we went to the pediatrician. Unfortunately Dr. Evans was gone for the day so we saw another doctor and he said it's some kind of skin infection. He put her on an antibiotic that she gets every 6 hours around the clock. He also said that he can not 100ule out that it could be chicken pox. Despite getting the vaccine 10f kids still get a mild case. So at this point we really don't know what it is other then an infection and are hoping in 7 days when the medicine is done that it's gone as well. As long as she doesen't start itching it's ok but once she starts look out. Benedryl helps with that though.

We had tried Zyrtec for Sara again and unfortunately it did nothing for her congestion. It didn't seem to effect her seizure wise though so we're waiting to see from Dr. Evans if there is something else we can try. Pollen here is just awful and everyone has been affected. Every morning our table on the deck is green, YUK.

We are in the process of getting Sara a new Zippie Iris wheelchair. We had been given a used one from friends of ours which I think I mentoned in a previous update. We met with the seating company. Unfortunately it will not work for her at this time. It's really an adult chair and would need to be completely re-done. So we opted to get her a new one and save the used one for the future. Unless there is anyone out there that could use it. Please e-mail if you can and I'll give you as much info on it as I can. We are praying that insurance will cover the new one. It's been 4 years since the Kimba system and she has grown substantially. We'll keep our fingers crossed.

Seizures have been so so. We saw a pretty good increase and now we seemed to have leveled back off again. She did have one the other morning and her lips got a little blue. That freaked me out. We need to get back to Hackensack to see Dr. Katz, I've just been waiting until the girls are out of school. Hard to believe school will be out soon. Sara has summer school so she's only off for a little while before she heads back again.

We have follow up visits next month with the Endocrinologist and GI docs. She's put on more weight and I'm really hoping they can help get this under control. She's up to 57 pounds and I'm using muscles I never knew I had to lift her and get her around. The new wheelchair would be ideal because it fits up and down our hallway. The Kimba system she has now is just too big and we can't get it around the hosue. So we're really praying the new one goes through.

So I guess that's about it for now. We'll keep you posted on everything. Please continue to pray for healing for Sara and all her friends. Thanks for checking in on us. Love and hugs to all.

Monday, May 14, 2007 6:21 PM CDT

Hey everyone:

I sure hope that all you mom's had a great day on Sunday. I know I was blessed (thank you Jeff.) No update today... I just wanted to ask you to say a prayer for all the mothers out there that celebrated this year without their babies. No matter how big or small they were when the Lord took them home, I can not begin to imagine their sorrow. I've come to know quite of few of these moms and I know how lucky I am to have my girls. My heart goes out to each and everyone of them. Kiss your babies tonight and thank God for their little lives. No matter what trials and tribulations we may all be facing at this moment at least we still have the ability to go in their rooms at night, kiss their little cheeks and watch them sleep. Let's just be thankful for that.

Tuesday, May 1, 2007 8:46 AM CDT

Hello everyone:

I had no idea it had been so long since my last update.

Thankfully I don't have much to update all of you on. I think.

Sara is still Sara. Her seizures are still coming on a daily basis and we're trying to be patient with the Zonegram introduction. Somedays I think maybe it's helping and then days like this morning I think not. She had three seizures before she left for school at 8:15. I don't know... it's such a guessing game and we hate it.

She's doing fairly well with wearing her glasses. You have to watch her because one second she's fine and the next their gone and your not sure where they went. I think she enjoys making us look around for them.

We're still waiting on all the blood work from the Endo appointment last month. We have a follow up in June. I was hoping to know something before then but I've been told I'm lucky to be getting in so soon. HA!!

We did get very good news that the last Lactic Acid blood level was absolutely normal so there is no reson to pursue the Mito testing. YEAH!!! One less thing to worry about. Now I just have to put it to rest in my head.

Jeff's dad gave us quite a scare. He was admitted to the hospital and had to have his gallbladder removed. What should have been an in an out thing turned into just shy of a week. He's home now and recovering just fine. He's already bored so I guess that's a good thing. We're not used to seeing one of Jeff's parents down and out so that was very hard for all of us, especially Jeff. He's a terrific dad and husband, I don't know what I would do without him. He's a true blessing in my life and has been for the past 16 years. We've been through so much together and I felt terrible that he had to watch his dad go through so much and feel so helpless.

We went to the Abilities Expo over the weekend in Raritan. We just loved it. So much information to take in though... it gets over whelming.

That's it for now. We've calmed down on appointments. I need to make a follow up with Dr. Katz and I think that's about it. We hope this entry finds all of you in good health and wish you happiness. Be back soon. Please continue to pray for all of Sara's friends.

Love and hugs

Friday, April 13, 2007 1:19 PM CDT

Hello everyone:

We hope you all had a nice Easter. We did despite the cold and the snow flurries most of the day. I had hoped to get Sara out hunting eggs this year but it was just to darn cold, hopefully next year.

We had our appointment with the Endocrinologist. No definite answers like I had hoped. He took quite a bit of blood from her and we�ll have to wait about two months to return to go over all of it. I�m hoping for something other then what he�s thinking it is. Hypothalamic obesity. If I understood him right when we eat food our brain tells us how much to store in our fat reserves and how much to use for energy. Sara�s brain is telling her to store it all. I think this means she is like a bear getting ready to hibernate. The problem is there is not much to do for it. We can work closely with GI and cut her Pediasure back. It�s possible that she needs very little and then we would have to make sure she is getting fluids so she does not dehydrate. The last time we were at GI they did cut her back and said they really could not do anymore. Maybe that will change if this becomes the diagnosis. I know some of you moms out there will understand when I hope something else comes back. Something that we can manage and work with. I hate the fact that everything we get is hard to control and we end up having no control over anything. It�s very hard as a parent to just sit on your hands and let this crap just keep coming at your child. We�re still struggling with the seizures. She�s averaging 4-5 a day again with the help of Diastat. They seem to be changing a bit and now she gets this horrified look on her face and that just crushes me. I hate to think that she looks at me like make this go away and once again I can�t. We�re giving the Zonegran some more time and then we�ll have to go back and see Dr. Katz.

She got new glasses this week. They are very cute and so far she seems to be tolerating these a bit better. I say that and she throws them across the room. She�s a stinker. I thought it was great news at the eye docs. Her prescription changed for the better. The bad eye significantly. Dr. Kitei warned me not to get excited because she is never going to see out of that eye and my response was I�m her mom and it�s my job to get excited. So I posted some new pics, they are sliding down her nose a bit so she looks like a little old lady. We don�t have to go back until the end of the year.

We�re waiting on the new Lactic Acid blood work. Hopefully today I�ll hear something.

She�s battling some sinus gunk. She�s been for about 3 weeks now. Another thing that�s hard to deal with because if we give her cold med�s of any kind it throws her seizure meds off and we get more seizures. We�re pretty sure it�s allergies but have been reluctant to test her if medicine is going to make things worse. Kind of a catch 22.

Well I think that�s it for now. We�re coming to the end of spring break and they all go back to school next week. It will be kind of strange around here. I�ve gotten used to having them both home with me again. Hopefully the weather will warm up a bit and we can all get outside for some fresh air. Right now it�s just too cold. Hard to believe it�s spring. Thanks for checking in on us and take care.

Thursday, March 29, 2007 5:59 PM CDT

Please pray for Sara's seizure control. It's been bad again. She's had 8 so far today and 2 doses of Diastat. This is one of our worst days in such a long time. I was just talking to Jeff and we feel like we've been lucky for so long that maybe we shouldn't complain about the rough spot she's going through. But damn it she's our child and I'm going to complain. This just stinks. Dr. Katz wants us to use the Diastat as needed to get her though and give her some time. The Lamictal takes up to 7 days to get out of her system and he wants to hold off on adding anything new until that time. She's just exhausted from all of this. She slept for 3 1/2 hours this afternoon. Normally I would not have let her go that long but my heart just hurts for her and all that she goes through on a daily basis. Please pray that we can come up with another magic combination for her and get some control back.

Please also pray for our friends, Mary, her mommy, Joey, and Nicolle.

Thanks as alwys for your tremendous support and love.

Tuesday, March 28, 2007 4:45 PM

Just got off the phone with Genetics. The Lactic Acid is slightly elevated. More then likely we will repeat it again on the 5th and see what we get with that one.

Also spoke with Dr. Katz again. Yes Seizures are a bit crazy. He wants us tp bear with it for the week. It takes about 5-7 days for the Lamictal to be completely out of her system. So we watch and wait. One of the hardest things for mommy to do.

Tuesday, March 27, 2007
Hi everyone:

We went to see the genetics doc last Thursday. We really like this guy. He�s very genuine. He�s very confident on his diagnosis of Aicardi. I asked about the prognosis for her. He said that all these girls are different (no kidding). The biggest obstacle for them is controlling their seizures. If you have uncontrollable seizures you have a shortened life expectancy. The more you can control their seizures the longer their life would be. Ok.

I asked if we were putting the Mito to rest. He said in all fairness we should test her Lactic Acid levels. If I understand right kids with Mito have high Latic Acids in their blood which effects their energy levels. He did say that you can get false high readings but not false normal readings. So the plan was to get her to Quest have some blood drawn and see what happens. If it comes back high we will re-test next week when we go to Endo and send it to the hospital lab. If that were also to come back high then we would have to proceed with a muscle biopsy. If Lord willing it comes back normal then we put it to rest and don�t think about it anymore. He did also assure us that if needed we could get a muscle biopsy done at Columbia in NYC. He would help to arrange all of it if needed. He is also going to contact the Endo doc before our visit and fill him in on Sara. That way some of the leg work is already done. He also said we could bring her by after our appointment and he would take care of all the blood work that they will more then likely order. That would save us another trip to Quest. I thought that was very nice of them. Saving us a trip anywhere is always appreciated. So we went and had the Amino Acid and seizure med levels done on Friday. I�m hoping to hear something today.

Her seizures have been BAD. Per Dr. Katz we were giving her until last Friday before we did any changes. We�ll I thought maybe we could get through the weekend. Wrong!! I had to page him twice on Saturday. God love this guy. He called back and said to stop the Lamictal. Thankfully we were on such a small dose that we could just stop and not have to go through the weaning off process. We also gave her a boost of Phenobarb. We decided not to start anything else that way if she gets better we will know it was the Lamictal. Guess what. She�s better. She had one yesterday and so far nothing today. I guess Lamictal is not the drug for us. He wants to wait and see what her other levels are and maybe we�ll go back up on the Phenobarb.

We also saw Dr. Laban last week. The battery life on her VNS is good. Thankfully. We tried to increase her amount of stimulation and she immediately started coughing in the office. Every time it went off she coughed. Which means she can�t handle it. So we went back down. She�s still at 1.0 volts but now she gets stimulated every 2 � minutes (instead of 3) and she receives it for 20 seconds (instead of 30). She still receives 1.25 on magnet swipe. We�ll see her again the next time we see Katz.

So that�s it. She�s been very sleepy and I�m not sure what�s up with that. Of course I worry. I�m very anxious to get to the Endo doc. I really hope and pray he has some answers about her weight. I worry about her little body being able to handle so much. I added some new pictures. We painted some eggs and Sara played with the plastic ones. She was so funny. She would throw them all on the floor and Amy would bend over to pick them up. We�ll of course Sara would them reach over and grab a handful of hair and pull. I don�t know what she liked more the eggs, pulling Amy�s hair or listening to Amy laughing. Priceless moments for mommy.

Thanks for checking in on us and I hope to update after the visit on the 5th. Please continue to pray for all of our friends. Joey is still in the hospital. Mary needs her VNS battery replaced. God bless and big hugs from a very appreciative mommy.

Tuesday, March 20, 2007 5:50 PM CDT

Hi there:

Let's see where to begin. Seizures are back and roaring their ugly head. We started the Lamictal and I know I need to be patient but so far Im not impressed. I e-mailed Dr. Katz and he wants us to give her until Friday before we do anything. What that will be though I don't know. I'll let you know.

She had her appointment with the orthopedist. He thinks the back brace and AFO's looks and fit great. An x-ray of her spine showed how much striaghter she is when she's wearing it. The goal is to wear the back brace as much as possible. Right now she sleeps in it. It goes to school with her and she uses it during most of the time. In her gait trainer, stander and if she rolling on the floor. She can't wear it in her stroller system and he's fine with that because she gets support from the system. He said as long as she's not sitting in a chair with support we should try and get it on her. Eaiser said then done. It's very cumbersome and makes moving her difficult. Were trying. If she's in her stander at home she has it on and she looks great. I'm just thrilled that she tolerates it while she's sleeping. The AFO's (ankle foot orthotics) she only needs to wear when she's in her gait trainer or her stander. We go back to see him in September.

We saw the GI doc. We cut her back by 30 cc's on her first feed of the day but are supplementing Beneprotein with 3 oz of water so she is still getting the protein and fluid that she needs. She's a bit concerend about her weight as well and is glad that we are going to see the Endo doc in a couple of weeks. She thinks it could possibly be hormonal.

We never actually got to see Dr. Katz due to the storms. We sat in the office and he was detoured twice and we ran out of time for Jeff to go to work so we had to leave. We've been chatting on the phone. Like I said we started the Lamictal and are waiting for it to kick in. She's on a small dose, 5mg once a day. I know we have to start slow it's just frustrating to see the seizures coming back again and coming back so strong.

We go to the genecits doc and the VNS doc on Thursday so I'll have to get back on that one. Eye appoinment is next month. Glasses are definatley getting too small, leave little riges on her nose.

Make a Wish was canceled and moved to next month. Which is not an issue since we don't plan on going until January. Can't wait to see Mickey.

Please pray for our friend Joey, he's in the hospital and has been ther for I think it's 18-19 days now. He was in a coma and is awake now but having issues. Please stop by and offer some prayers. His link is under Sara's friends.

Please also pray for Elena and Tabby. They are battling the seizure monster and need your prayers. Their sites are above as well.

I'm not sure how often I have asked for prayers for myself but I'm coming to you today to ask. I had Sara's baby book out the other day looking up her birth weight ( I was drawing a blank.) Anyway I was looking through it and yes it's just an ordinary baby book. What struck me was all the blank spaces. Nothing has been filled in for the first time crawling, first steps, favorite food, first words, first giggles... All those firsts that we have not experienced and may never. That's a hard word to say. We may never, never fill in those spaces. It was just devastating to me. I stood in the kitchen crying. All those things I want for her. Grieveing for the childhood that she will never have. It's so hard at times to grasp all of this. I know the Lord has plans for her and I Know HE is in control and I have put my trust in HIM. That said she is still my little girl and it just hurts. I have a hard time telling all of you this. I had added this to the journal last night and then the this morning I deleted it. I then checked her guestbook and saw Riley's mom had signed in and that it had touched her and she understood what I was feeling. That said I decided to add it back in hoping that if there is another mother out there feeling the same way that she will know she's not alone. We are here. Mom's/sisters in this sorority. Thank you Nikki.

Please pray for Sara and that we can get a hold of her seizures Please also pray for the wieght issue we're trying to figure out. It's becoming quite a concern for me. I'm worried.

Thanks as always for checking in on us. Big hugs to you.

Saturday, February 24, 2007 8:24 AM CST

Hello everyone:

It's been a while since my last update and quite a bit has been going on. We hope all of you had a nice Valentines Day. We didn't do anything special but it was a nice day.

We were finally able to get Sara's new brace for her scoliosis. This one is much better then the older one. Even though it looks almost the same it's softer for her. She is currently wearing it when she sleeps and knock on wood she really seems to like it. Oddly enough she is sleeping better. I hate to say that becuase it will bite me in the butt. She loves to be snuggled in really tight so I think that's why she likes the brace. She's also wearing it when she's in her stander. It really helps her. She's obviously nice and straight, no slumping over. She must like it in there as well because she dosen't complain until she's had enough. She lasts about 45-60 minutes. She also got her new AFO (Ankle foot Orthotics). She uses these for the stander and the gait trainer at school. While we were at the Orthotist office I asked them about shoes. We always have a problem finding shoes to go over the AFO's and she showed me some that we could order that are specialy made for the AFO's. So we ordered a pair. They are so cute. She finally has a pair of little girl sneakers. She can wear them with the AFO's and then we just add some liners and she can wear them without the AFO's as well. Sometimes little things like sneakers can make mommy's day. I know goofy. We have a follow up appointment with the orthopedist on Tuesday. He wanted to see her in the brace and then he will let us know how much she should be wearing it and what our goals are. The hard thing is she will not fit in her Kimba system wearing it. The vest that buckles around her chest is a bit tight. I'm going to go on line and see if I can get the next size up. But, I want to wait and see what the orthopedist has to say. If he does not want her wearing it all day then there would be no need at the time for the bigger vest. Did that make sense?

We have a follow up as well with Dr. Katz on Tuesday. She is just about off of the Depakote and man have we seen an increase in her seizures. I knew we would see a flutter of them but this is getting ridiculous. We're still not having to use as much Diastat but we have had to dip into the supply more then we were. So this continued increase makes me wonder if Depakote was actually helping. Such a darn guessing game. We're supposed to start Lamicital next. The rash that can come with a reaction to this med scares the heck out of me so we'll have to keep a close eye on her, closer then we already do :o) We got the results of her Mito blood test and it was NEGATIVE. Thank God ! We are going to leave this in Dr. Katz's hand. We've heard so many differen't opinions on the most accurate way to test for Mito that we really don't know what to do. If he thinks it's worth pursuing in Atlanta then ok, if he thinks and BELIEVES that it's not and we go with the negative result then that's what we're going to do. We hope that everyone can understand that decision. We've had to make so many tough, heart breaking decsions for her in her 4 years that we just don't feel we have the knowledge to make this one so we're looking to him.

Since our last visit with the GI docs the calorie cut back has not seemed to affect her. For some strange reason though, she feels heavier to me. I don't know how that could be possible and I'm afraid to weigh her. We received a call the other day from the GI docs and they want us to repeat her lab work within the next week. Her AFT and LFT were elevated which I was told has to do with her liver. I'm not at all surprised at that. Pissed off yes surprised no. Not at the docs at the situation. So we're going to take her next week and do another metabolic work up. We have a follow up with Dr. kogan the first part of next month.

Her weight has me a bit concerned so I'm thankful that I never canceled the Endo appoinment I had made for April. All of her other blood work has been normal so there does not seem to be an obvious reason for the wieght gain. I know that an Endocronologist (?) will do a differn't work up so I'm anxious to meet them in April.

Our genetics appointment was canceled due to weather. We go back to see them the middle of next month along with Dr. Laban for a VNS check.

Still fighting with the glasses. I'm starting to think that they are just getting to be too small for her. We see Dr. Kitei the day after Easter. I may try and move the appointment up a bit.

Our exciting news is that we put in for Sara's Make a Wish. After being given the Aicardi Diagnosis and knowing in our hearts that she may never have the ability to pick her own wish we decided to go forward with it. I was so glad that some of our friends on caringbridge have recently been to Disney and was so interested to hear about their experiences. They loved it and it was wonderful for the kids. So needless to say we chose Disney World. I received a call yesterday from Make A Wish and they are going to grant the wish. The women, Michelle was so nice on the phone. I threw her off a bit because we are on of her first familes to say that we didn't want to fly. We would prefer to drive. Crazy to some, I know. Lots of reasons. I worry about her on the plane and the cabin pressure. How does she pop her ears if she has to? I don't want to dope her up on Benedryl either. We would have to bring her in her Kimba stroller which would have to get checked. What if it gets lost? We would then have to bring her special car seat as well for the plane ride. Not to mention all her meds and her case of formula for the week. Plus luggage. It just seems like an overwhelming amount of stuff to have to try and get on a plane. Jeff and I both enjoy driving and feel it would just be eaiser for US. We would leave a couple days ahead of time and just schedule that into our trip. Michelle and another women are coming out to the house on March 10th to go over everything with us and fill out necessary paper work. We have plenty of time because we have not requested the trip until January. You can only imagine how excited we are. Especially me. I have such a hard time keeping stuff like this in. Amy sees comercials and is always saying how she wants to go there and it's killing me not to scream WE ARE !! So we may regret it but she wil be at the meeting as well and as of March 10th she'll know we're going. We'll have to start a count down calender because she will be asking everyday when we're going. This may work to my advantage though. Instead of saying Santa is watching I can now say Mickey Mouse is watching you :o) When I was younger our family made 3 road trips to Florida. They were great family vacations despite the two days in the car. I'm looking forward to seeing the "Pedro says your 15 miles from South of the Border." "Pedro Says you just passed the South of the Border." In honor of our family trips I have warned Jeff that I'll have to get a CD of the Who. We need Magic Bus and Momma's Got A Squeezebox. Brian and my father can understand that one. Thank God for memories. I was a lucky kid!

We are starting to look around at new strollers. I would love to get some input from other parents on what they use. We need a "bus transport" one. That means it's crash tested and can be strapped down in either a bus (which we don't use yet) but mostly for transporting her in our van. Her Kimba Mobility system has been great but I would like one that is a bit higher off the ground. It's very hard on the back when you have to bend down and pick her in and out of it. We also have no idea if we should start looking at a child size wheel chair instead. Can anyone help with suggestions?

Whew... I think that's it. I'm pooped out. As always thanks for checking in on us. Please join me in continuing to pray for the troubled individual that continues to leave sexual spam in Sara and other caringbridge guest books. I have contacted Caring bridge about this and am waiting a reply on what we can do to avoid it without having to password protect her site.

Monday, January 29, 2007 5:43 PM CST

Hi everyone:

Yesterday we were able to participate in something so amazing. I was asked to speak in our church along with another family about what our special needs children have taught us. It was so great. I was extremely nervous but as I was speaking and could really look at the faces looking at me I could see that they were getting it. I had a hard time hiding my emotions and so did many of them. After the service so many people had encouraging words to share and many of them just said Thank you. What a powerful word that can be. We believe that God has grand plans for Sara and sharing her story with others was just part of that plan. Thank you Pastor Barry for allowing us to have that opportunity.

We went to the GI docs last week. They are cutting her calorie intake by 10%. She's gained 10 pounds in a year and 6 pounds since they last saw her. It really does not make sense, She's on a limited diet as is. She only get Pediasure with fiber. She does not take much of anything by mouth just mere tastes of some stuff. Which sometimes I feel is more for me then her, if that makes sense. They also ordered some blood work, a metabolic panel. So we'll see if anything else is going on to explain the weight gain. We're going to try and get that done this week, I have to call Quest in Hackettstown and see when the "good" sticker is there.

We're still waiting on the Mito blood work results. I spoke with genetics on Friday, they spoke with Quest and they anticiapte it being another 2 weeks. UGH !! I really need patience. We go back to see them on Valentines day so hopefully we will have everything by then.

I'm in the process of getting hooked up with the Aicardi foundation and plan to reach out to some familes. These girls have been through so much. There is a benefit function during the summer in Denville and we are planning to attend. According to the webpage last year there were two other little girls in attendance that live in Jersey. We would love to connect with them.

Thank you for checking in on us and for sigining the guestbook. Please excuse mt lashing out at the individual that has left explicit webpage links in our guestbook. This apparently has happened to other families as well. I find it so disturbing that someone would do such a thing to an innocent child. I would ask that you pray for this individuals soul. It's obvious that Satan has a strong hold on this person. Thanks. Big hugs.

Thursday, January 18, 2007 4:53 PM CST

Hello everyone:

We had an appointment with Dr. Katz yesterday. We haven't seen him since the Acardi diagnosis and I was very interested to hear what he was going to say. He said that he had a conversation with Dr. Wallerstein (genetics doc) and that he agrees with the diagnosis. He says it's so rare to have all of the characteristics and that if you have all of them well that's a poistive dx. So now what? Not much we can do other then give her the same treatment that she has already been given. There is no known cure. The course of action we have been taking all along with her has been the right course. He feels we've made all the right decisions and that she has had very good quality care. So we continue. Prognosis... We don't know, all these girls are effected so differently that it depends on the child. We were given information that told us the average lifespan is 8-18 years of age. What are we supposed to do with that information? Trying to process it but having a hard time grasping it. I don't want to sound cliche but life has taken on a new meaning to us.

It seems that the key thing with the syndrome is trying to effectively control their seizures. After talking with Dr. Katz we've decided to try a new medication (to us) Lamicital. Apparently Depakote and Lamicital don't mix well so we have to come off the Depakote first. We started weaning off it this morning, it'll take about 6 weeks and then we'll start the new one. We anticipate a flurry of seizure activity, that's what usually happens when we come off a drug. She seemed to have a slight increase recently and we think maybe that had to do with the slight decrease in Phenobarb because her blood level was too high.

At the moment she's very irratable and I'm not sure whats going on. I was down and out for a couple of days last week. Nasty stomach bug and I'm just hoping she's not starting with something like that. She seems to have a lot of gas.

We're still waiting for some more blood resulats and I feel like we're sitting on pins and needles. I really need to learn patience. Jeff and I have not told our parents yet about the Aicardi. We know we have to sit down with them but we're not ready I guess. I don't know. What do you say?

That's it for now. As always please continue to pray for all our little friends. Taylor is doing better at home and even giving her parents some wonderful smiles. Yeah Tay Tay!! Alec is on his Make a Wish Trip to Disney. He spent one day in the hospital but thankfully he is out and having a great time. Make a Wish was kind enough to extend their trip to make up for the lost day. Thanks as always for checking in on us and leaving your messages. We really appreciate your kindness and friendship.

Hugs
Barbara

Tuesday, January 2, 2007 8:40 PM

Just wanted to update. I got a call this morning from Dr. Kitei (eye doc). He had received a letter from the genetics doc questioning her eye exams. He wanted to make sure that it was all right to speak with them and also wanted to let us know that he feels that they are right on track with the diagnosis of Aicardi Syndrome. He said that she does have Retina colombma and choriorential lacunae. Which is one of the disease characteristics that they were waiting to hear about.

Later tonight I got another call from the genetics office. After speaking with Dr. Kitei this morning they are in agreement that it's Aicardi Syndrome. There is not definitive test for the syndome but you must have all 3 of the disease characteristics. 1. Agenesis of the corpus callosum (yes) 2. distinctive chorioretinal lacunae (yes) and 3rd infantile spasms (yes). That would be a positive diagnosis. I made a follow up visit with them for the 25th of this month. They should have all the results from her blood work by then.

I did not call Shoffner's office today. We have decided to wait and see what the outcome of all the bloodwork will be. We will be looking to Dr. Wallenstien for direction.

Monday, January, 1, 2007 6:50 PM
Happy New Year Everyone:

We'll it seems like everyone is on the mend. Amy is doing well. Sara is getting back to herself and daddy even seems to be a bit spunkier. All good for the new year.

We hope all of you enjoyed Christmas. We had a great day. Amy was very excited this year. She came down the hall and screamed. Sara on the other hand could really give a hoot. She actually fell asleep during her morning feed in her chair and slept through all the gift opening. We enjoyed being able to get together with all our famiiy. I posted a couple of pictures from the day.

We went to meet the genetics doc in Hackensack on the 28th. Very interesting appointment. This guy is super nice and very knowledgable. We of course went through her medical history and all that stuff. He immediately is thinking of a syndrome call "Aicardi Syndrome." It's a very rare genetic disorder and basically sounds like Sara in a nut shell from conception on. I've added the web page below so you can read about it if your interested. It only effects girls. There is no known cure other then the treatment she alreay receives through her docs. Survival is highly variable, with the mean age of death about 8.3 years and the median age of death about 18.5 years.

Certainly not the thing you want to read. Dr. Wallerstein was going to put a call into Dr. Kitei Sara eye doc. One of the major disease characterisitcs can be her retinal coloboma but he wanted to discuss this with him. We won't know for sure until he gets all the blood work back which should take about 4 weeks. He also is thinking of some other things so needless to say they took quite a bit of blood from her. Even though we had an amnio done during our pregnancy and her chromosones were normal he says they can stretch them and test them more. Not sure what that means. He also ran levels on her seizure meds since we were poking her. So we wait.

Jeff and I want to beleive that she does not have Aicardi Syndrome or any other syndrome but it's a fact that she could and it's something he and I are going to have to get our minds around. It was a tough visit. I was hoping to have him look at her and smile and say nah, she's going to be fine. Instead he looked at her a bit concerned and started rambling. We mentioned Mito to him and he agreed and said that he could understand why we would question that. I have the number for Shoffners office and I'm going to call tomorrow. I figured what would it hurt to get the ball rolling. Jeff has vacation in July and we are crossing our fingers that maybe we could schedule something during that time. From what I hear from other families he is swamped so I guess we'll have to see. If something if very definite from Dr. Wallenstein and he says there is no need for the Mito then it would be easier to stop everything then sitting here and waiting to get started.

Frday we got a call from Dr. Katz's office. They had received a call from Dr. Wallerstein that Sara's Phenobarb level was too high so we had to back her down by 15mg. So far it seems to be ok. She's been so HAPPY lately. She looks at you and gives you such a great smile... It's awesome. It makes me giggle everytime. She's such a tough little cookie. I was going through her medical history a little while ago and it just amazes me how much she's been though. So much time in the hospital, so many tests, so many surgeries. How can one little body go through so much?

Ok, ok, ok... enough of that. Tomorrow everyone goes back to school. Amy can't wait. She cried this morning because she thought she was going today. Man I hope she always love school this much. I've enjoyed having both of them home. Especially the rare couple of days when we were able to stay in our jammies and watch the new movies Amy got. The rest of this week is pretty quiet for us. She goes for her brace fitting next week and I'm pretty sure we have a GI appointment coming up as well along with a neuro follow up.

Please pray for our friend Taylor, Her site is marked above. She's in the hospital and seems to be on the mend but your prayers would be appreciated. She's a little cutie. Please continue to pray for Morgan's family as well.

Thanks as always for checking in on us and I'll update when I know some more. Love and hugs
Barbara

Tuesday, December 19, 2006 3:05 PM CST

We'll never a dull moment in this house.

Last week Amy was sick. She missed just about the whole week of school. She was running high fevers, coughing, vomiting and just plane down and out. She was due for her flu shot and I guess she really didn't want to get it because she got sick first. We were at the pediatricin's office twice. The second time we left with a prescription and she was treated for sinus infection. One dose of medication and thankfully a new child emerged. She made it back to school last Friday but unfortunately she had already missed her HOLIDAY party.

Sunday Sara started with a fever and major congestion. She was really struggling to get any air through her nose and since her tonsils were removed she avoids mouth breathing. So she was just a mess. Monday morning we went to the pediatricins office and sure enough she has a blaring ear infection and a sinus infection. Last night was rough. She was up just about the whole night. Coughing and gagging. She's not sure what to do with the mucus and then she gets choking. Thankfully Jeff stayed up with her when he got home and I don't think I moved once in bed. She slept just about half the day away today and she seems to be coming around now. She's on Omnicef and it makes her very gassy and gives her the poops. Graphic I know. We're seeing a seizure increase as well. More frequent and more intense. There are boogers everywhere. Graphic again I know sorry. She had a fever again this morning so she'll be home again tomorrow. She may get back to school on Thursday we'll see. With Christmas coming I really don't want to push her.

Jeff also has been battling this sinus bug. He was on some medication as well. Can't seem to shake it. I can't wait for the continued cold weather to hit and kill all these bacteria floating around. Me, I'm fine. Too busy to get sick. Drinking OJ and finally taking my vitamin, we'll sort of. I don't know why vitamins are so hard to take.

We go to have the brace fitting on Thursday and Amy is scheduled for the flu shot tomorrow. We are going to meet the genetic doc on the 28th and follow up with Katz and the GI docs next month. Jeff and I are still set that we want her to go to Atlanta regardless of what the genetics doc say. The not knowing is too much. So that's us for now.

My dad is going to have Christmas this year. The first one at home since mom passed away. At first I was afraid to do it. Afraid that I would be comparing everything to way she used to do it and that it would make it harder with her not there. After some soul searching, lots of tears and some prayer, I can honestly say that I am so looking forward to it that I feel like a little kid. Yes, it will be differen't but it's a NEW memory. As New moment in time that I will cherish and look back on. From what I hear my brother has something in store for us. He's always good for a laugh and that's something we all could use in our lives. Laughter. Family, love and laughter. Can't wait.

I'm sure many of you are aware that our dear little friend Morgan will be spending Christmas with Jesus this year. Please continue to lift her family in your prayers. Tomorrow are her services and our hearts are with them. Life is so precious. We all get caught up in the hustle and bustle and the most important things sometimes get over looked. Sometimes the smallest gesture can make someones day. A simple smile can mean the world. You never know, you just never know. There are many times, especially lately when life does not make sense to me. Why do some suffer and others never know that sting? We all have struggles, we all have crosses to bear but why are some crosses heavier then others? Why do we ask why? I don't know. But I do know this. If we put our trust in the one who was born all those years ago we can carry those crosses. It's still hard and its still hurst but we can carry them and sometimes, we can even help carry someones elses. Reach out to those carrying those heavy crosses you may be that miracle they were looking for.

I'm rambling, I apologize. I do hope that all of you are able to surround yourselves with family, love and laughter this blessed season. Just sit back and take it all in. Close your eyes and just listen, it's all around us. We just have to slow down enough to enjoy it. May your stockings be full and your trees be bright. May you all know the love of the one that was born that silent night.

Christmas blessings and love from all of us to all of you.

Wednesday December 20, 2006
We went back to the pediatricin today. The Omnicef is just reaking havoic on her tummy. She's really struggling through her feeds, very gassy and the diareeha is horrific. He changed the med to Zitrhomax and she'll only have to take it for 5 days. I noticed yesterday that her one eye was all bloodshot and just as I was suspecting she has pink eye. She also ruptured some blood vessles under her eye lid from coughing so hard. The poor little button has had a rough couple of days. She's resting in her own bed at the moment and hopefully will have a peaceful night.

Saturday, December 16, 2006 7:06 AM CST

I signed on early this morning to check in on our friend Morgan. She lost her battle to Mito this morning December 16th shortly after midnight. Please continue to pray for her family. Our hearts are so filled with sadness. She was a precious life, a gift from God that was taken too soon. We will miss her.

Thursday, December 7, 2006 1:36 PM CST

Friday, December 15, 2006
Quick update:
We go meet with the genetic doctor on December 28th. We'll see what they have to say. We also meet with a genetic counselor at the same time. Despite the outcome Jeff and I still want to take her to Atlanta. The not knowing for sure is going o drive us nuts.

We are going next Wednesday to have her fitted for another brace. The previous one was way to constricting on her and this one is supposed to be more like a corset. We'll see.

Please continue to pray for Morgan and her family.

May all your Christmas wishes come true this year.

Thursday, December 7, 2006
I feel like I have been walking around in a daze. I have stopped dead in my tracks more then once today completely filled with saddness. Jeff and I both believe that we are all here for a reason. We all have a job to do and duties to fulfill. When you have finished... the Lord calls you home. But, when he gets ready to call another child home. We'll it just tears me up. Our sweet friend Morgan Reynolds is nearing that time. She is home now surrounded by the love of her family and under the care of Hospice. Their family has become such a part of ours, we feel so connected to them. It's heartbreaking. In my head there are moments when these things make sense. No more pain, no more struggling, no more poking and proding, just the eternal peace and love of a new life in a new body with our Heavenly father. But then my hearts emotions flood through me and think no no no. He can't do this. She is so innocent and precious and the world is full of nasty sinful people who live to be 100 years old without a health concern. How is that fair? I guess that's what faith is all about. Holding onto something and believing in something so much that it will carry you through these very sad times.
Please lift them up in prayer. Pray for her comfort and peace for her family. May they all feel HIS loving arms around them at this time.
Her site is marked above.
Barbara

Tuesday, December 5, 2006 7:22 PM CST

Hi there:

We'll the unseasonable warm weather here in Jersey has disappeared and we are finally feeling like Winter. I have to admit that I was ready. It was a bit confusing to be in a short sleeve shirt in November and December. Turtle necks now.

We had a nice weekend. Daddy went to West Virginia with his friend Jeff to root for Rutgers in the big game... unfortunately they lost. Oh well, it was a good game and they had a fun time despite both of them being sick with nasty colds and puberty sounding voices. Ha. We like to tease daddy when he squeaks. It's going away now.

We ventured out to the mall on Sunday. Bad idea. What a zoo. Didn't get much shopping done. But we did get a picture with Santa. The first one ever. Amy was excited to do it this year and Sara was a trooper. Santa was very nice and understanding.

The girls and I went out yesterday during the day and what a difference. Not many people out at that time. We think we are done now. I'm not 100% sure I need to check everything over. But I think we are.

Sara had her 4 year well child check up on Monday. Four shots, Polio, MMR, DT, No Pertussis and the Flu shot. Pertussis has seizure side effects so she's never gotten that one. She was great. It goes to show how much shes been through in her little life when she barely flinches. Little wimper and that was it. Dr. Evans did her exam and said that he really feels there is NO Breast tissue developing. He says you would feel a small lump in there or the outer area would start to look differen't. Unfortunatley she is just chubby. So he does not think we need to see the Endrocrinologist. I emailed Dr. Katz anyway to see if there was another reason he wanted her to see one but I have not heard from him yet. She has gained 10 pounds in one year. She's up to 55 pounds and I can tell. She's getting hard for me to handle. It's amazing how we find our strength though. I struggle with the dog food bag yet I can toss her up on my shoulder like it's nothing. Dr. Evans is not too concerned about the weight due to the fact that ever since she was on the steriod she has been above average in her growth. I do remember Dr. Kogan (GI doc) not wanting her to gain so much so I have placed a call into her just to make her aware. We need to follow up with her anyway.

I called the genetics docs and I'm waiting for a call back. Trying to schedule appointments can get very overwhelming. I need an appointment to make appointments!! Seems like all you can get are voice mail boxes. I'm going to try again tomorrow maybe we got lost in the shuffle.

Her seizures are about the same. Diastat use is still down but we do use that VNS. Which reminds me we need to get back to see Dr. Laban for a check on that too.

That's about it for us for now. I've added some new freinds to our list. I would ask that you please continue to pray for Morgan. Stop by her site and leave some encouraging words. She is really struggling. Their family has become a part of our family and they mean so much to us. My heart just breaks for them. I was able to talk to Leslie last week and she is just a remarkable women. So full of strength and faith and I feel blessed to have crossed paths with their precious little one.

Please also stop by Elena's page. They just found out that she has Mito. Her family too has amazing faith and are relying on God.

Christopher is home but could use your continued prayers for healing.

Thank you as always for stopping by to check on us. All of you are a blessing to us. We have met so many wonderful families and strong determined little children. Our God is good and he is mighty and powerful. We hope you will join us in praying for a Christmas miracle for all of our friends.

Hugs
Barbara

Wednesday, November 29, 2006 5:45 PM CST

Hi Everyone:

We hope you had a terrific Thanksgiving. We sure did. It was nice to just STAY HOME. I actually had fun cooking this year. We had all the trimmings and way too much. Sara had a good day despite a wicked diaper blow out. No need to eleborate on that one. She enjoyed just hanging out.

We're all decked out for Christmas here already. It's been a tradition to put the tree up the day after thanksgiving and that's what we did. I just love this time of year. Gus just got his Santa's hat in the mail today so hopefully we'll get some holiday pictures done this weekend. I know goofy but hey you gotta have some fun.

I literally just got off the phone with Dr. Katz. I'm really confused and a bit frustrated. I finally got a hold of him to ask what I should do next about the Mito testing. This is what he is suggesting. We have never had Sara genetically tested and he thinks we should start there. He says because she has an undiagnosed cerebral dysmorphism (spelling?) her cortical dysplasia and intractible epilepsy, blah blah blah. We should look at her chromosones (not sure what that means) anyway he is strongly suggesting we do that first. Have her seen by a genetics doctor here in New Jersey and also have her seen by an Endrocronologist. See what they have to say FIRST and what the results are and then talk about the Mito testing again. His words were "do what we can here in Jersey first before you trek to Atlanta." He's still interested in getting her tested for Mito AFTER we do what we can here. It's easier on all of us especially Sara. Due to the fact that we have complete faith in Dr. Katz and truly believe that he has Sara's best interest at heart that's what were going to do. Tomorrow I'll try and get her scheduled with these people hopefully before the end of the year and we'll go from there.

I don't know, now I just feel confused. I understand what he's saying and it all makes sense. It's just hard to hear Mito testing and then wait and do this first. I have to admit that at our last visit when he said yes to the Mito testing that my mind went completely blank so I can't really know for sure what was said, other then blah blah blah. His mouth was moving and my mind was blank. So, we go from here. I'll let you know.

Please pray for Sara's friend Morgan. Her site is listed above. She is in the hospital and her little body is really trying hard to fight this terrible disease called Mito. Christopher is also still in the hospital. Last I had heard he had developed a blood infection and could use your prayers.

Thanks as always for checking in on us. Big hugs.

Sunday, November 19, 2006 2:09 PM CST

Hello everyone:

Sara FINALLY seems to be feeling better. She has been battling a nasty cold since Halloween. She seemed to get worse the past week and we were able to get her some cough medicine, which helped. Really zoned her out but it helped. We only used it for a couple of days. We try to stay away from all that stuff if we can. Additional meds seem to lower her seizure threshold and well we all know what that means. You guessed it... more seizures. So if we can help it we try not to give her anything. She was just plain miserable though and the cough was concerning me so we headed to the peds office and thankfully her lungs were clear but they did give us the Cardec Syrup to help her out.

She had her last horse riding session on Wednesday. She was so zoned out that she could care less but we wanted to get it in. We are on a break until after the holidays. Millie is hoping to start her back up in January. She rides the mechanical horse in the barn (Rainbow) so weather really isn't an issue. (www.spiritfilledriders.org) We are pleased with her progress and are looking forward to starting again. That said mommy is also looking forward to the break. Does that sound terrible of me?.

