[ Post a Response | 22q Deletion Interest Board ]
Posted by Tanya on 4/17/2008, 6:55 pm, in reply to "22q deletion"
142.167.52.19
Hi;
I have a 71/2 yr old daughter. She was only diagnosed with VCFS when she was 5 years old and only because they wanted to do surgery on her adnoids. It gave us answers to why she had heart surgery at 12 hours old. she had hypernasal speech, she spent 4 years + in speach and hearing she had a few years of physio. Start working with her on conceptual skills. Big and small, long and short. My daughter would get the concept of big and small but if you changed the wording she would not understand. but after repetion for months she would get it. if there is hint of that start working as soon as possible in fun ways. positive incentives and no error learning is the best way to teach. meaning..... before she can give the wrong answer give her the right one or they will always remember the wrong. She may have some of her mother in her because if I think of one name for a person then they are always that name. I think mine is because of old age hee hee. Victoria has had surgery on her eyes at the age of 2 and that was successful as both eyes turned out. She has gotten glasses (Feb) because one is starting to turn out again. She has a quirky sense of humour. Things she should not be getting she does. But for the life of her she does not get jokes they go completely over her head. She is the most precious child very loving. She had a second heart surgery at the age of 5. She will continue to have more heart surgeries until adulthood. I think we got the best of the facial part of the gene but the worst of the heart gene. Who knows. She is just starting to have a little problem with math. The more concepts they get into the more trouble we are having with her. She is learing touch math to help her along but this will only take her so far. My daughter has a full time teachers assistant working with her to help her in class. each child is different and can do amazing things. We were very lucky to have health care professionals that pushed Victoria and would not let her settle to only be what was expected she would/should be and she has beaten all the odds. good luck with your blessing and if you need more support or information please feel free to contact me. Tanya
--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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