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kc0509 Message
22 Feb 2010, 02:07 AM

Hi, My son will be 5 in April (I can hardly believe it!) His chromosome disorder is unique as far as we know: He has partial trisomy 11q and the extra piece of 11 is attached to the end of 5p; there is also a deletion on 5p in the same location that causes Cri du Chat syndrome. We've been through a lot medically over the years including heart surgeries, adenoidectomy and tonsillectomy, salivary duct ligation, hernias, vision impaired, hearing impaired, reactive airway disease, and seizure disorder. If anyone is interested, I don't mind giving more details about his medical stuff... but as you probably know, a kid can't be a list of medical problems, now can he? So for now I'll just give a litte update on his progress. My little man is probably the most expressive non-verbal person on the planet - it's pretty easy to read his mind from his expressions, gestures, and noises. He is a happy, happy, social child who loves everyone. He loves to hug and snuggle and he is even getting the hang of being gentle with his baby brother. He started walking at age 4 but still prefers to crawl in the house. He eats pureed foods and drinks thickened liquids although he can munch a few Cheerios if he's in the mood. He is crazy about books and brings his favorites over and tosses them at you to read. He loves music, singing, and Elmo and bops up and down when he is excited. And finally, he is very cute, if I do say so myself -- even when he is not dressed as a pirate. I'll check in about once a week until there is some activity here. Feel free to share, ask questions, whatever you like. - Dawn
lauriemom5 Message
12 Jun 2011, 08:16 PM

my daughter is the same way she doesnt speak but she is very expressive and knows what she wants and what she doesnt want she didnt walk till she was 6 she also eats pureed food she doesnt really chew she very orally defensive
kc0509 Message
23 Jul 2011, 01:21 PM

Wow! I almost had forgotten about this forum. Hi! The CDO forum on Yahoo is much more active (Chromosome Disorder Outreach) if you haven't checked it out already, it is great. We are in Massachusetts, where are you?
lauriemom5 Message
24 Jul 2011, 05:38 PM

we live in wisconsin