I have not made the appointments yet with anyone. We have decided to hold off on the genetics doc for a while. Sometime next year we'll get that in. We do want to get to the Endocronologist before the year is over (if possible). I would like to know what's going on with the breast tissue. Dr. Katz gave us a name of someone in Livingston because it's closer to us but I'm going to put a call into his office tomorrow to find out who is in Hackensack. That way we keep everyone in the same area and we can do one then one appointment on any given day.

We heard from the Catastrophic Illness fund and it seems they are in the process of processing our application. We sent it in to them in August and it should be reviewed in January at the next meeting. SIGH !! We have our fingers crossed that the outcome will be a positive one.

So, the Mito testing. (www.umdf.org) Jeff and I have decided that we would like to have her tested. We didn't talk about it for a few days, kind of chewed on it I guess you could say. Each dealing with it in our own way and then we sat down and discussed it. The pros and the cons of testing and knowing. What we kept coming back to is if God forbid she has Mito then we can get her on some meds that may make her more comfortable. If we never test her and we never know what if we could have made things better for her even if only temporary. So we're going to do it. I've been emailing Leslie (Morgan's mom) and she has been so helpful and I am so appreciative. Speaking to a mom that has been there and is doing it is priceless. Sounds like a comercial. But it is. She knows what we are feeling and what we are thinking and the weight of it all. It's hard. We've been trying to put it out of our minds but we just can't. So, what next? I'm not really sure. I'm going to get in touch with Dr. Katz and let him tell me what's next. I know Leslie said it took them 3 months to get it approved by the insurance company so I'm prepared for a battle hopefully won't have one but better prepared I guess. Dr. Katz is always telling us how great he is with insurance so if your reading this Big Guy you may have to prove yourself :o) The one thing Jeff and I also discussed is the possibility of me going to Atlanta with Sara on my own. For the simple reason to try and keep life somewhat normal for Amy. She's endured so much in her 6 short years that we would like to make this easy on her. It sounds like the process takes about 3 nights and we hate to drag her to someones house and leave her. Believe it or not she vividly remembers the upheavel she went through when Sara was struggling in 2003. To this day will even talk about it and all the places she had to go. So, my pal Polly has already volunteered to travel with me. Thanks Pol. Your friendship has truly been heaven sent. Anyway I'm getting ahead of myself. All we know right now is that we would like to move forward with the testing. I'll keep you up to date on how things are going. Obviously this will be next year.

Thanksgiving is this week. Is everyone ready? I'm cooking for us and my dad. Dad your in for a treat :o) In 16 years of marriage I've only cooked one turkey and that was just for us when Sara was on the steriod. Wish me luck. I've been watching "Let's talk turkey" for the past week or so on food network. We're going with Tylers Ultimate Thanksgiving receipes. I already know we'll have way too much food. Better wear elastic pants that day :o) and throw weight watchers out the door.

We have so many things to be thankful for and we hope that all of you can take the time to enjoy the things in your lives that you are thankful for. This is an awesome time of year and we hope that all of you are as blessed as we are. If you have love in your life that's all you need. A friend of mine sent us an awesome video of a father and son. If you have a chance to view it take the time. Grab the tissues and sit back. It's so amazing. Go to cjcphoto.com/can

Anyway, thanks for checking in on us and for keeping our sweet Sara in your prayers. I know I say it alot but your words and notes in our guestbook really make our day. Just knowing that someone is out there can really make a moment in time better. Thanks and big hugs.

Thursday, November 2, 2006 2:08 PM CST

Hey --

We just got back from Hackensack. First thing, we did stop and see Chris and his mom Laurie. Please pray for him tomorrow morning at 7:30 he is going in for more surgery. It was so hard to go in there and see him and his mom and all that they are going through. The memories come flooding back and my heart just aches for them. She mentioned in her journal and to me today that tomorrow will be a "heroic" effort for Dr. Fried. Please please pray that this surgery helps. He's been though to much for a 17 year old boy.

We met with the new pediatric orthopedist and he was very nice. He re-did Sara's x-ray. He mentioned that the previous x-ray was done while she was sitting and really does not give a true measure of her scoliosis. So he did one laying down and thankfully the scoliosis is not as bad as we were originally led to believe. Instead of a 35 degree curve it's actually 23 degrees. Still not good but better then we thought. He would like her to get fitted for another brace. A completely different one then she had before. This one will be more like a corset, not the really hard plastic. The hope is not to fix the curve but to hopefully slow down the progress. We have to go back once we get that done.

We then met with Dr. Katz. No need for any med changes, she has been doing well. Averaging about 20-26 seizures a month and last month she only had... are you ready... 2 doses of Diastat!! I know completely unheard of in this house. So we are thrilled with that. He did say that we should re-schedule the appointment with Dr. Laban and have the VNS checked on. Not turned up but the battery should be checked. So I'll have to do that.

I asked about the fact that she appears to be developing breasts. Is this from the medicine, in particular the Keppra. He said it could be but would like her seen by an Endocronologist (spelling) to make sure that it is the medicine and not pre-mature development. Now the part that is scaring me out of my mind.

I asked again about the Mitochrondial testing. Did he think Sara ahould have it done. He said yes. Even though she is doing so well his reasoning is because of her cortical dysplasia and the intractible epilepsy. He said we should think about it. She should also be seen by a genetics doctor to find out if any of her problems are genetic related. Which we should know for Amy's future and our own. I'm ok with that it's the Mito testing that completely scares me. My friend just asked me about who will pay for the trip to Atlanta and all that and my response was that none of that matters. Its the result of the testing that I'm concerend about. I know that there are many of you moms out there reading this right now that know what I'm feeling and it just horrifies me. I really didn't think we were going to go down this road and now he wants us to start thinking about it and I'm scared. I don't know what else to say other then I'm scared. I haven't been able to talk to Jeff about it yet and I feel like I'm pacing the floor and I could jump out of my skin. I look at her and think how do we get up the nerve to test her? How do we think about anything else now other then testing her? I don't know if as her mom I'm strong enough. I'm scared.

If I get through the rest of the afternoon without eating all the candy in the house it will be nothing short of a miracle.

The crown in Amy's tooth came out today so she has to go to the dentist tomorrow morning ( never a dull moment) and then Jeff and I are getting flu shots. The girls get theirs next month unless we can get them in sooner this month. We are going to the Tall Cedars Benefit Ball on Saturday night. It will be the first one Sara is going to since they honored her 3 years ago. I'm excited for everyone to see her. Amy and I are going to a baby shower together on Sunday. The little girl that was in our wedding is now married nad having a baby. Really makes me feel like an old lady.

Thank you for checking in on us and for keeping our family in your prayers as well as our friends. We absolutely love your messages and pictures that you post in our guestbook. Thank you.

Love and hugs
Barbara

Wednesday, November 1, 2006 12:36 AM CST

Hi everyone:

Just stopping by to update Halloween pictures. We had two cheerleaders and one football player. Sara's costume was a day before change. She was going to be blues clues but it was so unseasonably warm here that I had to run out and look for something else. I just so happened to find this cute little Tennesse costume in a consignment shop and it went perfect with our little theme. We had a great day.

Tomorrow we go to Hackensack so I'll update more. Please continue to pray for Christopher. Morgan is home but could still use some prayers. Thanks for checking on us. We're off to riding therapy as soon as Sara gets home from school.

Hugs

Thursday, October 26, 2006 3:02 PM CDT

Hi everyone:

Nothing new to really update on. Sara is doing ok. We can see that she is definately getting stronger. Sitting on her own much better. I think that her horse lessons are really helping her. The instructor thinks she progressing very well and showing signs of improvment. We're seeing some more seizure activity and not really sure why. Don't know if she has something brewing in her system. We go next week to see Dr. Katz and meet the new pediatric orthopedist so I'll update more after that. I do not anticipate any med changes but you never know. We'll probably discuss the botox injection again. Of course she has been VERY tight lately. She really likes to keep us on our toes.

Please continue to pray for our friend Christopher. He's still in the hospital. We're going to stop by and visit him next week if he's still there. Please also pray for our friend Morgan. You can access her site under Sara's friends. She's in the hospital and really needs us to flood heaven for her.

Thanks for checking on us and as always your messages in the guestbook mean so much.

Hugs
Barbara

Saturday, October 21, 2006 11:35 AM CDT

Exciting News !!!

The twins have arrived. They are 3 weeks early. Luke weighed in at 5 lbs even and Jake was 6.6 lbs. So far so good. Praise God.

Please continue to pray for our friend Christopher. He is still in the hospital and they will be discussing the possibility of more surgery tomorrow with the surgeon.

www.caringbridge.org/ny/christophersjourney

Monday, October 16, 2006 8:00 PM CDT

Hi everyone:

We had the big birthday party this weekend. We really lucked out with the weather. Despite being a bit chilly and windy it was absolutely beautiful. Amy had a blast, it was great to see her having so much fun. Sara was a trooper. She had a seizure in the morning and Jeff and I were thinking here we go. It never fails when we have a party she has back to back seizures all day. We have no idea why, maybe the stress of the day. Anyway we were ready for it and thank the Lord she never had another one all day. She NEVER napped all day either and by the time the party was over, actually before you could just see the little bugger was exhausted. I really think it was a great day. Jeff and I thoroughly enjoyed ourselves and thank everyone for coming and celebrating the girls with us.

The next day we went to a local farm and picked pumpkins. We got there early enough to beat the crowd and we had a so much fun. Amy and daddy we determined to find the perfect pumpkin and we're pretty sure they did. Sara was happy to be out in the fresh air. We had a bit of trouble with the van as we were leaving. Something is going on with the ramp. Too technical for me all I know is that the door would open and then close without the ramp ever coming out. Thankfully Jeff fixed it but we agree that it's just a temporary fix. It's gonna have to go back to the dealer.
Our friends Denise and Rick came over for a visit along with their son Nicholas. We haven't seen them in such a long time and it was so nice to sit and chat and catch up on everything. Amy and Nicholas seemed to get along and played great together. Sara napped for about three hours. We think she was still pooped from the day before combined with the fresh air from pumpkin picking.

The week of the party we went to see the eye doctor and had a great report from him. Sara's vision is good, well good for Sara. Her left eye has always drifted out. If you are looking at her at times you can see her left eye just go off to the side. We'll they have been patching her eye at school and it's obviously paying off. Now her right eye is going out. Which you would think would be a bad thing but it's not. It's actually a great thing. It means that her left eye is now working at focusing and it shows that her brain is healing. I don;t know if that made any sense all I know is we were thrilled with the report. So we go back in six months.

Next month we follow up with EVERYBODY so we'll have many more updates.

We haven't heard momma since that day but I'm ok with that. I know what Amy and I heard once and if that's all I get then I'm thankful to have gotten that. He has truly blessed our family and as each day passes I see it more and more.

The Lord has been moving in my life recently. I'm learning to not let the issues of the world and the "Stuff" get to me anymore and by "stuff" I mean every kind of "stuff." What matters is right here in this house and the people that I love and care about. I have always tried to please everyone and gain their acceptance and get their approval so to speak and He is showing me that I shouldn't be looking for the acceptance of the world but that I should be looking to Him. I need to find my self worth in Him not the world around me. I need to keep my eyes focused on Him. I'm learning and I'm still a work in progress. I'm just thankful that He is a patient forgving God. I stumble and fall quite often and He is there to pick me up. Cast your cares on Him and May He pick you up as well.

I did want to ask one favor before I say good night. Please pray for our friend Christopher. We have known Christopher for about 4 years now. We were hospital buddies way back when our journey with Epilepsy started. He's in the hospital and he is really having a hrad time and it dosen't look good. He really needs our prayers and so does his famiy. Please go to his page and offer some words of encouragement. Thank you as always for checking in on us. Your messages in our guestbook and your e-mails mean so much to us and we are so grateful for each and every one of you.

Wednesday, September 20, 2006 8:57 AM CDT

I just had to share with all of you what happened here last night. Sara said "Momma." If I had been alone I would have doubted what I heard but Amy was here with me. It was so amazing and Amy and I went nuts for about 10 minutes.
Here's what happened. We were all on the couch together and we were trying to get Baby first TV on our satelite so the screen was blank and there was no noise in the house. I leaned over Sara to get the phone to call Direct TV and plain as day she said "momma." I sat back looked at Amy who was going nuts screaming she said momma she said momma Sara said momma. To say that it brought tears to my eyes would be an understatement. At almost the exact same time daddy called and Amy was just about jumping out of her skin waiting to tell him what Sara had done. She was so proud.

It was absolutely the sweetest word I ever heard spoken. Thank you Lord it was awesome.

Friday, September 15, 2006 2:42 PM CDT

Hey everyone:

I tried to add a new journal the other day and I don't lnow what happened but I lost it. So I'm trying again. Things have been well so I really don't have much to update on.

We went to horse riding therapy Wednesday and she rode the mechanical horse "Rainbow" and she did great. That is once she gets past the first 5-10 minutes. She's very nosey which is fine but she has to check out everything before she settles in. We really need to work on her trunk control and stability. Hopefully we can go again next week.

Seizures have been about the same so no complaints in that department. YEAH. We're averaging about 1 sometimes 2 clusters a day. We'll take it. Diastat use is still low which is excellent. Won't jinx myself with anymore about that.

Next month will be a bit busier for us. Lots of appointments. We follow up with Dr. Kitei, the eye doctor and hopefully she will continue to be the same. We know her vision will never get better but our hope is to keep it from getting worse.

Neurology follow up scheduled with Dr. Katz, no plans right now to change any meds but we may re-discuss the Botox again. So undecided what to do. One day she seems tight the next day she's not and we don't want to sedate her because she's been doing so well. We'll see what he thinks again.

VNS follow up with Dr. Laban. No plans to increase the VNS but we think she should at least see her and make sure everything is in working order. It's been a while since our last visit.

Then we will be meeting a new orthopedist. We had a tramatic experience with one around us and have been shying away from the whole thing. We were told that Sara has scoliosis, which we knew. But we were told it was urgent to get her in a back brace which we then did only to find out from Dr. Katz that Sara has neuromuscular scoliosis and a back brace will do absolutely nothing for her. It may in fact hinder her progress. So now the over stuffed teddy bear on Sara's bed wears the brace. Unfortunately there is not much to do for her scoliosis except gaining strength in her trunk. We know that scoliosis surgery is more then likely in her future we just hope it's a long way off. So anyway we need to have her followed by an orthopedist and since we trust Dr. Katz so much he recommended one right down the street from him who is affilitated with Hackensack. So we'll see what they have to say.

So I think that's about it. She's doing well in school. She's standing in her stander right now playing with her tumble dinosaur and banging her bell braclet. Makes me smile.

Amy started kindegarden and is doing great. She positively loves it and just can't wait to get there every day. She's also doing soccer and really seems to enjoy herself. It's great that she has something that is all her own. Something that's all about Amy. Speaking of Amy. She just about blew me out of the water the other day. I have said before that she is such a little tender heart and she once again proved to me how much she loves her sister. Sara was having a seizure the other evening and I said something about her having one. We'll Amy immediately went over to her, put her hand on her chest and starting talking her through it. She said to me "it's ok mommy I'll stay here with her while you get the magnet." She then proceeded to re-assure Sara that she was there and that everything would be ok. "Im right her sister" she kept saying and stroking her hair. It was the most compassionate and precious thing I have ever seen and it just touched me to the core. We are so blessed.

I'm also trying to update with new pictures as well but have been having trouble with that too. So hopefully I can get some on today. Keep our friends in your prayers and thank you so much for checking in on us. We appreciate all of you.

Friday, August 25, 2006 7:03 PM CDT

Hi all

I know it's been a while since my last update and thankfully that's because we have nothing to report. YEAH !! She has really been doing well.

She went once to horse riding therapy and unfortunately we have not been back since. The weather has just been too hot. Hopefully next week. If I get a chance I will post some new pics of her on Sonny.

We have decided to cancel the botox injection in her hand that was scheduled for next week. Of course she has been very loose lately and we just don't know what to do. We've been really watching her and it seems to happen mostly when she gets excited about something. So we don't know if it's habit or some sort of sensory thing. Dr. Katz thinks she has an involuntary movement disorder but he too thinks it's fine to hold off for now. She's been doing so well that we really don't want to rock the boat and sedate her if it's not ABSOLUTELY NECESSARY. Dr. Katz agrees and thinks its definately NOT an emergency so we're going to hold off and keep track of when she's doing it.

She starts back up with school on September 5th (I think). So we are enjoying the time at home with her and Amy together. Amy starts kindegarden on the 31st. I just can not believe it. Where have the past 5 1/2 years gone? I know every parent says they grow so fast and time goes by so quickly but it really does. It's frightening. I don't know how I will do on the first day. I think it's just the fact that she will be driving away on the school bus that has me a wreck. If I was dropping her off it might not be as bad... sort of like Wee Vikes just every day. I'm sure I'll get through it. Times like this make me really miss my mom. I would love to talk to her about all of this. Tell her what Amy was wearing how her day was all that girly stuff. Anyway...

Seizures have been the same. One cluster just about every morning seems to be her thing. It's strange it's almost always between 7-8am. Hmmm....

She's not interested in eating anything by mouth. I've been trying some differn't things and NAH. Sometimes I just want to give up and know that she gets her g-tube feeds so why am I torturing her to eat something???

Her sitting has gotten much better and she'll stay up on her own for minutes at a time. When she starts to topple over she'll catch herself and get right again.

Sleeping is once again an issue. She'll go to sleep in her own bed (thankfully) on her own anywher from 8-10 is when she finally will fall asleep. But every morning like clock work between 3-4 she's awake. Usually it's a couple of hours before she goes back to sleep around 6-7. She gets very vocal so we have to take her out of her bed because we don't want her to wake up Amy. She gets in bed usually with me and ends up beating the tar out of me until she finally goes back to sleep. She gets your hair, puts her fingers in your nose, pokes your eyes and just when you thinks she asleep she slaps you in the face. UGH!!! I know I should just leave her in her own bed but I just don't want a 4 and 5 year old up at 3 am. Even when we give her Bednedryl she's still up between those hours. Strange. I guess I should just be thankful that I'm getting some sleep. Oh well she's so darn cute you just can't get upset with her.

Alrighty then I should sign off and get my jammy's on as well. Take care and thanks for checking in on us. Please stop by and visit our friends if you get a chance. Love and hugs.

Friday, August 4, 2006 3:44 PM CDT

Hello everyone:

Sara celebrated her fourth birthday yesterday. What a great day she had. She opened some presents here at home before heading off to school for what turned out to be quite a party. She had bubbles everywhere, cheese doodles, ice cream and even helped in making some milk shakes. When she got home we celebrated with some cake which she enjoyed playing with. As you can see Gus enjoyed his duty as clean up man. With the horrible heat we have decided to wait on having a big party until October when we could combine hers with Amy's. Amy thinks it's a great idea and would love to share her party with her sister. Isn't she just the best.

Yesterday had me re-living some of what she has been through in her 4 years and wow. She has packed a life time of living and hurting in her short little life. Some adults luckily never go through as much as she has. I posted some photos just so you could see how strong she really is. The awesome thing is that despite of all that she has been through she is HERE and she keeps giving life all she has. She is such a little gem and she just makes me so proud. She has brought grown men to tears and touched so many lives that she truly is working hard at the job she was given to do. She's our little miracle and I wouldn't want it any other way. The pictures made me remember the many moments of anguish and the days filled with tears. But they also made me rememeber how lucky we truly are. Any parent of a sick child that has spent time in the hospital knows that you see some things you will never forget. Some of those things are happening to your own child and some of them are not. Believe me there are moments and visions that I will never forget. Having a sick child makes you appreaciate life and heath more then ever. I know it sound cliche but it's true. We know how fragile this precious thing we call life is and we are so eternally grateful for the precious little life God has given to us. Sara is a living testimony to the saying that if God brings you to it, HE WILL see you through it. He has seen her and her parents through many trials and happy times in her life and for that we say Thank you. Thank you for giving us the faith to hold on even when we wanted to let go.

Sorry I'm rambling... I don't even know if I made sense. There are just so many emotions going through me.

She was supposed to start her horse back riding last week (I think) and we post poned it. The weather here has been outrageously hot. She has to wear pants, boots and a helmet. Ok in 90 plus weather that's a seizure waiting to happen. She can start next month when its cooler and go into October. Nicer time of year I think.

Summer school ends for her next Friday and then she has off for three weeks. During which she has quite a few follow up appointments. She has her botox scheduled for 8/31 and hopefully that will go off without a hitch.

Her seizures are good. She's avereraging 1 cluster a day with about 15-20 seizures during it. This is great considering where she's been, we'll take it.

I can see her across the hall from me right now. She's laying on her bed and she's chewing on her hands. She just looks so peaceful and happy. Amy's down the hall chatting with her dolls and laughing. I'm so blessed.

Thank you to everyone that continues to check up on us and offer you words of encouragement and your prayers. We are so grateful.

Love and Hugs
Barbara

Thursday, July 20, 2006 1:06 PM CDT

Hello everyone:

As you can see by our new pictures we went to see Bon Jovi on the 18th. We'll Sara didn't but Jeff and I did with my two nieces, Codi & Allie. We had an absolute blast. Codi said it best when she said it was awesome. The heat was just about unbearable. At one point waiting in line I thought my cheap little Walmart sneakers were going to melt to the pavement. We had awesome seats. Second level right to the side of the stage. Thankfully we were just underneath the overhang of the building because half way through it started to pour. At that point though the coolness of the rain was a welcome relief. Despite that they were great. It took me back to the first time Cathy and I saw them when we were freshmen in high school. I won't tell you the year... Ahhh memories. Anyway we bought Amy a t-shirt and she was disappointed that she didn't get a toy instead so the shirt is now Sara's. She wears it well don't you think?!

She has really been doing well, no complaints. Thank you Lord for blessing us with these special moments.

The botox is scheduled for August 30th at 6:30 in the morning. Yikes we'll have to leave the house around 4:30. Oh well we're anxious to see how it helps her. We could have done it sooner but are choosing to wait until summer school is over that way she doesn't miss any therapies.

I think that's about it for now. Please stop by and visit some of our friends. Joey is in the hospital and going through a rough time.
Morgan's shunt was successfully removed and she is home. YEAH!! Taylor was in the hospital and is now home. They are in need of prayers that she will be able to have a Baclofen pump inserted in her body to help her.

Thank you as always for checking in on us and we'll talk again soon.

HAVE A NICE DAY !!! (sorry couldn't resist)

Friday, July 14, 2006 11:34 AM CDT

We'll Sara got to meet "Sammy" the horse she will be riding for therapy. She's going to be starting the last Wednesday of the month and she'll go once a week. We've mutually agreed to try it and see what happens. The therapist said she usually see's a difference in 3-4 weeks so we'll see what she can do. We're hoping for more trunk control and to just make her more aware of the lower half of her body and get some strength in her legs. We're excited to get her started... I'll let you know how that goes.

Dr. Katz's office is working on getting her scheduled for the same day surgery OR. We're gonna go ahead with the botox injection in her hand to loosen her up. I'll let you know what that date is. He may also inject her right foot as well. He'll see what it looks like after she's sedated.

She seems to be enjoying summer school and is right back into the swing of things. I really hate to jinx myself but she's been sleeping in her own bed as well. I've been putting her in it, starting some music and letting her put herself to sleep. So far it's working and she's staying in there all night. This is a big hurdle for us and hopefully we can keep up the good work.

Nothing else really going on here. The heat is horrible so were hanging out in the AC. Next Tuesday we're going to see Bon Jovi. I'm so excited. Jeff and I are taking my two nieces, Codi and Allie. Amy and Sara will be staying with Aunt Kim and Uncle Brian and cousin Taylor for the day. I just hope this heat moves out by then.

We'll that's about it for now. Thanks for checking in on us and thankfully by the grace of God we have no complaints. She's really doing well and we're just enjoying the moments. Hope you are too.
Love and hugs

Wednesday, July 12, 2006 9:56 AM CDT

Hello everyone:
We're back from vacation and despite the horribly hot weather we had a fun time. We left Saturday the 1st around 9:00 an and we did not get there until 7:30 that night. The highway traffic was terrible. We were stuck on 95 in bumper to bumper traffic for about 80 some miles. Thankfully both girls were wonderful in the car. Amy played with Sara and read to her and was just great. Mommy on the other hand was getting antsy. I just wanted to get out and get there. We had three full days there and we hit Busch Gardens every day. That was a bit exhausting but it made Amy happy. The heat was just too much though. Sara did great even though you could see by looking at her that she was miserable. We kept her cool with wet bandanas around her neck. Most days were spent hanging out by the pool which both girls really enjoyed. We learned quickly that if we waited until later in the day the park was not as bad. Needless to say we would love to go back and see more of Williamsburg just not in July. Sara had only two seizure clusters the whole time we were away. I felt like we packed the entire house but hey better safe then sorry.

She started summer school yesterday and seems to be back in the swing of things. She goes 4 days a week from 9-1, She'll go for five weeks and then have off for a couple of weeks before school starts again. We're going today to Spirit Filled Riders to meet the horses and talk with the therapist.

Hopefully I'll get a chance to update pictures later on today or tomorrow. Thanks for checking in on us.

Thursday, June 29, 2006 2:34 PM CDT

Hi everyone:
As promsied I was able to add some pictures of Sara in her new stander. She looks great. I'm not used to seeing her upright like that and it seems so odd to me. She's much taller then I thought. She seems to enjoy it and we're trying to get her in it at least twice a day for about 40-45 minutes each time.

I got our application into the therapeautic riding facility and hopefully we wil be hearing from them soon and she can get started on that. I just finished the Catastrophic Illness application as well and that will be going out in the mail tomorrow. Keep your fingers crossed on that one. I know we'll be a while hearing back from them.

We were finally able to get back out yesterday and have her CBC done. Elwyn is wonderful. First try. No problems at all. Thankfully that is behind us and hopefully the results will be within the normal ranges.

We're getting ready to head to Virginia soon. I have to admit I'm nervous about the heat and Sara. Hopefully it won't be that bad. As soon as I'm finished here were heading to the pharmacy to pick up our 6 boxes of Diastat. We have not been using it as much but I would like to have that as my safety net if god forbid needed. I feel like were packing the entire house. Oh well. We're really looking forward to going away and just being together.

Got get going. Take care and be well. Love and hugs to all.

Thursday, June 22, 2006 8:18 PM CDT

Hey there:

I have to say that things have been great. I think most of you know that we have a chart that hangs in our kitchen. It has all of Sara's meds on it so we can keep track of what's she's gotten for the day. I also keep track of her seizures and Disatat doses. Once a week I put it into the computer and then at the end of the month I can tally up her seizure activity. Are you ready??? In the month of May she only had 22 episodes and here's the big one 4 yes 4 doses of Diastat. YEAH... She usually averages anywhere from 14 and up with the Diastat. So four is out of this world. We have NEVER had a month like that. Even the 22 is down from 61 the prior month. We knew she was having a good month but when we finally saw the numbers it was so exciting. What are we doing differen't. Not sure. Dr. Katz thinks it could be the depakene. He's says that this is a great med for Myo Clonic seizures and if it takes away the bigger part of her seizures then YIPEE. We do have to keep an extra careful eye on her liver so we have a script for a CBC. So needless to say we are thrilled. Way to go Baby S.

She saw Dr. Evans the other day (pediatrician) and he was even surprised at how cranky she was. In my last update I think I was telling you all how she's been whining and crying alot which is so unlike her. We'll Dr. Evans got to see it first hand and even he was surprised. He's treating her for a sinus infection and hopefully the Zithromax will help. We already see a difference in her coughing fits. Tomorrow is her last dose but it supposedly stays in your system for 10 days.

As I mentioned above we saw Dr. Katz on Monday and he was thrilled with how well she looks. Wasn't really much to talk about other then how great she was doing. She always has her right hand fisted and it's very tight. He had mentioned to me once before that he can give her a botox injection in her hand and that will help her to keep it loose. It could last about 6 months. Botox I know it's sounds crazy. We talked about it with him and we're going to try it. So once we get back from Vacation sometime next month we're going to schedule her to have it done. I'm also going to ask him about her right foot. She always has her toes curled never seems to relax them even when she's asleep and she is generally tighter on that side of her body. We'll see what he says.

Her Majacian sit to stand stander was delivered today. How exciting. Jeff got it all together but we'll have to work on adjusting it for her tomorrow. Hopefully I can get some pictures of her in it and post them before we go away. I can't wait to see her up right.

We went to get the CBC done today and had no luck. They tried twice and got it on the second time but the blood would not come out. Very strange. The girl questioned if she was dehydrated. I said I didn't see how she could be considering her feed had gone in about an hour prior. She told me that since she's a child they are only allowed to try twice (which was fine by me) and we will have to go back. Every time we have gone in the past there is one particular lady there that is great. Sara is a very hard stick and she nails it everytime on the first try. She wasn't in today and I should have just said that we would come back but live anad learn right. I certainly don't think it was their fault I've just never seen anything like that. Has anyone else?? We're gonna go back on Monday.

We'll I think that's it. Oh yeah I just have to share this with all of you that know our chubby dog Gus. He was at the vets today for his shots and he lost 10 pounds since January. Yeah GUSSY. Momma knew he looked a little thinner but everyone laughed at me. Sadly I think his 10 pounds are sticking to my butt. On that note have a great weekend and I'll work on some new pictures. Thanks as always for checking in on us and thanks from the bottom of my heart for all your signatures in our guest book. I love reading them all.

Love and Hugs
Barbara

Friday, June 9, 2006 2:23 PM CDT

Hey everyone:
Quick update... Today was Amy's preschool graduation. What a fun morning. She did great and we are all so proud of her. She has wisdom and an understanding of life way past her 5 little years. That may sound strange but she really does. She's been through so much and has given up so much due to her sisters illness and the way she handles herself amongst all of it makes Jeff and I very proud. She loves her little sister so much. It breaks my heart at times that she has never gotten to really experience a younger sister the same way other children have. But that does not seem to bother her. She gets so excited when Sara does things and she tells her how proud she is of her. We are truly blessed to have both of them as our children.

Sara is battling a nasty cold but she's hanging in there. Really struggling with her sleep but she can't breathe and has coughing fits so I guess that's to be expected. Seizures are coming back strong again and we're going throught Diastat. Again to be expected since she's not feeling well. Viscious cycle.

We just made plans to go to Williamsburg VA next month. Jeff has tickets to Busch Gardens and we've decided the heck with it we're going and that's that. I'm hoping it's not too hot. But like Jeff said pretty much where ever we go that time of year it's going to be hot. So were headed to the mall tomorrow (girls day out) to see if we can get Sara a bathing suit. We're looking for a tankini.. makes G-tube and diaper access easier. We just want it to be an appropriate suit for a 3 year old. Not the eaisest thing to find now a days but we'll give it a go.

Tonight my first niece goes to her 8th grade dinner dance. She's going in a stretch limo with her girlfriends. My little Codi is growing up. I can't believe it. My dad and I are going the the house to see her all decked out for the big night. If she lets me I'll post a picture so you can all she just how beautiful she is. I'm proud of the young lady she has turned out to be.

All right then. I gotta run. Take care and thanks for checking in on us.

P.S.
We found another therapeutic riding place. This one is the closest yet. About 20 minutes away at the most. Sara can start right away and will get to go during the summer. We're so excited for her. I have paperwork to be completed by Dr. Katz. We see him on the 20th. I may fax it to him sooner so it will be all done when we get there. Ok then talk to you all soon.

Love and hugs
Barbara

Sunday, June 4, 2006 7:23 PM CDT

Hey everyone:

We're still trying to figure out what's going on with Sara. She has so many fussy periods and that's just not her. Lots of whining and then full fledged crying. Again it's just not like her. You know as a parent that something is wrong but you have no idea what it is. Very upsetting. It's also getting on my nerves that everyone thinks that you as a mom automatically know what's going on. She'll be crying and someone will say what's the matter with her and look right at me. One of these days I'm going to say I don't know let me go get my magic eight ball and find out. I'm gonna call the GI docs tomorrow. I want them to actually see her this week. She suddenly seems to be putting on weight. Nothing has changed with her formula but I think it can be a side effect of the Depakate Syrup so I'll have to check on that with Dr. Katz.

Friday night I made the mistake of trying Melatonin again to help her sleep. It seemed to work right away and I was thinking hey maybe it will be different this time. Nah... She slept from 9-11 and then well lets just say she was ready to party. I was up with her until midnight when Jeff got home from work and then he sat with her until 3:00 when I got up again and finally got her to sleep around 3:45. We haven't had one of those nights in a long time so I know I should at least be grateful for that. But when your really tired it's hard to be grateful for anything. So needless to say the Melatonin does not seem to work for us. If I remember correctly this is what used to happen when we were trying it a while back. Oh well.

Seizures are coming back again but not too bad. We'll on that note I need to go. She's done with her feed and she's getting upset. Hopefully we can settle in and get ready for bed.

Please remember our friends in your prayers and thank you as always for checking in on us and for signing our guest book. We love to see who has been by.

Love and Hugs

Wednesday, May 24, 2006 7:58 AM CDT

Hello everyone:
We hope that this update finds all of you in good health. It's been a bit nuts here and I'm not sure where to even begin. First let me say that seizure wise we have been doing GREAT. She got Diastat around 4:00 this morning and that's the first since May 12th. So needless to say it knocked her out. She's had some seizures in between those dates but nothing in comparison to what she had been having. She's even going 4-5 day stretchs without one and we are just thrilled. Is it the new medication? Who knows. Somethings we just don't question.
She is still having some GI issues. We have no idea whats going on. I can't even remember what I mentioned in my last update so forgive me if I repeat myself. She was having some issues with gas and the GI doc had us giving her Maalox Max and Primadophilus Junior. It seemed to be working but then she started with horrific diarreha (?spelling). I mean horrible. Change her clothes kind of horrible. The GI docs had us cutting back on her formula and strictly give her Pedialyte. They also told us to stop the Maalox because that could possibly be causing the poops. So long poopy ;o) story short she is back to her normal feedings with her formula, the poops are under control. She is still taking the Primadophilus Junior to replace the good bacteria in her tummy. My gut tells me she just had a bug but I don't know. She's still not quite herself and I have to admit that has me a bit puzzled and worried all at the same time. She's whining alot. For those of you that know Sara this is so not her. Through everything she went through in the past three and 1/2 years she is NOT a crier. It takes a ton to make her cry. Now she just gets crying and I have no idea what's going on. I vent her for gas and do all the other things that we normally do to make things better and she'll just keep crying. Something is bothering her and I don't know what it is. That said as fast as she starts crying she'll stop. Maybe this is just her new way of saying "Hey your pissing me off :o)" I'm not going to give it much longer and we'll be making a trip to Hackensack to physically see the GI docs. We even took her to the dentist because we thought maybe her teeth were bothering her. Nope. Everything looks great and she has all she's getting for now, even her two year molars. They suggested to have her ears checked. Did that. Nothing, everything looks great not even a sign of a cold or post nasal drip. So she remains a mystery. I do know that she is starting to play her mother. She'll be fine, quite content with herself and I'll sneak in a room to get something, she'll spot me and immediately start whining. Which in itself is a great thing. I love knowing that she has become aware of me and knows that I can and will try to help make things better for her. Does that make it easy to decipher if something is really wrong though... No. So the Mystery of Sara continues...
Well, that about wraps it up. The rest of us are battling the spring pollen. Tissues are flying around here. I'm so not ready for summer so I'll put up with the stuffy head for now. It's beautiful today and hopefully we'll get out a bit and blow the stink off of everyone.
Please remember to keep our friends in your prayers and thanks for checking in on us.

Wednesday, May 10, 2006

She's having a hard time with the Depakene syrup, it's upsetting her stomach. Dr. Katz said today that it's the roughest form of Depake but we can not do the sprinkles so we're stuck with the syrup due to her G-tube. So we're going to make sure that her tummy is full from a feed and then give it to her. If she still has a hard time we'll have to cut back on the dose. All else fails we'll have to stop it all together.
She's got a tooth coming in and that's also driving her crazy. Being on the Phenobarb for so long her gums are so swollen that her teeth seem to break though slower. To say the least the little bugger has had an uncomfortable day. Hopefully she'll feel up to school tomorrow. She was awake most of last night so we decided to keep her home. Hopefully tonight will be better.

Monday, May 8, 2006
Well I guess I spoke too soon. Yesterday Sara had some coffee ground looking substance come back through her
g-tube when we would vent her. She then had a hard time with her feeds. So I put a call into the GI doc this morning. They were great and called in a prescription for Zantac. She's been on it once before for the same thing so I'm glad we didn't have to make the trip all the way up there.

We also picked up her Depakene Syrup this afternoon and she'll get her first dose tonight. I'm not sure how she'll re-act to it. It may make her tired and it may make her all wired up. Hopefully the first and not the last. She's a bit fussy at the moment. She's headed for a nice warm tubby and then in to her jammies for the night.

Please continue to lift Morgan and her family up in prayer. www.caringbridge.org/visit/morganreynolds

As always thank ou for checking in on us. Love and hugs

Saturday, May 6, 2006 5:10 PM CDT

Hello everyone:

Quick update about ourselves and then on to something weighing heavy on my heart. Sara has been doing well. We went 5 days without a seizure. Yes... 5 days. I tried not to but in my head I was hoping this was it. We had kicked Epilepsy in the butt. Oh well. We put in the script for the Depakote. Since Dr. Katz wants the syrup (for her g-tube) out pharmacy has to order it and we'll get it on Monday. So we'll see what this medicine can do for us.

So hear's the other thing. Our little friend Morgan needs your prayers. Her parents just found out that she has Mitochondrial disease. It's an incurable disease and we need God to work a miracle. We met Morgan and her family through caringbridge and they are just like a part of ours and my heart is breaking for them. Please offer some encouraging words www.caringbridge.org/visit/morganreynolds
to them. You can also go to http://www.tystrot.com. to see a video on another family in Georgia fighting the disease.

Please please pray for these families. We need a miracle and the Lord CAN do it.

Hugs
Barbara

Sunday, April 30, 2006 4:41 PM CDT

Happy Sunday Everyone:
What a beautiful weekend it has been here. We even ventured out to the local park this afternoon with grandpa. I'm hoping to add some pictures after this journal if I have the time.
We went to see Dr. Katz on Friday. of course our seizures are getting a bit better. It never fails. When we don't have an appointment we have trouble and when we have one we're doing fine. Oh well. He was glad to see her and thinks she looks wonderful. He gave me all my re-fill prescriptions and even added Depakote. Told us to think about adding it even though she is coasting along at the moment. We have not made changes to her meds in so long (adding and deleting) and we all think it's time to try something new. We haven't filled it yet (tomorrow) but he thinks it will help with her partial seizures, either partial or complex can't remember. So it looks like it will be Phenobarb, Keppra, Depakote and Diastat as needed along with the VNS working at it's usual. Once we get on the Depakote and give her time to adjust we are going to come off of the Keppra. Never really did anything for her. We can honestly say that we have gotten the best results with Phenobarb.
I also asked him about Hippotherapy (horse back riding) for Sara. I thought for sure he would say no due to her shunt and he shocked me by saying "great." He's all for it and thinks she would benefit from it. When I questioned him about her shunt his reply was something like... If she gets hurt enough to damage her shunt then she's really gotten hurt and the shunt won't be our only problem. OK then. Thankfully there is a place about 15-20 minutes from us that offers Hippotherapy so I'm going to look into it.
I spoke with our neighbor the other day and she is going to hook us up with some indiviudals with the Shriners. We are hoping to get some help with a piece fo equipment we want to get Sara. I was also talking to the sister of one of Sara's therapist at school. Karen -- what a wonderful women. So full of knowledge. She told me to contact the catastrophic illness fund about getting the van paid for. I was so mis-informed about what they can do for you. My sister-in-law had suggested it but I thought they only paid for medical bills. DUH on my part. Live and learn. So after speaking with her I called Catastrophic and they are going to send me an application. I have to tell you though the women I spoke with asked me Sara's age. When I told her she was three she replied that MOST three year olds are getting picked up and put in a car seat. This made my skin boil. I usually don't speak up but my reply was. Yes I agree, most three year olds are aso walking, talking. eating by mouth, and doing all sorts of things that my three year can not do. Not to mention that she is 50 pounds of dead weight and does not know how to hold on so carrying her is like carrying 60-70 pounds and she was breaking my back. And if Sara was your average three year old we would not have spent all of this money on a van with a motorized ramp just because we thought it was cool. Right was her reply... I understand you just need to document all of that on the application. UGH!!!! I just had to share that. Most of you mom's with spcial needs children will get where I'm coming from. First of all why would I call Catastrophic if I didn't have a special needs child and was alreay at my wits end.
Phew... thanks for listening. That was such a crazy day for me that I took the girls to Dairy Queen. No emotion that a heath bar blizzard can't fix :o) Remind myself why am I going to curves :o) Oh well I'll get back on track another day.
Hope all is well with all of you and thanks again for listening to me ramble.
Love and hugs

Wednesday, April 26, 2006 5:15 PM CDT

Hello everyone:
We hope you all had a wonderful Easter. We received great news. Jeff's older brother Mark and his wife Jen are expecting twins. She is due in November. This will be child number 3 & 4. Wow... We're so excited.
Sara had an un-eventful Easter seizure wise and for that we are grateful. Since the increase in the Phenobarb her seizures have been better. We go see Dr. Katz on Friday so we'll see what he has to say.
She's been a real stinker lately with her glasses. We have been using a mitten on her left hand to keep her from ripping them off but that's not working anymore. If anyone has any suggestions I would love to hear them.
She's also been extremely vocal. Jeff and I are wondering if she is going to start talking. We would love that.
Last Saturday we went to an Abilites Expo at the Raritan Center. It was absolutely terrific. First we stopped for breakfast and a little girl next to us kept complaining about Sara making noise. Jeff and tried to brush it off but it still hurts your feelings. Then we arrived at the expo and we felt like we were finally where we were supposed to be. We fit in. No one staring, no one even paying attention to us. We were all the same. There were so many things to see it was over whemling. We got her a new bath chair that works great. We are interested in getting her this mobility system that is a sit to stander but it's also motorized so she can eventually get around on her own. It's called www.mobility4kids.com check it out if you can. It's quite pricey though and we're going to look into funding of some kind.
We then did something we never thought we would do. We didn't even plan on looking at them but we purchased a customized van. One that has a motorized ramp for Sara and it has been a blessing. We've only had it a couple of days and life has become so much eaiser. It was a huge thing for Jeff and I to do and I have to admit it was kind of upsetting if that makes sense. I think it was the fact that we had to admit that we needed help with her. She's just too heavy to keep carrying around and we almost feel like we can't handle her. When we went to pick it up on Tuesday I got teary eyed on the way home. Jeff wanted to kow what was wrong and I said that I never thought it would come to this. I never thought we would need something like this to transport her around. I thought she would be walking. It's a hard pill to swallow. But like all the other hurdles we've had to jump over we'll do it together as a family.
So, on that note I gotta run. Sara's sitting next to me and she's getting ticked off. She's ready for her bath and I'm taking to long. Oops there go the glasses again.
Thanks for checking in on us and for siging our guestbook. I love checking to to see who has been by.
Love and Hugs
Barbara

Sunday, April 16, 2006 6:49 AM CDT

Good Morning All:
Happy Easter Sunday � Resurrection Sunday. Thank you Lord.

