It was pointed out to me that I have no place for random contacts, so here one is.
http://mcdj.wordpress.com/2008/11/15/random-comments-heres-a-place-for-them/
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Emilie’s Blog · a blog about Angelman Syndrome, family, inclusion, disability, education
I know you must be very busy with your new baby and adjusting to the added member to your family. So please only respond when you feel you have time.
I had some questions about Maddie. I am so impressed with her. I have been able to watch some video clips of her doing school work. How old is? What kind of AS does she have? How long have you known? How many words does she say? Does she sign? What kind of things did you do with OT. My OT therapist would love some suggestions. Does Maddie have sensory sensitivity? Little Carmyn is very sensitive to touch on her head, hands, face and feet. Last, does Maddie have seizures? Okay, I know I have loaded you with questions. Sorry. Please don’t feel in a hurry, just when you have a break.
I hope you are enjoying your new addition. Can’t wait for pictures.
Paula
I was looking for info on therapeutic brushing for Angelman kids. My son Gabriel is 3 yrs old and we are investigating as many avenues as possible.Thanks, I’d love a response
Bob,
I made a post in response to your question.
http://mcdj.wordpress.com/2009/05/30/therapeutic-brushing/
Emilie,
Thank you for your blog site! I just finished reading through all the archives. Our 19 month old daughter was diagnosed with AS three months ago and it has been a whirlwind of finding out information and support since then. Like Maddie, our daughter has a UBE3A mutation (a single nucleoid change). I really would love to talk with you further. If you have a chance, please email me directly. Thanks.