Yesterday we got an unexpected piece of good news regarding A's eyesight! She has coloboma, which is basically a gap in a part of the eyeball. For A, her coloboma is on the optic nerves of both eyes. What this means is that she likely has fields of vision missing. We don't know for sure WHAT she sees at this point, as she is still too young to tell us. But the assumption, ever since she was diagnosed with the colobomas at about 2 months old in the NICU, is that she definitely has vision impairment in both eyes. We were told that her left eye is worse; that it is legally blind, likely only seeing light and large shapes. So, although her actual EYESIGHT is ok (she is not far-sighted or near-sighted) we keep protective glasses on her at all time, to protect what we have. After all, if something happens to her right eye, all she'd be practically blind. I'm protecting what she has.
Yesterday we went to her opthamologist for her biannual check up. We were first brought back by our doctor's tech, who did an eye chart test (using shapes) with both of A's eyes uncovered. She was easily able to identify all of the shapes going halfway down the chart, and the tech pronounced her vision as 20/30. Very good. We talked about how A's left eye is legally blind, and she told me that although she doesn't see much out of it, whatever she DOES see (light and shapes) likely helps with depth perception. Then she put the dilating drops in A's eyes, and we were sent out to the waiting room for 30 minutes.
When we were called back in to the office, we were seen by the opthamologist herself. She started to examine A's eyes, and she told us that A is getting a bit of astigmatism in both eyes. She said it was very slight, and that if A were a kid just walking in off the street she'd tell us to come back in a year or so. But since A is already wearing protective glasses (and actually needs a new pair because hers are scratched) she wants to put the prescription in the lenses to help her. I felt good about that.
She then started to really peer into A's dilated eyes. I asked how the colobomas looked. Below is our conversation:
Doctor: Well, they look the same. It's funny, though...anatomically her left eye looks healthier than her right eye, but it's actually her worse eye.
Me: How do you KNOW it's worse?
Doctor: Because of what she's telling us.
Me: (feeling confused) Exactly what is she telling you?
Doctor: She can't see anything when we cover up her right eye.
Me: Well, when they test her, both of her eyes are uncovered. They haven't tested her left eye alone in years [actually before she was verbal]. Could we try it again?
Doctor: Sure,I guess so.
The doctor then covered up A's right eye, and switched on the eye chart screen across the room. On the chart was a big letter "D".
"D," say A.
Excuse me? Did my daughter, who is supposedly legally blind in that eye, just identify a LETTER?
The doctor changed the screen to the letter "L".
"L," says A.
I started crying. The doctor was visibly shaken, and was upset with her tech for not testing each eye individually. But this changes everything! I'm not sure WHAT her vision is, but I know it's better than we'd thought!
The doctor now wants to see A at the end of January. She wants us to get the glasses for astigmatism, and then do an undilated vision test. Hopefully after that we'll know more what A is seeing. Patching might be involved at that point (patching her right eye 1-2 hours a day) in order to strengthen the left eye.
Whatever happens, I am so happy. I never, ever suspected we'd get vision news like this. I know that regardless of the news, she will still be severely vision impaired--with gaps on her optic nerves that's to be expected. But it's better than I thought. And that's a miracle.
It's never too late to sit at the kids' table
4 hours ago