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Nassau, New York (NY) -
Trisomy 13 Mosaic
7-21-08
Hello Everyone
Well here is a up date on "Life in the D'Ambrosi World"
Tony has now been diagnosed with ADD ( he was diagnosed with ODD, and
anxiety), over all he is doing really good. He will be going into 3rd grade
in September. We are still working with his med.
Sarah ( R CDH repaired) well all is good here. She will be in 1st grade in
September. The best part is she will be a "Non Identified" student. I think
is great for her but I worry that she will fall between the cracks and just
be passed on, especially now with the "No Child Left Be Hind". Mom will
never stop worrying about her! She has asked 3 time for the training wheels
to be taken off and well she does great and then stops thinking about it and
rides and then she falls and asks for them to be put back on. She will get
the hang of it.
Donnalee ( Trisomy 13 Mosaic) still has issues with her heart ( it is 2
times the size it should be). Her palette need to be fixed again......She
has pitting in the soft palette and it is the size of a paper cut, but stuff
comes out of her nose like you turn on the water. We saw the doctor for that
and well he is looking in to options and what more can be done. Donnalee's
eye hmmm what to say I am totally confused about them and not sure where to
go and when to do. Her right eye is 20/20 and her left eye is 20/80. But 6
months ago she was totally blind in her left 20/100. Then we started doing
the drops again and the vision is better.
1. Donnalee's speech is the greatest and she gets upset when she has to
repeat her self.
2. Donnalee's vision is not the greatest either and she gets frustrated very
easy.
3. Donnalee has turned back to biting and hitting.
My options are.......
Keep her here at home and work harder with her and hope I can make things
better for her
OR
Find a school that might help her with both her eyes and her speech.
I personally would like to she her use sign along with speech.
As for Mom well she is just hanging in there trying to keep life organized
and systematic
Frederica
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3-19-05
Donnalee Ashlyn Rose D'Ambrosi Was Born January 5 2004, withT13
Mosaic. Donnalee weighed 10 lbs. 15 ozs. The first 8 months were the
worst. Donnalee was in and out of the hospital with CHF (Congested
heart failure), September 7, 04 Donnalee had open heart surgary for
VSD( ), November 23, PE tubes. In November Donnalee began to grow,
eat and progress through mile stones. Donnalee loves meeting her
brother Anthony 5, and sister Sarah 3, at the door when they come
home from school. Donnalee is crawling and starting to walk on her
own.
 
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