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Fetal diagnosis-

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,

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

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