I had not planned on updating this morning but decided since the house was quiet (everyone still sleeping) that I would. Sara has been struggling with her seizures again. I don�t know if most of you know but she has what are called clusters of seizures. Which means in a period of 7-8 minutes she could have 20-30 seizures. So when I say she�s having 3 seizures a day I mean she�s having 3 clusters with who knows how many seizures in them. Lately she�s been averaging 4-5 clusters a day. They seem to be changing a bit and must be as I think hitting her in certain areas of her brain. Sometimes she will have this goofy little grin on her face and yet she�s seizing. Other times she looks absolutely terrified and cries out � those really have a way of getting to ya. They also have been lasting longer then usual. We had one that went on for 23 minutes the other day. That one was bad even after Diastat she kept going and I was a wreck. So I would just ask that you continue to pray for seizures control. Oh yeah God bless him � I did speak with Dr. Katz (while he was on vacation) and he had us add a dose of Phenobarb during the day. We�re waiting to see the effect of that. I know it will take a couple of days for her system to work with the new dose and raise her levels.

What I really wanted to write about this morning was how blessed I am. This morning I was laying nose to nose with Sara and I was struck by how sweet and precious she truly is. Her little face is so round and her tiny little pug nose and her flowing eyelashes. The sound of her breathing. I love the way she stretches and yawns. Even the scar that runs through her hair is beautiful. It shows the world where she has been and what she gone though and how far she has come. I stare at her this morning wondering if she will ever speak to me. Will she ever say �mommy?� Will she ever say daddy, Amy or even Gus? Will she ever look at me and say I love you? Will she ever walk on her own? Run and chase her sister laughing? Eat without the aide of a feeding tube? I realize that even if she never accomplishes any of those things everything will be alright. Besides she speaks to us in her own way. When she snuggles in your arms and her breathing calms and you just know that she�s content. When she�s holding onto your finger with all of hers and she squeezes and when you try to let go... she won�t. When she vocalizes and people stare we know she has so much to say and that she�s just letting everyone know she�s there. So even though we may never have �it all� we already do. We may never live in that big beautiful house with all the finer things. We may never take long vacations in exotic places and we may never drive the fanciest of cars. We may never have two perfectly �normal� children. But you know what, that�s ok because inside this house is a whole lot of love. Love that some families may never know. Love that I feel blessed to be a part of. This is what God had planned for me. A little girl came in our front door a week or so ago and asked Amy why we lived in such a teeny tiny house? Which baffled Amy � because this is our house that�s why. As I tried in my prideful manner not to be insulted it struck me just this morning. Yes, your right we have a small house but I know something that some do not. GREAT BIG LOVE GROWS IN TEENY TINY HOUSES.....

Happy Resurrection Sunday... God is good. Thank you Jesus.

Hugs
Barbara

Monday, April 10, 2006 3:31 PM CDT

Hey everyone:

Thank you so much for your prayers and support for Amy. She is HOME. YEAH !! We are so glad to have her back where she belongs... even the dog was excited to see her. We brought her home this morning. She seems to be settling right back into home life and getting her little routine going again. Thankfully she is on break this week from school so she has time to recoup and get back to 100 We go back to the ENT on Wednesday and hopefully he'll give us a good report. The most importnant thing is that she takes the medicine they prescribed. All of it. Amy can be a stinker when she wants to about medicine so I'm hoping she does not give me a hard time with this stuff. I can't think of what it is and I'm just to darn lazy at the moment to get up and look :o)

Sara is struggling with her seizures. They get a hold of her and they just don't want to let go. So we have a call into Dr. Katz's office and when he calls in hopefully we'll here from him. I want to give her some more Phenobarb because I think that's what he's going to suggest but I would never do that without his consent. I did send him an e-mail but I can't blame the guy for not checking them while he's on vacation.

We cancelled our vacation that we had scheduled for next week. We were going to go to Williamsburg VA. Jeff gets tickets through work for Busch Gardens and we thought this would be a great time of year. Oh well, not a big deal. Taking care of Amy was our number one priority and they'll be other vacations but there will never be another Amy.

We just found out that our insurance company will not approve Sara's stander. To say the least I'm pissed off. I'm going to see if Dr. Fried's office will help me fight it. I don't have high hopes of changing their mind but I have to try. Standing is not a necessisty in their eyes. Maybe if they had a child or relative that couldn't they would understand.

So that's about it for us. We have a nice quiet week ahead and are looking forward to just being home. We'll be with both families on Easter Sunday and I'm really looking forward to seeing everyone. We hope that you all have a great Easter and may the Lord bless you the way he has blessed our family.

He may be small but he has a big heart.

Wednesday, April 5, 2006 9:11 AM CDT

Just a quick update while I have a minute.

Sara is doing just fine. Her seizures are about the same and she is doing well with the transition to Peidasure with Fiber.

Amy her older sister on the other hand is in the hospital. She was admitted to the Childrens' Center in Morristown on Sunday night. Jeff and I have been taking turns staying with her each day. She has an abcess deep in her neck. They are trying to shrink it away with medication. It's in a tricky spot and they would like to avoid going in to drain it unless necessary. I'm trying (as her mom) not to panic and over think the situation. She's on IV medication and today will be day number 3. She perked up a bit yesterday and even ate a little and that had the ENT feeling more optimistic. We are going to push for another Cat Scan by tomorrow. We are hoping to not go into the weekend not knowing what's going on. Anyone who has been in the hospital knows that NOTHING happens over the weekend. NOTHING. We feel if by tomorrow it has not shrunk at all then maybe we need to do something. If it has shrunk we'll then we kow the medicine is working. It's hard because the pediatricin (ours is not affiliated with the hospital) and the ENT are contradicting each other. The ENT (who would do the surgery) feels we have a shot of breaking it down with medication. The Pediatrcian feels that will not work and they should just go in and drain it. We at this point don't know what to do. If we are putting off the inevitable then go in and do it but if she has a chance of her body doing it on it's own and not going through surgery then give her a chance. We're so not used to this situation. With Sara unfortunately staying in the hospital has become old hat (so to speak) we know what to do everything just kind of happens and falls into place. Amy is our healthy child... how could this happen and what do we do. This is not the hospital we go to with Sara so we're still learning the "ropes" and figuring everything out. As mommy I'm not as comfortable because I have come to know everyone at Hackensack and this is just so different. Sara and I were supposed to go up after school today and I would stay the night but as I type this we are having a fluke snow storm and it looks like a winter wonderland here. I hate it.

So please pray for Amy. She is still very uncomfortable, especially at night. She can't find that comfy spot and go to sleep, she's very resltess. Jeff said they gave her tylenol with codene last night and all it did was upset her stomach and make her more restless. I'm dying to get up there and this so called snow shower is driving me nuts. Please pray that the abcess shrinks on it's own. I don't want her to have to go through a surgery. Please pray for wisdom for the doctors on what to do for her and please pray for patience for Jeff and I. Thank you and I'll update again when I get a chance.

Love and Hugs
Barbara

Sunday, March 26, 2006 2:30 PM CST

Hello everyone:

Hope all is well...

Last week was a busy week for Sara with appointments. We went to see Dr. Kogan on Wednesday. She is Sara�s GI doc. We never really knew Sara needed to be followed by a GI doc and I have to say that I really was wondering what it was that she was going to do for us. Boy am I glad we went to see her. All along Sara has been on Carnation Good Start formula. As of within a year she has been on the Good Start 2 formula. We thought everything was fine with that. Well Dr. Kogan wants her off it. She�s not getting everything she needs. I think it�s kind of like empty calories. That is for her and her age. It�s not doing her any harm but eventually it would and she can not be on it forever. So we are starting her on Pediasure with fiber which is an all around well balanced drink for her to have. The greater news is that our insurance company is going to supply us with it. I had asked them once about supplying her formula and they told me no but Dr. Kogan�s office said that�s ridiculous. Anything through her g-tube should be covered as medically necessary. They fought it and we�ll didn�t really have to fight it and low and behold they are going to do it. Our first shipment arrived on Saturday and we are just thrilled. What a savings that will be for us and what a great thing for Sara. We are transitioning her now and should have her on it completely within the week. We have to watch her for weight gain... she�s a little chubby now and we don�t want it getting out of control. We may need to water it down more then planned. The other thing is that Sara strains a lot when she goes poop and sometimes has blood in it. Dr. Kogan does not want her straining at all and said that the pediasure diet should help her tremendously. If not she will start her on something to help her out. Within three weeks we should also have her down to three feeds a day which has been one of our goals for her. Needless to say we are thrilled. We will follow up with her in about 4 months.

We also saw the eye doctor. GREAT news on that front. Her right eye is now drifting out, which may sound like a bad thing but in Sara�s case it�s a great thing because it means her left eye is focusing. YES focusing. HUGE!!! He was so impressed. She has been faithfully wearing her glasses. You can see in the new pics and she looks great if I don�t say so myself :o) You can also see her mitten in some of them. That helps us to keep the glasses on. She�s back to tossing them. Dr. Kitei put drops in her eyes and said that essentially her prescription has not changed which is another huge step for us. We already know that her left eye is not going to get better but we are just blown away and thrilled that it has not gotten worse. No need for new glasses. Just keep up the good work. We got back to him in about 6 months.

So the other day Jeff and I were both saying that we have been extremely lucky lately and then it dawned on me. It�s not luck it�s the Lord moving in our lives. We are truly blessed and we are so grateful to Him.

Seizures are about the same. Old faithful has come back and she�s getting more Diastat then I like but we have to do what we have to do. Looks like I�ll be making that appointment with Dr. Katz after all. I was talking to a women the other day that volunteers at a facility that does therapeutic horse back riding. It sounds very interesting and I would like to look into it. I have a feeling the King will say no because of Sara�s shunt and I have to also admit that is the only thing that has me thinking twice about it. I�ll let you know.

No word on the stander yet. I put a call into the medical supply guy but have not heard from him. I�ll try again Monday. I really want to get her in one of her own. There is a medical expo coming to Raritan next month and we are hoping to go. We need to start thinking about things for the house. Mainly something to help with her bathing situation. Right now she has a reclining chair we put her in but I�m so afraid I�m going to drop her. She�s 45 pounds now and keep in mind that it�s dead weight. She does not reach for me and hold one like your average 3 year old. When she�s wet and slippery it�s even harder and makes me very nervous. We�ll be away but are coming home just in time for the show and hopefully we can get an idea of what we would need to make it better. I know they have lifts and stuff but we have no idea how they work or how you even get something like that. We�ll find out though. One of our therapist from Early Intervention had told us about the expo last year but we didn�t make it down. She said if anything it�s just very informative. So we�ll see.

That�s about it. Amy goes to the dentist tomorrow morning. Please pray for her and daddy as he is going in the room with her. This is his area of expertise :o) She has to have some work done and she�s petrified. We�re hoping for a good visit because she has to have another one and then a meeting with an oral surgeon next month.

Please continue to keep Skye�s family in your prayers following her passing last Saturday. I would give you her web page but it�s password protected and I can�t give that out.

Thanks as always, love and hugs

P.S.
Cathy if your reading this it was great to see you. Twelve years was too long. Thanks for continuing to be a great friend. Love ya

Monday, March 20, 2006 4:25 PM CST

Hello everyone:

Happy Monday: It�s been a few since my last update and that was due to lack of anything to tell you. Which is GREAT.

Sara is definitely back to herself again. She�s bright and alert and very happy. Yesterday in church Jeff actually had to take her out and into the nursery. She was so vocal we felt bad. Most people in our church don�t mind and even find it amusing when she screechs and such but as of lately our church has grown tremendously and some of them do not know Sara. We got a few stares and we didn�t want to disturb anyone so we felt it was only polite to take her out. My friend told me we shouldn�t have and that they need to get used to her but we just got uncomfortable. I mean she was loud... really loud. But hey she had a lot to say... She was moved by the spirit and she wanted everyone to know.

Saturday the girls and I spent the day with Aunt Polly. It was great. We went to lunch and then just hung out at the mall. We had an awesome experience at the Last American Diner on Route 22 in Branchburgh (?) almost to Bridgewater. We had Sara�s big Kimba stroller system and most people don�t know what to make of it and always ask if we need a booster or something for her. Which is fine we just no. The owner showed us to our table and I thought he was putting us in one spot when he tapped me on the should and said no over here where you�ll have more room. He even folded the side of the table down for Sara so she could be right up next to us. It may sound silly to some of you but this small gesture meant the world to us. Polly and I were both so touched that we were sure to let him know before leaving what his small gesture had meant. Lunch was great... the food fabulous and our waitress was so sweet. She asked me about Sara and was very nice. I had printed up some of Sara�s cards that morning with her CB site on them and I gave her one. I can�t say enough how great the dining experience was for us. Thank you.

We took the girls this morning to a pediatric dentist near our house. She was wonderful.. Sara actually got a cleaning done. I had no idea how she would manage with her swallowing dificulities but she did great. Her gums are very puffy and overgrown and that�s from the Phenobarb. Her teeth look great and are actually in more then we thought because you can�t really tell with the puffiness. So for once we don�t have to go back until her next cleaning. Yeah. Amy on the other hand did not make out that good. She has an extra baby tooth which is being followed by an extra adult tooth. She recommended an oral surgeon to us and we have an appointment the first part of April. She goes back to this doctor next Monday to have one of her two follow up visits. She has 4 cavities. YIKES. So please pray for our little one. She has been traumatized by knowing so much about Sara that when they mentioned an x-ray today I thought she was going to jump out of her skin. �No no only Sara gets those.� Poor little bugger, I felt so bad for her. She got a prize from the prize box so that made things a bit better.

So for us that�s about it. We have a busy week with appointments. Wednesday to Hackensack to see the GI doc and Friday we go to the eye doc. I have to make an appointment with Dr. Katz but I have been putting it off. She has been doing well with her seizures and I don�t want to jinx her. Why the change again... no idea. We are off the evening dose of Keppra now and her antibiotic is done. She�s back down to 1-2 a day and we are thrilled. For the most part it�s the partial seizure that goes away on it�s own. So I hate to talk about them because all heck seems to break loose when I do. Just know that we are so grateful for your prayers and that they are working and she�s doing so much better.

On that note I am very saddened to say that Sara lost another little friend on Saturday morning. Her name was Skye and she was a beautiful little 2 � year old. She went peacefully in her mommies arms. Please pray for her family during this very difficult time.

Barbara

Friday, March 10, 2006 10:25 AM CST

Quick update:

Sara seems to be turning the corner. Today is the first day that she really seems to be on the mend. Yesterday she was awake a bit more but still had that look in her eyes. This morning she woke up bright eyed and ready for the day. Still very congested but the fever seems to be gone. She's kicked back on the bed at the moment chewing on her fingers. I had to take her for a chest x-ray on Thursday and thankfully it was negative. Dr. Evans did put her on an antibiotic though (Omnicef -- old faithful) and it seems to be doing the trick). We are finally seeing a decrease in her seizures. We are off the evening dose of Keppra and will hopefully be coming off it all together. I need to make an appointment with The King next week. We're coming off it wether he likes it or not... :o)

Today we have a consultation with a new medical supply company to try and get Sara a stander. She used to have one through Early Intervention but when the program ended for her they needed it back. She has one at school and spends about 45 ninutes a day in it. If we had one for home that would free up time for her to get even more out of her school day. So we have to have this crazy consultation (here at the house thankfully) to see if she needs one. Ha ha ha. Do you think she needs one? She's three and can not support her own weight. Hmmm.... maybe. I know we have to go through these things but it just seems so obvious to me and that this is just a bunch of paper pushing and time wasting. But as long as we get one in the end that's all that matters.

It took me 7 months but I did finally get us reimbursed for the special needs stroller we purchased for Sara last September. Due to the fact that it was a very pricey item it was worth the fight. Insurance companies. Don't get me started. So all you moms out there keep fighting.

So that's it. Were on the mend. The weather is gorgeous here and is suppsed to be even better this weekend. Daddy has off (YEAH) and hopefully we can get outside and blow the stink off everyone. Especially Gus. WHEW... stinker dog. We're supposed to go out to dinner tonight with Jeff's parents and my dad. Hopefully Sara will have a good day and we can go. Pub 199... King Crab legs here I come.

Please check in on Christopher and offer some prayers. He is back in Hotel Hackensack and should have had surgery on the 5th. He resided across the hall from us back in the day when Sara thought that was were we lived :o) Hospital humor... Anyway he's in the new building that we were hoping none of us would ever see the inside of. Other then to check out the wing dedicated to our families (just kidding more hospital humor his mom would appreciate.) Please pray for healing and wisdom for the doctors on what to do next for him.

Barbara

Wednesday, March 8, 2006

Sara is still not feeling well. One things for sure when she gets sick she goes all the way and gets sick. Dr. Evans had told us to give her a decognestant for the stuffiness and Mortin obviously for the fever. Not much else we can do but ride this thing out. We do have cough medicine from a prior illness and he said we could give her that but not with the decognestant. So this morning I started the cough medcine. She was up quite a bit in the night coughing and just sounding like a seal. If she's not any better by tomorrow we're going back over to see him. I always worry about these things setteling in her chest.

Her seizures are OUT OF CONTROL. I'm not even counting today. She's had Diastat twice and it's only 10:30 am. Spoke with Dr. Katz yesterday since we did not make our appointment and we are going to start and come off the Keppra. We had at first thought that her increase in seizures was the VNS but now that we have come back down on that and she's still having too many the next guess would be the Keppra. We had increased it the same time we played with the VNS so it's hard to determine which is causing the trouble. He agrees that it could possibly be the Keppra so the obvious is to decrease it a little and see what happens. It's very frustrating trying to figure all of this crap out. Do I sound a bit feisty this morning... I am... Lack of sleep and utter frustration for my baby girl. She's been through too much. WHEN WHEN WHEN is she going to get a break? I do know that someday she will get a break and I'm thankful to know the one who will give her that break. With the way the world is today I just wish he would hurry up and get here. Take us to the land of no more tears. Thanks for listening and please keep her in your prayers.

Monday, March 6, 2006 5:00 PM CST
Well Sara is sick. She has 5th's disease (not sure how to spell it). She's running a fever, coughing up a ton of gunk which makes her gag. She's got a cherry red face and a rash on her legs. She looks like she feels just plain miserable. She's been sleeping most of the day. When she's not sleeping she's been seizing. Damn things.

We go to Hackensack tomorrow to see Dr. Katz. We're really starting to think the increase in seizures are from the Keppra increase. This happened once before when we tried to increase her Tegretol. We got a whole new seizure and not to mention a ton of them. Once we decreased the Teretol and eventually came off it things went back to "normal." Or as normal as we get. So we're going to see what he says tomorrow. I'm so thankful the anal part of me has kept track of all these things. He just loves to see me coming with my little charts and data. Actually he does he thinks it's great, he picks on me but he still appreciates it. I know I have to do it because every thing runs into each other and I don't know whats going on from one day to the next.

So that's about it. Please pray that she starts to feel better and that we can get these seizures under control. Her little body has just been through too much and she really needs a break.

Love and Hugs
Barbara

Thursday, March 2, 2006 5:20 PM CST

Ok this is my second try to get an update in. I hate that you can't seem to go back once you hit review. All you CB pagers will understand what I mean. Very frustrating.

My dad is finally home. Thank you for all your prayers. He came home on Monday and the girls and I stayed with him for a few dys to make sure he was back on his feet. We had fun being with him and he enjoyed the company. There's no place like home though. I talked to him this morning and low and behold he made it through the night without us :o)

Sara is back to her old tricks again. Her seizures are coming more frequently. We have no idea why and that just drives us nuts. She's still having the partial seizures where she sitffens looks to the right, rolls her eyes and her head and that usually goes away with one swipe of the magent. But then we have the more complex ones that just don't want to go away and now we're digging into our Diastat stash again. I hate to do that to her (knocks her out) but when they won't go away or just keep coming back then we have no choice. We were supposed to go see Dr. Katz this morning but we had some sleet and freezing rain andn we thought Hackensack was just too far to go in that kind of weather. So now we go next Tuesday.

I had a bunch more on my past update but now I have no time left and need to cut this one short. Thanks as always for checking in on us. Love and Hugs to everyone.

Please keep praying for Sara's little friend Morgan (site below) and Yipee for Taylor that she's finally home.

Friday, February 24, 2006 4:33 PM CST

It's been a while since my last update. My father is in the hospital and has been since Monday. He was having chest pains. We went to the doctor and his eeg was not normal and they were thinking it was one of his arteries. He was then taken to the hospital and they did a catherization on him. One of the previous stents was blocked and they had to put in another one. We have anticipated bringing him home just about every day now but something keeps coming up. He's been running fevers at night. He is now having tremendous back pain and they are trying to figure out why. He had a blood tranfusion today and he has an infection but they don't know where or what it is. They did a Cat Scan of his abdomen today and were waiting those results. His chest x-rays are clear. And we're waiting to hear if anything grows in his blood cultures. All this waiting is annoying. Please pray for him and pray that nothing grows in his cultures and we get some answers and he gets some relief.

Sara is doing good. We're averaging 3-4 seizures a day. Most of them are the new partial seizure which go away with one swipe of the magnet. Are these better then her other seizures, I don't know. We have an appointment with Dr. Katz next week so we'll see what he has to say. We missed our eye doctor appointment on Monday so I don't have an update on that yet. Thanks for checking on us we are so grateful for all your support.

Please pray for Sara's little friend Morgan. She had surgery this week... her site is below.

Hugs
Barbara

Friday, February 17, 2006 2:18 PM CST

Quick update:
I'm on the run again...

I spoke with Dr. Laban yesterday, Sara's Epileptologist. She said that though this side effect is VERY RARE she has had families complaining of the same thing. She explained that the VNS is turned up too high. If Sara were able to tell us she would probably say that she was having some discomfort but since she can't the discomfort that's she's feeling when the VNS is activated is causing her to seize. So we went to Hackensack this morning and she was turned back down to 1.0 for 30 seconds every three minutes and 1.25 during magnet swipe. So hopefully this will make her feel better. So far we have only seen one partial seizure since we turned it down this morning. Please continue to pray for the miracle of COMPLETE seizure control. Thanks for checking in on us and God bless. Have a great weekend. Daytona 500 on Sunday... Go Dale JR.

Wednesday, February 15, 2006 5:58 PM CST

Please pray for Sara... seizures are getting out of control again. Today she has had 9. I spoke with her neurologist and he is thinking we need to turn the VNS back down. She ususally has a flurry everytime we turn it up (unusual reaction) but that usually goes away within a day or so. This is day 8 and were not getting any better. We're not bad enough for the hospital. Most of them are a new seizure that after explaining it to Dr. Katz he says it's a partial seizure. We increased her Keppra the past two nights but we really need to give that more time to see if it's helping or not. Out of the 9 today 7 of them have been the partial seizure and the rest have been her ususal. I just went down the hall to find her having another one and I gave her Diastat. Please pray that we can get these under control again. Thanks

Thursday, February 9, 2006 5:46 PM CST

Hi everyone:
I�m trying once again to update. I had one all finished the other day and lost it.

Our visit to Hackensack went well. Dr. Katz amazingly was almost running on time. First I asked him about the Benedryl Allergy effecting her seizures and he said no. It all depends on the kind of seizures you have and in Sara�s case giving her an antihistamine is one of the safer things that we can give her. That said we don�t want her body to become immune to it either. After telling him that the Melatonin does nothing for her � if anything it winds her up. If we had to spend another night dealing with that kind of side effect I was going to call him to chat around 2 am. So he prescribed her Clonidine to help her sleep. Keep your fingers crossed. I had asked about the fact that most of her seizures occur in the morning and could that be from the Benedryl wearing off and could it be a reaction with her seizure meds and he said no again. It�s not uncommon for seizures to occur during the transition from sleep to awake. We also discussed going off of the Keppra. We honestly feel it never did anything for her. He has no problem with that but he would like us to have the sleep study that Dr. Samadi is recommending, and he would like us to give the VNS increase (1.25 for 30 seconds every three minutes and 1.5 on magnet swipe) about 4 weeks.

I then questioned Sara�s �hemispherectomy� is there ANYTHING on the left side of her brain. We were always under the impression that there was not because it was a hemispherectomy. He explained once again to me (I don�t know why I can�t seem to get this) but that Sara had a functional hemispherectomy where they cut the connections between the right and left side. They did remove some brain matter because she has cortical dysplasia which the medical term means congenital abnormalities in the architecture of the cerebral cortex. These islands of abnormal brain may promote seizures and in Sara�s case they did which were her �focal points� meaning where her seizures were coming from. Sound smart don�t I :o) She still has her left frontal lobe. OK that said then why do we still have seizures? Couple of things, there could be scar tissue and there could be re-growth and there could still be some matter that could eventually be removed. Which would explain why they wanted her to be monitored before the VNS in case there was something else they could have taken out. Our damn insurance company said no so we went for the VNS hoping to not have to put her through another brain surgery. All of that said we do think the functional hemispherectomy was a success for the simple matter that Sara prior to the surgery, would have so many seizures in one day that we would loss count. So what we have now is definitely better. Where am I going with all of this � I have no idea. Sara more then likely (unless God works the miracle we continue to pray for) will always have seizures. How well we can manage them is unknown at this point. The VNS is still new (it will be a year in August) so we have to give that time to work it�s kinks out. I do honestly feel that the VNS is helping. We go through a significantly less amount of Diastat and that in itself is a great thing. The other thing to always keep in is the fact that she�s happy, alert and progressing. Sara went six days without a seizure, she slept most of that time healing from surgery but why did that happen. According to Dr. Katz we could put her in a Phenobarb induced coma and she would not have seizures but what kind of a life is that. So it�s a catch 22. Less meds equal a much happier Sara who unfortunately has seizures. More meds equal a unresponsive Sara with less seizures but we don�t want that. She spent the better part of her first year pior to surgery "pickeled" as we like to call it. It's not something we want for her again.

Moving on... great news about her glasses. I somehow stumbled onto the fact that if she has a mitten on her left hand she can not remove them. So needless to say she has successfully been wearing her glasses. YEAH. She looks so different with them on and even Dr. Katz noticed that she seems to see better. Despite the fact that she is just about blind in her one eye she seems to really focus on things now and actually appears to be looking at something. Usually with her glasses off she just gazes over things. We go see Dr. Kitei (eye doc) on the 20th so we�ll see what he has to say about her progress.

All of these things said she has just been happy. I mean really happy. Lost of smiles and just this all around happy look on her face. It�s such a blessing to see. Smiles did not come easy for her and we just absolutely love to see them. She�s sucking on her hand/fingers. Really going to town on them and this is also a big deal. It probably sounds like a nightmare to some parents but to us it�s great. One more thin that she�s teaching herself to do and that shows progress to us.

Her breathing is so much better. At night I can barely hear her over the monitor. I�m so used to hearing her snore like a little buzz saw that�s it�s kind of un-nerving to be straining to hear her at all. We did try the Clonidine and the first night not so good. She went to sleep right away but then was WIDE awake at midnight and was just going off to sleep when the alarm clock was buzzing to get up. Second night was much better. She was down by 9:00 and woke up around 3ish. I brought her in our bed and she went right back out until 6:00. We were thrilled. Hopefully it will continue to work.

On that note I should be going. Thanks you all for your continued prayers and support. We love looking in the guest book to see who has stopped by for a visit. Your words of encouragement mean so much. Please continue to pray for seizure control and all of Sara�s caringbridge friends.

Monday, February 6, 2006 3:24 PM CST

Hey there:
Just a quick update. God is so good. She has been just plain happy happy happy. So many smiles, mommy can't click the camera fast enough. I usually miss most of them. As many of you may know it was a long time waiting for these smiles and they are the most beautiful thing I have ever seen. I think she is finally feeling good in her own skin. (bad english I know)

Her breathing is so much better since the surgery that I can not hear her over the monitor anymore. Freaks me out a bit. I'm so used to hearing her snore like a buzz saw that's it's shocking to hear nothing but silence.

We're going to Hackensack tomorrow. Appointment with Dr. Laban first to turn up the VNS and then an appointment with Dr. Katz to go over things. Sonya (little Taylor's mom) was telling me about the effects of Benedryl in Sara's guest book. As many of you know we use it along with Melatonin (rotating doses) to help her sleep. Well she really got me thinking. Hmmm most of her seizures occur as she is coming out of sleep could it be the Benadryl? I'm gonna check with The King tomorrow and see what he has to say. The Melatonin does nothing for her except make her zippy and I refuse to use it anymore after the other night.

I'm pretty anal when it comes to keeping track of Sara's info and I usually go prepared to Dr. Katz's office. In 2004 Sara had 394 seizures 198 she needed Diastat for. In 2005 Sara has had 380 seizures and 277 required Diastat. Hmmm???!! I write that and yet looking at the numbers for the past two months it LOOKS better. 30 seizures in January, 20 with Diastat and 23 seizures in February, 13 with Diastat. The Diastat use really seems to be decreasing but not so much for the seizures. Although I do have AWESOME news that kind of got forgotten along the way with her feeling bad and all. We went 6 days without a seizure right before she had the stomach bug. Yes 6 days that is a record for her we were so excited and then BAM they came back. Darn things. We'll take the six days though, what a relief for her.

Ok for a quick update I sure did get off track. I'll be back after our visit to Hackensack tomorrow. Thanks for checking in on us and thanks for the prayers and support.

Barbara

Wednesday, February 1, 2006

Great news, scabs are gone !!! No complications at all. God is so good. He knew how worried I was about the possibility of bleeding and he took care of it.

Monday, January 30, 2006
Hey there:
We'll we are hoping to send Sara back to school tomorrow. I spoke with Nancy (her nurse) tonight and told her we'll give it a try and see what she can tolerate. Even if it's only a couple of hours -- we want to get her back into a routine, we think it will do her good.
She's healing well from the tonsil and adenoid surgery. Scab is still there and it could take a while to break off -- her tonsils we're HUGE according to Dr. Samadi.
Today was the first day since the surgery that I think she was really more like our Sara. She was alert and banging on her tray with her toys. She had a really rough night last night and she and I were up until (no kidding) about 3:30-4:00 am. Not much on TV at that time. Although we did get sucked into Legends of the Fall. She's been having some digestion issues. Last Thursday - Friday she was struggling through her feeds. We would start the pump up and within minutes she would start to cry and when we'd stop it and she would settle down. She also had a ton of risdual (spelling?) and gas when we would vent her before her feeds. So we put a call into the pediatrician he wanted her to be seen by the GI docs. We'll since she had not been to the GI doc for quite some time they did not want to give us any advice over the phone and we were told by the office that they couldn't squeeze her in. Nice huh. So we cut her feeds back some, tried peidsure and some pedialite and that helped a bit. We even got her glycerin suppositories (per our doc) and they helped too. So long story short we were on the verge of taking her to the ER when she seemed to turn the corner. She's tolerating her feeds and her bowels are starting to move again. Last night though even I don't know what was up, other then Sara and me :o) During this whole time her seizures were going nuts again. We are veterans at taking care of Sara and her seizures and we know to expect more when she's feeling out of sorts but even I have to admit some of them got to me. One in particular had me just about beside myself. I hate the * things!!! She had a pretty good one again this morning and got Diastat, slept it off and was her happy self the rest of the day. So anyway we're hoping if we can get her back into her routine and get her moving around more that everything will work itself out.
We do have an appointment with the GI doc next month. Apparently since she has the G-tube we should have been seeing one on a regular basis. Why? I don't know. When I spoke with them on Firday they were like "we'll who takes care of the g-tube and who orders your supplies?" UH... I do. "OH... we'll she should be followed by one anyway." So we're going to get in a group and that way if something like this occurs again they will know her and her meds and all that happy hoopla.
I think that's it for now. Gotta get down the hall and get everything ready so we can settle in for 24. Can't miss Jack saving the world once again.
Take care and thanks so much for signing the guestbook. We love coming on and seeing all your entries. Hugs to all of you and God bless.

Sunday, January 22, 2006 7:30 PM CST

Hi everybody, its half time in the late game and I just wanted to drop you a note on how Sara's doing. As you might already know from Barb's past journals that Sara had her tonsils, adenoids and a turbonectomy surgery on Monday. Sara finally stabalized enough on Friday for the doctors to feel comfortable enough to send her home. She had such a rough week with the seizures,high fever and no sleep. When she finally had her last seizure on Thursday morning, resulting in 2 doses of Diastat she fell asleep like Rip Van Winkle. It was also a tough week for Barbara, not being able to stay at the hospital. She had bronchitis and I made her go home to rest. Despite the hospital setting I wouldn't trade the time I got to spend with Sara for anything. She has given me strength that I never knew I had. She makes my everyday problems seem so small in comparison to all she goes through. I knew Barbara was in good hands at home with Amy. I gave Amy instructions... make sure mommy drinks fluids and take care of her the best you can. Amy being the little mother hen that she is was perfect for the task. So much to the point that Barbara heard rustling in the closet and asked Amy what she was doing and Amy replied "I'm going to vacum for you." What a sweetheart. Sara is having a hard time since we have been home. She cries alot especially when she coughs. I can only imagine that her throat hurts very bad. She seems to be breathing better with her nose. We hate to get excited and brag but she has not had a seizure since a very small one on Friday night that went away with one swipe of the VNS. I would like to thank all of you for stopping by to check on my little girl and for signing the guest book with encouragement and prayers. It means more to me then you would ever know. Please keep all of Sara's friends in your prayers and we hope that they are all doing well. Please continue to pray for healing for Sara. Thanks for listening to me babble... time for me and my football buddy (Sara) to go watch the second half. Bye for now. Sara's Dad (Jeff)

Saturday January 21, 2006

Saturday January 21, 2006
We're Home. Just wanted to let you know we got home yesterday. I will up date later and let you know how things went. Thanks for your prayers.

Thursday January 19th, 8:40 am
When I spoke with Jeff last night around 7:30 she was doing better. The fever was down, her heart rate was better (not great but better) and she looked good. Just got off the phone with him a little bit ago and it was yet another long night. Fever back and seizures are horrible. Waiting on blood culture results. They took a swab from her nose yesterday to see if what she is suffering with is viral. Never knew they could such a thing but we're still waiting on that result also. Dr. Katz gave her a bollus does of phenobarb yesterday and that helped for a little bit. Jeff sounds exhaushted and very frustrated. Dr. Samadi who did the surgery was in this morning and does not seemed concerned at all. He claims that she could run a low grade fever for up to two weeks and that's normal. Is 103 a low grade fever? So I don't know. All I do know right now is that yesterday sitting in a recliner all day must have done me good because I'm feeling better. Amy and I are going up today. Please continue to pray for Sara. I hope this is all surgery related and not an infection of some kind. Hopefully we'll know more later once we get some bloodwork results. Thank you.

Wednesday, January 18, 2006
She's still in the hospital. Jeff said she had a very rough night. Her temp is up to 103. I just got off the phone with him. The PICU docs have decided to take some blood and run some cultures and see if anything is going on. It could just be post-op but they want to make sure. Her seizures are getting worse and they are going to put a call into Dr. Katz and see if he wants to do anything. Please please pray for her. Her heart rate is way up and she just feeling miserable. I have bronchitis and I can not go see her and it's absolutely breaking my heart. Amy and I miss her and Jeff and just want them to come home. I'll post again if I know anything else. I have no doubts they will be staying the night again and right now I think that's the best place for her.

Tuesday, January 17, 2006
Good morning everyone:

I wanted to give you all a quick update on Sara. The surgery went very well. Doctor Samadi said her tonsils were larger then he thought and it's no wonder she has been having trouble. She was intebated when we got to her in the PICU and they waited until she was a little more awake before removing the tube. She was able to breathe on her own, thank you Jesus. She's obviously very sore and they are trying to keep her comfortable. I am now sick with Amy's nasty cough and cold so Jeff insisted I go home and he stayed with her. There was talk of sending her home today but after speaking with Jeff this morning that may not happen. Her oxygen levels dropped last night and the nurse noticed that she is skipping a heart beat. They did and EKG this morning but we do not know the results yet. There is talk of maybe doing a sleep study on her tonight to see if she is suffering from sleep apena. So I would ask that you please pray for our precious little one. I'm afraid this may turn into a longer stay then planned. She is very fragile and we worry so much. You all know as her mommy it kills me not to be with her that said she is in good hands with daddy. Please pray for answers and healing for her. I gotta run thank you as always and I will update when I can. love and hugs, Barbara

Just got a call from Jeff. The arythmia (spelling?) is nothing to worry about. Dr. Percy said it is common with all she has been through and there is a specific name for this kind but Jeff couldn't remember. Anyway nothing to worry about. Thank you Jesus. She just had a breathing treatment and is resting preacefully. He has not spoken with Dr. Percy yet about the sleep study. We are going to try and push for it. Since she is already there why not get it done. I'll let you all know. Thank you again for all your prayers and support.

Wednesday, January 4, 2006 9:57 AM CST

Wednesday, January 11, 2006
Nothing new here -- we were given the all clear by Dr. Evans for next Monday. We received a call from Dr. Samadi's office today and they are moving her surgery up to 8:30 am which means we have to be there by 7:30. Mommy's getting more nervous by the minute but I guess that's what we do. Amy knows nothing yet -- we'll tell her on Sunday night. She worries too much and I don't want to worry her more then necessary. Maybe I'm wrong but that's just the way we feel. She too has been through too much and it's getting harder on her because she's starting to really understand things. So anyway that's it. Please keep Sara in your prayers for Monday morning and please pray for Sara's friend Kody. He's having surgery tomorrow. I added his link below -- please offer some encouragement. We could all use it. Hugs and thanks as always.

Wednesday, January 4, 2006
Happy New Year Everyone:

I hope you all enjoyed your holidays. We had a great time. Christmas day was perfect. Amy was jumping out of her skin with excitement and Sara managed to remain seizure free for the day. She even ripped some paper off presents and enjoyed the tissue paper as well. I'm hoping to update with some pic's if I have the time. We were together with all our family members this year and that alone was a blessing to us. New Years Eve we went to Jim and Polly's house and just had a great time visiting and hanging out with them and their family. Weather was ify but we went anyway. It's not often we go places.

Sara update: We went to see Dr. Katz and he agrees that the tonsil and adnoid surgery is a great idea for her and he neurologically cleared her for it. We then had an appointment with Dr. Laban who turned Sara's VNS up again. She is now getting 1.0 volts every 3 minutes for 30 seconds and on swipe it's 1.25 volts. She coughed a bit in the office but that quickly went away and she seems to be tolerating it just fine. We are definatley noticing that the VNS cuts down on the length of her seizures but it's still not stopping them completely. Baby steps I guess.
We'll take what we can get, thank you Jesus. Lets see, we've also had all the necessary bloodwork so she's all set there. We go see Dr. Evans next week for her pre-surgery physical to clear her and then a trip to the eye doctor. We've decided to pull her from school for the week to hopefully keep her healthy. Maybe we're being a bit anal but we think any little bit of precaution may help. We've postponed a surgery before because of a cold and we're hoping to avoid that.

Hopefully this week her new car seat will be coming in. A much needed Christmas gift from Grandpa Jacobus, Nanny & Pop Pop Hoffman and us. We're working right now on getting her a stander. She has one at school and she's in it about 40-60 mintes a day and if we had one at home then they could use that time for other therapy. We have to follow the insurance process so it could take a couple of months for them to push paper around but we're trying since it will be covered under durable medical equipment. We were trying to go through an orgainzation called Back In Action but I'm getting no where but frustrated and I've decided that's not an emoition I want to deal with so early in the year :o) Ha....

We'll I think that's about it for now. I will try and update after the surgery to let everyone know how she is.
Thank you so much for all your support and prayers through the years. We are so grateful and so blessed. This page has brought us so much more then we ever could have imagined and that's thanks to all of you.
God bless and be well. Hugs to all.

