Guest guest Posted July 16, 2004 Report Share Posted July 16, 2004 Jodi, was in the hospital for 7.5 months (31 weeks to be exact) and was in the hospital many times after that. He was in the hospital longer than I was pregnant! He has had a g-tube since he was 6 months old (he was still in the hospital when it was put in). He has had YEARS & YEARS of feeding therapy, but he still needs his g-tube. I can empatchize with the oxygen thing. I had home nursing care until was 2.5 years. He was on oxygen continuously until then & then needed it occasionally when he was ill after that. He had a very rocky course when he was a baby, and the posts I have read about remind me of him a little. We also had the UPD7 test when was 4 or 5 years old which came back normal, so we again were back to not having a diagnosis. I didn't get the official RSS diagnosis until last summer at 9.75 years old! has come a long way with all of his problems over the years. The main issues we struggle with now are still height & weight, he has kyphosis & scoliosis & was just fitted for a back brace, he still has the g-tube, and behavioral issues. I would love to talk with you at the convention! Kim C. > > > Kim and Leah, > > > was also delivered early due to severe IUGR. They took > him at > > > 34 weeks. He weighed a mere 2 lbs. 12 1/2 oz.! He was sooo > tiny. > > > Anyway, I just wanted to let you know you guys aren't alone! > They > > > thought had Trisomy 18! > > > > > > Jodi R. Quote Link to comment Share on other sites More sharing options...
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