Well, guess I should introduce myself to the group. My name is Stephanie and we live in NC. I am the mother to 13 children, all internationally adopted. Been a crazy ride. The last child (yes, it is!), joined our family July 2nd. It was an emergency type situation and a long story. So, he is said to have 9p22 deletion syndrome but will also be verifying w/ Duke Genetics in the states. He is 4yo as of last week. When he arrived stateside, he was 15 lbs. He is now around 23 lbs. VERY thin still though. Is this part of 9p? So many questions I have for you all. His sleep gets interrupted. What is hard for us now is sorting out what is just orphanage stuff and what is 9p stuff. He eats well. Gets constipated but think we have that managed pretty well now. He wants to walk. Is totally non-verbal. Do any of your children speak? He has kyphosis and goes to first ortho appt. Sept. 26th. Do any of your children use walkers? Just trying to figure a few things out here that may help him. Any advice you can give would be wonderful. Oh, he will slap himself in the head. Almost autistic type qualities. Is that a part of this possibly as well? Sorry, ton of questions as we have many special needs children but none with this syndrome so Im starting from scratch essentially in learning. Want to help him reach his fullest potential possible. Thanks in advance. Cant wait to share his picture w/ you all. Have to wait till adoption is all final though.
Posted on: Fri, 19 Sep 2014 03:25:33 +0000
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