C had a fun and semi-interesting, though confusing, doctor's appointment this morning. She saw an Opthamologist who took one look at her records and said, as she blanched, "I think your daughter needs to see the Pediatric Opthamologist. I'll put that referral in today!"
Great! :( There goes another 2 or 3 months of waiting to see another eye doctor. But, such is life, right!?!
In the mean time, the doctor did give C a quick exam and found that, though her eyes did deteriorate, they did not have significant issues (at least prescription wise). C went from a +2.50 and a +2.75 (with each eye having a .50 astigmatism) to a +4.00. She said that C's current glasses would be fine until she can get a more accurate assessment from the Pediatric Specialist.
I also explained that C is complaining about it being "dark" a lot. The doctor said that this was a direct result of the Retinitis Pigmentosa and that the specialist would need to check the degree of deterioration at his appointment. So, though the prescription didn't change dramatically, the RP could have.
For example, on Wednesday morning at 7:30-ish, I was signing to C in the livingroom. The curtains were all open, but the lights were off. It was overcast, so it wasn't as bright in the room as it would normally have been, but it wasn't dark enough to warrant the use of lights. But as I was signing to C, she complained about not being able to see me, so I had to turn on the lights in order for her to be able to effectively understand my signing. Talk about hitting home! If I had any doubts before that C was loosing her eye-sight this totally threw that out the window.
What's fun, though, is that C came home from school yesterday with "fun homework". It wasn't a requirement, but her teacher sent home a little project with his students. He explained that there was a student in the class who had to learn braille and that he thought it would be "fun" for everyone to get involved. I burst into tears as soon as I read that, both from gratitude that he would involve his class like that and at the realization that C would soon need to utilize Braille to read.
When the VI specialist (in California) told me C was learning "Braille" she explained that she was only going to start teaching how to find the beginning and ending of lines and that she wouldn't be learning actual Braille for quite some time (though I could have totally misunderstood what she was explaining). Here they have chosen to take a more direct route and actually teach Braille itself. I was surprised when I read C homework because when the VI teacher and I spoke I understood that she would teach the same things C had been learning previously rather than learning actual braille... But, hey, at the rate things seem to be going with C this might be a better route!
And, yes, it seems C might actually become legally blind by her late teens/early twenties (according to several people who work closely with people who have Usher Syndrome). I had, for some reason, had it in my head that C would have her sight until she was 40 or 50 years old. It's still a possibility, but the way things look to be progressing that's not too likely.
We're Back!!! :)
7 years ago