I thought I had blogged about this before, but in looking back at old posts, realized I didn’t. Ben was diagnosed with Duanes Syndrome a while back. Duanes Syndrome is different for different people but for Ben, it means his right eye cannot turn inward past a certain point. It doesn’t affect his vision at all, but just makes it harder for him to center his eyes together on a focal point. To compensate for this, he turns his head slightly. Check out old pictures, you will notice he never looks at the camera head on.
Duanes Syndrome (according to Wikipedia, my go to source for everything) is a rare congenital eye movement disorder. It is the first thing in Ben’s world that has nothing to do with prematurity. Nope, this one is a birth defect! A missing sixth cranial nerve. As birth defects go, I guess is isn’t so bad.
To truncate a very long story involving multiple doctors and second opinions, it looks like after watching this for six months, it is time to do surgery. I have it tentatively scheduled for next Thursday but I think I am going to push it back a week to allow Josh time to talk to the doctor and get some more clarification on the end results of surgery.
I did want to see if else had any experience with this syndrome? There isn’t a ton of information online which is why we are struggling with making a final surgery decision.