Our old CF Commercial that plays on MCTV. Still working on this years.

Thursday, August 21, 2008

Speech Therapy and the rest of the clinic visit

Ok, I finally have time to talk about the speech therapy class we had at the clinic on August 6th. Actually, it was more like food therapy class. The only thing they did about speech, was ask us how many words he knows. We said 5-10 and he knows the word "more" in sign language.

Baby(and he points to my belly:)
Uh oh

The rest of the visit was all about eating. They had a highchair for him to sit in, and then she brought in a tray full of different things for him to try to see if he would eat them. I guess they did this b/c he can't take the Pediasure and we can't keep him on formula forever. Plus, he can't keep eating baby food forever either, even though he only has 4 teeth still(those other ones just won't come in).

So they tried crackers, pudding, cereal bar, mashed mac and cheese, and I forget what else. He did well with all of them. We've tried things like this before too at home, and he does well at first, but then he starts gagging on it or just pushes it away and won't open up for it. They didn't do it long enough to see any of that, so it was pretty much a waste, but we keep trying them at home. Hopefully he'll come around soon, b/c he is starting to not want his formula and usual baby food anymore. I guess he realizes now that there is better stuff out there than just nasty baby food;) If only we could get him to eat more of the real food. I just hope that this switching over doesn't cause his weight to go down. He has been doing soooooooo well. His height to weight ratio was 75% at this visit!! The doctor was so impressed! I hope we can keep it up with all these changes.

We got the results back of the sweat test. It was inconclusive. He didn't sweat enough like they had thought, so now they want him to do another sweat test on our next visit. BTW, the doctor said that their clinic likes to have 2 confirmations for the diagnosis of CF, and since he was only diagnosed by the newborn state screening, they wanted us to do the sweat test and blood work there to confirm the diagnosis. Actually, he said they always retest the blood work in their clinic, b/c the state(the newborn screening, which is what diagnosed Lil' Chris) sometimes makes mistakes(I'll talk more about when he first got diagnosed when I pick up where I left off on "The Story". Check it out in the labels on the right side of the page if you want to get caught up on "The Story", just start reading from the bottom up;). He didn't want to get our hopes up, but I guess you can't help but wish that it could be true, that he might not have CF. Although, deep down I knew he had it. We've seen all the signs. So, a couple of days ago, we got the result back and it was positive for CF just like we all knew it would be. But that's ok, it is what we are all used to.

The test confirmed that he has 2 mutations of delta F508 which is the second stage(If you have 2 mutations, that means you have CF). I'm not sure how many stages there are, but all I know is that Stage 1 and Stage 2 are the worst, esp. if you have 2 mutations of them. If you have one mutation in Stage 1 or 2 and another mutation in a higher stage, it is not as bad. I have read that those who have 2 mutations in Stage 1 or 2 have CF more severely and have a harder time, and their life expectancy isn't as long(another reason why we are so protective of him now while we still can be). The average life expectancy is 37. But if you ask me, Lil' Chris is doing GREAT and is going to live to 100!!


PS. He was 24.2 lbs and 30 inches long. I forget the percentiles, but they were good:) Our next clinic visit and sweat test isn't until Nov 5th, unless his cough doesn't go away.


Leslie said...

Wow! That's incredible about how great Lil' Chris' weight is! Ashley is now a little over 3 and she only weighs about 28 pounds. Hopefully you guys will be able to get the eating stuff worked out and keep him gaining weight! Way to go Lil' Chris!!

That's interesting about the 2 onfirmations of the CF. I have heard that the newborn screening can be misdiagnosed though, so I'm sure that was a good idea. Ashley also has the 2 mutations of the delta F508. If I understand it correctly though, it is the most common so maybe they will have some good research on it and be able to continue finding new drugs that will help our little ones continue to live life longer!!

Hope you guys have a great weekend!

Anonymous said...

Hey M!!!!,

It's Linda S from NJ (Kat and Kar's mommy). Just wanted you to know that you guys will be in my daily prayers and I think this Blog is GREAT!!! He is adorable and truly a blessing for you guys as well as all of the others who will read,learn, and find comfort in these pages. Keep the faith and love ya!