Tuesday, December 13, 2005 2:18 PM CST

Hey there:
We'll we went to Hackensack this morning to meet with the new ENT. He took one look at her tonsils and his words or word was "impressive." I asked what did he mean and he showed us what normal tonsils look like and then he showed us Sara's and oh my gosh. It's horrible. Hands down, no question in his opinion they have to come out. She's scheduled for January 16th at 9:30 in the morning. Tonsilectomy, Adnoidectomy and Turbonectomy. There are bumps on the inside of her nose that he is also going to take care of to help her breath, that's what the last ectomy thing is. He does feel that because of her "tone" he would like her admitted. She will go to the main OR for the surgery and then were off the the PICU for a day or two. She will have alot of swelling inside her throat and he wants her monitored. We are pleased with that decision also. We are hopeful that this will answer so many prayers and questions for Sara. She has such a hard time breathing, sleeping and trying to eat anything. So please keep her in your prayers. We're going to pull her from school the week before in the hopes of keeping her healthy. We had to move the VNS this summer because of a cold we don't want that to happen again and anything we can do to avoid that would be great. She's sleeping at the moment... had a Diastat seizure. Poor little bugger snoring like a buzz saw. I'm excited for her to breath deep through her nose and not whistle. What a feeling that will be for her. Thanks for checking in on us and take care. If I don't get back on line before the 25th We hope that everyone has a Very Merry Christmas and a Happy HEALTHY New Year and that God blesses you all.
Love and Hugs
Barbara

Monday, December 12, 2005 2:48 PM CST

Really quick update. Last week we went to see the ENT and found out that Sara has very large Adnoids and that they should come out. Makes perfect sense and as crazy as it may sound we are very excited for her. The thought of finally being able to breathe, sleep and potentially eat. Wow. So we are going to Hackensack tomorrow morning to meet with another ENT referred to us by Dr. Fried's office. Two reasons, second opinion and our hospotal of choice for the surgery if she is going to have it. Super crazy request but please pray that he agrees after her check up and also feels that they should come out and that we can get this done for her as soon as possible. I'll try and update tomorrow afternoon after we get back. Thanks and hugs to everyone.

Saturday, November 26, 2005 5:04 PM CST

Since I have tried with frustration to update the journal twice this will be short :o)

Happy belated Thanksgiving to all:

We had a great day with our families and hope that all of you enjoyed the day as well. I remember the Thanksgiving three years ago when we were quarantined to the house. Sara was on the steroid ACTH in hopes of controlling her seizures and she was too fragile to have around other people. The common cold could have put her in the hospital. So getting out and being with family has a stronger meaning to us now.

Sara is battling yet another head cold and she is just plain miserable. I mean that in the sense that you can see in her eyes that she feels as bad as she looks. So it was inevitable, I�m sick, Jeff�s sick and Amy is fighting it. Oh well � Tis the season I guess. Sara has a 3 year well child check up with Dr. Evans on Tuesday and we go to meet the ENT the following week. Please pray that he has a solution to her CONSTANT congestion � cold or no cold she is ALWAYS stuffy. We did not go to Hackensack last week for the VNS increase. We spoke with the office and told them that we are happy with the level of control we are getting. We would like to save the increases in our back pocket in case we need them. Two days again without Diastat � (Thank you Jesus) she had it this morning with a seizure and boy did it knock her for a loop. The little bugger slept half the afternoon away. But I say when you don�t feel well on top of having a seizure sleep is the best thing.

I did manage to get the Christmas decorations out and up. It took me two days this year but I think it�s finally good to go. They are calling for warmer weather the beginning of the week so we�ll tackle the outside then. Not that we have much to put out it�s just nice when your fingers aren�t freezing off.

So that�s it for now. Take care and be careful out there shopping. I have heard and seen some horrible things on the TV. People are just insane. Let�s ALL try to remember the TRUE meaning of Christmas. Yes I said it CHRISTMAS. I know that�s like taboo now you have to say Happy Holidays but I say Merry Christmas to all those out there that want to take Christ out of Christmas. Be good, hugs to all.
Barbara

Friday, November 11, 2005 4:54 PM CST

Hey everyone:

I know it's been a while since my last update. Many things have been happening. I'm not sure where to start. We had a Happy Halloween. Amy was a happy witch and Sara was a Care Bear again. Honestly if Amy wasn't so excited to go out I would have been content staying home -- I think Sara would have also. She did'nt seem herself.

In my last update I had reported that Sara had gotten this mysterious fever and we never found an infection or anything. We'll I believe it was 11/2 it happened again. She was fine all day, she went to school, was happy and content. I took my niece Allison to Kohl's to look for an outfit for the Tall Cedar Benefit that coming Saturday when things went down hill FAST. Sara all of a sudden got beat red and I mean like in the blink of an eye. I could see her clustering with seizures and I started to panic. We ended up in the dressing room with Allie. Sara's seizing and gagging and I'm freaking out. She feels like she's on fire and I have no clue why. I think I gave her Diastat I'm not even sure anymore. We raced home and she seized about 3 more times. I pulled over and swiped her magnet once that I remember. Needless to say I was beside myself. Got home and her temp was 103.5 gave her Motrin and she was out. I called Jeff and was thinking in the back of my mind "Please God -- I don't want to go to Hackensack." Anyway her fever went down Jeff got home that night and her fever was back up to 104.7, in a panic we called Dr. Evans. God bless that man within 2 minutes we heard back from him. He assured us that he felt we would be ok for the night not to rush to Hackensack load her up on Motrin and Tyleonol and he would see her in the morning. At this point we were all thinking UTI. So nose to nose her and I slept and the next morning off to Dr. Evans. Ears were clear, lungs clear, nose stuffy and what's this, white puss in her throat. Culture for Strepth (?spelling) and YEAH she had it. I know that sounds terrible but I burst out with a YIPEE when he came in and told us that. Now we had an answer to the fever. She more then likely has had it brewing. So we started Omnicef. Instead of 10 days were going 14. He is concerned that she may have a sinus infection also. He is suggesting that due to her constant congestion and no relief from everything and anything we have tried that we involve an ENT. We're all for it and once we finish the antibiotic we're going to see one.

Today she is fine, it took a couple of days to see her back to herself and she missed school Thursday and Friday but oh well. She did not get to go to the benefit dinner on Saturday. This is the same benefit dinner that was held in her honor two years ago. We were hoping to take her so everyone could see how great she looks. This year it was for Jeff's cosin's husband Rick Galando who was seriously injured in a truck accident. I went with Allie, my dad, Jeff's parents and Amy. Amy had a blast. She danced all night. Even if she was the only one out on the floor. She was spinning and twirling around. Made me a little teary eyed wondering if Sara will ever do those things.

This week so far was a quiet week. We have found that the magnet is working. Yes, I said working!!! She went three days with no Diastat. Which is great and means that the seizures she did have were mild and swiping the magent made them go away. We're thrilled to say the least. When the fourth day came and she did need the Diastat it was much more effective for her. I hate to jinx ourseleves but we have 6 un-opened boxes in the cabinet. A rare occurance for us. So praise God.

In the week prior to our last good one I was struggling with everything. Feeling very over whemled with Sara's condition. Why why why. Give her a break, cut her some slack, what's going on? How much can she take? You name it, I felt it.. Well I have this book called "It's not about me" by Max Lucado. I had vowed that I would give myself some down time every night when I got in bed. I would read my devotional and some of my new book. We'll I got lazy and wasn't reading. Last night Chapter 12 hit me square between the eyes and I wanted to share some bits and pieces of it with all of you. I would highly suggest this book for everyone.

It picks up with...

Your pain has a purpose. Your problems. struggles, heartaches, and hassles cooperate toward one end -- the glory of God. "Trust me in your times of trouble, and I will rescue you, and you will give me glory" (Psalm 50:15)
Not an easy assignment to swallow. Not for you. Not for me. Not for the blind man on the side of the road. When Jesus and his followers passed him, the disciples had a question.

As he (Jesus) passed by, He saw a man blind from birth. And His disciples asked him, "Rabbi, who sinned, this man or his parents, that he would be born blind?" Jesus answered, "It was neither that this man sinned, nor his parents; but it was so that the works of God might be displayed in him." (John 9: 1-3)

Born blind. A lifetime of darkness. Never saw a mother smile or a sunset fade. Who did this? The disciples wondered, anxious to blame someone. Such a bad plight can be traced back to a bad deed. Right? Wrong. Jesus replied. Don't search the family tree. Don't request a copy of the man's rap sheet. Blame the blindness on a call from God. Why was the man sightless? So "the work of God might be displayed in him."

Odds are, he would have prefered another role in the human drama. Campared to others, his assingment held little glamor.

"Mary, be a mother to my son."
"Peter, you'll be my first preacher."
"Matthew, the first gospel? It's all yours."
The God turns to this man, "And you?"
"Yes, Lord?"
"You'll be blind for my glory."
"I'll be blind?"
"Yes."
"For your glory?"
"Yes"
"But, I don't understand."
"You'll see."

It goes on... The blind man was the frame in which Jesus' power was seen, the stand upon which Jesus' miracle was placed. Born sightless to display heaven's strength. Do you suppose the sight if his sight showcased the work of Christ? And the fading pulse and final breath of Lazarus? You think the news of a three days dead man walking out of a tomb amplified God's power?

And you? Now it gets a bit sticky. What about your struggles? Is there any chance, any possibility, that you have been selected to struggle for God's glroy? Have you "been granted for Christ's sake, not only to believe in Him, but also to suffer for his sake." (Philippians 1:29)?
Here is a clue. Do your prayers seem to be unanswered? (yes) What you request and what you receive aren't matching up? (yes) Don't think God is not listening. Indeed he is. He may have higher plans.

Here is another. Are people strengthed by your struggles?"

God will use whatever he wants to display his glory. Heavens and stars. History and nations. People and problems.... A season of suffering is a small assignemnt when compared to the reward. Rather than begrudge your problem, explore it. Ponder it. And most of all, use it. Use it to the glory of God. Martin and Gracia Burnham did. During their captivity, they not only spoke of Jesus, they lived Jesus. Didn't complain. Did their work and volunteered for more. Chained every night to a guard, Martin always wished his captors a good night and told them about Jesus. The Burnhams allowed God to use their suffering for his glory.

Because of Martin's death, nations around the world heard the name of Christ. I heard the report on a London, England news channel. Millions saw the forebearing figure of his wife and heard a moving interview with his father, who said God would get them through this. Every major network gave priceless minutes to the story of a man who loved Christ more than life.

Through the Burnham's struggle, God was seen.
Through Martin's death, God was seem.
Through your problems and Sara's on going battle with Epilepsy, may he be seen as well.

Sometimes it's so hard to feel lucky to have been chosen for a role like this. But I have to admit until reading those words I had never thought of it that way. I will make it my mission every day to look at our assingemnt in life as a perfect opportunity to display Gods glory.

Be well.
Hugs
Barbara

P.S.
YOur Faith in the face of suffering cranks up the volume of God's song.

Sunday, October 30, 2005 3:02 PM CST

Lets just start by saying its been a rough week. Everyone has been sick. Last Sunday we put in an emergency call to Dr. Katz. Just love talking to him on the weekend -- thanks Dr. Katz for being the best ever. We had been seeing an increase in her seizures since the increase in the VNS. He felt that this was not a normal response -- of course Sara does nothing that you would expect :o) He told us to give her a boost of Phenobarb and call him in the morning or sooner if she was worse. We called the office on Monday and made an appointment for Tuesday. We all agreed that the Keppra does not seem to be doing anyting for her so we are in the process of coming off that. He also increased her Phenobarb a little. We have a script for blood levels but like he said they really don't matter. Sara lets us know if the medicine is working or not -- no matter if her levels are therapeutic. So we may not even go and get them done, haven't decided yet. Why put her through it if it really does not make a difference.
She went to school on Thursday only to get sent home with a fever and some flurry of seizure activity. By the time I got home from Amy's party with Amy who was also under the weather Sara's temp was 102.4. We gave her Motrin and called Dr. Evans. He wanted us to keep and eye on her and she was to see him on Friday. Of course on Friday her fever was gone and she was herself again. We went anyway. He started her on Rhinocrot nasal spray for her congestion and hopefully this will work. Getting the spray in her nose is a just about impossible but we're trying. Run the humidifiers and all that good stuff. So in the mean time Amy and daddy had both been under the weather and low and behold I went to the Doctors R In this afternoon and I have an ear infection so stay away from our house. Ms. Sara seems to be feeling better other then her constant stuffy nose but we're working on that. She'll be off to school tomorrow and hopefully we'll be going to Califon tomorrow night for the festivities. She may not be wearing her Care Bear costume though. For some strange reason it's going to be warm and she'll end up getting too hot which of course can bring on a seizure so we'll see. Amy is going to be a witch but a very happy fun witch. Her hat has purple (her favorite color) feathers all around it and she has a purple boa to toss around her neck. I'll have to post some pictures if we go.
So that's about it. Please continue to pray for seizure control. God bless and be well
Hugs
Barbara

Saturday, October 22, 2005 7:52 PM CDT

I just wanted to give a quick update on our trip to Hackensack on Wednesday. We had another visit with Dr. Laban to adjust Sara's VNS. She is now getting .75 volts of stimulation and she still continues to get this every 3 minutes for 30 seconds. When we swipe the magnet she now receives 1.0 volts of stimulation. If she happens to vocalize in any way at that moment man can you hear the vibration in her voice... it's creepy. We are three days out from the increase and there are moments when Jeff and I think that it may be too much for her. She has had some brief periods of coughing -- not a congested cough just an annoying tickle kind of cough. We were told that this is a side effect to look for. We were also told to keep and eye on it and it should go away, if not we would have to turn her back down. So we're watching her through the weekend and we'll see what happens on Monday. We are also noticing an increase in her seizure activity. Not only is she having more but some of them have been horrible. No concerns oxygen wise they are just very hard on her. It's heart wrenching to watch her go through all of this. We are still hopeful that the VNS will bring her relief and that it will work itself out (if that makes sense.) So for now that's it, please storm Heaven with prayers for seizure control. I can't help but worry how much can one little body take.
God bless and be well,
Hugs
Barbara

Sunday, October 9, 2005 9:43 AM CDT

Good Morning All:

Things have been busy and hectic here -- just like every other house in America I would assume. My update is that Sara is doing great. She seems to really be thriving in her pre-school disabled program. We have been so impressed with how far she has progressed in three short weeks with feeding especially. She is now accepting a spoon in her mouth and will actually open her mouth and lean toward the spoon. HUGE for Sara -- for the longest time she would only accept something if presented on your finger. She still has a hard time figuring out what to do with the food once it's in her mouth BUT she is making progress. She will immediately move the food around and if we're lucky she will swallow. She is even accepting liquids through her nosy cup. So needless to say we are thrilled.

We go tomorrow to the pediatrician for flu shots -- Amy has no clue yet. The contractor is supposed to be coming on Wednesday to do our sidewalk with ramp into the house. I can't wait, it will make getting her in and out of the house much eaiser. Saturday is Amy's birthday party and we're all looking forward to that. At the moment we are watching old home videos. Fun and sad at the same time.

So on that note I'm going to snuggle in on the couch with everyone. Take care and I'll update soon.

P.S.
VNS seems to be working. We have had some seizures go away with 2-3 swipes of the magnet. We go back next week to increase again.

Hugs to all
Barbara

Sunday, October 9, 2005 9:43 AM CDT

Sunday, September 25, 2005 1:46 PM CDT

Hey everyone:

Quick update -- we went to Hackensack last week and Dr. Laban turned Sara's VNS up. She is now getting .5 volts for 30 seconds every 3 minutes and .75 when we swipe the magnet. We really are not seeing much of a difference but our hopes are still high. We go back in a month to increase again. My next question is how high can we go? My hope is that we are still so low and that's why our response has leveled off.

We also saw Dr. Katz who is recommending Melatonin at night to help her sleep. Thankfully I have been so anal in keeping track of her seizures that I was able to show him that the majority of her seizures occur from 3-8 am. For instance this month she has already had 20 seizures 17 of them occured between 3-8 in the morning. We've seen them sleep deprive children in the hospital to get them to seize and if she's not sleeping can that be the reason she's seizing during the night?! He still belives it more of a behavorial thing -- meaning she's waking up and then gets excited and pushes herself into a seizure. I love him but I don't buy it. Example -- the first night we tried the Melatonin I heard her stirring around 3:00 am went in, she was sound asleep (thank you Melatonin) and she was seizing. So I don't know. It's so frustrating. The Melatonin seems to help her sleep but she's awake or sort of for the seizure anyway. I guess we just have to wait and see.

We stopped by to see Christopher who unfortunately was still in the EMU unit -- thankfully though he was going home that day after a 2 week stay. Lori (Chris mom) told us that Mary had also been in for about two weeks. Please link to their sites below if you have time and offer up some prayers and encouragement. I put Christopher in place of Angel Sadie but I will ask you to continue to pray for her parents as they try to adjust to life without her.

I saved the BEST for last. Sara did the most awesome thing this morning. I held her under her arms so her feet were on the floor and she PURPOSEFULLY stepped forward 5 times. It was WONDERFUL. I want to talk to the school about getting her the partial weight bearing gait training therapy. If she could support herself I have no doubt she would be walking. Praise God for those 5 steps they made my day.

Thanks for checking in on us and take care.
Hugs
Barbara

Monday, September 12, 2005 6:09 PM CDT

We got back on Sunday from vacation. We went away to the Jersey shore � Wildwood for 6 days. It was so nice to just be away. We were even able to relax a little bit. We spent a lot of time hanging by the motel pool. We really lucked out with the weather. It was absolutely beautiful. Our room was on the first floor and we could roll out our door and into the pool area so we felt a little spoiled. We did venture down to the beach on two occasions. We did not take Sara out by the ocean though. We were told not to take her Kimba system in sand and were afraid of ruining her smaller stroller and carrying her that far was out of the question. Amy and I tested out the ocean a bit � chilly and rough so back to the pool. Sara really seemed to enjoy herself in the water this year. We were excited to find that the transition from warm to cold did not effect her seizure wise this time. She slept great every night which had Jeff and I completely baffled. We are wondering if being out in the air all day and swimming a bit has anything to do with it. We are hoping to invest in an above the ground pool next spring if we can. I think it would really benefit her in so many ways. She was splashing and even kicking her right leg a bit which was great to see. She seemed to enjoy all the sights and sounds of the boardwalk too. As like last year the Harley riders came in the end of the week for their bike rally. What a sight to see. So many bikes it�s really pretty neat. She loves the noise. Amy on the other hand hates it but Sara would squeal and kick her legs. We got the usual stares on the boardwalk and just about every where we went. I tried to ignore them but it�s hard. I know she�s different to many people but to us she�s just Sara She�s exactly the way God made her and for us that�s perfect. When ever she would squeal for what ever reason -- usually delight, heads would turn and people would give us that sad puppy look and I often wonder why. Why do you feel sorry for us? I don�t feel sorry for us. I honestly can�t imagine my life any other way. She�s been the best thing that could ever happen to me � as a mother she gives me such joy. Joy that some people may never know. I made up small signs and had them on her Kimba system that had her web page on it. I was mainly thinking if your going to stare then why not check out her page and see what is really going on in her life. I really wanted to make up a sign that said �Please don�t stare at me � I�m just the way God wants me to be. Maybe you�re the one that�s different.� Anyway I�ll get off that ban wagon. For now :o)

She had her first day of school today. I was nervous yet very excited for her and the possibilities for growth that lie ahead. Nancy (her nurse � who we absolutely love, what a gift from God) was right on time and once we got the car seat situated in the bus with the shool PT they left here a little later then they should have, I think it was about 8:45 but I guess that�s to be expected for the first day. I held off calling to check on her until around 11:00 and then I just had to know. She was just fine. She got home around 2:00. It sounds like she had a great day. I think most of the time was just Sara and Nancy getting their bearings on where to go and what�s happening when. Making sure equipment is fitted properly -- that kind of stuff. I�m sure they�ll be pros by the end of the week. Thankfully no seizure activity. I was a bit nervous this morning because she had some twitches and such early in the morning and I was actually praying if its�s going to happen let it happen know but it never did come. Which makes us just as happy.

We go back to Hackensack on the 20th. Visit with Dr. Katz and then on to Dr. Laban to turn up the VNS again. Very anxious to do that and see what happens. Keeping our fingers crossed and praying for good results.

So I think that�s about it for now. Amy has her first day of preschool tomorrow. Hopefully she's so excited I won't have a hard time with her at bed time tonight. What will I do with no kiddies in the house. It was hard enough without Sara this morning let alone no Amy tomorrow. I�d better make some extra coffee. Wish daddy and me luck. Thanks for checking in and thank you for all the kind words in our guest book �we really enjoy reading your entries. As always hugs to everyone, God bless and be well.

Sunday, August 21, 2005 2:28 PM CDT

We�ll we had the VNS turned on last Wednesday. I was all worried about nothing. I kept having these horror movie moments about what was going to happen when they turned it on. I�ll spare you the details. We got to our appointment early and for the most part they were ready for us, which was a pleasant surprise. I�m sure like most of you we are used to waiting .... and waiting. Dr. Labon (? Spelling) came in answered my questions, tested the unit, turned it on and that was it. She is at the very least amount 2.5 volts for 30 seconds every 3 minutes. We only had to wait around a few minutes. That said I had planned on sticking by the hospital for a few hours (just in case). So we headed to 3 Conklin and caught Joyce (one of our favorite nurses) chatted with her and then headed to the cafeteria for some dinner. We�ll low and behold I was getting some fruit with Amy when my niece Allie started calling me � Sara�s having a seizure. I swiped the magnet a total of three times and I�ll be damned if it didn�t go away. WHOA !!!! So here we are five days later and so far this is what we are noticing. If we catch one of her seizures before it really gets going and swiping the magnet about 3 times total seems to help it go away without Diastat.
But, if she is having a really strong intense seizure the magnet does nothing. We�ll I say that and yesterday morning she got Diastat and I swiped the magnet anyway and I would say it slowed down quicker. That said though, she had not had Diastat for a couple of days so I don�t know if it was that or not. Anyway... I would have to say that so far I am very hopeful that we are going to see some relief with the VNS. We have an appointment next month to go back to Dr. Labon and she�s going to turn her up some more. My thinking is if we are seeing something from this small amount of voltage what will we see from more. So I added a line to our daily chart and we�re keeping track of everything... only time will tell.

The incisions are healing nicely. She reaches and scratches at the incision on her chest. It�s hard to tell if it hurts or just itches from healing. She�s such a trooper.

I was so excited to report last entry on the VNS that I can�t believe I forgot to mention Sara�s birthday. She turned three on the third and we had a family party on the 6th. We were blessed with a fabulous weather day, thank goodness because Sara can not tolerate the heat. Everyone seemed to enjoy themselves and Sara even attempted to eat a cupcake. We�ll she got it in her mouth but was not sure what to do with it at that point. The picture was cute anyway.

So I think that�s really it for the update. Please continue to pray for success with the VNS. Also if you would please check on our friends sites � they could all use some encouraging messages. Thanks.

Wednesday, August 10, 2005 12:54 AM CDT

Hey everyone:

The VNS surgery is finally over and done with. She did just fine :o) We left the house Monday morning at 5:30 am, she was in with Dr. Fried by 7:45 and it was over by a little after 9:00. We are so thankful to have yet another surgery behind us. She has two new scars to add to her little body. I will be the first to admit that I was very nervous. Dr. Fried chuckled when I told him � you�ve been through a hemispherectomy and your nervous over this � it was a walk in the park for him. I guess when you compare the two surgeries yes this was a walk in the park but it�s still difficult to kiss your little one in the operating room and walk away. That said Dr. Fried did just what he promised and took good care of her and for that we are so grateful. We will be going back to Hackensack next Wednesday to have it turned on. We are praying for any kind of positive reaction for her. We are still praying for the miracle but we�ll take any sort of break in her seizures. Lately she has not been having as many but when she does get hit with one (still everyday) they seem so much more intense. Her breathing is more labored and it just seems to get such a hold on her. It�s scary and it just plain sucks � no other word to explain it. Her little body goes through so much on a daily basis and I have to be honest and say that it all worries me. So I�m begging you to please pray for a positive reaction from the VNS when they turn it on next week.

Amy is having a hard time with all of this � for a 4 year old she understands more then we give her credit for. She was upset that Sara was going back into the hospital for another surgery. She had been asking me over and over again why � what for, are you staying. As her mom I wanted to shield her from the truth and thought about not telling her but in the end I was honest and told her why she was going in and what we are all hoping for. We�ll yesterday we had to run out on a quick errand and on the way home Sara had a seizure. I had to pull over and give her Diastat. Amy asked what was wrong and I told her Sara was having a seizure and she got so mad. She screamed �Oh man mom.... that thing didn�t work.� So you see she gets it. I then had to try and explain that the magnet had not been turned on yet and that didn�t work so I finally just said that it takes time and time and faith are what we are going to have to give her right now. That was followed by �Can we get McDonald�s?� Out of the mouth of babes :o)

So here we are at home just kind of vegging out. Sara�s resting a bit and Amy is drawing a picture. Thanks for checking in on us and continuing to pray of our sweet Sara.

Please continue to lift precious little Sadie�s family up to the Lord during this very difficult time.
My heart aches for them.

Hugs

Sunday, August 7, 2005 11:31 AM CDT

I went to check on our little friend Sadie Grace this morning -- She reminds me so much of my Sara. I am so sad to update that she went to be with Jesus. She was so young, too young and had been though so much. It just breaks my heart. Please pray for her family.

It's so hard to watch your children suffer so much like many of us parents do. It's hard not to question why, why, why? All we know is that we have to have faith and sometimes we only hold these little ones for a short while but they will hold our hearts for all eternity.

Thanks
Barbara

P.S
VNS surgery tomorrow morning -- I will try to update when I can. Please pray for her.

Tuesday, July 12, 2005 2:28 PM CDT

Hello everyone

We have a new surgery date for the VNS -- August 8th at 7:30 in the morning. We're the first case of the day. Yeah !! She's doing much better as far as her cold symptoms are concerned. Hopefully we can keep her that way and get the VNS done this time. No over night stay -- in and out in one day.

She has been so happy lately and its so nice to see her smiling again. Not a whole lot to up date on -- she's had a break from therapy. Our OT just had a baby boy -- congrats Danielle. Out PT is on vacation so it's just been feeding/speech with Mary on Thursday's. Our very last therapy session will be on Tuesday August 2. The day before her 3rd birthday. It may sound strange but we are looking forward to the break before school starts in September. Early intervention has been wonderful for us -- but it's been going on for so long and we are really looking forward to some FAMILY alone time. We are planning to go back to Wildwood, Labor Day week. We even extended our stay a bit this time. It will be nice to go away and veg by the pool.

We did finally find out that the back brace we had gotten her for scolosis is not necessary. This made Jeff and I a bit discouraged to say the least. We were told by her neurologist and peditrician that Sara has neuromuscular scoliosis which is from weakness on one side -- which makes perfect sense knowing Sara. Dr. Katz had mentioned to us on our last visit that most children with this kind of scoliosis do not benefit from a brace but we should find out a percentage just to be sure. So our pediatrician contacted a well known pediatric orthopedist in East Brunswick who said that even though Sara is not his patient -- just by hearing her history he would agree she more then likely has neuromuscular scoliosis and would not benefit from a brace. If anything we have found that the brace hinders her. It sets her back. She was sitting on her own but with the brace on she can not hold her self up at all. She can barely roll over. We're upset that our so called orthopedist with Hunterdon did not say that she had neuromuscular scoliosis and why did she not mention that bracing more then likely will not help. Problem is that our orthopedist is on maternity leave and has no one covering for her. So we have decided to go see this guy in East Brunswick and get his true opinion on Sara. UGH !! Here we go introducing another doctor.

We also had a vision follow up and she is getting glasses. Her right eye is not bad at all but her left is horrible. She barely can see anything with it. Our hope is that once she gets the glasses on and realizes she can see better then maybe she will leave them on. It's hard to say. She will never have perfect vision with the left eye beacause of the damage to her optic nerve but the glasses will improve it for her. We should be picking them up some time this week.

Gee for not having much to say I sure managed to ramble on. Thanks as always for listening and for checking in on us.
Until next time -- God bless and be well.
Hugs

Tuesday, June 28, 2005 8:44 AM CDT

We canceled Sara's VNS surgery for tomorrow. She had a fever over the weekend and has just not been herself since. So instead of rushing into the surgery we decided to cancel it and give her some time to get feeling better. I will let you all know as soon as we get the new date. Thanks as always for checking in on us,
Love and Hugs

Friday, June 24, 2005 5:26 PM CDT

Just signing in for a quick update. I should be typing this from the hospital but I am not. Our insurance company screwed everything up and ought to be completely ashamed of them selves. They denied Sara's Video EEG monitoring. Her doctors wanted her to be admitted yesterday for monitoring until the VNS surgery next Tuesday. The reason being is they wanted to see if her seizures are coming from the edge of her hemispherectomy that was done two years ago. If they are then there is always the possibility that they could go back in and take out more tissue. We'll the stupid insurance company CIGNA felt that this was not medically necessary. Finally one of Sara's doctors got the long awaited call from the so called medical director with Cigna and at the very last minute they ok'd her for three days of monitoring. Unfortunately everything on our end had been cancelled at that point and we could not go in. I was on and off the phone all week with Terry from Dr. Fried's office. She relayed the message to Dr.'s Fried and Lancman that regardless of what the video eeg would have shown we would have wanted to try the VNS first. Our hope is that the VNS will greatly improve the control over her seizures. If that happens then there may be no need to go back in and put her through another brain surgery. They agreed that this would be a good thing to try first so we are scheduled for the VNS surgery on Wednesday June 29th at 10:15 in the morning. We should be home that night -- it's a same day surgery. If God forbid we do not get results from the VNS we will now have more leverage with the insurance company for video monitoring. I won't even go into how stressful this has been for all of us. We are just thankful at this point that we can still move ahead with the VNS as planned. We are praying for greater seizure control, and if God willing we are praying for a miracle. No more seizures.
I'll be in touch after next Wednesday.
Again thank you all for your support and prayers. We really need them and are so grateful for all of you. Your messages in the guestbook help to keep us going. Your e-mails and e-cards are greatly appreciated also. Thanks for keeping our little girl in your prayers.
Love and Hugs
Barbara

Monday, June 13, 2005 2:17 PM CDT

I know it�s been a while since my last update. Quite a bit has happened. Sara is confirmed to start the preschool disabled program in our district. Having met with the therapist and seeing the program that they have designed for Sara we are very excited for her to get started. She will have her own personal nurse, that will come to the house in the morning and ride the bus with her to school, stay with her through the day and then come back on the bus. She will be getting all the therapies she needs including feeding therapy every day. We met with them again last week and they are ordering the equipment that they need for her. There has been some concern about her G-tube but we seem to have those kinks ironed out and I would rather not get into that right now. Early intervention will stop here at the house, I believe the day before her third birthday which is August 2. We have decided as a family to take the month of August off. WE ALL need a break. She�ll start school on September 1st (I think). We may be going to Wildwood again the first week in September for vacation so her and Amy may miss their first day of school. We figured since they are still little that it wont matter. Amy will be in pre-school one more year, she misses the cut off date for kindergarten so we�re not worried about it.

We are hopefully all set for the VNS. Dr. Fried�s office had to move her so as it stands now she is set to go in for her MRI and admittance on June 23rd. The surgery is set for the morning of the 28th and we should come home on that day. The only bump we are running into now is she�s sick. She has what we assume is allergies but now she has developed this croupy cough. She�s going to the pediatrician for a sick visit tomorrow morning. She is also supposed to see him on Thursday for her pre-surgery check up. The office said chances are he may not clear her. So we�re keeping the Thursday appointment and crossing our fingers that she�ll be getting better by the end of the week. If not we have until the middle of next week for another pre-physical. It�s just so frustrating. We think we�re moving in the right direction and something always knocks us off track. I�ll let you know what happens after her Pediatrician visit. Pray she gets healthier quickly.

We picked up her back brace this morning. She looks uncomfortable in it but doesn�t complain. I had to fight back tears in the office. When we got her in it, adjusted and in her stroller she looked and reminded me so much of my mother. Mom had a back brace from one of her surgeries and had that same look on her face as Sara did. Everything about the moment upset me. I fought tears all the way home. It�s been a year since mom was admitted to the hospital and it�s all coming back to me. I miss her so much and moments like this just seem to slap me in the face with the reality that she�s really gone. Jeff told me to face the facts � she has a lot of grandma in her. If you knew my mother you know what he means. It one sense that makes me laugh but in another sense it makes me cry.

Sara�s sleep patterns are completely screwed up. She been waking up every night for about a month now if not longer anywhere from 2-3 in the morning and then she is up for hours. She�s not mad or anything she�s just up. Most of the time she ends up having a seizure and Jeff and I are wondering if she wakes up because she senses it coming on??? We have an appointment with Dr. Katz on Friday. He thinks it�s her meds and he wants to go over things. So we�ll see.

Oh great update on her feeding. She seems to all of a sudden be making some progress. Purposeful lip closure and swallowing. It�s fabulous. We are delighted. She�s even making great progress in her gait trainer. Purposefully moving one foot and then the next. We got her ankle brace this morning also and that should help her even more. I had a dream the other night that I was holding her hands and she walked down the hallway. Someday, someday....

I know personally my faith is wavering. I�m really having a hard time holding onto the Lord right now. I believe Jeff is too. It�s so hard to watch Sara suffer like she does everyday and not question why it�s happening. So many people sail though life without a care in the world and this poor child can�t cut a break. I wanted and needed to go to church on Sunday but Sara was up from 3-7 am and it just knocked all of us for a loop. I�ve been tracking her seizures since just about day one and looking back at the same time last year � there�s not much difference. We average anywhere from 30-40 seizures a month. Why?? I�m trying to pray and I know there are reasons but it just doesn�t make what she is going through right now any better. As much as I want her to have the VNS I am horrified to be going back into the hospital for a stay. All that time she spent there in the past is just to fresh in my mind. The fear of something going wrong � the fear of the unknown. So I would ask that you would please pray first and foremost for Sara. For healing and for the VNS to be the miracle we are hoping for. Also for our faith � for a closer stronger walk with the Lord.

Love and Hugs
Barbara

Monday, May 16, 2005 4:17 PM CDT

This morning I took Sara back to the Orthopedist. Her scoliosis has worsened. She had a 15 degree curve last year and now she has a 35 degree curve. They are taking care of the paperwork for us and as soon as I hear back from them she will have to be fitted for a brace. Dr. Tarreco called it a supple C curve in her spine at the moment. Since we are catching it early we should be able to get a hold of it with a brace. She'll have to wear this brace at all times unless she is in bed sleeping. For the most part when ever she is in an up right position. The long term concern of the curve would be that her organs can shift to the side and the curve could become more permanent, requiring surgery. This would take a while to occur but we certainly do not want any of those things to happen nor do we want her to endure back surgery some time down the line. We just can�t help but feel like this child can�t cut a break. If it�s not one thing it seems to be something else. Last week her face was so inflamed from Excema she looked like a tomato. After a trip to the dermatologist and two skin creams later she looks like a million bucks. Of course a routine follow up trip this morning and two x-rays later we�re discussing a back brace. UGH !!! It just breaks your heart to watch your child go through so many things.

We are all set for the VNS surgery next month. We are confirmed to go in on June 16th, have the MRI in the morning and get admitted after ward. She�ll stay over the weekend to be monitored by video EEG and is scheduled for the VNS surgery the morning of June 20th. We should be home in our own beds that same day.

We�re still waiting on the district to decide what�s going on with schooling. At this point Jeff and I do not know what the right decision is. The district is willing to design a program just for her and give her exactly what she needs. They were interviewing nurses last week so I need to follow up and see where their at with that. The one thing that keeps going through our minds is that if she stays in district she will be in a class of about 6-8 students. She will most likely be the most needy child which could result in more one on one attention for her. If she were to go to Matheny she would be one of 8 students that need just as much, if not more attention then her. So would she be better off in district? I don�t know. I have to admit that after speaking with the therapist in district Jeff and I are feeling much more at ease with what they can do for Sara so we�re just waiting. Give it to the Lord, right? Let go and let God.... struggling with that.

We need to start addressing the issue of our front porch. We�re going to have to build some sort of ramp or something for me to start getting her in and out of the house in her stroller. She�s just getting to be too heavy for me to carry all the time. She�s just about 40 pounds but unlike your average child she does not understand to hold on. She has a hard time wrapping her legs around my waist and is too busy trying to get my hair or arch ber back too try and hold onto me. So it�s tough getting in and out. We�re hoping to also add some sort of sidewalk across the front yard over to the driveway to make it even easier for us. But for now we�re managing.

Our pastor was preaching from the book of James on Sunday. It always seems that even if I�ve missed a couple of weeks that he preaches right to me. At least it feels that way. Pastor Barry if your reading this I almost blew raspberries at you during the service :o). This past Sunday I have to admit I was in no mood to hear the following verse.

James 1: 12
Blessed is the man who perseveres under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love him. The verse goes on but that�s what sticks in my mind, then of course we have the following...

James 1: 2-
Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish it�s work so that you may be mature and complete, not lacking anything. If any of you lacks wisdom, he should ask God, who gives generously to all without finding fault, and it will be given to him.

I understand that we all have trials and tribulations in our lives and if you hold fast to the Lord and stand strong he will see you through it. He has seen us through so many lately. I also understand that it builds your faith... I know he has been working on building mine and Jeff�s. He�s still the carpenter :o) It�s just so hard sometimes to do that. It�s hard not to question God and wonder why is he doing all of this? Why are these things happening to Sara. I have seen her situation first hand give glory to him and for that we are blessed and in awe that he would chose her for that. I have seen so many people touched by her and her little life but I have to be honest with you. That does not make going through it with her as her parent any easier. So on that note let�s all stand strong together. Sara, her friends and their families need your prayers. Thanks for caring and for checking in on us. Till next time.

Hugs.

Saturday, April 30, 2005 8:15 AM CDT

Really quick update this morning. We FINALLY heard back from her doctors about the VNS. She is a canidate for the surgery. YEAH. We're going to try and set it up to go in on June 16th, have an MRI, be admitted for Video EEG monitoring and then have the VNS placement on Monday June 20th and come home on that day. We will know for sure on Monday if that date works.

We could have done it sooner but this way Amy is done with school and we should have everything ironed out by then on what Sara's school situation will be.

One last thing. Please pray for Jeff's cousion June and her husband Rick. He was severly injured in a truck crash last Wednesday. He is in critical condition and needs your prayers for healing.

Hugs to all.

Tuesday, April 12, 2005 5:34 PM CDT

Hello everyone:

Just a quick update. We went to meet with Dr. Fried and Dr. Lancman last Thursday about the possibility of Sara getting a VNS. In all honesty having discussed it with them there really is no reason not to try it. It's an invasive procedure. She would go to the same day surgery unit in the morning and she would come home that afternoon. That is provided they do not want to Video EEG monitor her first, which is a possibility. The great thing about the VNS is that there are no adverse side effects like that with Anti-convulsant medications, ie; sleepiness etc., The doctors are going to have a meeting this coming Thursday and they are plam to discuss Sara's case so I will know more on Friday. They told us that 1/3 of the patients have a great response, 1/3 have a fairly good response and 1/3 do not respond at all. So basically she has a 2 out of 3 chance to respond in some way. So I'll let you know when I hear back from them. Keep your fingers crossed.

Meeting with Dr. Katz today and he feels that the VNS would be a good thing. He's the one that suggested it. He did increase her Keppra a tiny bit to see if we get any response. He suggests that we get an MRI before the VNS just to see if any of the brain tissue that was removed two years ago has grown back. Apparently that can happen. It's not scar tissue it's actually part of the brain, if I understood him right. I hope that has not happened or else we are looking at a completely differen't can of worms. Not exactly a can of worms that I want to open again either.

We went on Monday to tour the Jerry Davis school as per a request from our district. We didn't care for it compared to Methany. Big issue is they do not have an extended school year and that's importnant for Sara. Some of the therapist from the district will be coming out to our house in the next week or so to observe her with her home therapy. We seem to be getting the ball rolling with that thankfully and then we can get back together with the district to decide what's best for Sara.

Alright I hope I made some sense, I'm rushing a bit. Please pray for little Mary, she's being hooked up for monitoring this weekend. Check out her site below. Thanks as always for your love and support. We don't know what we do without all of you.
Hugs to all

Saturday, March 26, 2005 9:07 AM CST

Happy Easter Everyone:

Not until I was an adult, and a little farther along in my Christian walk did I fully understand the meaning of Easter. Thank you Jesus, thank you for giving your life and paying our sin debt so that by excepting you as our savior we may have eternal life with you.

We went to see the Methany school in Peapack on the 18th. WOW. This is were Sara belongs. I remember walking into the preschool in our district and thinking this a preschool. This is too far above her level, they have nothing for her (equipment wise) it was discouraging. But, walking into Methany was like... ahh this is it. This is were she needs to be. They have everything that she needs. Our district has no equipment for her, none of the things that she is already using and Methany had it all. They had gait trainers, standers, rifton chairs, specialized feeding chairs, computer programs and so much more. The class room was set up and ready to go for therapy. She would be there all day 10-4. Her day would be structured around therapy... everyday. The district talked like she would get therapy on certain days. She�s a sponge right now, she needs to be bombarded with therapy.

