[ Post a Response | 22q Deletion Interest Board ]
Posted by Renee
on 3/19/2008, 3:12 pm
206.116.197.123
Hi,
I have a daughter that is 21 months old. She was diagnosed with 22q11 deletion when she was 6 days old. I did not have any of the prenatal testing done, this was a personal choice for me. We had tried to have this 2nd baby for about 4 years, so I knew that no matter what any tests would show, I would have had the baby. And let me add, I would not trade this little Miracle for anything. We see an infant developement consultant almost everymonth, we see a physitherapist about every 6 weeks. We are on a waiting list for speach therapy. She had open heart surgery when she was 3 months old, she has her blood tested up until now often, but she will now have her blood tested once a year. She start walking a couple of months ago. She is doing fairly well with walking, but she is quite clumsy. She has a vocabulary of up to about 45 words. She speaks quite a bit at home. She counts to 3, only when she wants to of course. Her daycare provider says that she hardly speaks at all when she is at daycare.. I just wondered if anyone out there could tell me what else might be in store for us. If someone else could share their story with me and my family.
Thanks Renee.
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