Hi, April, my name is Mary and I have a son, Alex, who is 14 months that has recently been diagnosed with Weaver syndrome. I am so happy to see someone else on here with the same diagnosis. Wow! I have so many questions for you. Would you mind if I emailed you directly? Let me know.
Mary
april797979 <april797979@...> wrote:
april797979 <april797979@...> wrote:
Hi everyone, its been awhile since I've been on here. So long in
fact that I had to re join, due to a new computer and a poor
memory. :)
Devon has been doing fairly well. School is once again comming to an
end for the school year. Devon has one more year of pre-school
before kindergarden. He has developed so much since I was last on
here. The area he has grown the most in is his comunication. With
that progress, his behavior has gotten much better. He is still
emotionally up and down. He is clumsy as always. Lots of balance
issues. I took him in for his first emergency room visit for an
injury.(actually twice in the same week!!) He slammed his thumb in
the front door and pulled his nail right off. Two days later, he
head butted the freezer...gashing his forhead open. I really hope
this summer doesnt continue this way.
How are all the little ones doing? Has there been any new info on
weavers? How old is the oldest weaver syndrome person/kid in this
group? I would really like to ask some questions. I just cannot help
but wonder what his future holds. How high functioning are these
kids suppost to get?
I am trying to get a recent picture of Devon put on here. His
geneticist(spelling?)said that these kids do look alike. She
explained it kinda like down syndrome. All the kids have strong
simularities, yet carry on the family resemblence as well. I would
like to look at a few other kids to see if the simularities are
stong, and what they are(besides being large-or is that the
strongest simularity?),kinda how down syndrome kids have the
strongly simualar faces, (eyes, nose, forhead, mouth, etc). Just
another wonder of mine.
I hope to hear from all you soon, and hope this reaches you all in
good health and great spirits! Give all the little ones extra loves
today!
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