Guest guest Posted August 21, 2004 Report Share Posted August 21, 2004 CindyC, it must feel like such a huge, heavy responsibility to have all these previously unknown problems surface all at once, on top of all you've been dealing with for *so* long with Dylan's health concerns. But now they're known and his doctors will also have diagnoses of specific problems to work with--and the NIH doctors to consult. I hope and pray they'll do that. when I was diagnosed back in '80 I asked the genetic doctor what the prognosis was. he commented if my condition kept on like it was doing, I'd be in a wheelchair within 10 yrs.-- not something to look forward to with three grade school age children at the time. what the 'prognosis' [guess] actually did for me was to scare me into not overdoing it so much. Many prayers being sent your and Dylan's way. Take a little down time, and please get some rest...you'll need your energy for the upcoming appointments. How's Dylan doing after all the tests? Love and hugs~ Cindyh Wisc ~~ From: cindy clark Yes Bernie I appreciate knowing my enemy. Knowledge is power. Dylan's future could have been so much worse had these things not been found. And some of these things can be fixed, or slowed down. Quote Link to comment Share on other sites More sharing options...
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