Monday, January 20, 2020

I Spy ...

Two years ago at NIH we had Teddy's eyesight evaluated during our intensive studies at the National Institutes of Health. We were perplexed as to how they'd evaluate his eyesight, given that he's non-verbal and not inclined to follow instructions, whether that's because he doesn't understand them or doesn't care to do others' bidding. They used a few tests that involved where he directed his attention, but much of the testing they did under sedation.

To be honest, testing Teddy's vision wasn't high on our list of priorities. But during AJ's last checkup, I asked a few questions about whether it was worth having Teddy evaluated. The thought of coercing Teddy to wear glasses makes me cringe, but there's so much more than sight that they evaluate. Our eye doctor, Dr. Ames, made me feel comfortable enough that he'd be able to get valuable information from evaluating Teddy, even if Teddy didn't want to cooperate for the tests. I set the appointment for nearly two months in the future, enough time that I didn't need to worry about it. (And I justified it by saying that it would be two years from his last evaluation.)

Well, those two months passed, and the four of us went to the eye doctor with Teddy last week. We felt it was best to have both Dave and I there to help coerce him to cooperate and get the best results. Pretty quickly, the first person evaluating him for the initial tests determined that it was best to bypass all those optional tests and head straight back to a room ... after only about 2 minutes of attempting the first test. The second we walked into the exam room, Teddy melted into the floor and began whimpering. That wasn't surprising, given that he's skittish about medical things ever since NIH. 

When we tried to sit in the exam chair, it required me to physically hold him on my lap against his will. So I let him go and said we could get him back in the chair when needed. He settled once he got in the furthest chair away and then proceeded to rotate chairs, including his wheelchair. We said we could get him back in the exam chair, and Dr. Ames reassured us that he's done exams under chairs. He'd do the exam wherever Teddy was comfortable, and he just continued to allow Teddy to move from seat to seat and continue the exam.

To test his sight, since he can't tell us whether A or B is better, much less sit still for A or B, they use this contraption they hold that has flashing lights and music to get his attention. When he looks into the device, they measure his eyesight to gauge prescription. Then the doctor confirms that prescription by holding different lenses to Teddy's eyes and peer into his eyeballs. 

Teddy cooperated really well for the bright lights to look into the back of his eyeball at his optic nerve. So we got some gauge on his overall eye health and an actual prescription to boot. He's apparently 3.0 for farsightedness and 3.0 for astigmatism, so that balances out to a 1.5 for a prescription. The doctor tried some space-looking spectacles on Teddy to see if he'd focus better on a video when he could see better, but he immediately took them off and had no interest to wear them.

So, our plan is to evaluate Teddy again in 6 months to see if his vision is the same. That'll allow us to verify that the original readings are accurate, that he's not outgrowing his farsightedness (which often can happen in younger children) and that he's not worse. I imagine we'll likely try the spectacles again and be encouraged to get glasses for him. 

I know several other PIGN kids have glasses and learn to tolerate them remarkably well. We've been told that if it makes enough of a difference that people tend to tolerate glasses, even those who wouldn't normally. We'll worry about that and cross that bridge when it comes. (My friend had a mini breakdown on my behalf at the thought of making Teddy wearing glasses. She calmed down once her husband reassured her that Teddy will take any advantage to continue making as much mischief as possible.) 

It's amazing that they can test vision without a person saying a word or really even following instructions. It's even more amazing that we found an eye doctor who is so caring, compassionate and flexible in doing his job that he made something we were dreading into an experience where we all left with smiles. 

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