[ Post a Response | 22q Deletion Interest Board ]
Posted by Bridget
on 5/5/2008, 1:41 am, in reply to "22q deletion"
99.253.254.53
You are right these children are not tradable. I think it is because they are so soulfull. You are fortunate that your daughter was diagnosed so early. Because of this you may not encounter a lot of the problems than some of our children have. My son was not diagnosed until he was 25 years old by then some of the treatments that may of helped him he can no longer get because he is an adult. I will not tell you my sons story because I wouldn't want you to project into the future and worry for things that may not happen. Enjoy your daughter, do all the medical and educational therapies that can be done at her young age. Love her, never say she can't do something, and as hard as it may be do not overprotect her. The younger the diagnoses is made the better chanches for a complete life. I wish your daughter and your family a happy life and that you can live in the joy of today
--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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