Monday, March 15, 2010

good news, less good news.

So a little while ago we got back the levels from his last blood test. His direct bilirubin is 5, which is awesome since in January it was 7.9. It's going down! I thought it was, but it's nice to see the numbers as proof. A little less than good news, his cholesterol level was 953. Normal is 100. It's not as high as some kids with AGS, but definitely higher than normal. No xanthomas still, so that's good. Hopefully it stays that way! I have noticed him itching though. :( Poor baby! It's not ruining his life yet or anything, but if his chest is uncovered, or his genitals or his legs, he just scratches away. I'm hoping it will soon get better rather than worse. Well of course I do, haha. Anyway, not only does he only have to go to Gainesville every three months, but now he only has to go to his pediatrician every month! We were going every two weeks. Finally, things are starting to slow down a bit. Now I just need to get physical therapy to rethink this weekly thing. :)

Blake LOVES solids now. It's so cute! He just gobbles them up. :) Which is cool, since someone told me that AGS kids a lot of times are on a liquid diet until they're ten years old! That's crazy! And he's trying so hard to crawl. He's been getting into the crawling position and rocking. So exciting! He's super mobile though, he's got his combat crawl down so well, and he's into absolutely everything, especially things that he should be, of course! Haha.

So in general things are just going really good. :) Besides the itching thing. It could be worse though. On top of that, things with Ray has been going great. :) I wish I didn't have to work so much, since I miss Blake so much. :( Hopefully that will get better soon too. We'll see. :)



Anonymous said...

I am so happy that Blake is doing so well. Have you asked what you can do to help alleviate his itching? can you use aveeno lotion or anything? I hope that isn't too bad for him. I am glad things have slowed down for you guys, too! It must be nice getting a bit of a break from all those doctor visits!Maybe try telling the Physical Therapist that you are working with Blake at home and wondering if it would be okay to go every two weeks, or even just once a month. It couldn't hurt to ask. =) we miss you guys so much! Lily did the 'army crawl' for such a long time before she started actually crawling. my nephew was the one to get her to crawl. we had him crawl around and she liked that he was 'on her level', so she started following him one day! We should get together soooon and she can give Blake some pointers. ;] He will do it when he is ready, though! And and it is all down hill from there! you should start putting things away now haha :) Glad things are going well with Ray. He seems like a nice guy! Kiss Blake for me! we love you guys !

sheila riannon said...

Yes, I asked what I can do, and I'm waiting for a response from his doc. :) It's a different type of itching, like not from dry skin, just from the bilirubin being so high. I think I might ask that. I really think that if Blake saw her crawl he may start. He didn't really care about standing until he saw Stella doing it, and from that day on he's been all about some standing haha. I'm glad they are too! He's a very nice guy. :) We miss you too! SO much! I'll give him a kiss for you if you do the same for LB for me. :D Love you too!!! <3

SarrahBaby said...

I'm so glad that he is doing better. I cannot get over how adorable he is! You have a beautiful child!

sheila riannon said...

Thanks Sarah! :D Amber is a little cutie too! :D