Bad News

When you see this picture, you really should laugh. I know that I do. My adorable, fun-loving boy loves to wear hats so much that occasionally he will insist on wearing two hats to bed at night. We took these pictures for the hats and it was an added bonus that I caught him trying to look to his left at something funny his daddy was doing. I think I've posted this photo before because he looks so silly.

This is Emmett's Duane syndrome. Please refer here to learn what Duane's syndrome is. It explains it much better than I do. In short, Emmett cannot rotate his left eye outward, which occasionally gives him a cross-eyed appearance.

We've known about Emmett's condition since he was about a year old. I kept noticing that sometimes if he was sitting in his high chair, there was something funny about his eyes. I wasn't sure if I was really seeing it or if it was my imagination, and it was only noticable to me when he was buckled down and couldn't move as freely. I mentioned it to our pediatrician who said that although he hadn't seen anything unusual in the eye exam he'd just given Emmett, we'd better take him in to a pediatric opthomologist right away. "If mom's noticing something's wrong, we'll take it seriously whether I see it or not" is what he told me. Did I mention I love my pediatrician?

We got a recommendation and off we went to see a pediatric opthomologist who specializes in unusual eye disorders. He confirmed my suspicions and taught me about Duane's syndrome for the first time. He said that it was a very rare condition, but in a practice like his, he sees it all the time. He told me that Emmett's symptoms were very mild, that he was compensating well, and that he could see perfectly. About 85% of people with Duane's go there entire lives without any need for surgical intervention, and he was confident that Emmett would be just fine. His only request was that we check in with him once a year as part of Emmett's annual wellness check. I was so relieved to know that it was nothing serious!

We've been going to our annual check-ups and everything has seemed fine, but this year as we got closer to our visit I started to get nervous. While I used to notice Emmett's crossed eyes only once in a while, now I was seeing them all the time. And over the last couple of months, strangers and friends alike have started to comment, "Oh wow! Is that your new trick? Crossing your eyes?" and I have to awkwardly explain that it's not a trick. No one used to ever notice unless I specifically pointed it out and they actively started to look for it. Now, everybody can see it. It's been worrying me.

And then there's Emmett's talent for falling down. He's only three years old and most of the time I just assumed that he's falling over all the time because he's just not destined to be an athlete. But sometimes Emmett can be standing still, turn his head, and suddenly lose balance and fall over. It's hilarious! Really. I've been guilty of laughing hysterically when I should have been more compassionate. And there are many times when he is running outside, turns his head to look at something on his left, and immediately topples over. Recently Emmett has started crying about going downstairs. He's started crying and screaming that he's afraid he's going to fall and insists on holding my hand. I haven't been very compassionate. I just thought he was being silly and trying to get attention. I've been letting him cry and making him come down on his own.

On Tuesday the eye doctor told me Emmett's condition is much worse now and he's probably seeing double whenever he tries to look left. It's very disorienting. I feel like a shmuck for being so heartless.

It turns out that the muscles in Emmett's eye are not compensating anymore. That Emmett's getting more prominent symptoms of strabismus and his eye is drifting inward slightly even when staring straight ahead, something I hadn't noticed. He's having to turn his head at odd angles to see to the left and he's losing balance most likely because of his double vision.

Emmett has to have eye surgery.

I'm sure there are more serious and more dangerous surgeries that people can have. I think of my own parents and how they had to watch me as a three-year-old under go several major operations and travel across the country to find a good surgeon. I'm sure it was horrible for them, even though I can hardly remember it.

But I still feel sick at the thought of it. I can't stand the idea of Emmett under anesthetic beneath a surgeon's knife. And I'm terrified that somehow surgery will make things worse. But if we do nothing then he will have to deal with neck problems, double vision, and eventually a lazy eye. Not to mention the ridicule of his peers as he gets older.

We have an appointment on October 2nd to meet with the ophthalmologist to ask questions and talk about our options. I have no idea when the surgery will be. We'll keep you updated.