[ Post a Response | 22q Deletion Interest Board ]
Posted by Heather on 4/3/2008, 4:05 pm, in reply to "22q deletion"
129.176.151.6
Hi Renee,
I am also the mother of a little girl who has Velocardiofacial Syndrome. Our daughter was diagnosed shortly after birth also. When she was 3 days old, she was airlifted to a hospital about 2 hours away from us, to have emergent open heart surgery. She was 8 days old when she had her surgery, and has not had to have any heart surgeries since then, thankfully. However, she has had several other problems. She has weak eye muscles, and has 3 surgeries to try to correct that. She does currently wear glasses. She had a surgery when she was 6 to help correct her speech, she was very hypernasal when she spoke, and did go through 3 years of speech also. When she was 4 she was diagnosed with Grave's Disease (hyperactive thyroid), and about a year ago she was diagnosed with JRA (Juvenile Rheumatoid Arthritis). Since the arthritis is something new to us, we are still learning about the connection, if any to the 22q deletion.
This year our daughter is in 3rd grade, and we are struggling with the idea of holding her back a year in school. Math and reading have proven to be very challenging for her this year. We feel that she has gone through much already, that we don't want to add school as yet another challenge. Looking at her you would never know that she has all of these problems, except for her "badge of courage" as we call it (her heart surgery scar).
I don't know if any of this will help you out of not, but feel free to email me if you want to know more.
Heather
eggen5@yahoo.com
--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.
:
Message Thread:
« Back to thread