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Thursday, June 12, 2014

3 / 52

"The 52 Project - A portrait of my daughter, once a week, every week, for the remainder of 2014"
  
We had a great report at Isla's eye doctor here in Charlotte at CEENT and in Durham at Duke Medical two weeks ago. They didn't really have any "new" news to tell us but we did learn that Isla Rose was now the 19th gene for Leibers Congenital Aumarosis and that makes her the FIRST in the panel of genes that make up the blinding eye disease. We were also told from both of her eye doctors that she has made significant improvement and that they do believe she DOES have some vision. My heart was exuding with joy to hear that from her doctors because over the months, we have felt that in our hearts Isla can see some, we just don't know how much and that we probably won't know until she will be able to tell us or until she's old enough to have an official eye exam. I've asked her doctor about putting her through another ERG {Electro Retinal Gram} and they said it was pointless because her vision will show up with the same exact results they did when she was three months old -- which results showed her eyes "flat lined" and results were "inconclusive".  Part of me wants her to have the ERG again just to prove the system wrong or because I feel there might have been an error in her testing and the other part of me doesn't want to put her through all that again. The truth is, we know she is seeing something. And THAT news alone is God sent.
 
Isla Rose has a new pair of Miraflex glasses, which I am sure you all have seen if you follow my instagram or Facebook, and she seems to be accepting them and wearing them pretty well. It's been really exciting watching her reaction to wearing them because she stopped wearing her other glasses at 5 months old.  The doctors tell us that the new glasses are NOT for her vision but rather a way to help with her nystagmus and to help correct her left eye that seems to turn in when trying to focus.  Either way, she seems to like them and she looks so darn cute in them.
 

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