So I've calmed down from my last post - and I have to say that my little guy had a great weekend filled with all kinds of family and friends. He played and played and wore himself out playing. He had a lot of energy this weekend.
I just think that as a mom of a kid with PWS I overanalyze every little behavior waiting for the food part to start and I sometimes just freak out - most of the time I'm super positve really - but when you sit back and look at him right now - he's just fine foodwise!
We had an ortho appointment last week with Dr. Willits and found out Isaac wouldn't have to have adjustments every four to six months as first thought. Now he's recommending yearly adjustments (try to wait until the curve progresses 10 degrees, in 6 months Isaac's has progressed only 4 degrees with the device). He said that they have found that really there are only a finite amount of adjustments that work with the device because the muscles won't tolerate more. Its better to limit adjustments. I'm just glad they found this out for us before we were 5 or 6 adjustments in you know? Its weird having your kid be a test subject with this stuff really but we are so thankful for the amazing technology and keep hoping that it advances with us!!! Anyways it lessens our worry about the VEPTR procedures taking over! So that is great news!!!
2 comments:
That's great news...sometimes less is definitely better, at least when it comes to appointments. Hang in there!
Just read about your frustrations with the clinic! I don't blame you! We've never had a clinic here, but have been able to find endocrinologists to prescribe GH. But we've NEVER had docs who suggest supplements, or a nutritionist that gave decent advice. When O was little and I did more research I would take info to the doctors and get their "buy-in" for things other parents were doing. Anyway, hang in there!
Also wanted to let you know I got your comment about info on food security. There is no book, but I do highly recommend Gourash and Forster's Food Behavior and Beyond DVD. I'll also write up what we did/do...
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