Clinic Visit 6/4/08

Our visit went great. Although we were there for 3 1/2 hours, we learned a lot.

I almost forgot to ask about the enzymes(Chris had to remind me:) They said that the enzymes work BEST the first 20 minutes, but they will work up to 1 hour.

The social worker said that she is going to send out a letter to all the cf families in our area to see if they would like to get together with me and Daniel's mom to chat and help start a Great Strides Walk here in our town.

Lil' Chris is 21 3/4 lbs, and over 29 3/4 inches long. He has to be 22 lbs for his big boy car seat, so he will probably be ready for it by next week...YEA!!

He is in the 39th percentile for his height, and his height to weight ratio was 59%!! The doctor was very impressed with that number. He was aiming to be at 50%, so to be at almost 60% was great he said.

The first person we saw was a genetic doctor whom we have never met before. She was very nice and we did a family tree of past or present health conditions that might run in the family. She is going to find out what cf genes that Chris and I tested carriers for. When I first got the results back a long time ago, they just said that I was a carrier of the most common type(which is what Lil' Chris has...2 Delta F508). I was telling her about how when he was a week old, he only tested positive for 1 cf gene(only a carrier of cf), but then they called us back a few days later saying that the lab had made a mistake and that he was positive for 2 cf genes(which means he has cf). So to my relief, she order another genetic test and a sweat test this time. He never did the sweat test before, so this ought to be interesting. The lab couldn't take us today, so we have to reschedule. The genetic test will confirm that he has the 2 Delta F508 genes or maybe that he has different ones. Hopefully he only has one DF508, b/c 2 .......well, I'll explain all that later, it's a long story.

The physical therapist said to do his vest on frequency 12 for 10 minutes, then frequency 14 for the next 10 minutes. She told us to picture our lungs like an upside down tree with lots of branches that break into even smaller branches. The slower speed of the vest will clear the big part of the lungs, the truck of the tree. The faster speed will clear the small parts of the lungs, the small branches. In order to breathe easier, it is best to have all airways clear, so this hits every part. Before, we were just doing one frequency (14) for the whole 20 minutes. So, I'm glad she told us this. She also thinks that his speech might be delayed or something, but I don't know about that! He's only one! She recommended that we let him play around other kids his age so he can grow more socially. We'll try it, but he better not get sick!LOL:) He is going to see a specialist too I think next time we go for a visit.

The dietitian and cf doctor wants us to start him on PediaSure now. They gave us some samples of Chocolate and Banana Cream. We'll try them soon and I'll let you know how it goes. This will replace his 27 calories bottles, b/c these are 30 calories. The more calories the better! She also said that she would like to see him on only solid food by 18 months. I told her we'll try:)

The cf doctor said that overall, he is very pleased with all his results from his first year. He said that we did a great job with everything, but I told him that it is b/c of HIM that Lil' Chris is doing so well. But he disagreed. He said that his part is the easy part, we actually have to go home and do it all. Well, I guess it is a little of both=)

Well, I better go clean house. We got visitors coming(My in-laws...aka Oma and Opa) tonight to stay for the weekend for Lil' Chris' first birthday on Friday. YEA!! I can't believe my baby is going to be one already:(

Because we will have visitors, I'll leave the posting up to D for a couple of days:) I'll try to get his first birthday picture up on Friday though. It is soooo cute!!
M
PS. YEA!! 2,000 hits!! Thanks for taking a pic and posting it D! I've been busy cleaning and shopping for Lil' Chris' birthday and haven't been able to check in too often lately. Boy do I have a lot to post about too! I just haven't had the time this week! Maybe next week. Thanks D=)