As you all know Sara�s seizures are our concern. Keeping her safe and making sure she gets Diastat when she needs it. In our district they have one nurse to 400 students, that won�t cut it. At Methany they have two nurses to 25 students, so basically 1 nurse for 12 students. We like those odds better. Our doctors and Jeff and I would still like her to have a nurse with her. While we were touring the facility Sara had a seizure and everyone was able to see how suddenly they hit and that there is no warning. The administrator told me that what they do is ask for her medical records (already on the way) from our Neurologist, Neurosurgeon, Epileptologist and Physician. Their nurses go over her information and then they decide if they think they can safely handle her, if not they advise that we get a full time nurse. I was so glad that the social worker from the school went with us to tour Methany. This way she got to see first hand all the things that the school can offer Sara and all the things that they have in place for her already. It definitely seems that the one thing the district is hung up on is the nursing situation. They feel that it will be easier for them to find a nurse to ride the bus with Sara and then stay with her during class which would make keeping her in district work. They feel that they will have a hard time finding a nurse jut to ride on a bus with her which may be the case if she goes o Methany, unless Methany agrees that she needs one with her at all times. I mention this because the social worker walked out to the car with me and mentioned this fact again. I did let her know that we do not feel that is an adequate reason to keep her in a program that is too advanced for her. We would be more then willing to transport her back and forth to Methany if we had to until they found a nurse for her. She also asked how I felt about Sara not being able to interact with �normal� children. This struck a cord with me for two reasons. # 1 are they saying that they have basically �normal� children in their special needs class. # 2 do they honestly think looking at Sara that socializing her is top priority. I told her that we are not concerned with �main streaming� her just to have her with �normal� children. They need to look at the big picture. Sara is going to be three years old and cognitively she is about 9 months, She has a lot of catching up to do. She needs to be bombarded with therapy. She gets socialized... She has a sibling, she goes out to the store, church, family functions, the kids in Amy�s preschool love her. I hope I�m making sense I know I�m rambling and bouncing all over. One of the sweetest things happened while we were at Methany. The administrator was pushing Sara in her stroller and we came across a little boy who was five and he was in a wheel chair. He obviously did not want to do what the therapist were asking him to do so they wheeled Sara in front of him face to face. When the two of them locked eyes they both started squealing and reaching for each other. I of course started to cry. It was so touching to see her interact with another child that way. That�s what she needs. It was like they were understanding each other. He would vocalize and she would respond back to him. I don�t know if that�s what anyone would consider �normal� or not but it�s what I think she needs right now. Maybe a few years at Methany is all she would need to be ready to stay in district.

So now we wait. Of course the district is on Spring break, not Easter vacation but Spring break, sorry had to put that in there. Their therapist want to come to the house and meet with our therapist and then we get back together and they tell us what they think is best for Sara. They hope to have a decision by the end of May early June. Oh another thing is that our district does not have an extended school year where Methany does. What that means is that early intervention stops on August 2, Sara would have to wait until 9/1 to go to school in district, that�s four weeks for her to lose ground and everyone knows that she will. Methany could start her on her birthday August 3rd. I know I may be upsetting some people but hands down the district can not provide for her. She can�t go four weeks without therapy. I mentioned that to them at our meeting and wanted to know what they could do for her over the summer and I was told that they are on vacation then. Oh, I see, so the child you think you can help gets nothing during that time. Hmm, makes sense. Sorry, I�m just so anxious to get this process over with and I hate the idea that we have to go through this stupid paper pushing when to me, yes I know I�m her parent but it�s so obvious what would be best for Sara. Why are we wasting time with paper work. I know I know they have to legally but then please don�t drag this out for two months, it�s torture on parents.

Ok enough about that it�s just too upsetting for me. I�ve been told by friends that I am anal and too organized so I guess this is my own nature biting me in the butt. What�s wrong with a little organization?

Sara�s seizures.... not good. We don�t seem to be making any progress in getting a hold of them. We are going to go speak with Dr. Fried and Dr. Lancman on April 7th to discuss the VNS. That�s really weighing on my mind. I can�t bear the thought of going back in the hospital. I was reading another little girls page the other day and her mother was talking about being in the hospital again and oh gosh it all came flooding back. The smells, the sounds, everything came back. All the time we have spent there all that she�s been through in her short little life, it just plain stinks. Of course the other day when I was having this why Sara why our child moment, the Lord hit me. My devotional for the day was the question should not be �why Lord� but �What Lord?� What can I learn from this situation and how can I serve you during this time. Ouch !! I�m trying, I really am, it�s just one of the hardest things, as her mother to deal with every day. I�m missing my mother something fierce. She couldn�t take all this away for me and for the most part she didn�t really understand what was going on with Sara. But, she could hug me and tell me that she loved me and sometimes that all a child needs. Moms have a way of making things better just with their presence. I love you and I miss you mom, your with me in my heart always.

On that note, take care of yourselves and praise God for what he did for us on that Good Friday and for the empty tomb on that blessed Easter morn so long ago. I love you all and thanks for listening. Hugs

Sunday, February 27, 2005 2:22 PM CST

Hello all:

Happy Sunday afternoon. I hope this update finds all of you in good health and spirits.

I wish I could update you all that Sara�s seizures have gotten better. They have not. She had one every day this past week, some days 2-3. It�s so frustrating. I wish we knew what was causing them, like a smell, or something in the house... anything... But we don�t. Jeff and I had a talk and we are both concerned that she is quickly progressing toward the VNS (Vegas nerve stimulator). Tomorrow morning I�m going to call and make our follow up visit with Dr. Katz. He will be one of the determining factors. I don�t know maybe we could try another increase in her medication. We just want what is best for her and I don�t know what that is. I�m really trying to hold onto my faith in knowing that the Lord has a plan for her. For some reason I keep running into this quote �Sometime the Lord calms the storm. Sometime the Lord lets the storm rage and calms His Child.� Do you think that�s divine intervention ??? Hmmmm....

We had our transition meeting with the township last Wednesday. In a nut shell we tend to think that the district feels that they could handle Sara. Let me back up a minute for those of you that have no idea what I�m talking about. Sara receives early intervention through the state here at home. Which means she receives physical, occupational, speech/feeding therapy. She is only entitled to receive this at home until her third birthday. Then she goes into a preschool program designed for special needs children. This program is also funded by the sate and every district is mandated to have something in their school systems for these children. If the child stays in the district the school does not pay anything (I think) but if the school district can not handle a child�s needs and they need to go outside of the district to a special school then the district must pay for the schooling and transportation. I also believe that the districts get money from the state solely for this purpose. We�ll our district seems to be leaning toward the fact that they think they can handle Sara. Jeff and I are already getting our undies in a bunch and thinking that they can not. She has too many issues for them. Not only are her seizures not controlled by medication but the school has one nurse for the whole school. So hands down she would need her own nurse to travel on the bus with her and be with her during the day. I�m sure the facility is adequate (as stated to us) but not for nothing, this child has been to hell and back and we don�t want her to have adequate. We want her to be able to thrive in this environment. We want her to learn to walk, talk, eat, sit up all those things and more. Like I said earlier we may be jumping the gun and they may decide to send her out. We have another meeting at the school with about 4-5 other people to decide if she needs an evaluation and then we have to go back again for that evaluation and then we go back again and they tell us where they think she should go. This process seems so drawn out and just plain ridiculous that someone looking in from the outside has the right to decide what�s best for your child. We have the first meeting on March 10th and then either on March 11th or 18th we are going to the Metheny School in Peapack to tour their facility. The nice thing is that the school social worker is going to go with us. We�re hoping maybe she would see that this is a better place for her. At least for the first year. We�re not saying she has to go their forever but give her the best first year she can have. Give her the things she really needs right now. I�m sorry, I rambling... What I�m asking all of you is to pray for us. Pray that the district would make the best decision based on Sara�s medical and physical needs not based on money. Please also pray for peace, I�m going crazy just waiting for this meeting, thinking of all the things I�m going to say and I don�t even know what they are truly thinking yet. Satan is working on me and getting me worked up over what possibly could be nothing. Jeff keeps telling em to relax and not worry about it but I can�t help it... it�s that momma bear syndrome kicking in.

So that�s it for now. Please continue to pray for control over Sara�s seizures. One more request, check in on Sara�s friend Kristin below, she and her family need your prayers and support right now. Thank you as always for loving our little girl. God bless and be well.

Hugs to all

A prayer for protection
The light of God surrounds me; The love of God enfolds me; The power of God protects me; The presence of God watches over me. Wherever I am, God is.
James Dillet Freeman

Monday, February 14, 2005 4:39 PM CST

Hello everyone:
Happy Valentine�s Day... Daddy hit a home run today and had my favorite flowers delivered to the house � tulips. They are beautiful. The girls and I got him a box of candy. Amy proceeded to whisper what it was to him before he could get it unwrapped. She was a little excited, and if you know Jeff you would know that so was he :o)

I had to take Sara to a Podiatrist this afternoon. She has an infected ingrown toe nail. I swear if it�s not one thing it�s another. Interesting though, I had no idea that in-grown toe nails can run in families. Thanks daddy :o) Anyway he cut it out, she cried for a second and that was it. Quickest doctor visit ever.

Her seizures seem to be out of control again. We are positive it is the antibiotic she is on for the double ear infection she had last week. Thankfully she gets the last dose tomorrow. Despite that I called Dr. Katz this afternoon to ask if there was anything I could give her to get her over this hump. His first suggestion was Ativan, which I told him we had none of and besides in the past it has done absolutely nothing for her other then irrate her. Unless she gets that stuff through and IV it�s useless for her. Her liver pumps iron !!! So other then knowing that she will be getting more Diastat we can give her an extra dose of Phenobarb. So I did and we�re just waiting it out. I find myself getting so annoyed at these seizures. It�s so hard to watch her go through this all the time. Despite being used to it and having a drill we go through every time she has one it doesn�t take away the fact that she�s our child and we just want to make things better for her and stop these darn things. I did think that we had seen a slight improvement with the Keppra increase as I had mentioned in my last update but then she got sick so now we have to wait for the antibiotic to get out of her system. So we wait � seems like all we do is watch and wait.

Good news to report though, she�s been getting better with her cup. She actually swallowed for me six times the other day. I can�t wait for Mary to come on Thursday so we can hopefully show off for her. Mary is Sara�s feeding therapist. Today on the other hand she hasn�t been to interested so we�ll WAIT and try again tomorrow.

So for now that�s it. We hope that you are all doing well and thank you for checking in on us.
Love and Hugs
Barbara

Thursday, February 3, 2005 5:10 PM CST

Hello everyone:
I know it�s been a while since my last update. I guess that�s good though...we�re keeping busy.

We went to see Dr. Katz this morning. Jeff and I have to both say that we came out of the office feeling like we had a solid plan to hold on to. We tend to gab a lot, ok I tend to gab a lot with Dr. Katz and sometimes feel like we have nothing set in stone with Sara. Let me take that back, NOTHING is ever set in stone with Sara but sometimes we feel so up in the air. We have been hearing for over a year now that we are still in the recovery phase and that her brain needs to settle down and heal from the surgery. Which is the possible reason that we are still seeing seizures almost daily. Not today though � Dr. Katz had a plan. Let me back peddle for a minute � I�m so thankful for our computer. It has allowed me the ease of keeping track of Sara�s seizures. I made a chart the other day to take to Dr. Katz. It was able to show him how many seizures she has had each month since July 2003 and how many times she needed to have Diastat. So the nice thing is we can see how much she has progressed since then and the sad thing is we can see at times when she has fallen backwards. Our worst month was this past October when she had 52 seizures. I know 52 sounds like a lot but when you think back to how she could do that in a day way back when this is such and improvement. The best month was last March when she only had 16. What makes one month different from others � Good question, unfortunately there seems to be no answer.
So anyway he thought the information was great and agreed that she has improved tremendously. Just the fact that she is so alert, interactive and just plain happier is huge for all of us. The plan is to increase her Keppra. Technically she is on next to nothing as far as her meds go. She is only on two anti-seizure meds now, two I know WOW... This compared to 4-5 plus Diastat as needed. So we�re delighted to have her off some of them and she has most certainly come around because she is not so dopey from them. Off track again, sorry. So we�re going to continue to keep track of her seizures and go back to see him in 2 months. Hopefully we will have seen an improvement. If we have not then we will look into the possibility of getting her a VNS. What that is, is a as Dr. Katz described it, is a thin wire that is wrapped around the Vegus nerve in her neck and this is connected to a magnet in her chest. When she has a seizure we would swipe this magnet and it some how sends a signal to her brain and the hope is stops the seizure. Some people do really really well with this device and some don�t. We know of some children that have the VNS already and seem to be doing well with it. I�m not saying that we�re going to have to do this, hopefully the increase in her Keppra will help. So we�re going to pray that the Keppra increase is the key to getting a better handle on her seizures.

We will do anything, and everything that we can for Sara and we would definitely do the VNS if it was warranted. The funny thing was today we got to Hackensack about 45 minutes early and decided to pop into the hospital to say hello to our friends in 3 Conklin and all the emotions hit me like a brick. Walking down that long corridor, looking up at our old room window, getting off the elevator and just smelling all those hospital smells again... Too much for mommy to handle. We spent 103 days in that hospital and I�m not ready to go camp out again. I know I�m jumping the gun and we may never have to do it � it�s just the thought that scares the hell out of me. So please pray that the Keppra increase works for her.

So anyway that�s the scoop on that. The end of this month we start looking into school for Sara. She will only get Early Intervention at home until she is three which will be August. So about six months before that they start the process of looking at school systems for her. I know I talked about this once before and I�m so scared to let her go. I know her going to school will be the best thing for her it�s just hard for me to let go of that control. We know that more then likely she is beyond what our school district can handle because of her feeding tube. We are hoping that we can go to the Methany (? Spelling) school in Peapack Gladstone, which is about 20-30 minutes from our house. All the others are much further away. We have heard excellent things about this school and are planning to visit and check it out as soon as we can. I�ll keep you posted on how all of that goes.

We�ll Sara is ready to get out of her chair so I had better go. Please pray for Sara�s friend Mary (you can access her site below) She�s had some seizures again and Kathy, Ken and the family are dealing with all those emotions that come with � it�s just so hard at times. Also check out Kristin�s page, she�s struggling too, not feeling well and I would ask that you keep her and her family in your prayers also.

Thank you for the prayers for my father in my last update. He is back to good health again and his spirits seem to be up. We�re all keeping him busy. Another holiday quickly approaching for all of us to get through but I know as a family we can do it together.

Love and hugs to everyone. I don�t know what I do without your support. Thanks so much for leaving your messages in our guest book, we love hearing from all of you.

Tuesday, January 11, 2005 4:07 PM CST

Hello everyone:

I hope this update finds you all in good health. I�m signing in for a quick minute, at least I think it will be quick. You never know once I get typing :o)

Sara is doing well. She�s been getting some seizure free days, which are always a blessing. Although, she did just have one as I was turning on the computer, that said at least she got two days off. I�m learning to appreciate those days instead of getting angry when the seizure finally hits. We did realize this past weekend how much temperature drops can effect her. We went to Cracker Barrel with my in-laws on Saturday. (Great time together...) Anyway they of course had their fireplace rippin with a huge fire. It was ok at first but then it just got bloody hot in there. Sara�s little cheeks were beat red and I of course was starting to panic in my head because I knew it was cold outside. I was already thinking that the drastic change in temperatures was going to throw her into a seizure. Sure enough by the time we got home she had one. I guess this is one reason why The King (Dr. Katz) has pushed us to get a handicap plaque for the car. We had the temporary ones but they ran out and I have yet to get the blue permanent one. Needless to say Jeff�s gonna pop over to motor vehicle tomorrow and get an application. We go see Dr. Katz on Friday so he can fill everything out for us. I kept trying to convince myself that it just wasn�t necessary but I can see there will be times when it is necessary. It�s so strange how temperature drops like that can effect her.

I wanted to take a minute and brag about myself and Sara. I�m so thrilled and proud of her and I. Why you may be asking. We�ll Sara has been sleeping in our room basically since she was born. Our circumstances are different then most and I have had a very hard time letting her go. Her crib is right on my side of the bed and often I am woken up by her at any hour in the night having a seizure. Usually when that happens or even if she just wakes up she ends up snuggling in bed with me. I know, I know don�t say it, what a bad habit. Again keep in mind different circumstances then most. Still not a good habit, I know. Anyway... I have been working hard at keeping her in the crib with the hopes of moving her across the hall to her own bedroom, with Amy. We�ll last night we did it !!! She slept in her own bed, in her own room from 11 pm to 5 am. I was so proud of us. Lost without her but proud anyway. About a year ago my mother bought us one of those TV monitors that is hooked up to a camera, great invention. So I had hooked the camera up to the wall and the tv monitor was next to me in our room and I could see and hear her all night. She did great. All snuggled in like a bug in a rug. Sad thing is I think the move was harder on me then her :o) So, wish us luck tonight and I let you know how we�re doing.

We went to see the eye doctor on Monday. What a great guy. He said that her right eye has improved tremendously, she barely has any correction at all. Her left eye on the other hand is not so good. It continues to get worse with each visit. He really wants us to work harder at patching her good eye which will make the bad eye work harder. It�s hard to say if it will help or not but we have to try. If not we�re completely giving up on the eye seeing at all. She has a dysmorphic optic nerve associated with a retinal coloboma which means she has scatted �punched out� lesions
on her retina (if I understand correctly). This is something that happened in utero and is not associated with the brain surgery in anyway. So basically we have to try and get a patch to stay on her right eye as much as possible during the day. She�s a fighter and really hates the fact that it�s there. She can manage to rub it enough until the edge peels up and then off it comes. I can�t blame her though because she has to work harder to see. I�m sure it�s annoying. We have to go back in May and if the eye is worse she will have to get fitted for glasses. My question of course was how do you get them to stay on? He assured me that they get fitted around her ears and then she would have a strap around her head. The thinking is that maybe she wouldn�t bother them because she would finally be able to see better. I�ll keep you posted on that progress also.

So I think that�s about it. I would like to ask for some prayers though before I go. Please pray for my father. He has me worried, but what else is new. He hasn�t been feeling well, coming up on two weeks. He�s been to the doctors, he had an ear infection and obviously some sort of cold going on. He�s just SO tired. Really tired and it makes me nervous that maybe the doctors are missing something. He sounds like he weezes to me. He did assure me this afternoon that if he is still feeling bad in the morning that he�s going to call his cardiologist. That made me feel a little better. I just worry that he�s home alone and what if something happens. At least when my mom was there she could call someone. I�m sure I�m blowing it out of proportion but I can�t help it he�s my dad and I love him. So please pray for him to feel better.

One more... Christopher, one of Sara�s friends is back at Hotel Hackensack. He had to have more brain surgery. I changed my links below so you can check out his page. He�s had a long hard struggle and I ask that you would pray for healing and strength to get through this ordeal. Please remember his family also, it�s very hard to watch someone you love go through what he�s going through.

As always thanks for listening to my so called brief update ;o) God bless and be well.
Love and hugs to all
Barbara

Monday, December 27, 2004 10:22 AM CST

Good Morning all:

Merry belated Christmas to all of you. We hope that Santa was good to everyone. It�s hard to believe that the holiday has come and gone already. So much preparation and in a matter of minutes it�s over. This was a hard year for our family. The first without mom. I�ve heard people say that the hardest holidays can be the first holidays, the whole first year. I don�t know, I think just about every day can be hard. My father was not ready to have Christmas at home this year. No decorations, no tree, no holiday hoop la. I wanted to push him and say that mom would have wanted him too but personally I didn�t think it would be fair to play that card. After all it�s only been 5 months. I�m hopeful that next year he will feel a bit better and we can go back to our old tradition of Christmas at home. Christmas for me has always been going home to my parents house. For 34 years it�s been that way and call me old fashion but that�s just the way it�s supposed to be. Going home to the house I grew up in, remembering all the Christmas�s past, hearing the music on the stereo, smelling the food, seeing the tree all lit up with the presents underneath, and mom and dad waiting there for the chaos to begin. I�ve been having a real hard time listening to people complain this year. No one in particular, just about everyone out there has a complaint to register. Sometimes just standing in line at the store you can hear the complaints flying all around you. It�s too much running, too long of a day, Getting together with family, the kids don�t want to leave their presents, blah, blah, blah. Besides Christ�s birth, to me Christmas is about FAMILY. So you run all day, so it�s chaotic and crazy, it�s once a year. If you can�t put ONE day a year aside for your family we�ll then when can you? We used to switch houses when we were young. It was either our house, my grandparents, or my uncles and every year a different family would host and we would go. I never remember complaining that I didn�t want to go. I was of course anxious to get more presents but I also wanted to see what my cousins had got. So I just can�t relate when people don�t want to spend time together. Life is so short, sacrifice ONE day, you have 364 other days to do what ever you want. I�m sorry if I offend anyone and I�m not preaching because I lost my mother I just think that the world in general has it�s priorities ALL WRONG. It should be GOD first, family second and every thing else after that. Ok, I�ll get off my soap box now.

Interesting events with Sara. She woke up at 4 am on Christmas morning and had a seizure that she needed Diastat for, she then had another around 2:00 pm that required Diastat and another at 7:30 pm that fortunately didn�t require Diastat. The last time she had a day like this was the birthday party in October. She was surrounded by people both days. I�m starting to wonder if she gets over stimulated or if it�s just the anxiety she feels from us, if that makes sense? So anyway I�m going to keep track of how crowds seem to affect her. We see Dr. Katz next month so we�re going to discuss this with him. I�m wondering if we could give her a little extra of something to kind of nip it in the behind. Like if we know it�s going to be a big day maybe give her an extra half of Phenobarb or something. Other then that though she seemed to have a good day. Her seizures other wise are still about the same. We have had a couple of days where she has gotten a break and for that we�re thankful. You can really see that she is getting stronger. She�s trying to crawl which is outstanding. She gets on her belly and can get her legs pushing her but she has next to no strength in her right arm so she can�t get up. But she scoots around on her belly, she kind of looks like an inch worm :o) She�s also trying really hard to pull herself up into a sitting position. Another huge accomplishment for her. Her bath chair is working out so much better then I had last reported. I fill the tub so that the water is right under her and when she sits in the chair she�s getting wet. She loves it, she swings her foot and splashes the water. The other night I had the chair backwards and her head was at the front of the tub. We�ll she just squealed with delight lifting her hands up and sticking them under the running water. So needless to say mommy is thrilled with the chair. Bath time is SO much easier. She got some new Judy Lynn computer games for Christmas. I loaded them last night and we�re gonna try them out later today. We have a nice slow week coming up. Other then OT on Wednesday she has no therapy. So she�s on vacation for the most part.

Amy had a blast on Christmas. She was so cute in the morning when she came down the hall. Jeff�s parents and my dad came for breakfast and she was just beside herself opening up her gifts. She had Christmas three times. In the morning and then with Jeff�s brother and his kids and then with my brother and his family. It was fun just to watch Christmas through her eyes. All the kids seem to enjoy themselves. After all who doesn�t like to rip open presents. It�s just plain fun.

It was a different year all around for us... having it here at our house but ya know what, as crazy as it was, I had a great time. At one point I just stood in the kitchen closed my eyes and listened. The sound was music to my ears, Christmas mucic playing (not that you could really hear it :o) families talking, kids laughing, Sara squealing, it was a little piece of heaven. Mom would have loved it. The hardest part for me was watching my dad leave all by himself. That�s when it seemed to hit me. He was going home alone, it just breaks my heart over and over again. So I�ll climb on my box one more time and ask all of you to hold your families close. Appreciate and love them while you can. In the blink of an eye, your whole world can change. Don�t be left standing around wishing and regretting that you had spent more time with them.

As always please keep Sara�s friends in your prayers. You can access their sites below, I�m sure they would love to hear from you. God bless and be well. Hugs to all of you. Thanks for listening.

Love,
Barbara

Monday, December 6, 2004 2:47 PM CST

Hi Everyone:

Happy December. Wow how time has a way of getting by me. I used to laugh when I would hear my parents say that time flies, how ridiculous. Yeah right, how ridiculous was I to laugh because here it is flying by me.

We hope that you all had a wonderful Thanksgiving. Ours was nice. Un-eventful for Sara so that is always a plus, actually I take that back she did have a seizure at Jeff�s aunts house not long before we were going to come home. It was hard for my family with this being the first year without my mom. Looking back I would have never imagined that she would not be here with us. I miss her terribly and I know that nothing can bring her back it�s just family moments without her are so different now. Family time is what she was all about and I miss the little things. What I wouldn�t give to hear the sound of her voice, to hear her laugh again.

I am happy to report that I am done Christmas shopping. I�m even done wrapping, well almost done wrapping. I can�t wait to see Amy on Christmas morning. She is always wanting us to make her a house. You know when you were little, at least when I was little we would move chairs around and throw blankets over them and make a fort. Well she thinks that the greatest thing so we got her a little Strawberry Shortcake house, it�s kind of like a tent but not as big and I can�t wait for her to see it. It�s so hard for me to keep surprises so pray I don�t give it to her before then.

We went as a family out to Lancaster this past Saturday to see the Miracle of Christmas at the Sight and Sound Theater. I would encourage all of you to go. It was absolutely amazing. What a production, it was just beautiful. If we could all hold onto the fact that Jesus is what this season is all about... how great would that be? Could you imagine no one buying presents and just celebrating the Kings� birth? WOW!!! I know how hard that can be when we get caught up in the hustle and the bustle of the season but wow, it can really put things into perspective. My dad and Jeff�s parents went with us and it was just a really nice day. Sara did great, slept for a little bit despite everything going on around her and got vocal just at the end when Jesus was being born. But who could blame her she just couldn�t contain her excitement anymore :o)

Oh I almost forgot we finally got Sara�s bath chair. I love it, she hates it. The hard thing is that even at the lowest setting she is out of the water so I imagine it�s cold. So I need to figure out a way to have water on her without getting drenched by the shower. Maybe we could get one of those hand held shower heads or something. Anyway it makes bath time easy for mommy. Amen to that :o)

We�re really struggling with feeding therapy. Not therapy itself, the therapist is good it�s just getting her to take anything. The therapist is very conscious of wether or not Sara is swallowing and is actually got me a wreck now. I figure she has to be swallowing at some point during the day or she would be soaking wet from drool. Right? So does this mean we should go back to the gastroenterologist and have another UGI and Barium Swallow test done? She had all that done Feb 2003 when she was in the hospital before the G-Tube surgery and I don�t remember them saying anything about her swallow. But then again they had a tube in her nose because she was taking anything by mouth so I really don�t know what to do. I think I�m going to have to make an appointment with her pediatrician and discuss it and see what he recommends. Sara is very congested all the time and we are starting a nose spray with her. Our hope is that if she�s cleared up she may start eating a little more. You see every time she gets something in her mouth she has to open it up to breathe and what ever you put in comes back out. We�ve been faithful with the spray for about a week now and I think it�s helped. She�s not even snoring as much at night, so I guess time will tell. Watching and waiting, watching and waiting the hardest possible thing for me to do...

We finally are going to see Dr. Katz this coming Friday. We had an appointment last month but it got canceled and hopefully nothing will happen and we�ll actually get there. I�m anxious for him to see her again. I think her seizures are getting better. I hate to say that and jinx ourselves but we�ve been getting a day or two in between so that�s always great. I can�t help but always think at the end of a day where we have not had a seizure, is this it? Is this the start of her seizure free life? Then when we get hit again, I always find myself furious that they have returned. I�m trying hard to just be thankful. Be thankful that the Lord gave her two days without one. We�ve come so far how can I be discouraged? I guess I�m just human and I�m a mom that doesn�t want to watch her child suffer through another seizure. That said she never ceases to amaze me. She is a tough little cookie and we are so blessed to have her. I can honestly report that she is just all around happier. Getting off of Tegretol has really helped her personality to come though. She�s smiling so much more. I was even able to capture and big grin for our Christmas picture, check it out. I�m constantly reminded either by seeing someone somewhere or visiting one of our caring bridge friends that life could be so much worse for us and that I thank God we have what we have. I�ll take our problem over anyone elses.

So I will end once again by asking you to check in on Sara�s friends. It�s easy, just click one of the links below and that will take you to another page from where you can go on and on. These families need your support, a kind word in the guest book, a prayer offered for healing. This is the perfect time of year to offer our love to someone out there that needs a little extra boost to get through the day. So thank you in advance for spreading some holiday cheer to another and as always God bless and be well. Happy Holidays and thanks for listening and most of all thanks for just being you.

Hugs,
Barbara

November 1, 2004

Happy Halloween Everyone:

We hope that everyone had a safe and fun Halloween. Sara almost didn�t make it out to trick or treat. We had planned on leaving the house around 5:30 and Sara had a seizure at 4:30. She ended up getting Diastat and conking out in her bean bag chair sound asleep. Jeff had said that he would stay home with her but in the end we decided to get her dressed and go out as a family. I�m so glad we did. She and Amy looked so cute in their costumes. Amy was Tigger and Sara was a Care Bear. We went to Califon, picked up Nanny and hit some neighbor hood friends houses. We then joined the parade around 7:00 and met up with PopPop and Grandpa at the firehouse. Sara was a trooper, her costume head seemed to annoy her but she hung in there anyway. Everyone was so happy to see her. Some of them had been praying for her for so long and had never been able to actually see her until last night. It was great. Proud moments for mommy and daddy.

Last Wednesday Sara had her first haircut. Well if you count Dr. Fried shaving her head for her surgery then this was her second hair cut. We like to look at it as her first though. I was a nervous wreck taking her to the hair salon, I didn�t know what to expect. But thank you Lord for answering my prayers. The whole process took about 10 minutes and she was great. Katie did a super job, she was patient and took it all in stride. Sara stayed in her Kimba chair and we removed the head rest so Katie could work around her. Sara normally does not like anyone touching her hair or face but she did fine. We were even able to bring some hair home with us for her baby book. I was so afraid she would have a seizure and again the Lord answered my prayer and she didn�t. She had them in so many public places that really what would one more be? ! I had been so worried about the whole thing which may sound silly but I guess that�s part of being a mom.

I had been feeling lately like we were stuck in a rut. That Sara is just kind of treading water so to speak. No BIG changes. Then the other day I was going through pictures and the changes in her within a year just completely blew me away. She has come so far since the surgery it amazing. I�m so thankful that I have my mother in me and always seem to have the camera in my hand. I updated the photo album so you can see for yourself how much she has changed. I know she has a long hard road ahead of her but she�s come so far down that road already that it truly is a miracle to me.

We�ve been consistently having seizures. We are completely off of the Tegretol and now were just waiting for her system to adjust to the change. We go see Dr. Katz next week so we�ll see what he thinks. It�s just amazing how much she has come around, she�s so alert and happy. After being on SO many anti-seizure drugs at once it�s so strange for us to make her meds up in the morning and only have two, Phenobarb and Keppra. Even her medicine chart seems empty. She has a chart that we keep on the computer so we know when she gets her meds and we keep track of her seizures and everything. We�ll we used to fill a whole page with stuff and know there�s all this space at the bottom of the page. Small blessings like these sure can mean the world to me.

So I think that�s about it for know. We�re hanging in there and taking life one day at a time. We�re thankful for the life that God has given us and we�re doing the best we can. Take care all � God bless and be well.

Hugs
Barbara

Wednesday, October 13, 2004 9:51 AM CDT

Good morning all:
Once again it's been a while since my last update. I don't know where the times goes. Hard to believe its October already -- my favorite time of year.

This weekend we had Amy and Sara's birthday party. We combined them again for numerous reasons and it really seems to work out great. Sara is too young to understand yet and Amy seems to care less about sharing the limelight. Amy had a great day -- she was in her glory surrounded by all of her cousins, not to mention all of the presents.

Sara on the other hand had a bit of a hard day. She ended up having 4 seizures total, one of which in the night lasted 16 minutes. Needless to say I spoke with Dr. Katz and I'm amazed how comforting his voice can be at 12:30 am. We are just about off of the Tegretol and seizures are to be expected it just hard to watch. Having seen Sara through countless seizures in her short little life you would think that we would be de-sensitized by them (if that makes sense) but they still have a way of riping your heart out. You find yourself going through the motions while they are happening and you just want to do everything you can to help her get through it. When it's over it hits you like a birck wall, what just happened to her once again. We are still hopefull that she will lead a seizure free life one day and the more meds she comes off the more her personality is coming through. We get purposeful smiles now and that it just the best thing in the world to me. She's even giggling more, makes me smile just thinking about it. So once we are off the Tegrtol the hope is that the Keppra will be more effective, at least Dr. Katz thinks so. So that's what were going to think also.

I wish I had the money to have a family gathering every weekend. Surrounding myself with family and friends is the best medicine as far as I'm concerned. Saturday was a very emotional day for me. Mom cherished birthdays and always made them a big deal so it was difficult to even plan this day without her. I'm so glad I did for Amy's sake and I guess a bit for mine. I love to watch my father watch his grandchildren. Four girls. Yes all girls, and everyone of them is the apple of granpa's eyes. My heart aches for him that he can not share these moments with mom but I have to hold onto my precious memories of her and the wonderful life she created for me. I kept a few of the countless sympathy cards that I received and this one I hold close to me heart.

"You'll never forget your mother's face, the sound of her voice, the gentleness of her touch...they let you know you were loved. You'll never forget the stories she told, the traditions she handed down... they let you know who you are. You'll never forget the lessons she taught, the things she stood for... they are her gift and your legacy. You'll never forget, and you'll always know that you honor her everyday in how you live and who you are."

I live every day hoping that she is looking down and that she is proud of the life I am leading -- if were not for her wonderful example to me of what a mother should be I could not be the mother that I am today. I miss you mom !!

Last night I was visitng our friends on their caring bridge pages and suddenly it hit me. There are SO many familes out there suffering. So many children, yes children fighting for their lives. On one of the pages there was a song that I wanted to share with all of you. It really touched me and I hope it touches you.

All who sail the sea of faith, find out before too long
how quickly blue skies can grow dark and gentle winds grow strong. Suddenly fear is like white water pounding on the soul. Still we sail on knowing that our Lord is in control

Sometimes He calms the storm with a whispered "Peace be still" He can settle any sea but it doesn't mean He will.
Sometimes He holds us close and lets the wind and waves go wild. Sometimes He calms the storm and other times, He calms His child.

He has a reason for each trial that we pass through in life and though we're shaken we cannot be pulled apart from Christ. No matter how the driving rain beats down on those who hold to faith a heart of trust will always be a quiet peaceful place.

Sometimes He calms the storm with a whispered "Peace be still" He can settle any sea but it doesn't mean He will.
Sometimes He holds us close and lets the wind and waves go wild. Sometimes He calms the storm and other times, He calms His child.

My prayer will be that while your visiting our page you would take the time to click on the sites below. From there you can go on and on and on. Please offer up a word of encouragement and a prayer for healing to these familes. They all really need your support and I thank you in advance for it. God bless and be well. Love and hugs to all.

Saturday, September 18, 2004 10:01 AM CDT

Wow it's been a while since my last update. Let me start by saying thank you to all of you for your support and words of encouragement as I deal with the loss of my mother.

We spent 4 days in Wildwood last week. It was our first trip away from home and we had a great time. We had to deal with a seizure every day but thankfully all of them accured while we were at the motel. My fear was that she would have one on the board walk and I would have no place to go to give her Diastat. Thankfully though that never happened.

I have to say that this trip certainly taught me some things. One of which is that you CAN NOT judge someone by the way they look. It was Bike week during our trip which was quite an eye opener. That said there were some outrageous looking outfits and individuals. Yet some of the most burly looking harley men were the ones that would smile and make gestures to Sara as we would walk by. So for anyone to judge them by the way they look is wrong because quite a few of them proved that they were just old softies with tatoos.

As a family we did encounter alot of staring which as a parent can really hurt your feelings. An occasionaly glance is one thing but when people down and out stare it's kind of annoying. It came to me that they were probably judging Sara by her appearance and that sucked. I heard comments that I care not to repeat and all I can say is that I'm glad Sara does not understand. My heart hurts because someday she will and people can be cruel to someone who is differen't.

We had an incident in a resturant that we ended up walking out of. We went in with Sara's new stroller. Anyone looking at this stroller can tell that it's not your ordinary stroller. It's a little bigger then the average stroller but smaller then a wheel chair. Anyway we went in to eat and were asked if she could sit in a booster chair, "no she can't". Can she sit in a high chair?. "Not that kind, I'm sorry". Hmm, well her chair is just too big and I'm afraid someone may trip over her, it's kind of a hazard. With that I said let's go, people were looking and listening and we didn't want to make a scene. Needless to say we were all annoyed walking down the board walk. Jeff's parents and Jeff and I were fuming. More hurt that mad, what did they do if someone came in with a wheel chair? Well, Momma bear got mad and turned around and went back to confront the hostess. I walked back in and politely explained that she had basically discriminated (not a word I use lightly) against a child. She was very flustered and I think pooping in her shoes. She claims we didn't give her enough time to think things over and I explained that she was embarrassing our family and that thankfully Sara could not understand or she would have been hurt. What do they do if someone comes in with a wheel chair? and she said they could have moved a table out of the way. She also claims that people come in and are just lazy and don't want to take their kids out of their strollers. I told her much to the contrary we would have loved to have taken Sara out and put her in a booster seat but we can't and that the next time she should have a plan in place. That said this family will not eat at the Lobster Shack again.

We had a nice ending to that evening though and I'm not just talking about about the ice cream :o). We had an old fashion photo taken and the women working there were wonderful. I explained our situation and they were just great. They got Amy, Jeff and I settled and just worked with Sara. Check out our new photos and see what you think.

We came home on Sunday the 12th and Sara had 4 seizures that day. Our worst day in a long time. Maybe she just didn't want to leave the nice sunny weather?

We saw Dr. Katz on the 15th and in his words, "She looks like a millon bucks." He is impressed that despite the fact that we are coming off of the Tegretol were only seeing on the average 3-4 seizures a week. He truly feels that once we get off the Tegretol the Keppra will be more effective and we will see great improvements. He was very optimistic which was something I think Jeff and I both needed to hear. It so hard to watch your child struggle everyday to do little things that we take for granted. She tries so hard to sit on her own, she working hard at learning to walk and eat and still has to battle the seizures. Did we do the right thing? Dr. Katz claims if she was his child he would have done exactly the same thing. He claims he has been doing this for a long time and that he has seen good care and he has seen some down right bad care. Sara recevied very good care. Even if he wasn't her doctor and was just reviewing her case he would totally agree with the care she was given, the decisions that were made for her. Looking back at where she was and where she is today there's just no comparison. Three to four seizures a week compared to 60 plus a day is night and day. We see her everday and the little things can sometimes go un-noticed but when someone dosen't see her for a while the changes are un-belivable to them. You can't help but want the best for your children and that's all we want for Sara. We're clinging to the fact that we keep hearing "It takes time..." So time is all we can give her, time, support and most of all love, an endless supply of love.

Amy started pre-school on the 14th. She did great, no tears, no fussing at all. Waved goodbye, blew kisses and was off and playing with the kids. Mommy actually didn't have a hard time either. I knew she was in good hands and truly belive she needs something in her life right now that is just for her. Not someone coming in for Sara but Amy going somewhere just for Amy. What hurt me the most was that my mom was not here to share this day with us. She loved this sort of thing. I know if she was still with us that the phone would have been ringing by the time I got home wanting to know how she did, what was she wearing all that good stuff. Jeff assures me that she was right there beside us and I can believe that in my heart but it's still hard. I miss her so much sometimes that I just don't know what to do with myself. But life goes on right and we have to keep going? Someday we will all be together in a glorious place with our Lord and Saviour and I can't lie and say I don't look forward to that day.

So on that note I'll say so long for now. Thanks agin for listening to me ramble and thank you for signing in. Your words mean so much to us. We love you all, God bless and be well.

Sunday, August 8, 2004 3:14 PM CDT

Hello all:
I know it's been a while since my last update and I really can't tell you that I haven't had the time because for some strange reason, I've actually had time. To be honest I just haven't had it in me to sit down and open up about anything. I'm afraid on some level that I may insult people because as I've been told I'm going through the "angry stage."

Life just seems to be so differen't since moms passing. I feel like I'm moving through some kind of strange thick fog. My family has always been very close, family events and family time together were important to us. I was often teased that I always had a family picnic to go to. And now are family has been changed forever. We're still very close but there's this heart breaking hole now. Something very dear is missing.

Jeff and I made the best move 3 years ago when we moved back to Lebanon Township. It has afforded us the luxury of living within miles of both of our parents. The girls and I had gotten into the habit of going to visit my parents a couple of times a week if not more. Were still doing that as long as dad can put up with us. Gus has already been banned from the house. With Jeff working the shift he works the girls and I are alone when other families are just getting back together for the day. So many times I found myself on the phone with mom and she'd say "get on up here." And we'd pack everything up and go for the day. Mom and I had a true mother/daughter/best friend relationship. I used to laugh at how much she and my grandmother would talk on the phone during the day and all these years later she and I would talk sometimes 3-4 times a day. I miss that, I really miss the sound of her voice on the other end of the line. Yes there were sometimes when I was right in the middle of giving one of the girls a bath and I'd think UGH but I knew I could tell her bad time and that was ok. She truly was the center of my world, more then I think I ever really knew. It seems like every where I turn she's there. If it's not a picture of her it's something that makes me think of her. Sometimes things will happen during the day and I think wait until I tell mom that. So, ya know what I started, and this may sound a little out there but I started writing to her. Basically it's journaling or writing in a diary (something she did faithfully) but I write Dear Mom and tell her all the things I wanted to tell her during the day. A dear friend of mine reccomended it to me and I think some days it helps.

It's funny how people look at you differently now. They get that sad dog look on their faces and are like "how are you? are you ok? Is there anything I can do?" Well if you REALLY want to know, I'm awful and if you could bring my mom back we'll that would be great, if not we'll then no there's nothing you can do." I know that people just want to help and they don't know what to say but enough of the sad dog look. Sometimes admitting that you don't know what to say is the best thing to say. If that made sense. Please don't take my attitude the wrong way I truly appreciate everyones concern but that said I'm also learning the hard way who really cares and who just wants to know what happened. Give me all the details..... Go away! Just go away! If you really knew our family then you already know those details. I actually had someone say to me "Been there done that" when I was talking about my feelings. Hmmm what do you say to that one? I know the Lord only gives us what we can handle and I sure hope he thought the best way to handle that was by politely ending the conversation and hanging up the phone :o)

I know my mother is at peace and I know she is out of pain, and most of all I know we will be together again some day as a family. I know all these things in my head but I just can't get my heart to understand. Thanks for listening to me ramble on about that.

