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There's really nothing new. Jack saw Dr. Cogen Tuesday afternoon. Dr. Cogen says Jack's optic nerves are flat and pale. This is the same report we've been getting. There is currently no known way to regenerate the optic nerve.
The only new thing he added at this visit was that Jack has an issue with "overcrowding". Dr. Cogen explained that Jack can easily see one object or letter presented in isolation but if he is shown a row of letters or objects, they tend to superimpose upon one another and he cannot make out the individual letters or objects. It makes perfect sense. It's another one of those slap your forehead "I knew that" kind of things.
The report did not bother Jack a bit. He's known longer than any of us that he doesn't see well.
We're going to go back to his vision rehabilitation doctor to see what kind of things she recommends now that he's older. We previously discussed a CCTV for enlarging print but she felt that it was too early. I'm hoping that she help us figure out which kind to get. Jack is VERY interested in letters, spelling, and reading. We'll keep you posted.
2 comments:
Hi! What is a CCTV? A friend of mine has a baby with Apert and I am glad I discovered Jack`s blog to show her too. Stefan is 3 month old. This is his Facbookpage https://www.facebook.com/groups/183231445070963/368428546551251/#!/SupportStefan , unfortunately in romanian as he lives in Romania. His Apert specialist (neurologist) ist Dr. Schweitzer in Würzburg, Germany as there are no Apert specialists in ROmania.
Jack also has optic nerve atrophy. Not all children with Apert syndrome have optic nerve atrophy. The CCTV magnifies print and other activities so that Jack can see it better. We actually were very lucky to find a used one at a yard sale for $15. They cost around $2000 to $3000. Now we just have to find a monitor to go with it.
I will check yout your friend's facebook page.
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