We had a vision therapist who came out to the house about once a month. We did not click. On her first visit, when Charlie was four months old, she brought a braille book. She also held up a piece of wax paper and asked me to look through it so I could imagine what Charlie's world was like. Personally, I think I'm lucky I didn't throw up on her. Talk about traumatic.
So, we "fired" the vision lady.
We went to this very fancy nuero-opthamologist--waited months to see her. She spun black and white drums and other oddities in Charlie's face, pronounced that he was "trying" to see, and told us that she'd like an MRI. It was reminiscent of Willy Wonka and the Chocolate Factory. That, coupled with the fact that I had grown tired of having pictures taken of Charlie's brain, led me to pick a new doctor.
So we settled on the doctor we see now. He's on the faculty at Tulane Medical School, he's been the head of the opthamology department, and he's conservative in his approach to surgery. These are all things I like in a doctor. We first saw him when Charlie was six months old and I gave a full description of his medical history, but I purposely didn't bring any films (for the un-initiated, "films" means pictures of your kid's brain). I wasn't trying to subvert the process--I just couldn't take one more doctor gee whizzing over Charlie's massive brain damage. It's like they can't help themselves; they take one look at those films and suddenly they can't see anything else, so I removed them from the equation.
At six months, the doctor believed he could see and focus, but only on one side. Honestly, I was relieved. That sounded a whole lot better than blind and even made sense in terms of what I was seeing at home.
So here we are two years later. We paid another visit to the doctor and this time he was gee whizzing over how great Charlie looks. His vision field loss is no longer detectable. He does not use both eyes together, but he appears to be using both eyes equally so that means no glasses and no patching. He was thrilled with Charlie's love of music and told me, "he's going to be just fine." He did tell me that Charlie would never fly a jet plane. I think I can live with that.
For me, this vision thing has involved a lot of going with my gut. I have stimulated Charlie's vision at home using lights and black and white images. I was open to braille if that was the best option, but I never ruled out the possibility that Charlie would see. Finding the right team was key. "Doctor shopping" is apparently some tawdry thing that people use to get prescriptions, but in this case it felt exactly like shopping. I had to find someone who had the right mix of experience and optimism. Otherwise, I would have given up completely.
Today, after the appointment, the window on my car got stuck halfway down and I had to drive home for an hour in the rain like that. You know what? I still felt pretty good.
Please ignore my blatant disregard for fashion--the stripe explosion is hurting my eyes but he looks so cute I couldn't resist post these pictures.