S.O.D. (Septo-Optic Dysplasia)
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January 9th, 2011, 06:32 AM
Mega Super Mommy
Join Date: Aug 2009
Hi, I have posted here before, but not often. My daughter was diagnosed with LCA (Leber's Congenital Amourosis) in April 2010...she was just shy of 3. She has very functional vision but we are unsure of what she can or can't see. She is inconsistant...like she has good days then not so good days. So far, there is nothing that can be done for her...it is a retinal degenerative disease and all has to do with her rods and cones not working as they should. She is going to preschool at the Florida School for the Deaf and the Blind and we have seen so much progress since she has been attending. But I wanted to add that she didn't start to track things til she was 12 months +...developmentally, she is right one physically and cognitively.
She is being introduced to braille, uses a cain for unfamiliar territory, has a mobility coach, an occupational therapist, and lots of one-on-one...when she was first diagnosed with congential nystagmus at 2 months, they told us there was nothing we could do and didn't give us any resources. She went 3 years without any assistance, only what we did for her. Which, it turns out, her teachers were very amazed she hadn't had intervention before. Makes me a lil mommy proud! Anyway, your babies qualify for all sorta of aides and people can come to your house to help you and your baby! I didn't know this. And there are clinical trials going on all the time to help find cures/treatments. Look into Foundation Fighting Blindness...they have lots of vision walks coming up and they are raising money for our kids!
Anyway, sorry for the rant! LOL ((HUGS))
Special thank you to Graysmama for my awesome siggy!
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