Guest guest Posted March 8, 2004 Report Share Posted March 8, 2004 , I have read your posts concerning RSS. I have found this listserve to be full of very open, honest and caring parents (and grandparents, aunts, uncles, etc.). In terms of measurements, I don't know them, other to say my son Jake's head was always the correct size for age, but all the other measurements were always smaller. My perinatologist was able to rule out skeletal dysplasia because even though his limbs were small they were proportionate to the rest of his body (except his head). I could tell it really bothered my doctor that he didn't have a diagnosis. He used to refer to Jake as the " mystery baby " . One day he pointed to Silver Syndrome in a text book and said it could be what he has, but he just said he couldn't be certain by ultrasound exams. I never thought much of it at the time, but later once the actual diagnosis came when he was two days old, I remembered. Anyway, as far as syndromes go, I feel very lucky that Jake has RSS. There are far worse things in this world. The first couple of years are definitely the toughest. But then it gets easier, so much easier. My son is now four and life is good. He is smart, very outgoing, extremely funny, and a joy. He is in special education preschool to help with his fine motor skills and gross motor skills, but he will absolutely be in a regular class once kindergarten begins. (Once a child turns 3 they need to come out of Early Intervention and the school system then becomes responsible for providing therapy. This is why he is in sp. ed. preschool). Jake is an only child, but it doesn't slow him down. He has a bunch of friends whom are wonderful to him. Yes, they are faster and able to do things he can't do yet, but they don't seem to care. You are already getting a head start by being on this listserve and learning. Please feel free to ask questions, vent, etc. That is what this list is all about. We have all been there. Alison Quote Link to comment Share on other sites More sharing options...
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