Charlie did great during her appointment today. She didn't fall asleep or fuss at all during the tests. She only got mad when the doctor pulled the tape out of her hair that was holding the electrodes on (ouch!). Basically they were just seeing how well she can see. They have to read her brainwaves because she doesn't react to stimuli the way other babies do.
So she can't see very well. We already knew her vision was impaired, but it's worse than what we thought. The doctor kept saying her vision was "significantly reduced" which is a nicer way of saying "your kid can't see shit". He said it like 4 or 5 times and I'm like "ok dude, I get it." I started talking to him about what we can do to help her. With cortical vision impairment, you can't just put glasses on the kid, or do surgery to fix their eyes. It's a brain problem so we do for CVI what we do with all her other issues. Therapy, therapy, therapy.
Her right eye is much worse than her left. There were several tests they couldn't get her right eye to react at all. But she's not completely blind in it. They gave us some stuff to read about CVI and it actually helped a lot with understanding why she seems to avoid looking at objects and other quirky stuff she does. The reason she appears to be averting her eyes away from objects is because she sees better out of her peripheral vision so when she looks to the left of something, she's able to see it better than when she looks right at it.
At therapy we've always been focused on "getting her to midline" and now I realize we've been wasting our time. All those times we were trying to put something right in front of her, she'd turn her head, and we'd turn it back, we were just pissing her off because she actually can't see what's right in front of her! So now I feel kind of bad. But now I know to focus on helping her use her vision in whatever way is best for her. This means putting stuff to her left and to her right instead of right in front of her.
Also we need to figure out if she's seeing stationary or moving objects better. We need to figure out what colors she sees best. We've been told by every therapist that black on white was what she would see best, but just today we were told that for some kids with CVI, this is what they see the worst! Back to square one I guess. We know she likes red. We've been told to do lots of bright contrasting colors, but apparently, sometimes it's the softer colors that these kids can see better. So I'll stop worrying about buying her stuff with black, white, and red. I think I'll start by buying markers and posterboard and making a bunch of poster with one single color on each and seeing what she likes best.