Sara.... Sara is doing quite well. We are coming off of the Tegretol that we have wanted to come off for some time now. Last week we only saw three seizures and only one warranted Diastat. Like Jeff said this morning "Imagine that, we ask to come off something that we think is doing no good and once her body gets adjusted we see fewer seizures." Sorry Dr. Katz :o) We saw the normal increase when we first started backing off while her body adjusted. Having decreased meds before we didn't panic this time when she had three in one day with two doses of Diastat. Instead we chalked it up to her body adjusting. Tommorow we go down some more so we'll probably see a slight increase again.

We haven't been to feeding therapy since mom passed. I canceled that day and the following week, then they canceled us two weeks in a row. Needless to say I'm not to thrilled with the whole situation. We go back finally tomorrow and I'm going to have to break down my wall and talk to them about my concerns. I know I have mentioned that we only get 60 vists per LIFETIME and that some days nothing is accomplished. So that said I want them to set some goals for me to work on at home and only go once maybe every other week until she really starts to make some major changes. It's seems that Hackensack was to aggressive with her and Hackettstown is to laid back with her. I need to find that happy middle ground. Where is it?

We finally got our Kimba mobility system. It was delivered on Sara's birthday. This thing is great. It's a chair base that hooks onto a base in the house for a high chair and then that same chair base comes off to hook onto a stroller base. Does that make sense? It's a little combersome to move around but I think once I get the hang of taking it on and off it'll be eaiser. Strange how our insurance didn't bat an eye at spending this kind of money yet won't pay for a bath chair. HUH? I think for the moment I found something else that may work in the tub but it's too soon to brag so I won't :o)

Yes, Sara turned two on August 3rd. No huge fan fair. We're going to combine parties again in October. She did enjoy some of a cupcake and especially the strawberry icing. We spent the day swiming with her cousins. It was a nice somewhat relaxing day.

Gus our new Lab is driving me crazy but I love him anyway. He won't stay out of water. He even gets in the shower with you if he can. I never knew that about Labs. Now anyone who has a dog knows that water on a dog ends up making a stinky dog. He's at my feet now and despite just getting a bath on the deck he still smells like a wet dog. Oh well, what can you do. My brother once put Polo, the cologne on our dog when we both lived at home. Yeah that was a nice smell. Polo/wet dog smell together. Even the poor dog thought he smelled bad. He couldn't get away from himself though.

So on that note I think I should be going. Sara is a bit fussy at the moment. The last of her teeth are coming in and they seem to be giving her trouble. God bless her she never made a peep when all the others came in. Oh my gosh I can't believe I almost forgot to tell you all that I think she's starting to giggle :o))) It's so cute to hear. It's like the more meds we get her off her personality is finally starting to come through. It's music to my ears and I wish you could all hear it.

So thanks for listening and know that I truly appreciate all of you for checking in on us. Your cards in the mail, your e-mail notes and your messages on our board really do mean alot to me even if I was venting in the beginning. Please continue to pray for my father. He seems to be doing a bit better but I know this is the hardest for him and as much as I hurt I can only imagine that his pain is much worse.

Remember life is short, so hold onto the ones you love and let them know you love them. Never be embarrassed to say I love you and always remember to laugh. That's one thing I can say, if I love you well then you can bet that you know it. If I don't, well then that's just too bad for you... just kidding... Laughing see it's a good thing :)
God bless and be well.
Hugs to everyone
Barbara

Thursday, July 22, 2004 8:43 AM CDT

It is with a very heavy heart that I update you all on the passing of my mother. She went home to Jesus on Friday, July 16, 2004 at 1:00 pm. Despite the fact that I re-live the moment over and over agin in my mind I am so grateful that we were all with her when she went. We were able to say "see you again" hold onto her and surround her with our love. Words can't even begin to express the sorrow our family is feeling right now. I miss her so much that I just don't know what to do at times. She was the center of my world and life will never be the same without her. You try to prepare youself and you know in your mind it was for the best, she fought long and hard for the past ten years now and she is finally at rest. I know she is rejoicing in her new body and I long for the day when we can all be together again.

Thank you all so much for your prayers and support. Please continue to pray for my father. They were married 40 years in May and he is lost without her. Their love was a love that all marriages should be modeled after.

Thank you again and God bless.

Friday, July 2, 2004 12:43 AM CDT

First of all thank you to everyone for your support and prayers for my mom. She is far from out of the woods yet, and may never be. Something we are all trying to get our minds and hearts around. She's still in the hospital and still struggling. The whole family is having a hard time with the fact that there are so many doctors involved. It makes it very difficult to figure out who to listen to. One minute we get one story and the next it's another. All we can do at this point is put her back in God's hands and know that he is in control. We may not agree with what he is doing but HE IS in control. Please continue to pray for healing for her and peace for my father. This is his bride of 40 years and it's very difficult for him to see her in the condition she is in right now.

Sara is Sara what can I say. She continues to amaze us with her progress. She works very hard with PT and OT and is moving in her gait trainer (walker). For the most part she can get it going sideways and the other day she lurched forward to us in the kitchen. I'm confident she'll walk someday and when she does all I can say is Amy better look out.

I'm struggling with feeding therapy. I love the place we go to not to mention the conveinence and the girls that work with her are fabulous but it seems to be hit or miss. Somedays they work her for the whole hour and other days they work her for 20 minutes. Sometimes I feel like I can and do more with her here at home. She's only allowed 60 visits per LIFETIME and I don't want to waste those on days that we sit and tell her how beautiful she is. Don't get me wrong I certainly agree with them and love to tell her that myself but they are there to provide a service to her and sometimes I don't feel that the service is up to par. I've come to learn in the past year that I am such a control freak and that let's face it I'm anal. I expect too much of people I guess and it's just the mother in me wanting the best for my child. It was recommended by a very dear friend of mine that I sit down with them at feeding therapy and express my concerns and maybe arrange that we do not go twice a week. Maybe set some goals that I can work more dilengently with her at home and meet once or twice a month until she gets a little further along. So that said I think we may be doing that. As it is they canceled today which was fine because I was going to cancel also. We're going to drag Grandpa out of the hospital for dinner :o) They are closed next Monday and we can not go next Friday so they won't see us for a week and a half. Maybe this is the break we need to see what we can accomplish here on our own. I still need their help though because I have no clue on how to get her drinking but someone recommended that I surf the net and see what I can find. I'll try that too, finding the time is the hard part. I can barely get on line to update the page let alone really dedicate some time to research something. Anyway, blah, blah, blah....

We are trying to increase Sara on her Keppra. We have seen a significant increase in her seizures. We tried the other night to give her a half a tab at bedtime (per Dr. Katz) but it really seemed to bother her. We think the dose was too much. Within two hours of getting it she awoke from a sound sleep and was just plain ticked off at everything I tried to do for her and anyone that knows Sara knows that is so not her. When Sara cries something is really wrong. So after talking to Dr. Katz AGAIN yesterday we decided to just add a 1/4 tab dose during the day. Much better. Hopefullly this will raise the level in her body and the seizures will subside again. We've been aware of the heat and are trying to see this summer how she does out in it. We're going to venture over to the Lebanon parade on Sunday and hopefully plant ourselves in some shade.

I do have some very exciting news to bring to you all. We are going away on vacation. YEAH !! We're going to step out of our comfort zone and believe me this is the hardest thing for ME to do. Yeah me, the control freak :o)can you believe it? Anyway Jeff does not get vacation until labor day week and we're going to go to Wildwood NJ Thursday thru Sunday. Jeff's parents are going with us which will actually be a tremendous help and comfort. You have to know that we have not gone anywhere over night in years, yes years. So needless to say we're excited, something to look forward to. I need to get out and get some huge luggage because all of you seizure parents will know that I will be bringing EVERYTHING imaginable with me JUST IN CASE.

For now I think that's it. We hope you all enjoy your holiday weekend. Have fun and be safe. God bless and Hugs to everyone. Thank you again for your prayers and concern for my mom.

Love Ya All
Barbara

Monday, June 14, 2004 2:01 PM CDT

Saturday the 12th marked one year for Sara's hemispherectomy surgery. As I sat with her Saturday night thoughts of last year filled my mind. The exhausting waiting for 6 hours hoping every time someone walked in the waiting room that it would be Dr. Fried. Then the poop eating grin on his face when he did finally come whisking in the door. The joy in his voice when he told us that everything went well, that she was already moving the right side of her body, and the comfort of hugging the man
that just successfully removed half of your childs brain.
Then there was the horror in our mind of what to expect when we would see her and the pleasant surprise of how well she looked when we finally did see her. The endless days in the PICU aka the dark dungeon. Sleepless nights in the big blue chair, endless poking and proding of our child. Learning to speak my mind and turn away the few arrogant Residents. Wondering if by the time this was all over was I going to handed a medical degree? It was a long hospital journey that started on May 19th and finally ended on July 1st.

Looking at Sara today we have SO SO many things to thankful for. The first being that she's here with us, she's truly a gift to us from God and we are so proud to be her parents. She's growing and learning. She's bright, happy and alert. She's vocalizing more and more which even my father says is music to our ears. She's learning to eat and enjoying new things every day. She's come so far from that sick little seizing girl she used to be. We are so grateful to Dr. Fried (The Great White Knight) and Dr. Mazzola for having the knowledge and ability to perform her grid surgery, hemispherectomy and finally shunt surgery. Dr. Lancman and Lombrakis for the endless Video EEG monitoring and Dr's Percy and Seigel for PICU vigils. Oh my gosh how could I almost forget the King, Dr. Katz, Sara's neurologist who endured endless days of harrassment and teasing and to this day still does when the Hoffman's arrive in Hackensack for office visits. Truth be known I think he enjoys it :o) Then there were Stacy (BERGMEN), Lee (Wille Wonka) and Terri all known to us as the Neuro Science Trio. (As you can tell we have made up names for just about everyone, it passes the time) Stacey came just about every day to see us and lend her support and listen to me. Sometimes just listening is the greatest gift a person can give to another. The nurses were all great, they were always there when I needed a shoulder to cry on or a joke to laugh at. I can't lie and say that we don't have our favorites but they were all wonderful and were truly concerned each day for Sara. Many shed tears with me.
Boy this sure sounds like a Academy Award speech dosen't it.

Above everything I am so thankful for my faith in Jesus Christ. If it weren't for that I don't know how I would have gotten through any of this. There have been moments in Sara's short life that I have had to think about the fact that she may meet him before I do and having a personal relationship with him makes that ok. There were many trips to the chapel to cry and beg him not to take her and many trips to yell at him for making her suffer. The one thing I could always count on was that he was listening. The hardest thing to this day for me is not being able to see him. That said when I so desperately needed someone one day in the chapel he sent a complete stranger to me. Someone to sit, listen, dry me tears and walk me back to my room. He is a wonderful and loving God and I encourage everyone out there to invite him into their hearts and get to know him. He'll be the best friend you could ever ask for and in the end the only friend you will want there with you.

So it's been a long road and to all of you parents out there struggling on your own road with your children we truly sympathize and pray for you. We thank all of you from the bottom of our hearts for all of your support, encouragment and love. This whole ordeal had brought our family closer and when we see the effect Sara has on so many people we know that this is Sara's job. We're all here for a reason and we all have a plan layed out for us. Sara is just completing the task at hand.

On a seperate note I would like to be bold enough to ask you all to pray for my parents. My mother is in the hospital and has been since the 8th. We found out that she has Hydrocephalus and will need to have a shunt put in. She also is having problems with her Kidneys that they are tying to figure out first. They are not sure if she has a blockage or if one is failing. Her blood pressure has been erractic and when they think they have it under control she goes up again. My father has been going to see her everyday and if anyone can understand how hard that is Jeff and I can. Sitting in a hosiptal with a loved one can be physically and emotionally draining. Please pray for my mom's recovery and safe surgery possibly surgeries. Please also pray for my fathers ability to handle all the emotions that go along with this process. Thank you so much.

God bless and be well. Hugs to all.

Friday, June 4, 2004 9:12 AM CDT

Quick update this morning -- the girls and I surprised Jeff with a puppy on Tuesday night as an early father's day gift. Too say the least he was thrilled, the look on his face was price less. The puppy is a 9 week old black lab and we call him Gus. I know I have posted in the past that we were advised not to get a puppy but we decided to throw caution to the wind and advice out the window. When you get as much advice as we do there comes a point when you just have to say what the heck -- what do they know anyway? Sorry to those of you that advised us against it :)

He's adorable and he really seems to be settling into his new role as the Hoffman dog. Amy is crazy about him and Sara really could seem to care less. Actually that's not entirely true she smiles and is very vocal when he's on the floor with her making sure she gets her daily puppy tongue bath. We watch the two of them together like a hawk and it seems to be working. Yesterday she had PT here at the house and Jeff said Gus laid on the floor and took the whole thing in. Right now he's sound asleep next to her on the floor by my feet, both are snoring. Check out the new pictures.

Tomorrow is our last dose of Dilantin -- still seeing the increase in seizures. I spoke with Dr. Katz the other night about the possibility of increasing her Keppra and he said exactly what I knew he would say. "Let's wait" I have to admit we agree with him but we had to ask anyway. You see if we increase the Keppra and her seziures back off then we're going to all assume that the Keppra did it and that may not be true. So if she or should I say we can hold off until we see him Next Friday (18th) and see how she is doing one week out then we can decide. He has no problem increasing it it's just that the obvious hope would be that once it's out of her system, her seizures back off again and we don't have to increase anything. Less is always better. I'll let you know what happens.

Other then therapy life is relatively calm at the moment. So on that note we hope all is well with all of you. Please continue to pray for all of Sara's friends. I know that Christopher is struggling and we have a new friend Sadie Grace who we would ask you to pray for also. Support to all of us and other caring bridge families is what keeps us all going. Knowing that people are thinking and praying for you can make the day a bit brighter. So thank you to everyone for giving us sun shinny days. Hugs to all and God bless.

Monday, May 24, 2004 6:03 PM CDT

Happy Monday everyone:

As usual it's been hectic around here. Therapy, therapy, therapy. All good stuff though.

This morning we went to see a pediatric orthopedist in Flemington. It was on the advice of Sara's PT that we went. Due to the fact that Sara is almost two years old and does not walk or stand on her own yet she thought it would be a good idea if we have her hips and spine checked out. Especially since we hope to be getting the gait trainer soon. So she had some xrays this morning and her hips and pelivs look great. (I think this is about the only part of her body that has not been x-rayed yet.) Her spine has a slight surve in it. I thought it looked really curved but that just goes to show that I'm no radiologist because Dr. Tarecco said it did not look bad but it is something she would like to keep an eye on. She also informed me that this is not the reason that she is not walking yet. She feels that it can be from all that she has been through and the fact that the film was taken lying down. A try scoliosis film should be standing or sitting. So hopefully when we go back in November we can get at least a sitting picture ideally a standing one.

After the visit to Flemington, and our home away from home, the drug store... we came home had lunch and headed to feeding therapy then stopped back at my parents house for a visit this afternoon. We're just getting home and settling in now. Sara is in her chair nibbling on a nilla wafer. Yup I said nibbling on a nilla wafer. We're trying to introduce some different textures. She is doing great with the Gerber vegetable puffs and Gerber banana cookies. I was so excited the other night watching her handle her own cookie and put it in her mouth and then verbalize with what seemed like glee to me that I almost jumped out of my skin. She definatley belongs to Jeff and I because she suddenly seems to be taking a liking to the sweet stuff :o) The feeding therapist are thrilled with her mouth movements and tongue awareness. Who knows maybe she'll eat a hot dog for her birthday :o) She is doing one thing that is driving both Jeff and I crazy though. She's grinding her front teeth together and it's like nails on a chalk board. They think it's just a new sensation for her and hoepfully she will stop as quickly as she started.

We have a new speech therapist coming out from Early Intervention tomorrow. I really pushed for it. I can't see taking away from her 60 feeding/speech visits if we can get someone from early intervention. She was highly recommened by our PT who works with her and I'm looking forward to meeting her. I hope this one is a good fit for Sara. I'll let you know.

I don't know if I mentioned in my last update that we are coming off of Dilantin. Having discussed it with Dr. Katz he agrees that this can be affecting her balance and may be part of the reason she is having such a hard time sitting on her own. We have seen quite the flurry of seizure activity, which we had expected. Hopefully she will level off again once we get off of it all together. She's down to one dose, once a day and will stay at this for another week and then she's done. She definatley seems brighter to both Jeff and I, which in itself is great.

Another piece of good news is that DDD is finally going to process Sara this week. What that means is that she will be declared disabled by the State and now we can get the ball rolling on getting her Medicaid as a supplemental insurance. Since our Cigna denied her bath chair, if we had Medicaid we could have sent it in to them. This has been the biggest hurdle we have been trying to get over so we're glad it's finally going through.

Well I think that's it for now. Oh yeah for all of you that know Mary and her family, they are doing fine. I was talking to Kathy the other day and she asked me to mention that because she has been having computer trouble and has not been able to update Mary's page recently. Speaking of computer trouble we have had a bit of our own. I switched to Netzero because it was cheaper and I was having trouble with Earthlink. We'll cheaper is not always better and I'll be switching back to Earthlink again. Sometimes I think computers are more trouble then they are good. But then again if it wasn't for computers I would not have met some of you and for that I am very grateful. Thank you as always for your continued support. God bless and be well.

Wednesday, May 5, 2004 4:19 PM CDT

It's been a while since my last up date, I know... It's getting really hard to find time to do just about anything.

Sara's therapy scheduling is very demanding and while it is all positive it's still very hard. I have laundry in the wash from this morning that MAY make it to the dryer before the day is over :o)

As in my past updates, PT and OT are wonderful. Her therapist are doing a super job with her and she really seems to respond well to them. Feeding therapy is also going very well, Sara seems to really click with Ms. Lori and Ms. Megan. Speech on the other hand is not going well at all. I think you all know that Sara goes to Hackettstown Community Hospital for her feeding therapy and that our insurance is covering it. She's only entitled to 60 visits per LIFETIME. Not year. Nice huh??!! Anyway the speech therapist through Early Intervention came out late last year and did not feel that Sara was ready to start therapy. So we waited and in the mean time we were trying to get something going with her feeding therapy. Once we started with the feeding therapy they commented that they really felt she was ready to get started with some speech therapy. So I called the cooridnator for our Early Intervention and the speech therapist came back out. I don't know call it mom's intuition but it's just not the right fit. Sorry, I'm jumping ahead of myself. She did her evaluation and that went OK, she then recommended that we go ahead with the therapy and that she would recommend once every other week. Child's not talking at all just some vocalizing and you want to see her once every other week, ok your the therapist what do I know!!? So we've had a couple of sessions and it's just not going to work. I get the distinct impression that she is not looking at the big picture. Not only is Sara not talking but she's developmentally delayed, she has Epilepsy, she's had major brain surgeries yada yada yada.... She seems to get very flustered and frustrated quickly with Sara and not for nothing but with all this child has been through I expect you to treat her with respect. If I have learned anything from all the Epilepsy moms it's that I am an advocate for Sara and I'll be damned if I'm going to let someone come in our home and man handle her. I know some of you moms and social workers out there are going "It's about time, Barbara, speak up, give um heck..." I know it's taken me a while but when you see your child through what we have seen our child through you quickly learn to stop being a door mat to the world. OK back to my story, sorry again. I guess it's just one of those gut feelings but this is not going to work with this speech therapist. I called the coordinator back and expressed my concerns. I asked her not to speak with the therapist and that I really just wanted to put the bug in her ear that I was not happy and also find out if there was another therapist available. Apparently there is but she will be going on maternity leave in September. Ok this is May right we could get in some sessions, no?? Anyway apparently she spoke with the therapist who had the "big set" enough to approach me at the end of our last session and ask if I was ok with her and if we were on the same page and I grew my own set and said I really didn't think so. I told her that I was concerned that she was not the right fit for Sara, blah blah blah. She then informed me that we would see how the next session goes on the 18th and if necessary we could increase to once a week. WAIT ONE MINUTE. You mean you could see her once a week and are chossing (? spelling) not to. I don't get it. Needless to say I made up my mind that she's history. I talked it over with Jeff who she was ready to fall all over as he came in the door. Don't ask. He agress that if this is not the right fit then don't waste Sara's time. Long story short I spoke with the ladies in Hackettstown today at feeding therapy to see how they feel about taking Sara on for speech. Guess what first of all they feel she is absolutely ready for the therapy (other therapist is suddenly not sure) and they feel she needs to be seen at least two times a week which would mean four sessions a week in Hackettstown. Once every other week is not enough. So now I'm waiting for our so called case manager through our insurance to call me back to see what I have to do to get her going on speech therapy in Hackettstown. I don't know if they look at speech and feeding as the same thing, if so will they increase her number of sessions or what. After I talk to Jeff tonight and make sure he is on the same page with me (which I'm sure he is) I will call tomorrow and tell the corrdinator that I do not want any speech therapy through early intervention.

Whew... I'm so frustrated. Why does everything have to be so difficult? Why do they make things so hard for families with special neeeds children? Why is everything such a secret? We're getting concerned that Sara is closing in on her life time max with our insurance. We're waiting to hear where she is at claim wise so we're looking ahead and trying to get our ducks in a row for the day that she runs out of coverage. The only nice thing is that come October Anheuser Busch has open enrollement and we can switch to Aetna if need be. But that takes some looking into also. I've been told about Medicaid-Medicare-SSI and I keep hitting brick walls. We make too much money for all of those. I've then been told something about a supplemental or not claiming Sara but frankly I have no idea what any of that means HELP!! I'm going to try calling the social worker at the Medical Center and see if she can help me. The state is still processing Sara's DDD paperwork. It was sent in Janurary but they are behind and are only up to November of last year. They hope to have her processed in 45 days. I'm guessing that once she qualifies I will get a case worker that can help me with all this stuff. I'm not looking for anyone to do the work for me just help me get started and don't send me down dead end roads.

Sorry, I'm really in a stinky mood. My brother-in-law was kind enough to compliment me the other day on my easy going, take everything in stride attitude. Yes, I agree that's me. But some days on the inside I'm spitting mad. I just hide it well. I do what I do because I love my children and my husband to pieces. Jeff and I had a long talk the other day and have come to the conclusion that we have lived a life time in two years. Some families thankfully never go through anything like we have been through in a life time and we have managed to cram all this in to, two short years. I think the emotions/stress is finally starting to catch up to the two of us. Thankfully though we have each other to hold on to and for that I am eternally grateful. He is a loving, caring, wonderful husband and father and we are so lucky to have him.

On another note we go to Hackensack on Friday to see Dr. Katz. He's in for a real treat this visit. Mommy's had enough. We really need to come up with some kind of a plan to get control over her seizures again. She's having at least two every day again and it's just not acceptable to me. Maybe I should tell him that... I'm sure he'll get a kick out of my take charge attitude :o) He also knows me to well :o) Anyway we do all think that she is processing her meds quicker because she is so much more active so woulnd't that mean you increase them? We'll see.

Needless to say from the sounds of my journal I'm struggling over here on High View Street. I may be smiling on the outside but my heart breaks a little everyday as I stand over my baby girl and try to comfrot her through a seizure that has grabbed a hold of her little body again. Like any other parent we just want what's best for her. I know the good Lord has her plan all worked out and that he knows the tears I shead for her but sometimes I lose sight of that and can't help but get a little angry with him. Thankfully though he takes me back every time I turn around and call on him. I look forward to the day when I can actually touch his nail peiced hand and get that hug, that only a father can give, that I so desperately need on days like today.

Hugs to everyone and take care.

Thursday, April 22, 2004 2:07 PM CDT

We went to see Dr. Katz yesterday. Sara has really been struggling with her seizures and we all felt it was a good idea to connect with him before he goes away (again:o) On the drive up I was thinking back to when we started going down hill again. I'm so thankful that I have a daily med chart on her. It's proven helpful for many reasons. We know for sure when she gets her meds, I can hand it over to the docs without having to even think about it and we can look back and see how she's done. It appears that days before we ended up in the ER for her stomach troubles she was starting to have some flurries. Which if she had a bug brewing that's explanable. Sara has proven in the past that any time she does not feel well we see seizures. Which can explain the reason we are so anal about her being around sick people. Anyway then she went in the ER and ended up on Zantac. BINGO, all heck has been breaking loose ever since. I brought this up to Dr. Katz and he agreed but looked up Zantac anyway and it definately effects her seizure meds. Apparently the coating or something in the medicince breaks down the seizure meds. Interesting and frustrating. Which again as in the past we have found that certian meds, even cold medicine throws her meds off and we see the seizures. So we decided to stop the Zantac a few doses early. He also wants us to decrease her Phenobarb a little. That said I knew in the back of my mind to be prepared and par for the course Sara had 5 seizures yesterday, two of which required Diastat, luckliy they were spaced far enough apart in the day that I could give her the second dose. She was wiped out to say the least. So far today we have had two small ones and are hoping to ride this out quickly. Any time we decrease a seziure med we see the flurry and I knew yesterday that's what it was but it's still frustrating. Dr. Katz is confident that once we get her back on track she will bounce back again. Now is not the time to re-evaluate her meds, we may need to tweak them a bit but that's it. So we're holding on to that and waiting for the seizure free day again.

I hope all is well with all of you. Amy's in the bathroom -- getting into trouble so I have to run. God bless and take care.

Thursday, April 15, 2004 9:05 AM CDT

Happy (belated) Easter everyone:
It's been a while since my last update again, it seems to be getting harder and harder to find the time to sit for a few minutes.

Well we spent a few hours in the Hackensack ER on the evening of April 9th. We had noticed a dark coffee ground like substance coming back through her G-Tube when we would vent her before feedings. This happened for a few days and the odd thing was that she had not taking anything by mouth on those days so to see this odd color was alarming. I spoke with our pediatrician on Friday morning and he was concerned that she could possibly have a bleeding ulcer. With all of her meds this would not be surprising. The good thing was that it did not look like fresh blood. We then got in contact Sara's GI doc in Hackensack who wanted her to come to the ER so they could test the fluid. So off we went... I cautiously packed a small bag just in case, this is Sara you know. Long story short it turned out to be old blood so they put her on Zantac for a couple of weeks. They feel that she has a gastric irritation which is nothing to really be concerned over. Since starting the Zantac we have not seen the coffe grind stuff.

Her seizures are a pain in the rear end. We still seem to be on the downward spiral again. She has been battling a cold and seems a bit out of sorts. I spoke with Dr. Katz and he agrees that as in the past every time Sara's over all general health is compromised her seizures return. That said what do you do to keep her completely healthy, put her in a bubble?? We are very precautious (some may say over cautios, I say bite me :o) with her and we try so hard to keep her out of certain situations but life happens. If we don't see a turn around by next week Dr. Katz and I may be speaking again :o)

Speaking of the King... I know I had mentioned in previous journals that we were looking into getting a Pug puppy. Most of you know that we lost Buddy last September and how much we miss him. Anyway the Pug lady (I'll call her that) called over the weekend and her Pug turned out to not be pregnant but she was given the pick of the liter from one of her friends. She was willing to sell us this puppy. Of course I was thrilled, well sort of. Jeff and I are both anal and feel in our hearts that we are doing Buddy's memory harm by getting another dog, maybe the hurt is still too raw. But the biggest concern is Sara. She has come so far and is a puppy going to hurt or help her. I was supposed to go get this puppy on Tuesday evening and Jeff suggested I call the King and get his advice. As much as we tease Dr. Katz we really appreciate him as Sara's doctor and we value his opinion. He knows her and has seen her through her worst times. That said he advised totally against a puppy. He is all for us getting a dog and agrees that a dog in the house would be theraputic for Sara but it has to be the right dog. I guess you could say I knew all that it was just a matter of hearing it from someone else. He suggests we get Sara on at least a half a dozen lists for a therapy dog. He thinks a dog at least 2-3 years of age with some training behind it would be good, even a seeing eye reject dog (which we considered in the past). I told him about an article we read in the paper about seizure alert dogs and he agreed that they are wonderful. So my new journey of researching a dog began. The Seeing eye reject is the easiest to apply for, anyone can get one if you apply and wait the possible 2-3 years. The therapy dogs are another thing. I contacted Cannine Assistants in GA and they have a 2-3 year waiting list (ok) but they have an age requirement of 5 years old. That said if Sara's name did not come up for a couple of years she would be closing in on age 5. What if she's 4 will they give her one or put her back on the list? The receptionsit could not answer that question and suggested I send in the application. We'll any mother out there that has tried to get thier child something knows that this is no simple application. They want everything and then some, which is understandable just time consuming. So I then looked at K9 for Life and their age requirement is 12 but she may be able to get a home companion dog which means it's gone through the process but did not pass the final exam for one reason or another, and possibly this home companion would have seizure alert tendencies. So I'm still looking into other places but the age requirement is upsetting. Does no one under of 5 have seizures? If that's the case I'd better let Sara know she's breaking the rules. The great part about the seizure alert dogs would be that there have been many times that I have walked into a room and found Sara in the middle of a seizure. When did it start, am I seeing the worst part of it? Due to the fact that I wait 3-4 minutes to give her Diastat I now have to start timing and what if it's been going on that long already? These are my arguments to get one but the real question is will anyone care? We are more then glad to wait on a list but will they hold her age against her when her name comes up? So, I have two applications to fill out and after I send them in and they are reviewed we'll see what happens. If there is anyone out there that knows anything about aquiring a therapy dog I would appreciate your input. Oh yeah, the Pug lady took it really well and was very understanding. Not that it mattered I just didn't want to tick her off. I am so anal !!!

We've had a break in PT with spring vacation and feeding therapy is going well. She has finally discovered that she has a tongue. It happened all of a sudden and she is moving it around, sticking it out, licking her lips constantly. It's a great sight to see, not to mention a little comical. She's taking differen't textures and temperatures by mouth and we're starting to really get a grip on what she likes and dislikes. For example those Gerber dinners, like beef vegetable and ham and something are a definate NO. Some veggies are ok but she really favors Oatmeal and fruit together, not to mention pudding.
A girl after my own heart.

We go see Dr. Kitei, the opthamalogist on Monday morning. Should be interesting to see what he thinks of her. Oh yeah Friday when we were discharged from the ER we ran up to 3 Conklin to check in with our favorite night nurses. Their response to Sara brought tears to my eyes and a smile to my heart. They were so amazed at the sight of her. Keep in mind that most of them have not seen her since the big surgery ordeal last Spring/Summer. She's come a long way and it was nice to see their reaction. All you mom's out there that are frequent hospital flyers can relate to what I'm trying to say. You some how become connected to these people for life. They have seen your children and you through the most difficult times in your lives and they care beyond belief.

Whew... My fingers are pooped. My two neices are here today and at the moment Amy is laughing hysterically. It's a joy to see her have fun. She had a hard time with the situation on Friday. She saw us leaving and was brought home (with NaNa & PopPop) to an empty house and was out of sorts a bit. I'm sure all those old memories came back and she was thinking oh no here we go again. That said she needs this goof off crazy time with her cousins and as long as the house is still standing when they leave I don't care what they do :o).

So on that note I'll say so long for now. As always God bless and be well. Hugs to everyone.

Tuesday, April 6, 2004 7:31 AM CDT

Happy Spring Everyone :
I'm sorry it's been a while since my last update. Our schedule with Sara has suddenly increased tremendously. Let's see... where do I even begin.

We were starting to see some real control with her seizures. Jeff and I were both starting to think that we were finally turning the corner. BUT... There's always a but. We went to see Dr. Katz on March 26th and she's been traveling in reverse again. We don't want to give Dr. Katz a complex, who am I kidding yes we do (ha ha, just kidding). We love to tease him. Let me just brag a minute and say that he was so pleased with her. He couldn't get over how great she looked, like a whole new child :o) Anyway she was actually showing a few seizures a couple of days before we saw him but we still felt we had things under control. Last week was a bad week though. We saw seizure activity every day again. For the most part not hard enough to warrant Diastat every time which is a blessing because when she does have one strong enough for Diastat it really kicks in and works when we need it to. So I spoke with Dr. Katz on the phone this past Friday hoping to get going in the right direction again. He suggested we try a half a tab of Ativan twice a day. I did warn him that ativian, other then what they give via IV in the hospital does not seem to effect her. But we decided to give it a try and see. Not much in the results department. She had two seizures on Friday, one not long after getting Diastat, and basically one-two each day of the weekend. That said Sunday she was very quiet which has not been like her lately. She's been very active and vocal for the most part. We had my whole family over to celebrate Easter (a week earky) and she was quite happy just lounging around with who ever wanted to snuggle with her. Yesterday she spent quite a bit of the day sneezing and rubbing her eyes, no seizures though. So it's possible she's got some kind of a bug brewing. She did wake me up at 3:30 this morning in the middle of a 8 minute seizure so it's so hard to understand what brings them on. I think that's the thing for Jeff and I. She can do so well and then turn around in an instant and fall back 10 steps. Very frustrating. If this week continues to be a bad week I may ask Dr. Katz what he thinks about blood work to see where her levels are, maybe she's had a bit of a growth spurt which could throw her meds off.

Ok, enough about that. We got her "gait trainer" last Thursday. It's great, it's like a modified walker and she really seems to like it. Right now were just getting her used to being in it and having that pressure on her lower body. She seems to enjoy being at the same level with Amy. Louise our PT was here yesterday and we were helping her move around the house and will now start woking on getting her moving her legs. This gait trainer is on loan from the company and as long as Cigna feels it's necessary she will get her own. Yeah they decide, how absurd!! We are hoping that the company will let us keep this one until she gets hers but that may take a while and we'll have to see how much of a demand they have for it. They're also going to get me something to help bathe her. She can't sit on her own quite yet and when I've tried to lay her in the tub she tries to sit up and smacks her head on the floor of the tub. Not good. She has a blow up duck that I put her in but she's getting too big for it and I have an awful time trying to hold her with one hand and use the other hand to do everything else. So they have something that I can lye her in and strap across her tummy to free my hands. Yeah, hopefully that will work. If Cigna says she can have it :o)))

Therapy. Early Intervention is starting their new cost share program, which means that depending on your income and family size you have to start paying a "co-Pay" so to speak for services. The nice thing about the new program is you can have unlimited services where with the old program you could only get 2 hours a week (I think.) So we're still getting PT twice a week and OT once every other week. I spoke with the speech therapist and she is going to come out today and get started, not sure how many times she will come yet and we go to Hackettstown for feeding therapy every Monday and Friday. So Sara is keeping us busy. Feeding therapy is progessing nicely. She's making it known what she likes and dislikes. She's starting to take some colder things, this morning she had some apple sauce from the fridge and seemed to like it. We find if you let her grab onto the spoon and help she takes it better. Can't blame her there, she wants some control.

So, I think that's about it. This week will actually be a slower week for us. We have PT and speech therapy today and then feeding therapy on Friday. Other then feeding therapy next week we have nothing. Spring break for the kids means spring break for the therapy moms too. So we're looking forward to some down time. Oh yeah we are going to see Dr. Kitei, I think within a week or two. He's Sara's eye doctor. We weren't sure why the urgency to follow up with him again but thanks to Dr. Katz we now understand the importance of the eyes and the brain working together. We're also anxious for him to see Sara since the last time he saw her in November she has improved with her vision tremendously.

Well I'm gonna sign off before Amy gets up and comes looking for her chocolate milk :o) Hopefully we'll have some nice weather to enjoy this coming Sunday for Easter. Happy Spring and God Bless. Hugs to everyone.

Friday, March 19, 2004 3:59 PM CST

It's been a while since my last update. Let's see... We went for the feeding evaluation in Hackettstown and what a breath of fresh air these women were. It was wonderful. They were so gentle and loving with Sara and really interacted with her on her level. They verbalized with her and it was hysterical to see the look on her face. We learned so much from them in the short hour that we were there. Bunch of things we can do to jump start her before we go back. They have been in contact with me since the evaluation to let me know how things have been going which is another breath of fresh air. The paperwork has all been submitted to our case manager and now we have to wait for the "medical director" of Cigna to decide if she needs the therapy. Yeah crazy I know but we're at their mercy. I spoke with Lori one of the therapist last this week and we should hopefully know something next week. They would like to see her twice a week if feasible. So we've been playing with pudding and whipped cream even tried ice cream. They want us to just introduce things to her and see what she does, no need to worry about amounts at this point, just see what she likes and dislikes. So far pudding is the biggest hit. The cold stuff seems to catch her too much off guard.

We really seem to be getting seizure control. I don't want to jinx ourselves so that's all I'll say about that :o) We go see The King (Dr. Katz) next Friday.

Someone asked me if we had Sara registered with DDD and I did send off all my paperwork back in January. I finally broke down and called the office expecting to hear that they did not receive everything but much to my surprise they had everything they have just been extremely backed up and are still processing everything. Huh, how about that. So we'll see what they have to say.

PT and OT are going very well. Sara's therapist are so impressed with her progress. We are going to be trying a small gait trainer. We have been noticing that when she's on the floor her little legs get going 90 miles and hour and if she could go, she would go. So we asked Louise if there was anything we could put her in, kind of like those old fashioned walkers that they have out lawed now. I say that with a grin since we had one and even tried to put her in it. She's too tall and her legs get caught. Anyway there is this gait trainer that will basically do the same thing as a walker but more. So we're excited to get her in something that she can learn to use her legs and get used to that motion and the pressure of supporting herself in a differen't way. She does very well in her stander and hopefully that will have preped her a bit for the gait trainer. I'll let you know.

So that's it. We're digging out from under the recent snow storms. Go figure, spring starts tomorrow. I updated the pictures with some new Easter themed pics, hope you enjoy them. As always thanks so much for all your support. We love you, take care, be well and God Bless !

Hugs
Barbara

Tuesday, March 2, 2004 6:30 PM CST

Just a quick update. Through research of my own I think we have a found a facility within 20 minutes of us that can help us with feeding therapy. YEAH !!!! I had called our case worker with our insurance out of desperation hoping that she would point me toward the right facilities and I would have sworn I was on candid camera when you hear what she gave me. You'll never believe this but she gave me some private practices to call and here it comes, they were all plastic surgeons. OK you tell me what they can do for us with feeding therapy. So, on the computer I went and searched our insurance and it turns out that Hackettstown Community Hospital has a speech pathology department. I called, they participate with our insurance and they think they can help Sara. They do have a feeding therapy program and we have an appointment this coming Thursday at 11am. The therapist was so pleasant to speak to on the phone and she was so honest with me. If for any reason they feel that they can not help Sara they will let us know up front and they will try to find us a place that can. Such a breath of fresh air. Not to mention the fact that if this works or should I say when it works (positive thinking) this will be the closest place ever. Oh and here's the kicker... I finally heard back from Hackensack. After a few more, ahh how shall I say stern messages, I received a call back. Three Months !! Of course there were all kinds of reasons for the delay, Sara had been filed in the wrong pile and no one followed up on my hand fulls of phone calls but in the end it just didn't matter anymore. They were very apologetic and I have to say that I believe with all sincerity that they did want to help her. That said though we had already planned on going else where regardless. Our patience had been pushed to the edge. If I have been taught anything it's that we as Sara's parents have to be advocates for her. She can't do it on her own. We are her voice. I did receive a faxed copy of the feeding evalution this afternoon and plan to take it with us on Thursday. Too much information is better then too little. So the past is the past and what's done is done, hopefully it will be for the best since we found someplace so close.

I know in my last update we were four days without a seizure and yes they came back. I am happy to report though that we really feel that we are getting some control. She went four days had two seizures only one needing Diastat and then she went two more days before the next one hit. We are definately seeing a longer period of time between the seizures and an even greater time between Diastat. So we're really excited about that. She looks fabulous. Her toys arrived from the Commisssion and she has been so excited reaching and exploring all the new things. Louise our PT is so pleased with her progress, she's so much more attentive and really just "Getting Happy."

So that's the update. Tickled pink about finally moving forward with some kind of feeding therapy. We hope all is well with everyone and thank you all for your continued support and words of encouragement. God bless and be well. Hugs to everyone.

Wednesday, February 25, 2004 5:34 PM CST

Hello everyone -- I know it's been a while since my last update. She has been doing so well that I'm kind of afraid to jinx ourselves. We were supposed to go see Dr. Katz tomorrow morning in Hackensack and I just got off the phone with him - we'll hold off for another two weeks. Last week we saw seizures everyday and on a few days we saw two in a day. Today marks day four without any so we are cautious to make any adjustments to her medications. You see any time we try and come off a seziure med it ALWAYS throws her into a flurry of seizures. After discussing it with Dr. Katz he agrees "You go Sara" and we won't touch her meds or do anything and see what she does.

We're still trying to get something going with her feeding therapy. In my last update we were hoping we could go to Morristown but unfortunately they do not participate with our insurance. The other problem is that there are numerous speech pathologists out there but not many of them are trained in feeding therapy so it's hard to find someone -- let alone anyone remotely local. So I'm going to call the speech pathology department at Robert Wood Johnson in New Brunswick tomorrow. We know now that our insurance particpates with them and we've heard they have a program for children so more then likely this is where we'll end up going. Unfortunately for Sara though she will most likely have to go through all the testing again. I hope not but it dosen't sound hopeful. I do have a number for a guy in Bridgewater who has a private practice that I'm going to call also but our case worker with our insurance is not sure if he does feeding therapy or just speech therapy. So we'll see, the saga continues...

