[ Post a Response | 22q Deletion Interest Board ]
Posted by Tiffany
on 5/19/2008, 9:20 pm, in reply to "22q deletion"
71.80.124.3
Hi Renee,
I have a 6 month old named Ava that has DiGeorge Syndrome (22q deletion). 36 hours after birth she was diagnosed with a severe heart defect, and ten days later had to have open heart surgery. My husband and I had no idea. We were both devasted. With support from our families and friend we pulled through along with our "Angel". She is home and doing fine now. Looking at her she looks very normal. I am not sure what we have in store for us. But I know we love her more than anything and as you we would not trade her for anything. We had a local group come out to our house from birth to three and told us to date she was doing all the normal baby things. She is slightly behind because she was in the hospital for a month for surgery and recovery. I was very scared when we first brought her home and I still am at times. But I believe things happen for a reason. I am can not be much help, but I like that fact that I can chat with other that are in a similar situation. I am in CT, anyone is this state?
Thanks
Tiffany
--Previous Message--
: 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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