Genetics

We had a genetics follow-up today. I used to dread these visits because it seemed like the Dr. just picked apart Ayden Jane... Of course, that was when he was trying to diagnose her and was looking for clues. Since she was diagnosed and started to really gain ground, it has sort of been more like going to show off.

Ayden Jane was great. She was a bit wary of him, but showed her stuff enough to get a stamp of congratulations. Mostly we keep going because Dr. Pai wants to keep seeing her and he is truly interested in watching how awesome she is. He was, by his own admission, a bit behind the learning curve for PWS. He was surprised to learn from us that growth hormone is started so young. He would have waited until she was older to even refer her to endo... To his credit, however, he listens and uses us as 'his link to the PWS community and research.' He is happy to read and give his opinion/explanation on anything I have questions with. He is willing to run any labs we are interested in.

The only surprise of the day is that Ayden Jane really has not gained any weight or grown in the last month. The lack of weight gain I am a good with, but I do wish she would grow a bit. It is hard to believe too because I swear she seems bigger!

I take my brain in circles over her gh dose. She is on .4 genotropin daily... still. When we checked her levels at the last endo visit she was in the high normal range, but is theoretically low dosed for weight. We see them again in 2 months and I am wondering if the lack of growth is an indication that it is time to head for .5. I can argue in my head for both raising and staying.... Only problem is I just don't know! I can really drive myself crazy over things I don't really have control over, enough information to determine or can possibly answer. I guess it is just part of the package with Ayden Jane. Stressing over decisions with no clear cut answers.

Well, I guess I will just focus on the fact that the 'food work' we have done is being successful even though I feel I have been slack. Pat myself on the back and get back to work tomorrow!