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Re: Digest Number 158

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Welcome Sophia,

You certainly are not alone. We went through the same thing when we found out

about our son, , when he was just about Sophia's age. We too did not

know where to turn. There is not a whole lot of info out there about MDS- we

basically read all we can about Trisomy 21 and try to put it in perspective

as it would relate to mosaic down syndrome. Thank goodness for this web site.

As far as your concerns about where Olivia should be at this point, it sounds

like she is doing just beautifully. learned to crawl and finger feed

at 14 months. He is almost 19 mons now and still does not walk on his own or

speak. As soon as we found out about the MDS we got him enrolled in an early

intervention program (which probably vary state to state) and he now has a

great physical therapist and speech therapist who work with him and me every

week. It is a slow process but I have seen him make great strides and I

can't tell you how proud I am of him when I watch his determination and his

perservance. He is an amazing little kid and he has brought so much into our

lives in such a short amount of time. While I too worry what the future

holds,I cherish everyday with him and each obstacle he successfully

overcomes. After getting over the initial shock of everything, I am now so

grateful to have been chosen to be his mom. He is our little miracle. We hope

for the best in the future but for now we just pray that he continues to be

healthy and happy.

Welcome and my very best to you and Sophia

Jane M (mommy to , 19 months)

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