"She refused to be bored, chiefly because she wasn't boring." Zelda Fitzgerald

Monday, November 22, 2010

Ptosis Update

You can see that his left eye creases differently, but otherwise looks pretty darn ideal. There is also a touch of scarring in the eyebrow incision spot that you can't really see in this photo.

Those who have been following for only a short time may not know that Dee our second son, was born with congenital ptosis, an eye condition which basically means his eyelid didn't raise and lower properly and was permanently drooped. I talked through my blog about how the surgery procedure worked and shared the immediete recovery aftermath business with everyone, but I have said nary a word about it for ages, very nearly a year really, so I thought I'd give a quick little update.

Dee's vision is vastly improved and I really think we did the right thing. He can see up above him, squint his eyes, view the world binocularly, and has a lot more physical confidence than he did pre-surgery. That said, his eye will never look perfectly normal, sometimes he only opens one eye, sometimes his control is delayed and sometimes even when he does have his "adjusted" eye open it just looks slightly uneven. The cosmetics aren't perfect. That said, I have no major complaints. Surgery was scary, but I think it was a good choice.

We are still on a fairly frequent upkeep schedule with lots of eye doctor check-ups compared to the average kid although they are dropping off to be less and less frequent since he's had no real issues post-op. There have been no documented problems since although we're wondering if he might be starting to have a little lazy eye muscle movement, amblyopia is the technical term. No clear confirmation yet on that and in many ways we're still really waiting for him to get obedient and communicative enough to undergo serious visual testing. Only then will we really know how he's actually developing. He's only two and we've been told that this sort of thing will begin around three or so.

Its been pretty interesting to have a teeny, tiny taste of family handicap politics present itself in our life. I very, very often field pretty bold questions from strangers in public places:

"What's wrong with his eye?"
"Is he okay?"
"Did something happen to him?"
"Can your son see?"

That sort of thing...and I try to answer honestly and warmly. Its a little shocking to have people point out their observation that they notice something amiss and a piece of me feels defensive but there's a small bit of me that is glad that they just ask, frankly instead of whispering behind their hands at us. I wonder how having ptosis will affect him as a person and what he will say when people start to ask him their questions instead of me. So far, I have yet to hear anything from Dee himself about how his eye affects him either physically or socially/emotionally. I'm very curious to see if anything will ever emerge there and also wonder if he remembers the surgery experience.

For now, things are good...easy and uneventful, which is about as great as you can hope for in a post surgery world. You want things good and boring in the health histories of your kids. Its just a good way.

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