Beth from the Commission of the Blind came out this week to sit in on Sara's therapy with Louise on Tuesday. The Commission is working with Sara because of her vision diagnosis. It was a very informative visit and we say some great things with Sara. We've been offering her the same old hard rattle type toys and Beth is suggesting we start introducing soft, coloful as well as black and white, toys with all kinds of textures. We tried some toys that she brought with her and Sara was like a differn't child. She was reaching again and pulling the new toys to her and really getting excited. So we packed away most of the hard stuff for now and drug out all of the stuffed animals and my business scarfs are finally coming in handy. It's amazing how changing little things can make such a big difference. We even have a video for her to watch now -- it's classical music with shapes and colors bouncing all over the screen. Yesterday was a riot to see her standing in her stander in front of the TV intently watching the screen and grabbing for her toys. She's been so happy lately that it just really touhces my heart. She's cutting about three teeth and you would never know it except for the constant puddle of drool and the fact that she's trying to stuff her whole fist in her mouth -- which in itself is a great thing to see. She's standing here by me right now looking around and reaching for her Koosh ball.

So that's really it for now. She looks great and we're hopeful she'll keep up the good work with her seizures. By the way we went to see the Pugs and we've decided to get one. If all goes as planned they should arrive end of April early May and be ready for us early June. They are an absolute riot to see in action. Amy was in her glory as were Jeff and I, Sara could care less. It will be nice to have a dog in the house again, although in the back of my mind I think I may be nuts :o)

Take care and be well, until next time. Hugs to everyone.

Monday, February 9, 2004 4:56 PM CST

Hello everyone -- it's been a little while since my last update and really there isn't a whole lot going on. YEAH !! We actually have a quiet week here, other then therapy at the house, no outside appointments.

Sara went to the pediatrician last week for a well baby check and he thought she looked wonderful. So wonderful that unless we need him we don't go back until she's two in August. We also went to see Dr. Katz last week. He too is impressed with how well Sara looks. Despite the fact that we are still battling seizures on a daily basis she's so alert and really looking quite content. She is smiling much more frequently and really seems to be coming into her own personality. The fact that she is smiling more and more is the best for us. You call her name and just the sound of our voices will make her smile. She loves to watch Amy and is quite mesmerized by her. Dr. Katz agrees with us that there really did not seem to be an answer as to why her seizures had picked up. We all seem to think that she was battling a little bit of a bug. We're back to one sometimes two seizures a day and the plan is to leave the medicine as is and she if she evens out again. He wants to see her back in three weeks and we will start coming back off of the Dilantin. So that's that for now.

We are at our wits end with the feeding therapy and have decided to start looking for some place else to go. We discussed this with both our pediatrician and Dr. Katz, they both agree. With Dr. Katz's advice I contacted Dr. Kogan's office (Sara's GI Doc) to see if they could recommend anyone in Morristown that could help us. Morristown would be wonderful, so much closer to us. They contacted the GI nurse at the group in Morristown and she is out until tomorrow so hopefully we can get some information on moving forward with a new specialist. We have no bad feelings towards anyone it's just upsetting that it's been three months and we can't even get a return phone call. That's just not acceptable anymore -- we're patient people but there is a limit to ones patience :o)

Oh yeah we're really contemplating getting another dog. It's been 5 months since we lost Buddy and the thought of him can still make me cry. We called our vet, who we just love, for some advice today -- Jeff wants a bulldog and unfortunatley our vet does not recommend them. Too many health concerns and with what we have on our plate now why set ourselves up to worry about a dog. He did recommend a PUG though, if we're looking for something smaller with a "bulldog" look. Even agreed that a Lab would also be a good fit for us if we want to go bigger. So we'll see. Jeff does not know about the bulldog yet so it should be interesting to see what he thinks of the vets recommendation. I'll let you know what we decide.

I have been trying to find the time to get back to Curves and today was my first day. It is amazing what 40 minutes of mommy time can do to rejuventate your mind, body and spirit. So that's the update for now. We thank God that Sara is doing better and we just keep hoping and praying for the drug combination that will make her seizure free.
God bless and be well.

Thursday, January 29, 2004 2:46 PM CST

We'll we are all adjusted to being back home -- what a nice statement, back home.

Sara has been really struggling with her seizures again. We've been averaging 3-5 a day since the 23rd. It's so frustrating. She was on such a good roll and now we've stepped back again. Dr. Katz has been playing with her meds quite a bit, and is installing a direct Hoffman line in his house (just kidding). I've talked to him every day since we've been home. He's a God send and we are so grateful to have him as Sara's doctor. He truly cares and is just as concerned and frustrated as we are. We went for blood work this morning to check her Dilantin and Tegretol levels, now we have to wait and see what they say. We were trying to come off the Tegretol but have momentarily increased it again hoping to get a hold of what's going on. We have to give Sara a tremendous amount of credit too because despite the increase in her seizures she's alert, happy and ready to go. Her PT has been outstanding. Louise has been so impressed with her. She's even moving her right arm now. YEAH!! Just lifting it up is a step in the right direction. No word on feeding therapy yet, don't worry I won't go there with this journal :o)

I spent the mid morning on the phone battling over a hospital bill. For all of you out there with bills like this, I sympathize, I really do. As if we don't have enough to worry about we have to worry about outstanding bills too. It is so annoying to speak with these people and get the "I understand, right, right, no we paid what we feel is reasonable and customary..." WHAT !!! First of all they don't understand, unless they God forbid are getting bills for thousands and thousands of dollars also, that by the way they want paid in 10 days. Frankly they need to find another word other then I understand. You may feel bad but you don't understand. Needless to say our Case Manager received and ear full from me today and I do think she has a better grasp on where were coming from. I tried to explain that I truly didn't mean to take my aggravation out on her but to call the 800 number get bounced around and speak to someone that really dosen't care and is watching the clock to go home is not something I want to do anymore. I'm sorry it's just that our daughter is sick and in the midst of taking care of her the last thing I want to do is battle over money. I feel the amount of money is justified, heck it was brain surgery. For an insurance company, paper pushers to decide what they feel is a reasonable price to pay is just absurd. OK, I'm done. One last note though, it looks like they are going to pay more so chalk one up for the little guy :o)

So that in a nut shell is what has been going on here. I dread going to the mail box but we are delighted to be home. Sara is sitting next to me, reaching for her toys, chewing on her fingers and observing everything aound her. A wonderful sight to be hold. Amy's on the couch intently watching Home Alone for the 10, 000th time and I can hear her veggie tales CD playing up the hall. How fitting that this is what's playing "Let us have a little talk with Jesus, gonna tell him all about our troubles, he will hear our faintest cry he will answer by and by when you feel a little pray wheel turning you will know a little fire is burning and just a little talk with Jesus makes it right." AMEN to that. Sometimes I feel him moving in my life in such an obvious way, like this moment. It's like he's telling me, come talk to me Barbara, tell me your troubles and I will make it better, If YOU LET ME.

Gotta Go -- God bless be and be well.

Friday, January 23, 2004 5:33 PM CST

We're home !!!

We're home, un-packed and settling in. When ever we're away it sure makes us appreciate the simple things about being back together in the comforts of your own home.

Let me try and fill you in on what happened. Sara was having an increase in her seizures to the point where she was scaring me. She was also doing something odd with her breathing. She would all of a sudden pant like she couldn't catch her breath. So after going to the pediatrician on Tuesday without a trace of anything being wrong with her, and having had two seziures within the hour of being there, we called Dr. Katz and sensing my fear he said bring her in. We arrived at the ER at 6:30 and we're finally headed to the PICU at 12:00. Concerned that the she was having a problem with her shunt, she had a CAT Scan and shunt series of x-rays. All proved that her shunt is working fine. So the next plan was to hook her up to the video EEG and see if we could capture some of the bigger seizures and the breathing episode. Long story short we captured both. The breathing turned out to NOT be seziure activity and has gone away as mysteriously as it appeared. The even better news is that the seizures appear to be coming from the left. Our fear is that they would have been coming from the right, which is the only piece left. There is some question if some of them came from the right but Dr. Lancman seems to disagree. I asked him how they can be coming from the side that was removed and he said it can be from the fact that she is still in the healing process. Hopefully with med adjustments we can get better control again. So Dr. Katz increased her Keppra, added Dilantin again and is lowering the Tegretol. His plan in the hospital was to treat her aggressively with Dilantin and that seemed to work better then giving her Ativian through her IV which always used to work. We're not overly fond of adding the Dilantin again because of the way it affected the Nystagmus in her eye but if it helps with her seizures then we have to do what we have to do.

While we were there it just so happened that the Gendell's were there with Joshua. I had met his mom Erica before but this was the first time that Jeff and I both got to his meet his father Steven. Jeff thoroughly enjoyed getting to chat with another father who can relate from a fathers point of view. So Steven I would like to say thank you for being there for Jeff. Erica you are wonderful and I can't thank you enough for being there last night during the big seizure. As crazy as it may seem it was comforting to have another mother there with me that could understand and be supportive as a mother who has been there can be. We are all praying for Joshua and would ask that our friends and family pray for his healing also. You are a wonderful family and we're so glad our paths have crossed.

We would also like to say thank you to Dr. Katz. As much as we tease him (relentlessly) we have so much faith and trust in him and know that he truly cares about getting Sara better and that means more to us then words could say.

So having said all that I'll be signing off to just sit in the living room and enjoy the fact that we're back under the same roof. Thank you all for your continued prayers and messages on the board and answering machine. Just knowing that so many of you are thinking and praying for Sara is a blessing.

As always, God Bless and be well. Until next time, hugs to everyone and thanks again for your continued support.

Tuesday, January 20, 2004 1:54 PM CST

Just signing in as I pack and wait for daddy to get home and take us to Hackensack. Yes I said pack Sara is being admitted through the ER this afternoon. She's not doing well. Seizure increase and all around just not feeling good. Everything checked out well at the pediatricians but from 8am to 12pm today she had three hard seizures. Spoke with Dr. Katz and he could sense the fear in my voice and that put fear in him as he said. I don't scare easy with Sara and when she scares me that scares him so we will be leaving as soon as daddy gets home around 4:00.

Please pray we're not there long and that we get her on the right track again. They will have to hook her up to the video eeg and that scares the hell out of me. We don't know if I want to hear what it's showing. Please also pray for Amy and that she gets through this seperation period once again. Thanks as always for the support. We love you all.

Saturday, January 17, 2004 6:30 PM CST

Hello everyone - signing in to give you all the fabulous news. Sara went four days without a seizure. This is thrilling for us, she has not gone this long since her first seizure on 9/24/02. I gave her Diastat this afternoon mainly for comfort. She was doing alot of jerking -- not her typical seizure and it was annoying the heck out of her so I gave her the Diastat and she calmed right down. Amazing how getting it out of her system for a while can make it work when you actually need it. So we're delighted with her seizure progress.

On the rash front it really seems to be looking better. Thank you all for your continued prayers on this matter. We will be so thankful if it turns out to be anything but her seizure meds. Right now the Elidel cream and faith seem to be working.

Back to her seizures -- the past four days I have to say she has been the happiest I have seen her in a long time. Despite battling what we think is an upset stomach like the rest of us she has been smiling much more and kicking her feet and just plain getting excited about things. She's reminding me of how she was the six short weeks of life before the first seizure hit -- Oh, she's vocalizing much more too. It warms my heart to see her beginning to enjoy her life.

Update for next week is we go to Hackensack on Monday. She has a follow up CAT Scan and visit with our Neurosurgeon -- The Great White Knight -- Dr. Fried. Hopefully we can acutally connect with him on the visit, it's been a while. I have vowed to call the feeding specialist every single day until I get an answer on when she can start the feeding therapy she truly needs. She'll have PT and OT at home on Monday and Thursday and that's about it.

Thank you all again for your prayers and support we are truly blessed with a wonderful family and great friends.

Until next time -- God Bless and be well TTFN.

Thursday, January 15, 2004 10:25 AM CST

Happy snow day everyone:
Just signing in for a quick up date. I know many of you are praying for the rash to go away and we thank you for that. It's a strange thing. There are moments when the rash is gone and then all of a sudden it flares up again. For instance it was gone one day and she had a bath and it came back -- mind you I didn't wash her back because of the rash and it came back anyway -- no, I didn't change soap either. I don't know if the warm water brought it out or what. The next morning it was gone again and flared up again by the end of the day for no apparent reason. This morning it looks great, you can just barely see it so we're just watching and waiting. We apply Elidel cream twice a day and she's off the Bactrim now and on Primsol. The past two days she has struggled with her feeds and we're not sure what's causing that. This morning though we did notice that her new pump (yes we finally got the replacement) seems to feed her quicker even at the same setting as the old so her next feed I'm going to slow it down a bit and see what happens. Last night she cried for 1 1/2 hours and for those of you that know Sara know that is very un-like her. So unfortunately my update isn't really telling you much other then we're still basically in the same boat. I know we have to give the old medicine time to get out of her system and we need to give the cream time to work I guess I'm just looking for a miracle. Please keep praying we really appreciate it and thanks for all your support and encouragement, your great. Enjoy the snow.

P.S.
Two days no seizures :o) YIPEE !!! In light of the seizures she had on Monday (3 = one of which was 20 minutes long) this is fabulous news :o)

God bless and be well until next time TTFN.

Thursday, January 8, 2004 4:02 PM CST

Where to start....

Yesterday we went to see our pediatrician. Sara has a rash all over her back. It's an obvious allergic reaction to something, but what? Logic would be the Keppra but then again maybe not. We also saw Dr. Katz this morning and he is hoping it is the Bactrim that she has been on for months in order to prevent another urinary tract infection. You see the problem is that if she ends up being allergic to one of her anti-seizure meds we could be in trouble. Apparently they are very similar and contain similar ingredients. The other issue would be that if she has to come off of her seizure meds cold turkey to find out which one is causing the rash this would have to be done in a hospital setting, for her safety. So without going into a long detailed explanation I would like to ask all of you to pray that she is allergic to Bactrim and/or when we start the cream the rash goes away. I know that may seem strange but it would be so much eaiser for us to be able to stop the antibiotic and start a new one then it would be to go in the hospital and try and figure out which seizure med it could be. Not to mention the most important thing is that it would be much much eaiser on Sara. It may sound selfish on our part but a hospital stay is not what we want to start the year out with.

On a good note Dr. Katz was thrilled with how she looks, she's so bright eyed and alert to her surroundings. He also suggested I call Dr. Evans and run the idea of the Bactrim past him. I called when we got home but he was gone for the day. He's great about calling back so we should now something tomorrow morning. Hopefully within a week we should know which way this is all going to go. I'll keep you posted.

Besides the rash she is doing wonderful. Really coming along in her therapy and getting stronger every day. She's very aware of her surroundings and is really tracking things well with her eyes. Still waiting to start feeding therapy. I've left messages and we're still waiting on the insurance to approve. Imagine that :o) I've been working with her here at the house and she's improved so much from when we started. She's actually opening her mouth to try some things. We're also waiting on a new pump for her tube feedings. They had sent us a new one before the holidays and it worked for a few days before it went on the fritz. They have been sending us a new one for about two weeks now. Needless to say Bret will be tied of getting my voice messages soon and hopefully we'll get they replacement. So in the mean time we're using the old one that feeds her slower. Oh well as long as she's getting what she needs. Great news is that she gained 1.4 pounds when we weighed in yesterday. Imagine that a girl/women excited about gaining weight :O)

We'll I feel like I rambled on and I hope you can make some sense of the update. Please pray the rash goes away. We appreciate all of your messages on the board and are grateful for all of your support. Thank you so much for caring. God bless and be well -- TTFN

Friday, January 2, 2004 1:27 PM CST

Happy Healthy New Year everyone !!!

Well we made it through the holidays. We hope all of you enjoyed the festivities as much as we did. It was great to be out and about visiting with all our family.

Seizure wise Christmas week was not the best one for us. I didn't want to do it but I ended up talking to Dr. Katz a few times while he was away. We made some more changes in her Tegretol and Keppra and I think it's paying off a bit. This week has been better. We went four days with NO Diastat. She had seizures on those days but they lasted no longer than a few minutes. She's currently battling a cold though and I gave her cold medicine last night and she had a seizure that needed Diastat. For the most part though I really think we're seeing seizure control improvements. We go see Dr. Katz next week so we'll see what he thinks.

Amy on the other hand is really feeling her oats. My heart is so torn because I feel like there is not enough hours in the day to give her the quality one on one time I want to give her. It never seems to fail that when she and I sit down to do something together, what ever it may be something happens with Sara. I'm so afraid she will resent her. I've talked with some of the other mothers who are in our shoes and they all tell me it's understandable and it happpens. It still stinks though. She's such a good little girl and she has been through alot the past year and we are determined to make this year a better one for her and all of us.

So on that note -- I'm signing off to play Chutes and Ladders with Amy :o) We're putting last year behind us and looking forward into 2004 with healthy happy optimistic thoughts, we wish the same for all of you. God bless and be well !!

Sunday, December 21, 2003 1:56 PM CST

Un-expectedly we went to see Dr. Katz last Tuesday. I had spoken with him on Monday with concerns about Sara's seizure activity and he asked us to come up the next day. He was going away and wanted to make sure that we had a plan of action for Sara if we should need it. So we canceled therapy and off to Hackensack we went. He was actually early for our appointment. Can you believe it??? I had to put that in there because that never happens and if he's checking in, thank you !! So anyway, it was a group decision to try going back up on the Tegretol. We had tried over the previous weekend and she had a lot of twitching so we went back down. The thought is that if we go up slower than before maybe that'll work. She seems to be tolerating the increase so far and as of right now we don't plan on going any higher then 4cc's, 5cc's and 5cc's.

Friday morning she woke up having a seizure. This one was really hard on her. It seemed like when it had a hold of her it just didn't want to let go and that scared me. She got Diastat and I paged Dr. Katz to move ahead with plan B, new medicine. We decided to go ahead and start the Keppra. He suggested that we wait though and start it at night because it was more then likely going to knock her for a loop. We'll within about an hour she was in the middle of another hard seizure. We haven't had back to back seizures like that in a long time and this scared me as well. Since she had just had Diastat I could not give her anything and had to just ride it out with her. Watching your child suffer through a seizure knowing there is nothing you can do but comfort them is absolutely awful. You feel so helpless and useless it's just terrible. When she settled down I paged Dr. Katz again. I wanted to start the Keppra then and he agreed. We had to try and break the cycle she seemed to be in. So she got Keppra and her morning dose of Tegretol. Needless to say we didn't see Sara's eyes open for the rest of the day. Much to our surprise she had another seizure in the evening around 11:00. Total of three for the day. So we're chalking Friday up as just a plain no good very bad day....

Saturday was better. We hadn't planned on doing much of anything but instead we did quite a bit. At the last minute we decided to go the mall in the afternoon and just as we were getting out of the car she had a seziure. She was sound asleep and I think she startled and started with one and I question if the blast of cold air made it really get going. We have seen in the past that extreme temperature changes can really affect her. So she got Diastat in the car and slept through our trip to the mall.
She didn't miss much, just hustle and bustle of annoyed holiday shoopers.

On a happy note though we finally got our new feeding pump on Friday. It had been promised to us two weeks ago and once we got past the few mix up's it finally arrived. She's now taking in 250 cc's of formula 5 times a day compared to her 190 cc's. The hope is to get her gaining some more weight. She goes back to the pediatrician on the 29th for her second flu shot (children under age 9 get two, one to boost their iummune system and then the actual shot), anyway I'm hoping she has gained something by then. One more thing to worry about. Why isn't she gaining?

We are still waiting for the ok to continue on with feeding therapy. I have a feeling that it will be put off until the new year. Everyone will continue to push their papers around for another week or so that we can be sure to make our deducitble right away in January. Sorry little sas there. Like we won't meet our deductible. Ha Ha Ha.... Sorry sas again.

So we are ofically ready for Christmas. Two years ago I started a scrap book for my mother in law and every year I add pages. We'll I was a little behind this year and pulled everything out the other day to see if I could get some pages together and I just couldn't. AGH what a year it has been. First all the steriod pictures where she was so bloated and uncomfortable. Then the hospital pictures from February and March. More hospital pictures from May, June and July and then the after pictures of the scar. Then all the pictures of Buddy, looking like the goofy dog he was. So, needless to say I was sobbing by the time I packed it all away and decided I just coulnd't do it this year. I had finally completed Sara's scrap book in time for the big birthdy party in October and the thought of re-living all of those memories again was just too much. Thankfully mom understands and agrees that next year we will fill the book with happy times. In hind sight though Lord I am so thankful for where we are today. She looks wonderful and is healthy enough to be surrounded by family this Christmas. That in itself is a blessing.

I hear people complaining about packing everything up in the car and heading out on Christmas day and how it's such a chore and I have to tell you that we can't wait. When you've been where we've been with our child it can really make your heart happy to see her in the arms of her grandparents, surrounded by love. Yesterday when we were heading to the mall I got tears in my eyes and laughed as I told Jeff that it's the little things that just make my day. To be in the car and look in the back seat and see our two girls there all bundled up and content is just the best sight to see. There have been too many times this past year when we haven't all been in the same car together. Too many times spent waving goodbye as an elevator door closes, fighting back the tears as they walk away to go home. Too many tears shed over missing things with Amy. Too many tears shed over the fact that Amy dosen't know what it's like to have a little sister, a little sister that she can play with. Too many tears shed for a child that hasn't really had a chance at life yet. It can all seem to so unfair and so over whelming at times. Yet this time of year makes us think of the sacrifes that God made when he sent his only son to us on that Christmas day so many many years ago. How he watched him suffer and eventually be crucified for all of us. It is our love, faith and hope in him that gets us through every day. It is just knowing that one day when we're all together in heaven, there will be NO SEIZURES, NO TEARS shed other then tears of joy. on that note may you all know the love of Christ this holiday season and may he bless you and your family like he has blessed ours. Yes, he has blessed our family, after all we're a family full of love for one another and what more could you want out of life. Nothing.

Love and hugs to everyone. God bless and Merry Christmas.

Thursday, December 11, 2003 3:16 PM CST

Results of the bloodwork are in and her Tegretol level is next to nothing. So after speaking with Dr. Katz this afternoon the decision was made to increase to 5cc's three times a day instead of 4 cc's and in a week if she is doing ok increase to 6 cc's 3 times a day. He did warn me that sometimes increasing Tegretol can increase seizure acitivity and if that should happen call him and we'll go off. So we wait and see. Tick tock, tick tock...

Last night I had quite a scare. Sara's gastrostomy feeding tube came out. She was getting ready to eat and I had just given her medicine and was putting her in the crib when all of a sudden it was out and lying on her belly. Talk about panic. "oh my god" is all I repeated for about 30 seconds before I slapped myself back to reality. I remembered someone telling me you could put a straw in the hole to prevent it from closing and let me tell you first hand that did not work. I called our pediatrician who told me he could have replaced it in the office (because I had a spare) but he was very sick and leaving and was afraid of getting Sara sick. He suggested I take her to the ER. I then called my sister-in-law to see if she could take Amy for me and thankfully she suggested I call Hunterdon first before going to see if they could do it and guess what. They flat out told me in the ER that they didn't feel they could handle it and that she should back to her surgeon. I was floored to say the least. THEN.... I spoke with Dr. Valda the pediatric surgeon who put the tube in and he felt I could probably take her to Morristown and they should definatley be able to do it. He also walked me through putting the old tube (that fell out) back in. Once we did that the "emergency" was over and it was just a matter of getting her somewhere to have the new tube put in. After mulling all this over I decided to go to Hackensack for many reasons. The most important reason being, they ALL know Sara. I was so afraid that I would get her in a new hospital, she would have a seizure and they would freak out on me. So my brother-in-law was kind enough to take Sara and I to Hackensack. Guess what happened on route 80? She had a seizure and we had to pull over for Diastat. Thank God we went to Hackensack because we probably would have been sitting in Morristown at that time. Never doubt a mothers instinct!! So after fighting the horrible rush hour traffic we finally made it to the hospital around 7:00 and by 9:00 we were dishcarged to go. We were only in the ER maybe 30 minutes tops. It was such a blessing. We walked in and the nurses all knew us, and were quite happy to see how good she was looking. Kind of sad yet also comforting when ER nurses know you and your child by name. There was no medical history to go over, just what happened and boom the new one was in. Which might I add was so simple I know now that I could eaisly handle it if it should come out again. Dr. Valda felt I could also but he wanted me to at least see it put in once before I attempt to do it on my own. So we made it home by 10:00 and I was so wired up that I didn't go to bed until close to 1:00 after Jeff got home. Amy stayed down the street and slept with her cousin and didn't miss us at all.

Needless to say we're all tired today and looking forward to going to bed early. So this is life as we know it "flying by the seat of our pants" or as I like to say "Holding on to Sara's shirt tail for the ride of our lives..."

Hope all is well everyone. Please keep signing in, we love to hear from all of you. Thanks for your support and continued prayers. God bless and be well.

Hugs to all -- Good night

Sunday, December 7, 2003 3:26 PM CST

Well I jinxed myself on the bloodwork. We went on Friday morning and they had a hard time getting it from her. First the left arm and then finally on the right. She cried and cried, it was so sad to hear. But thankfully they got it and didn't push her into a seizure from the stress. Although when we left we ran over to Shoprite and Jeff went in quick to pick up a few things before the storm and as we were getting ready to back out of our spot she was hit with a BIG one. Very very strong, she screamed and awful scream and we quick pulled back in and she got Diastat right there in the parking lot in the back of the Explorer for all the world to see. All I can say is thankfully no one honked at us to move because boy would they have gotten an ear full. The seizure lasted about 11 minutes. She actually has seemed to have a slight increase in her seizure activity within the past couple of days. We started to notice that the extreme temperature change affects her. We went to my parents house yesterday for a while and when we went from the warm house to the almost warm car she acted up a bit. Then Jeff stopped at his parents to help his mom shovel the driveway and Sara and I went home so she could quick eat. When we went from the car into the house she acted up again. I've heard others say that temperture changes can affect people with seizures and now we definately seem to be seeing some of that. Kind of makes me leary to take her out in this kind of weather. I don't know how much mall shopping we'll end up doing after all.

Anyway we're thankful the blood draw is behind us and I'm going to call Dr. Katz tomorrow. According to her med chart which charts her meds and her seziures we really don't think that the Tegretol is helping. Most of her seizures are occuring within hours of getting the Tegretol so the theory of her levels dropping may not be correct. We'll see what he says but we're hoping to go with plan B and stop the Tegretol and start something new. Please pray that the something new really takes a hold of her seizures.

Gotta run, Amy is calling --- We hope all of you have managed to dig yourselves out of the snow and that your all safe. As always, take care and be well.

Hugs

Thursday, December 4, 2003 12:52 AM CST

Wow it's been a while since I updated...

We made it through the Thanksgiving holiday and here we are in December already. Considering that we were banned from society last year at this time because of Sara's steriod it was wonderful to be out on Thanksgiving day this year. You learn to appreciate your extended family when you aren't allowed to see them. We'll at least we do :o)))
We went to my brothers late in the morning for a fabulous dinner, way too many trimmings but that's what the day is about and then we literally went down the hill to Jeff's Aunt's house for too much dessert. We hope all of you enjoyed your day with family as much as we did.

We saw Dr. Katz on Black Friday and he was so impressed with how Sara is looking. He hasn't seen her in a while and could not get over her, she looks like a "healthy" child. Nice word choice. He wants us to go for bloodwork and check her one medication "Tegretol" level to see if it's at a theraputic level, if it is, it may not be helping her so he plans on taking her off it and trying something else. If it's not at a therapeutic level then he will try increasing it some more to see if we can get better control over her once a day seizure. The hope is of course to be seizure free but even if we could go days, weeks or months in between seizures that would be great. I was supposed to take her this morning for the bloodwork but there was a glitch in our plan so we're going tomorrow morning pending the snow. Thankfully bloodwork to Sara is no big deal. It's actually quite sad when you think that she seriously doesn't even flinch when they take it from her. That can give you some insite into how many times she has been stuck.

We spent the weekend painting the livingroom and dining room and putting up our Christmas tree. It's amazing what a coat of paint can do to a place. Un-like many I know I'm not prepared yet for Christmas. I have some things done but still need to do more. Internet shopping is a blessing for us. Sara is right here on the bed next to me and we don't have to worry about finding a descrete place to give Diastat if we have to. I must be an idiot though to say that I miss the mall. I don't doubt that one day of pushing shoving, way to hot stores and angry people would cure that though and I'll go back to the computer. I would like to get their picture with Santa though so we'll see if we venture out or not.

Sara has been battling a cold since last Friday and is stuffy one minute and knocking you over with gooey sneezes the next. She's such a good baby though, you would never know she not's feeling well if you didn't know her. She rarely cries, in fact when she does, Jeff and I both run because something is usually VERY wrong. Even in the hospital the nurses would run once they knew it was her because despite all she went through they rarely heard a peep out of her. What can I say other then she's a GIRL !!! She's a tough little cookie.

So, that's about it. We hope all is well with all of you and hope that your not stressing over the up coming hoildays too much. Promise to take some time a sit back and just enjoy each other. This season is all about the miracle of Christ and the blessings of family and friends. Lord knows he has blessed us with all of the above. Himself, family and friends. God bless and be well.

Hugs to all

Friday, November 21, 2003 8:47 AM CST

After months of waiting for the insurance company we finally made it to the feeding evaluation yesterday. Very informative. We have a lot of work to do with her. She needs to learn how to use her tongue properly. Once she starts to get better with that it should also help her to start making the typical baby babble. Right now the sounds that she is making is definatly verbalization but not babble. She got quite ticked off at the new way we have to try and feed her, we have to hold her head still because she's like a moving target and that really ticks her off. But the more we practice she'll get used to it.

So now we have to wait again. Hildy has to write up a report and send it to our case manager and then they have to APPROVE Sara to continue on with therapy. I can't stand insurance. Ya know anyone with very little smarts could look at her and obviously see that she needs this therapy. But no, someone that dosen't even know her has to decide by what a piece of paper says, yeah that seems right. Anyway....

Seizure update is still one a day. We are off another one of our meds and thankfully we did not see any increase in activity. Which means that this med may not have been doing her any good. Unfortunately we did not get in to see Dr. Katz yesterday so I have to call this morning and see if he can see us next week. The thought of going back to Hackensack next week does not appeal to me at all but we do what we have to do. We popped up to see the nurses on 3 conklin before coming home and what a rush of emotions. Just walking down the hall brought back so many memories, some good and some not so good. It was great to see everyone but we don't miss the place that's for sure.

Yesterday afternoon after settling in back home, Sara and I were sitting together and she moved me to tears. She was sleeping on my lap when she started making this little noise that sounded literally like "he he he" and when I looked down at her she was smiling. This big open mouth smile, her belly was moving like it does with a big belly laugh and she looked so beautiful. It was the most wonderful sight to see. It's such a joy for her to be more comfortable in her own skin and the sound of her laughter blows me away. If only I knew what makes her laugh, the couple of times that it has happened she has been sleeping so the only thing I can think of is that the angels are tickling her, either that or Buddy comes back to give her kisses. All I know is it's literally music to my ears. I never thought that the sound of a child giggling could touch me that way but wow.

So on that note I'll say goodbye for now. Take care of yourselves, God bless and be well. Hugs to everyone.

P.S.
I forgot to mention on the last journal that I updated the photos with some from the benefit.

Monday, November 17, 2003 7:10 PM CST

Sara's benefit dinner was Saturday evening. What a great night. We were stunned by the response from the public. There were 250 people there, lots of family, friends, and new friends. They had a chinese auction with tons of stuff donated by local merchants and individuals. There were hot air baloon rides, ranger tickets and even a week time share, wow. A great dinner, dancing and just plain fun. It was such a joy to be around so many familiar faces and to meet all of those new faces that have been touched by Sara. There were family members in attendance that had never been able to meet Sara until that night. She was such a trooper. She had a pretty strong seizure in the afternoon that required Diastat and she was out for about 3 hours afterward. She had one little one during the dinner but it never took off thankfully. She had a slight cat nap during the night but all in all was awake, alert and seemed to enjoy all the attention.

We can't even begin to thank everyone for their generosity, and kindness. To say the least we were shocked and very touched that so many people came out to support our family. Sara is a true blessing to us and it was just amazing to see how many people she has touched in her short lived life. But I've come to believe that touching lives and hearts is what she's here to do.

Again, thank you to everyone, especially the Tall Cedars, for touching our family in a way that will never be forgotten.

God bless and be well.

Tuesday, November 11, 2003 1:01 PM CST

Well here we are half way through another week. Where does the time go. It's hard to believe that Sara's benefit is this weekend. We are floored by the response, 250 attending along with a waiting list. Blows us away. I'll admit I had some nightmares that no one would show excpet some family so this kind of a response is just unbelieveable. It just goes to show you how much one precious life can touch hearts.

Therapy is continuing to go well. She has a new stander that is much harder for her and God bless her she's doing great in it. It really makes her work hard. She's come so far since the surgery in June that we can only watch in awe of what she's accomplishing. Louise, her therapist and I set some goals for her this morning. We hope that in the next six months she's sitting without any support, rolling without getting her arms stuck and standing in her stander for 30-60 minutes a day. All very obtainable. We're also hoping to get her standing on her own, with some support like the couch or something, getting herself into a sitting position and possibly crawling a couple feet forward or backward. Just the thought of her doing any of those things delight us and with how far she's come there's no teeling what she can do. She's a fighter that's for sure.

We're still waiting on the feeding evaluation. It sounds like it will either be the 18th or the 20th of this month, just waiting for the confirmation call. Waiting, waiting, waiting, that's what we do :o)

If I could ask you all to please pray for Sara's friend Christopher. He's really struggling right now and needs all the prayers he can get. Also please continue to pray for Mary, Josh, Stefanie, Lydia and their families. My best friend Polly's father in-law had something explode in his brain the night before last. It may be a aneurysm (?) but so far they are not saying so please pray for healing and knowledge for the doctors to figure out what the next step is. Thank you all so much for your continued support. All of us with websites really appreciate your messages and words of encouragement. Christopher's site is linked from below, he would love to hear from you. Thanks again and God bless and be well.

P.S.
Sorry, seizure update, still about one a day. Although we did make it 10 minutes shy of two days without one. Maybe we should set a seizure free goal with Dr. Katz :o)

Tuesday, November 11, 2003 1:01 PM CST

Well here we are half way through another week. Where does the time go. It's hard to believe that Sara's benefit is this weekend. We are floored by the response, 250 attending along with a waiting list. Blows us away. I'll admit I had some nightmares that no one would show excpet some family so this kind of a response is just unbelieveable. It just goes to show you how much one precious life can touch hearts.

Therapy is continuing to go well. She has a new stander that is much harder for her and God bless her she's doing great in it. It really makes her work hard. She's come so far since the surgery in June that we can only watch in awe of what she's accomplishing. Louise, her therapist and I set some goals for her this morning. We hope that in the next six months she's sitting without any support, rolling without getting her arms stuck and standing in her stander for 30-60 minutes a day. All very obtainable. We're also hoping to get her standing on her own, with some support like the couch or something, getting herself into a sitting position and possibly crawling a couple feet forward or backward. Just the thought of her doing any of those things delight us and with how far she's come there's no teeling what she can do. She's a fighter that's for sure.

We're still waiting on the feeding evaluation. It sounds like it will either be the 18th or the 20th of this month, just waiting for the confirmation call. Waiting, waiting, waiting, that's what we do :o)

If I could ask you all to please pray for Sara's friend Christopher. He's really struggling right now and needs all the prayers he can get. Also please continue to pray for Mary, Josh, Stefanie, Lydia and their families. My best friend Polly's father in-law had something explode in his brain the night before last. It may be a aneurysm (?) but so far they are not saying so please pray for healing and knowledge for the doctors to figure out what the next step is. Thank you all so much for your continued support. All of us with websites really appreciate your messages and words of encouragement. I've added Christopher's site at the bottom, he would love to hear from you. Thanks again and God bless and be well.

P.S.
Sorry, seizure update, still about one a day. Although we did make it 10 minutes shy of two days without one. Maybe we should set a seizure free goal with Dr. Katz :o)

Tuesday, November 4, 2003 9:05 AM CST

Just a quick sign in this morning to report some good news. She seems much more purposeful with her facial expressions. Seeing a lot of partial smiles. It's such a joy to see her coming around more and more. She just plain seems to be happier in her own skin.

We're still waiting for the scheduling office to call us back to schedule her feeding evaluation in Hackensack. I left yet another message yesterday and at this point will be calling every day to get this process going.

We're seeing a flurry of seizure activity. This was to be expected as we come of the Dilantin, her body needs to adjust. She had two yesterday, one in the morning and one late last night. We see Dr. Katz next week so we'll see what he says about changing the med situation.

So that's it for today just enjoying the smiling moments.

Hugs and be well.

Sunday, November 2, 2003 8:44 AM CST

Good Morning All:

I'm so glad we went out for Halloween after all. Amy had a great time. She loved the fact that she got candy from the grandparents just for saying Trick or Treat. She walked in the local parade with Na Na and Pop Pop and thought she was the cats meow. Sara seemed to enjoy being out in the fresh air, I do think it helped our colds a little. Her seems much better while mine continues to hang on for dear life.

We ventured out last night to Toys R Us in Somerville then we went to Best Buy and Border Books and Music. We picked up the much wanted "Grinch" movie and "The Great Pumpkin Charlie Brown" As we speak Jim Carey is prancing around in his green grinch suit as Amy laughs hysterically. Go figure.

The girls and I went with Aunt Nancy and Aliison to the Califon Firemans pancake breakfast this morning. This is the first breakfast Sara has been to, it was so nice to be able to go. Last year we didn't get to any because of the steriod. Allison is going to come spend the day with us. Her brother Kyle has a football game in Trenton and Jeff is going with Lloyd and Nancy to go watch him play. The girls and I are going shopping. Who knows we may even start Christmas shopping, I suddenly have so many ideas in my head. I'd better utalize them before I forget them.

Anyway we have a quiet week coming up. Amy goes for a well child check up on Monday and other then therapy at the house on Tuesday and Thursday we're laying low. Jeff starts working the midnight shift this month, 11 pm - 7 am. We have no idea how this will work out but we knew when he started this job that he would have to shift now and then so we'll see. Wish him luck for sleeping in this house during the day. Worse comes to worse he can go down the street and sleep in his brothers quiet house during the day if he has too.

Sara's ready to eat and my laundry is done so I'd better go. I changed the pictures so be sure and check them out. As always God bless and be well.

Hugs to everyone

Friday, October 31, 2003 1:23 PM CST

Unfortunatelty the new medicine Dr. Katz wanted us to try, Carbotrol, did not work. It comes in a capsule form and like some medicines in the past, we open the capsule and dissolve it in warm water and put through her G-tube. The Carbotrol would not dissolve and despite seeing that I like a ding dong tried to get it through her tube thinking I could work it through, wrong. It completely clogged the end of it. Thankfully we had spare and I had to open it, so needless to say we are working on getting another one. We could sprinkle the capsule on food but I'm not confident enough in her eating ability yet to do that. She sometimes will take a couple of spoon fulls of something and other times she wants to try nothing. So it would be too hard to tell how much she's getting. Dr. Katz and I talked and he decided to up her Tegretol to 4 cc's 3 times a day and see what happens. We're slowly coming off the Dilantin and still having the seizure a day. I'm starting to question if the Tegretol actually does anything. We thought she was having lulls in her Tegretol level during the day but most of the time she will seize within an hour or two of getting the Tegretol so I don't know. Jeff also reminded me that by coming off the Dilantin as in the past with other meds when we come off one we can have a flurry of seizure activity. We see Dr. Katz in a couple of weeks so we will address the med issue again I'm sure.

She's doing great in her stander, she loves it. Looks like quite the big shot standing here reaching and playing with some toys. Another great milestone crossed. Her right arm still does not cooperate much but is showing signs of getting better. She fights me with her eye patch. I put it on and walk to the garabage to throw away the adhesive and she tears it off. Nice to hear she's a typical child right?! So we try and sometimes she leaves it alone and others she tells me what to do with it.

I had been saying all along that we were not going out for Halloween and low and behold were going anyway. With Jeff working the afternoon shift the thought of getting them both ready and in and out of the car by myself did not appeal to me. I quickly changed my mind though with the beautiful day. We're going to visit my parents and then go to Jeff's parents house. Califon has it's annual Halloween parade through town ending at the firehouse so Amy will walk down in the parade with mom and dad Hoffman and Sara and I will wait at the firehouse for them. Sara is going to wear either her flower costume from last year or Amy's old Honey pot costume. Amy is going to be a red crayon. I hope. She gets excited until she has to put the costume on. Wish us luck. I'm praying that the fresh air will do all of our colds some good. I know that sounds funny but maybe we just need to blow the stink off ourselves :o)))

On that note as always may God bless you all and keep you well.

Hugs

Monday, October 27, 2003 5:05 PM CST

Let me start this evening by saying Sara ROLLED OVER !!! Yeah, she rolled over on her left side Friday evening. It was a wonderful sight. I know this may seem like a small obstacle for some but this was huge for us. She's trying very hard to get over on the right but because her right arm is so weak she has a harder time. We're just delighted she was able to cross another bridge.

We finally saw Dr. Katz this morning. He was very pleased with her progress. He decided to start decreasing her Dilantin and start a new drug called Carbatrol. It's just like her Tegretol but lasts for 12 hours. Her Tegretol processes very quickly and despite the fact that she takes it three times a day she still seems to have some time where her coverage is low. So we're starting one dose of Carbatrol at 200mg in the morning and a small dose of Tegretol at night. We anticipate sleepiness for a few days until her body adjusts to the new med. If she continues to be sleepy we need to contact Dr. Katz and he will stop it. It may be too strong for her we don't know. Having discussed her med situation with him it's so amazing how far she has come since last year. She was taking 8 medications at this time including the steriod injection and was basically comotose. We are currently on 4 seizure meds and will be coming off of one. I know the purpose of surgery was not to get her off anti-seizure meds completely but you can't help but worry as a parent what these meds are doing to her system. She's been on them since she was six weeks old. We also talked about the Diastat and my concern on whether or not it actually helps her. She usally gets it when her seizures continue for 3 minutes. The concern is that the seizure still continues for another 3-4 minutes after the Diastat for a total of anywhere from 6-9 minutes. My question was if we don't give the Diastat would the seizure still only go for 6-7 minutes and will it stop on it's own. Unfortunately he can not answer that and I didn't think he could but I had to ask. His suggestion is we let the seizure go for 5 minutes, only if we are certain we caught the beginning of it, if after 5 minutes she is not slowing down then give the Diastat. If she seems to be slowing or losing intensity at the 5 minute mark don't give it. We're thinking she's building up a resisitence to it because she gets it about every day. So we'll see with the next seizure what happens. I'm worried to let them go on their own because I fear damaging her remaining brain.

