Sunday, July 31, 2011


Will has three visual challenges to deal with on a regular basis. The first is cortical visual impairment (CVI), which is actually not an "eye problem" per se, but caused by damage in the transmission lines between the eye and the brain. Will's CVI is likely caused by the same brain hemorrhage that caused his hydrocephalus and cerebral palsy. It is very common for children with cerebral palsy to also have CVI. Will's ophthalmologist once described CVI to me as this:

"His visual field isn't clear like yours. He sees things in patches. Imagine yourself looking through Swiss cheese each day. And if that wasn't unfair enough, tomorrow when you wake up, imagine that the Swiss cheese has rotated 15 degrees to the left. Each day you have to learn where you can see and where you can't."

There isn't much that can be done to assist a person dealing with CVI, though with time they tend to get better at dealing with the idiosyncrasies of the impairment. Will's CVI has been described as minor, however we continue to see him have eye misalignment, especially when he is tired on concentrating on another sense (usually hearing).

As is common with CVI, when Will is looking at something, he does not appear to be looking directly at it. He seems to look at things through the side of his eye. This is because people with CVI tend to have good peripheral vision but really poor center vision. We know that he can see, though, due to his reactions to things around him.

Will's second visual challenge is called retinopathy of prematurity (ROP). When Will was still in the NICU, the little blood vessels in both his eyes started to grow in a very disorganized manner. His retinas had some scarring and were on the verge of detaching. They did laser surgery in both eyes to reattach his retinas and prevent blindness. However children who have had ROP have a very high incidence of near-sightedness.

The third visual "challenge" is just genetics. Though Nate doesn't wear glasses, I have worn them since the 6th grade. Both of my parents wore glasses at an early age. In fact, my dad got his first pair of glasses at the age of 4.

Well now he and Will have something else in common (aside from their shared love of running around and around on the playground together and dropping wooden fruit)!

Will will soon be receiving his first pair of glasses! At Will's annual ophthalmology appointment, his doctor felt as though Will hasn't made the visual progress this year that he has been over the past couple of years. It is possible that he has learned to control his CVI as best he can, but just cannot see clearly. The doctor thought that perhaps it was time to correct for Will's ROP- and genetics-caused near-sightedness, and see if that helped him better control his eyes.

I've been expecting Will to get glasses for years. But this was the first time that the doctor and I agreed on it. We know that Will isn't really going to enjoy having the glasses at first, but he'll get used to them. And we definitely all feel that by doing what we can to help Will's vision, he'll have the best chance of being involved and engaged in his own life. Should be good! Now we just have to wait for the glasses to come in!

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