We canceled therapy for tomorrow morning knowing the new med will knock her for a loop. Hopefully by Thursday she will be back to herself. I hate to introduce new drugs and go through the sleepy phase. She has been doing so well with "awake" time that we don't want to go backwards but what can we do.

Nothing else is planned for this week so far so it should be a relatively quiet one. We are all sniffling, sneezing, coughing and complaining. All that is except for Sara and thank God for that.

Thank you for checking on us and as always God Bless you all and be well. Hugs

Saturday, October 25, 2003 9:33 AM CDT

Well another week has come and gone. We've recouperated from the big birthday bash last Saturday. Despite the fact that we have all been sick (except Sara) this week has been a good one.

We went to Hackensack on Wednesday and unfortunately the only thing we accomplished was getting her Cat Scan. Amy had gotten sick the night before and was running a 102.7 fever. She was supposed to go to my brothers house on Wednesday so I could see everyone in Hackensack but due to the fact that she was sick I cut the visit short to get home before Jeff went to work. Jeff works 3-11 so she stayed home with him while I ran Sara up for the CT and we tried to move our appointment up with Dr. Fried and Dr. Katz but we were unsuccessful. Dr. Fried was in surgery in another hospital and Dr. Katz could not be reached... hmmmm.... Anyway at least we got the CT done. I have not heard anything from the office so I'm assuming all looks well, Just in case though I'm going to call on Monday. Speaking of Monday we go back to Hackensack to see Dr. Katz. I don't want to put off seeing him any longer. He's going to tweak her meds some and see if we can get better control of her seizures. Looking back at her a year ago she's so amazing. We were just getting stated on the steriods at this time last year and we were still in the hospital so what we have now is truly a blessing. Oh, in case your wondering Amy has a virus, no infections. Strange how she can run a fever like that for two days and nothing shows up. Jeff has it now, sniffling, sneezing, coughing and just plain miserable. Me, yeah I'm sniffling also. Oh well, welcome to the Fall, which believe it or not is my absolute favorite time of year. If we could have weather like this all year I would love it. My dream is to live in an old farm house in Vermont. Maybe some day. How did I get on that subject???

Back to Sara. She has a stander now and she really seems to enjoy it. I think the change of position is nice for her. A stander is this contraption that we hook her in to and stand her up right. It helps to give her the sensation of body weight on her legs. Amy thinks it's a riot when she's in it. She brings her toys and stands next to her talking their very own language. I added new pictures on the site, one of witch is her in it.

Nothing new with Sara's seizures still about one a day. Last night I had gone to the Dress Barn with my best friend Polly and she got to see one first hand. We were both frantically trying on outfits to find something for Sara's benefit dinner in November. I had stepped away from the dressing room with Amy and Polly called me back in. She caught the seizure. As bizarre as it may sound it was nice to have someone out of the family witness what can happen at the spur of any moment. So we can now add Dress Barn dressing room to our list of places we have given Diastat.

Right now she's trying as hard as she can to roll herself over on the floor. It's these small little accomplishments that mean so much to us. Well I should get going now, I hope I didn't ramble on to much. Thank you all for your continued support and prayers. As always may God bless you and keep you well.
Hugs to all

Monday, October 20, 2003 5:05 PM CDT

Happy Monday !!

Well the combo birthday party was wonderful. Despite the fact that it was COLD and we were outside it was great. Unfortunately being the hostess I didn't get to visit with everyone as I had hoped but it was heart warming to know that the girls were surrounded by people that loved them. Amy had a blast running and playing with all the kids and Sara spent most of the day cuddled up like a bug in a rug with Aunt Polly. We think she was the warmest one there. No seizures that day, she knew it was a joyous occasion. Way too much food just as I thought but better too much then too little.

We did go to the eye doctor last Wednesday. What a wonderful guy. Dr. Kitel in Bethlehem, we would highly reccomend him. Numerous things. She's near sighted but he's not going to do glasses or anything like that just yet. She's only seeing out of the left part of both eyes. Which means if she is looking at a TV screen she is only seeing the left side of it. This is probably due to the surgery. Dr. Fried had told us that her peripheral vision should come back but Dr. Kitel does not think it will. We will remain hopeful since she is seeing so much better then she was two months agao. She has Nystagmus which is why her eyes twitch on her end gaze. This can be from all that she has been through. He does not think it will go away and does not think it's related to her Dilantin. She also has Coloboma Retina Dysmorphic of her right optic nerve. That's a mouth full. If I understand it right her optic nerve is pale and looks as if someone splatter white paint all over it. This could have happened in Utero or from an infection. He said it won't go away but the good news is that it shouldn't get worse. He could not get a good enough look at her right eye and will try again in January when we go back. He wants us to patch her right eye 2 hours out of the day until January. Her eyes tend to stray outward every now and then and by patching it he thinks we can make them stronger. She hates the patch and we are working up to the two hours. Right now only about a half hour each day.

We go to Hackensack on Wednesday. She has a Cat Scan and a visit with Dr. Fried and Dr. Katz.

We hope that everyone is doing well. I have to run... Despite the fact that Amy has a room full of new toys to play she still manages to find time to have a daily melt down :o)

God Bless !

Tuesday, October 14, 2003 1:57 PM CDT

Well we never made it to the Pediatric Orthopedist yesterday. Sara had a very hard seizure and we kept her home. She has started something new, she holds her breath. Not every time but when she does it scares the heck out of us. After yesterday morning, I called "The King" (her neurologist). He suggested we increase one of her medicines, Tegretol, and when we see him next Wednesday we may start coming off the Dilantin. He's also thinking about adding something new but we will discuss that when we see him.

The problem Jeff and I are having is that they removed the focal point of her seizures. Remember... The whole left side of her brain. That said if there are no seizures coming from the right then where are the seizures that she keeps having coming from. Hard to say... also hard to swallow without screaming WHAT !!! She could be having them because her brain still needs time to settle. We were told in the beginning that we may not see the full effect of the hemispherectomy for 6 months to a year, and there are still some connections from the left side to the right side and they can also be coming from that. UGHHH !!! I think sometimes that the doctors say things to you like blah blah blah and expect you to just say "OH, OK." Don't get me wrong I'm not doubting our doctors at all it's just that they don't live with this on a daily basis and it can be very frstrating as a parent.

I think my biggest gripe in general is that we are in no way looking for sympathy. The last thing we want people to say is "Oh poor Sara... that poor Hoffman family." What I AM looking for though is a little understanding. I just don't think people get that we can no longer just "GO." I hear so many times that "You should get out" Get out... hello.. Picking up at the spur of the moment does not happen here anymore. You don't just leave a child with epilepsy with your "babysitter." When we do get out as a family you are constantly checking and re-checking your bag to make sure you have Diastat just in case. Do these people know what it's like to be in Lowes and have your child have a seizure in the paint isle? "Just get out" How about just starting to think before speaking.

I'm so sorry for going off on all of you it's just that some days I feel like I'm on the edge of the cliff and all I need is one little tap or even a slight breeze to blow me over. I see people with healthy "normal" children and I can't help but wonder if they truly know how fortunate they are. I hear them complaining about them for one reason or another and I wonder if they know how lucky you are to be telling them to cut it out and behave?

I believe that children are a gift from God and Sara is no exception to that. She was sent to us by God and we would not trade our situation for any other. So why you ask am I complaining. I don't know, I guess just because I can. Looking back at her a year ago it's so obvious how much we have been blessed. Last year at this time she was in the hospital and starting her steriod injections. Life is better so much better. I gues I want normal and I don't know if we will ever have what society considers "normal."
That breaks my heart.

God bless and be well.

Thursday, October 9, 2003 3:26 PM CDT

Hi all:

Sorry it's been a while since our last update. Just been plain busy busy busy. Sara is doing well. Her therapy continues to be great. She's getting stronger and stronger. We're still waiting to begin the feeding therapy. I had to fill out new paperwork and send it back and now I'm waiting for the intake office to call with a new consultation date. I'm giving them until tomorrow morning and I'll be calling them to see what the hold up is. She went to the Pediatrician's office yesterday for a nurse visit and had three shots. She did very well. Next month when she goes for her well baby visit she will finally be caught up.

Her seizures are still about one a day. Although on Tuesday she had a pretty hard and strong one. I'm glad Jeff was here to see it. He's been trying to get me to loosen my apron strings a bit and I'm having a hard time for numerous reasons. After seeing what happended he can now understand completely what I've been talking about. Yes for the most part her seizures are mild and sometimes do not even require Diastat but then she throws one at us like Tuesday and it catches you off guard and scares the heck out of ya. I just wish this was a more predicitable thing, but it's not so we have to continue to live by the seat of our pants.

We're in the midst of working on the big birthday party next Saturday (18th). I'm very excited. I can't wait to have our family and friends all together and celebrate the girls. I'm hoping everyone comes hungry because God knows we are going to have way too much food. That's ok I'm actually hoping for left overs :)

Next week will be crazy. She goes to an orthopedist on Monday. The therapist is bringing a stander and wants us to make sure that Sara's hips can handle being in it. So off to another specialist. Just this visit though, she's not getting her hooks into us :) Tuesday she has therapy, Wednesday she goes to the eye doctor, Thursday therapy and Friday, well Friday we're resting up for Saturday.

So that said if I don't get back on line I hope all is well with all of you. Please continue to sign our guest book. We know your checking in because of the hits but your not signing in so we don't know who you are :o))) Hugs to all.
God bless and be well!

Sunday, September 28, 2003 12:07 AM CDT

We finally made it back to church this morning. It was great to see everyone, it felt like coming home after a long trip. NICE. It's been so long since we've been there, our last service was Easter Sunday which seems like a life time ago and in a way it kind of has been a life time. Sara's lifetime. She's come so far since Easter Sunday. She's had her surgeries and has greatly improved. We use to lose count of her seizures now for the most part she has one a day. Sure we could be selfish and say that we don't want any seizures but we have to be thankful, so thankful at how far she has come. The doctors are hopeful that she can still be seizure free. It's just a matter of giving her brain time to settle, how much time? Unfortunatley no one can answer that. It could also be a matter of tweaking her seizure meds a bit more. We go see "The King" tomorrow morning in Hackensack. He had once talked about adding a new medicine called Kepra, (I think that's it) so we'll see what he has to say. I'm looking forward to him seeing Sara. She's improved so much since her last visit with him and I think he will be impressed. Although we're taking Amy with us so he may be pulling his hair out instead :o) I hope I'm not coming across in a negative way about Sara's progress because I am truly tickled pink about where she is. As a parent of course you want your child healthy and like all the other "normal" children. I know that Sara is special and believe me she's special to us despite her Epilepsy, she's ours. We do feel that her surgery was a success and we would do it all again if we had to. She could not go one the way she was living. Now it's just a matter of her learning to live if that makes sense.

It's funny, I was just on the phone with Jeff's Aunt and she and I were talking about how fast time goes by. It's hard to believe that Jeff and I will be married 13 years tomorrow and that Amy will be 3 next month. My neices and nephews are growing into little adults right before my eyes and I can remember changing diapers and making someone's day with a pair of cowboy boots. Where did it all go? Do me a favor, in the midst of the crazy chaotic lives we all lead, and during those moments when you think "I can't wait until..." stop and hold the ones you love close to you and let them know your heart. Time in fact does go by so quickly and before you know it the craziness is over and the house is empty. Sara has taught me so much, espcially that dust bunnies, dishes and dirty clothes can sit sometimes I need to sit and just look around and ENJOY the craziness of life.

Take care, God bless and ENJOY.
Hugs to everyone.

P.S.
Please continue to keep Sara's friends in your prayers. Christopher is struggling, Joshua is in the hospital, Stephanie had a surgical procedure and Mary, little Mary hopefully is on her way to Disney World. Go Mary !!

P.S.S.
Oh my Gosh, as I was previewing my journal Sara GIGGLED. She GIGGLED. I'm so happy I could giggle and cry at the same time. Ahhh, she giggled. Life is good :o)

Wednesday, September 24, 2003 6:48 PM CDT

Well let's just say we have had an eventful week here at the Hoffman house. It all started on the night of Hurricane Isabel (last Thursday) we lost power at 2:30 in the morning and never got it back until 2:00 on Sunday afternoon. We were out for 60 hours. Thankfully our neighbor had a generator and was able to hook our refrigerator up to it so we did not lose everything. Unfortunatley though Sara needs electricvity. Her feeding pump runs on power. So we were gypsies for a couple of days. We stayed with my in-laws, Friday and Saturday. The girls and I had already planned on staying with my parents for a few days due to Jeff going away to St. Louis for work. Anyway long story but we are finally home in our own house and enjoying every minute of it. It brought back memories of being out of the house due to hospital stays and we don't want to go down that memory road anymore. (P.S I have applied for something called Critical Care through the electric company and IF we get approved they will give us a generator for Sara in case of future power outages.)

Speaking of Sara, she is doing great. She's squaking more and more. I call it squawking but I guess it could be called babbling. It just does not sound like your typical baby babble. All we know is it's music to our ears. She's eating more and more but we have to be careful not to give her too much at a time until we see the feeding specialist. Her tube feedings will need to be adjusted as she eats more. I'm waiting for the intake office at the hospital to call me back to schedule another appointment. I think I'll call them again tomorrow. I hate waiting, I'll admit I'm not very patient when it comes to that.

Amy is a typical 2 and 3/4 year old. She'll be 3 on October 24th and we're going through the temper stage. "No" is not something she likes to hear. I find myself trying to come up with other ways to tell her she can't do something to avoid the hysteria. But what can I say other then if she was 12 and doing this I would worry. Right now I know it's her age and I know she along with everyone else in our family has had a rough year so I'm trying to keep that in mind. Alot of seperation anexity also. But again I attribute that to being left behind when I would go to the hospital for weeks on end. I'm just thankful she's so young and I hope she won't remember alot of this. I also pray she doesn't hold it against Sara someday. I've talked to other parents with more then one child, one of which who is sick and it's hard for the other siblings to not get mad at the sick child for taking so much of the parents attention so that's always in the back of my mind. I'm trying to involve her more and more in Sara's care. She really hasn't had a chance to know what a little sister is. Now that Sara is getting better she can play with her a little more and I think that's making a huge difference. She helps me get her toys and also helps with massage therapy. I think she just likes to make a mess with the oil but at least she thinks she's helping.

Well I can't see the living room floor through the pile of toys. Seriously I really can't so I'd better go and try and get someone ready for bed, without using the word "No". Wish me luck :o)

As always take care of yourselves and God bless.

Monday, September 15, 2003 6:32 PM CDT

Ahhhh, a new week!

Sara is doing great. She's been eating like there's no tomorrow. Today through out the day she ate a whole jar of carrots, with a little help from her sister who suddenly has an over whelming interest in Gerber baby food. Go figure :o)

She's making more and more noises, actually sounds more like cooing now. As happy as I have been to hear her making noises its funny how between the hours of 1-3 in the morning you can't help but say "shhhh, go to sleep." Seems like this is a new hour to be up and talking. In hind site though, I'll take it.

We go see Hildy (feeing specialist) tomorrow in Hackensack. I can't wait for her to see Sara. The last time she saw her she was in the PICU you and not looking her best.

Strange thing happened to us this weekend. We ventured out to the Phillipsburgh mall Saturday night. While in Sears minding our own business a women comes up to Jeff who was pushing Sara in her stroller and starts making comments about Sara's scar on her head. Apparently she has a two year old granddaughter who had a tumor and has a similar scar. Jeff says to her that Sara has Epilepsy and the women says "oh that's OK..." Which if course I piped in "Ah, no it's not." But she then says "her granddaughter had half her brain removed..." "Ah so did Sara." With that the conversation kind of faded out and I was thinking how mis-informed the outside world is to Epilespy. It just so happens that the local Tall Cedars approached Jeff and I about a beneift dinner dance they have every year in November and how they raise funds for an individual or family with a sickness or struggle, etc., we'll this year they would like to honor Sara. After putting our pride aside we said yes, that we are very honored that they would like to help us. I guess what I'm getting at is that we have an opportunity to maybe raise awareness a little at this beneift dinner and being what I still consider "wet behind the ears" I'm not quite sure how to do that. If anyone out there has any suggestions I would love to hear them.

We'll someone is tugging on my sleeve to play before reluctantly going to bed so I'd better go. Thank you for your support and prayers. You as always have been wonderful especially this past week and our family thanks you.

Hugs to all.

Saturday, September 13, 2003 8:44 PM CDT

Sara ATE squash today... Yes she ATE it with her MOUTH !!! I was getting her changed this afternoon and she kept putting her hands in her mouth so I thought what the heck lets give it another try. She did great. Granted she didn't eat a whole jar but she gobbled it down like they were the best thing she every had. It was a wonderful site. I think she's going to have a hard time with thinner liquids. It's kind of like they surprise her and catch her off guard. We go to Hackensack on Tuesday to meet with Hildy the feeding therapist. She'll be so thrilled that she's eating a little. I'm sure she'll have some suggestions on the drinking. We really feel like we're moving forward. She really is getting better. Her therapy is going great here at home with early intervention.

This was a great ending to an awfully hard week for us with losing Buddy. Our hearts still ache and we all miss him and look for him to come around the corner with that goofy look on his face. Amy says he's walking with Jesus, we sure hope so. Thank you for your continued prayers and support. I added a new picture of Sara eating her squash. You can't really tell by her expression but she really did seem to like them :o)

Take care and God bless you all.

Wednesday, September 10, 2003 9:44 AM CDT

Sara is doing well. She had a visit with the pediatrician last Friday and received five more vaccinations. He was so impressed with how she looked. This was the first time in quite a while that he has seen her healthy. She will go back in one month for more vaccinations and then by her 15 month check up she should be all caught up.

It has been a horrible past few days for us. We had to put down our best friend, Buddy yesterday. He was a wonderful dog and we had him for 5 great years. We miss him terribly and hope that time will heal our broken hearts.

God bless and be well.

Wednesday, September 3, 2003 7:11 PM CDT

Yesterday she had the Broviac Catheter in her chest removed. YEAH !!!! She did great and actually seems better today. I'm sure it bothered her and hopefully it's a relief to her to have it out. We held her out of therapy today to give her time to heal and it's a good thing, the poor little bugger slept most of the day.

We canceled her feeding evaluation scheduled for tomorrow at Mountainside. They wanted to re-invent the wheel as Dr. Katz would say. They wanted to put her through testing that she already had done in February and they wanted her to have neuro and psychiological (? spelling) evaluations. Number one she is followed by a neurologist and neurosurgeon and does not need another neuro evaluation and number two she's only 13 months old how can they do a psychiological evaluation?? Don't know. We were lucky enough to get in touch with the feeding specialist in Hackensack and she goes back there on the 16th for an evaluation with her. She already knows Sara and was there for all the testing so there is no need to put her through re-inventing the wheel and un-necessary testing. Thank God.

We had a nice three day weekend together as a family. Saturday was fun for my dad's 75th birthday. Amy even surprised everyone and sang to him. Despite Sara having a seizure she impressed everyone with her appearance. She was very alert most of the day and just all around content. Sunday we laid low for the day and Monday we went to Jeff's brothers house down the street. Nice rainy day for a picnic. Despite the weather and a seizure she had another good day. We were sad for yesterday to arrive and daddy to go back to work but we're thankful for the three days we had.

We hope that this update finds all of you well. We're finding out more and more how much God is in control of our lives. Despite the fact that our faith has truly been tested, especially lately, he always shines through and lets us know that he is there and that if we trust in him he WILL get us through. A good friend told me recently that this is the only hell we as christens will ever know ... AMEN to that !!
Our God is so awesome !
God bless and be well.

Thursday, August 28, 2003 7:44 PM CDT

Well the visit with Dr. Lieberman went well. Nothing much to report though. He does not want to do anything. Which actually I was delighted to hear that. I was afraid he was going to order a bunch of tests and we were going to have to torture her again. Nope. Very conservative guy. He feels that since her VCUG and renal Ultrasound were negative there is really nothing else to do at this time. He agrees with the pediatrician that we will continue to treat her with a provalactic antibiotic to cover her from getting future infections. Since she has no kidney malformations showing and no reflux into her bladder any testing would result in the same final decision of treating with the antibiotic so why put her through it. AMEN !! He said that maybe in a few years we would want to pursue some more testing but for now there really is not a need. Why does she keep getting the infections? we would have to do the tests to find out and whats the difference, none. So we'll go with treating her for 6-9 months and see what happens after that. Hopefully she won't get any break through infections but there is always a chance. So as crazy as it may sound I was happy with his answer. I was dreading having to put her through anything else. He did say that she has a very small bladder capacity which may cause problems in the future when it comes to potty training but even that's not written in stone. There are things we can do to help with that but why bother with that now. He was a very nice guy and it was a breath of fresh air to meet someone who is not test happy. Sorry.... but it's true.

So here we are. She had a good day, no seizures so far. She had a good one late last night and I gave her a whole Ativan pill and I think that helped but it really throws her for a loop. Right now she's kicking and looking around watching me type. Oh, yeah Dr. Lieberman says pull the Broviac line. Why have it in just in case. It's a foreign body and can also be a pathway to infection so I'll call Dr. Valda's office in the morning and hopefully they can get us in next week some time.

On that note, I'm going to sign off for the night. If I don't get back on have a safe, healthy and happy Labor Day weekend. Enjoy your families, God bless and be well.

Wednesday, August 27, 2003 2:12 PM CDT

Sara's having good days and bad, but hey don't we all. We're trying very very hard to look at the little things, the every day little things that are happening all around us instead of frantically looking for the big earth moving events. She is doing very well with therapy. She has been bringing her hands to her mouth and exploring. This may not sound like much but's it's somthing she should have been doing as an infant, so it's a step for us. She's obviously stronger on her left side but that was to be expected. She's making some noises :o), not really babbling but she's definately making sounds. YEAH !!! She's reaching out for things and tracking with her eyes. All in all she looks wonderful.

Still battling the urinary tract infections. She goes to the Nepherologist tomorrow afternoon at 2:30 in Hackensack. We're praying this is the guy with the answers. Dr. Katz tends to think that if we get to the bottom of her infections (ha, bottom get it :0) and get her feeling better, her seizure control will improve. When she's feeling better her seizures are not bad, about one a day and we can live with that. As soon as she spikes a fever of any kind they come roaring back which is expected. Just to give you and example of the up in the air living we do here, she had two seizure free days and yesterday had Diastat twice and Ativan once. Which means, not good. So we never know from one day to the other what she has up her sleeves.

Jeff is going to take a much needed three day weekend and we're going to have some QUALITY family time. We're hoping and praying for nice, not too hot weather so we can maybe go to the park up the road from our house. My father turns 75 tomorrow and we're getting together to celebrate Pa on Saturday night. Monday we were invited to Jeff's brothers house two doors down from us to a picnic. We're looking forward to going and again praying that the weather is not too hot for Sara. Maybe we can even try her in the pool and see what she thinks of that. In the end it really dosen't matter though what the weather does, all that matters to us is that the four of us will be together as a family and that's what it's all about. FAMILY !

So on that note I will end my journal for the day and hopefully get on tomorrow night or Friday to update on what the doctor says tomorrow. Pray for an answer to her infections. Thank you all for your support and prayers as always. God bless and be well.

P.S.
I did update the pictures but I'm having a hard time with one of them so bear with me, hopefully I can figure out what's wrong.

Wednesday, August 20, 2003 1:54 PM CDT

Sara had a bad day yesterday. She never made it to the pediatrician's office on Monday. As we were getting ready to walk out the door they called to cancel us because the doctor was very sick and they were trying to get her home. They prescribed medicine for her over the phone due to the fact that she was showing all the signs of another urinary tract infection.

Yesterday she spiked a temp of 102.4 and had seizures off and on pretty much all day. She had two doses of Diastat and a pill and a half of Ativan. I spoke with Dr. Katz later in the afternoon and we were both concerned with the meds she had on board. The problem with those medications are that they can suppress her breathing if she gets too much. I was watching her like a hawk and getting nervous. He told me to give her another half of Ativan and if she seized again after a certain time and needed Diastat at that point she could have one more dose but if she didn't settle down and stop he wanted her in Hackensack. Of course my heart sank at the thought of going back in but I knew if she needed to it would be the best place for her. She finally settled in and calmed down completely around 8:00. She slept through the night with no episodes and seems ok this morning. She's napping at the moment, I take that back she's watching me with one eye open :o). We have an appointment in Hackensack tomorrow with Dr. Katz and the pediatric opthamologist. We did get her in with the Neuphrologist (kidney doc) next Thursday 8/28. Hopefully he can get to the bottom of why she keeps getting infections.

We missed therapy again today mostly due to yesterday and not wanting to stress her on top of everything. Everyone keeps telling us that things will get better and we seem to be proving them all wrong. As always thank you for your support and prayers. Please continue to pray for Sara (she needs it) as well as her friends, Mary, Stephanie, Christopher, Josh and Lydia. God bless and be well.

Monday, August 18, 2003 10:28 AM CDT

Hello Everyone:

It's been a few days since signing in. We have a new computer and I've been having a hard time getting on line. All is working now.

Thank God last week is over is all I can say. The Hoffman's had a very rough week. Lots of things happened that made us think we couldn't possibly go any lower and just about everyday we did. Too much to go into. We're just grateful for a new week.

Sara never made it to the pediactrican last Friday. She had spiked a temp the day before and was not going to be able to get her vaccinations because of it. She is actually going today at 3:30. She's struggling through her feeds again and showing all the signs of another urinary tract infection. Her antibiotic stopped on the 14th and I'm afraid she has another one. We'll see what the doctor says this afternoon. No known reason why she keeps getting them. All the necessary testing was done and all results were negative so it's a mystery.

She's been doing great with therapy and really seems to be coming around. She's just about sitting on her own. A little wobbly but working on her own to balance. She looks great, very alert, much more so now then ever. I have new pictures to put on and hopefully I can do that tonight.

We have fairly quiet week. Other then therapy on Wednesday we'll be going to Hackensack on Thursday to see her neurologist and also meet with a pediatric opthamologist (spelling ?).

On that note I need to get in the shower and take advantage of the quiet moment in the house. Take care and as always God bless and be well.

Wednesday, August 13, 2003 6:07 PM CDT

It's been so hectic since I last signed on and I wanted to start by saying thank you to everyone who signs the guest book. It was such a nice treat to hear from so many of you in the past couple of days. Your words of encouragement mean more then you could possibly know.

Sara is hanging in there like to the little trooper she is. She had therapy twice on Monday and it was a bit much for her. She made it through the 1/2 hour at Mountainside just fine. Jamie was impressed with how much she seems to have improved already. Early intervention came to the house in the afternoon and they were scheduled for an hour but we only made it through about 30 minutes. Our therapist agrees that 60 minutes at a time may be too much right now. She gave me a bunch of new things to do with her, and she was very informative, I was really impressed with her.

This morning we had back to back therapy at Mountainside. Again too much. The 30 minute PT session was good but the following 30 minute OT was not so good. She was MAD as a hornet. Again Jamie was impressed with her and we are sad to say that today was Jamie's last day. It figures, just when we were settling in with her. We wish her luck in her new job and we will miss her.

She was out like a light in the car within 2 minutes of leaving Mountainside. She slept all the way home and had a fairly good day afterward. She did have a really hard seizure around 3:00 and of course got Diastat. Thank God for prescription plans. Right now she's sitting here in her chair looking around and waving her arm in the air. Watching and learning from the master of trouble, her sister :o)

We're happy to be coming to the end of a hectic week here at the Hoffman house. Seems like something going on every day. Sara has her 1 year well baby check up on Friday and hopefully will have no bugs in her system and she will catch up some more on her vaccinations. Please keep that visit in your prayers, vaccines make me nervous. Hopefully we'll get the green light again and try and get her broviac pulled.

Anyway that's it for now. Again thank you all so much for your much needed support and prayers. Please continue to keep Mary, Stephanie, Josh, Christopher and our new friend Lydia in your prayers as well. God bless and be well. Until next time, Good night.

Wednesday, August 13, 2003 6:07 PM CDT

Friday, August 8, 2003 6:11 AM CDT

Good morning all:
We're back to getting Diastat once a day to stop seizures. As I type that I think I should count my blessings that it's only once a day and not 3-4 like in the past. That's just a hard blessing to count considering all she's been through to stop these darn seizures. What's also mind boggling is that we're almost off one seizure med and we're still obviously getting the flurry of seizures that we were told to expect. It makes you wonder if the medicine was actually working but Dr. Katz says we can't think that way. It's just her body adjusting. Neurology!!! AUGH!!!

Wonderful news is, I was working with her last night with her therapy and she really does well. She was sitting up, crossed legged and propped with a pillow under her elbows and she looked like she was enjoying it. She was looking all around and I THINK she was half smiling :o). I've been waiting and waiting for this smile and I sort of got one last night, yeah. She was definately pleased with herself. She's been enjoying more tummy time also. It's hard for her to lie flat on her stomach because of the Broviac Catheder still in place so we slide a thin pillow under her chest and she seems to get quite comfortable. She lifts her head and neck more and we're working on getting her to push herself up a bit with her arms. I massage her legs and arms with baby lotion and she really seems to enjoy that, but then again who dosen't enjoy a massage. She'll go for therapy twice next week at Mountainside which will include PT and OT plus early intervention is going to start coming to the house once a week beginnng on Monday. She's going to be so happy with us. She's quite funny when it comes to therapy, she gets all mad and cries but no tears, just voices her opinion. She shuts her eys like "go away" and then she'll open one like "your still here?" and finally she just gives in and works hard to get stonger. She's a fighter.

We take each day as it comes and we're trying to deal with our emotions as best we can and above all we're clinging to the fact that God is in control. It seems when I need support or encouragment the most he sends me some without even asking. A phone call from a friend, a card in the mail or someone signing in on the guest book. Thank you to all of you for your continued support and prayers. I don't know what we do without you. Tonight when you say your prayers, please remember Sara's friends, Mary, Josh, Christopher and Stephanie as well.
God bless and be well !! Hugs to everyone :o)

Friday, August 8, 2003 6:11 AM CDT

Monday, August 4, 2003 2:37 PM CDT

We made it a year.... Yesterday was Sara's first brithday. The poor little thing was a bit under the weather but it was nice to be home. My parents and Jeff's parents came for dinner and cake. It was so nice to have them all here with us. They were all impressed at how well Sara looked. Very alert and for a change to them she was awake. She spiked a fever Saturday and Sunday and again this morning though. I spoke with Teri at Dr. Fried's office (surgeon) and she said that he mentioned that it's not uncommon for children who have had brain surgery especially a hemispherectomy to have fevers. It's hard for them to regulate their temperatures for a while. Which would hopefully explain Sara's sudden fevers again. Unfortunately.... we went to see Dr. Evans instead of going to therapy this morning and she has another UTI. This makes her third. She's going on an antibiotic for 10 days and she will definately have to see a specialist now. Since her renal ultrasound and VCUG were negative Dr. Evans would like her to see a Nephrologist (spelling?). Of course there is a great one in Hackensack. Which actually at this point we would prefer. They know us there and God forbid she has to go in the hospital for something we would like her to be where her other docs are. This also means we will not be pulling the Broviac catheter from her chest tomorrow as scheduled. Oh well. I've become a pro at changing the dressing.
Everyone has been so supportive of us and keeps telling us to be positive. That's kind of hard though. We live this everyday and sometimes we just feel like we're sinking in the deep end of the pool. We're trying, that's all we can do. Thanks for all the birthday cards and wishes for Sara. Our wish is for a healthy seizure free year. God bless and be well.

Friday, August 1, 2003 3:42 PM CDT

We'll our streak ended two days ago. Sara had to have Diastat to stop one of her seizures. She is currently coming off one of her seizure medications and Dr. Katz told us to expect a flurry of activity. We'll just as promised we're in the midst of the flurry. She has increased to about 3-4 seizures a day. Most of them are not long and do not require Diastat but then there are those few that sneak in. It's discouraging even though expected. I spoke with him yesterday and he perscribed Adavan (spelling?) for her as a bandaid so to speak. I'm a little nervous because he is going away next week and it never seems to fail that trouble happens. I was trying to nip it in the bud and he agreed so that's the reason for the new med. It will only be used if she is having a very bad day and hopefully that will not happen. It's just nice to have a plan. She has been doing so well. A lot more awake time during the day. Therapy really seems to be helping her. Despite only going once a week for now, we work with her here at home everyday and we think that's key to getting her better. Right now the poor little one is sleeping off some Motrin (fever) and Diastat. Hopefully the rest of the day will be better. She goes to have the Broviac line in her chest pulled on Tuesday. Hopefully we can keep her healthy until then. Her first birthday is Sunday. What a year it has been. The grandparents are coming in the afternoon for cake. We're planning a much bigger bash in October to combine Sara's birthday with Amy's. Amy's was spent in the hospital last year so we really want to be surrounded by family and friends this year.
We'll thanks for checking in and keeping us in your prayers. All your support is a God send. Take care and be well. Until next time. TTFN

Monday, July 28, 2003 7:31 PM CDT

We had our first Occupational Therapy session today. It went well. She's so used to hanging out in her seat that she's not sure what to make of all the moving around. She got quite annoyed when she was disturbed from her stroller. The therapist showed us many differen't things to do with her and said that she like many other children who have spent most of their lives in the hospital aren't used to being handled so much. Which is definately true for Sara she seems to cry just about every time you move her. Most "quote un quote" normal babies are handled and passed around from person to person that they get used to being jostled. Where Sara has spent so much time in a hospital crib and being moved so gently that it's a whole new thing for her to be tossed about a bit. We think she will do very well. We plan on keeping up with the therapy everyday at home to help her make more progress. All in all it was a good day today. Goodnight and be well.

Sunday, July 27, 2003 7:59 PM CDT

Well I have to say, it was a good weekend. We did finally make a family trip to Lowes on Saturday morning. It was so nice to go somewhere, anywhere as a family. Sara had a small seizure in the paint isle, it stopped almost as quickly as it started. Thank God. I thought maybe she was trying to tell me she didn't like the color choice for the bathroom. Amy had a blast, how crazy is that, you take her to Lowes and she goes nuts, singing and hooting and hollering, having a great time. Trust me there was no losing her and her father in the store. You could hear them coming isles away. I guess we don't have to go to an amusement park after all (not that we were planning on it.) We got home in time for Sara to eat and then back out we went to my brothers for dinner. Another wonderful time for all. It was so nice to get together and be a family again. Sara had another small seizure but thankfully no Diastat was given. I checked her chart this morning and it's been 5 days since our last Diastat. For you non-seizure people Diastat is a medicine administered rectally to stop seizures. Sara usally gets Diastat for a seizure lasting over 2 minutes or if they are really hard on her. Sometimes they may not last two minutes but it's more of a constant seizure that's very hard on her and she gets Diastat then. So either over two minutes or hard on her. It's a HUGE HUGE step to have gone 5 days without it. There for a while we were thinking about buying stock in the little company that makes it. We pray this is another baby step, toward a healthy Sara. Tomorrow we start Occupational Therapy. We go at 11:00 and we're very excited. We can't wait to get her going and on the road to getting stronger. So, that's all for now. Take care and be well. Thanks so much for signing in, it means so much to Jeff and I to get your support. Hugs to all.

Thursday, July 24, 2003 1:40 PM CDT

Well the good news is that the VCUG was negative. No reflux from her bladder into her kidneys. Why does she keep getting infected? Don't know. The radiologist said that we did the testing that was necessary and everything was negative so it could just be an unfortunate thing that Sara has to deal with. Some children, especially girls can be prone to urinary tract infections. It's not very uncommon so I guess it could be worse. Hopefully once we get her feeling better she won't get any more. I'm waiting for the pediatrician to get back to me tomorrow morning to let me know for sure that we can stop the antibiotic. We saw The King this morning also while we were in Hackensack. He made us feel better about the concerns we've been having for Sara. I of course want to know when she's going to get happy and smile. He said when she feels better. Makes sense I guess. She's still battling unknown infections and fevers so who would be happy. He thinks the best thing for her would be therapy and to stay out of the hospital. Can't agree with him more on that. Once we can get her stronger, then she'll feel better and make better progress. The other great news is that therapy starts next week. She'll go two days a week for now. Next week, Monday and Wednesday for OT and then the second week in August she'll also start PT. Apparently that therapist is away on vacation. Feeding therapy will begin in September. We're just thrilled we can get her going next week on something. Help her get stronger. Once we know what to do with her we can continue to work with her at home when she's not scheduled at Mountainside. Right now we're kind of clueless on what can help her. So anyway, that's the update for now. Her seizures have been better. She had two very small ones yesterday, under two minutes and no Diastat :o) Baby steps, I guess. Thanks for checking in and be well.

Monday, July 21, 2003 5:53 PM CDT

Not too much good news to report. She still seems to be struggling with the urinary tract infection. She spiked a fever quite a few times over the weekend and her seizure activity increased. We called Dr. Katz (The King) and asked how can she still spike a fever when she's on an antibiotic. He thinks that the antibiotic is either not sensitive to the bacteria which we doubt or she keeps getting infected, which is more likely it. We have an appointment with Dr. Evans (Ped) tomorrow morning at 8:45. Dr. Katz also feels that it's not really necessary to have to see a Pediatric Urologist but it will depend on how comfortable Dr. Evans is with treating her. I'm hoping he's fine with it because the last thing Dr. Katz and myself want to see us have to do is cart her to yet another Doctor. We'll find out tomorrow. Keep your fingers crossed. She goes back to Hackensack on Thursday for the renal ultrasound and the VCUG. Hopefully these tests will NOT point to an anatomy problem and hopefully it can be treated with medication. Yes, another medication to add to the medcine chart. She's obviously not felt well all day. She's very pale and has slept the entire day. No significant fever though. So frustrating. She was doing so well. She was having more awake time and was alert and now we feel like we're back to square one again. We feel like she's in this vicious circle. We did find out that she does not tolerate the heat at all and it seems to be a trigger for more seizures. We had the a/c off on a couple of the nicer days and it did not take much for her to over heat. So needless to say it's like the Anartic in our house. Amy is sleeping in Winter PJ's and Jeff and I bundle up in sweats and go outside to warm up :o). Sara on the other hand is very comfy cozy in her T-shirt and diaper. Oh well, that's it for the day, I hope all of you had a better one. Thanks for checking in on us. Take care and be well.

Saturday, July 19, 2003 3:35 PM CDT

Well, were hanging in there. She had a CAT Scan and follow up visit with Dr. Fried (Pediatric Neurosurgeon) on Thursday. Despite the fact that we got there right on time for the scan we had to wait 40 minutes and just about missed Dr. Fried. The wonderful hospital billing office had everything confused once again. They called the wrong insurance for the pre-cert and despite the fact that I had the correct pre-cert with me they had to call and verify. So we had to wait, and wait. Sorry had to get that out because I can't stand the billing department. They never get anything right, never. Anyway her CAT Scan looks great and we actually caught Dr. Fried by shear luck. He thinks her incisions looks wonderful and the shunt is working just fine. We don't need to go back to him for another month, and of course we'll need another CAT Scan at that time. You get a shunt you buy the CAT Scan clause as we call it.
She can have the Broviac line in her chest pulled next week which is a relief to us. We were very happy with the day until we got a call from our Pediatrican's office when we got home. Sara is also being treated for a urinary tract infection and they changed her medicine last Monday, due to upset stomach. Her urine in the office was negative but the culture they sent out came back positive. What does that mean? Sara has to go see a Pediatric Urologist. Yet another specialist. She needs to have a renal ultrasound and a VCUG. She's had two urinarty tract infections already and they want to make sure she does not have any issues with her bladder etc., at least that's what I think. The covering Pediatrican for Dr. Evans is the one who called me on Thursday and I had a very hard time understanding what she was trying to tell me. We have an appointment with Dr. Evans (Sara's main Doc) on Tuesday and they will test her urine again, I'll let you know how that goes. Jeff and I can't help but feel that this poor child just can't cut a break. She comes so far only to get hit back again. She's having a good day today. Small seizure not too long ago and it went away without Diastat. Which is a good thing. I finally figured out how to load the pictures (I think) so I hope you enjoy them. Take care all and be well.

Wednesday, July 16, 2003 8:10 PM CDT

We've had good day today despite getting Diastat for a 4 minute seizure this morning. We have noticed that she has been much more alert and responsive the past two days. She is coming off one of her seizure meds and we are hoping to gain her more "awake" time during the day. We are working with Childrens Specialized Hospital in Mountainside to get her PT, OT and feeding therapy. She has a gastrostomy (feeding) tube for those of you that don't know. We can not get her in until September for the feeding evaluation and are waiting to be scheduled for the others. Hopefully we can get her going very soon. We are finding that everything is hurry up and wait, which can be very un-nerving. She is definately getting stronger, has more head control and can sit for about 1-2 seconds before toppling over. Another big step for Sara. Her incisions are healing nicely and she looks wonderful. She's swinging in her swing at the moment, quite content. Amy is munching on chips and watching country music videos. Little does she know she is headed off to bed when I finish this. So, on that note, goodnight all, take care and be well.

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