Eye Stuff

So we saw the Pediatric Ophthalmologist (surgeon) today. I really love this Dr., he's wonderful with Ben, he's very good at what he does and he comes with great references. We had a great experience with him when he did Ben's surgery back in 2005 (when Ben was 9 mos. old) for his strabismus and nystagmus... and he did an awesome job. Ben's eyes are still dead on straight and I have never seen them shake again since the surgery. We trust him. We think he's very good.

So anyway, we saw him today and I mentioned that in many of the pics I've taken of Ben lately, and I've been taking many all through the birthdays and holiday season here, I've noticed that in MOST of them his lid is completely covering his pupil :( Not good. His eye actually looks fairly good today, the lid covering about half of his pupil, which is good... but lately it's been much lower and a cause for concern. So we talked about that a bit, he put Ben through his paces and Ben was a bit more cooperative than he has been in the past. It's not really that Ben's trying to be uncooperative when he sees the Dr., because he's VERY accustomed to Dr.'s and Dr.'s offices and all that stuff, he never cries or gets upset (not even when they take blood) but he does get very shy and reserved and quiet. So the Dr. asks him to do something and Ben will just sit there because he's shy. Today I kind of got him moving on things and he was able to point to the things the Dr. asked him to point to and do what was asked of him. Ed and I were both REALLY proud of him.

At this point the Dr. says that Ben is seeing 20/20 out of both eyes, so that's great news. He is very concerned about the greater droop though and mentioned that to him it looked slightly more droopy today but that he suspects, from what we told him, that he was just catching him on a good day. So now we are heavily weighing our surgery options. Something that is even hard to type much less think about. It's a scary situation really.

We have to chose to wait on the surgery, and hope for the best, or do it now. With this particular surgery there are two ways to do it, and the preferable method that will look the best and work the best functionally, it's better to wait until the child is at least 4 and preferably over 5 y/o to do it. They have to cut a muscle to get the eye to lift and the results are better when you're working with a larger muscle and a child that is more able to fully cooperate to get the most accurate measurements possible prior to surgery to know exactly how much to cut. So the surgery that would be the BEST is best done on children older than Ben. The second option is a "sling" surgery and basically makes it possible to control the height of the eyelid by using the eyebrow muscles. It involves more scarring, the eye would never close properly again (possibly requiring the use of eye drops several times daily for the rest of his life), and the end result will not look as "normal" as if they do the first kind of surgery (the levator surgery). So the obvious choice seems to be to WAIT on the surgery of course.

However that comes with risks. If we chose to wait and Ben's eyelid interferes with his vision too much his brain will eventually just turn that eye OFF. Yes. That's what I said... turn it off. So if we wait too long he will lose his vision in his left eye, for the rest of his life. Once the brain turns it off, you can't turn it back on again. That will be it and there will be nothing we can do about it. The Dr. is encouraged in that Ben knows all the "tricks" to getting the best use out of his left eye that he can right now. He lifts his eyebrows very high when trying hard to use that left eye, he tilts his chin up so better be able to look UNDER the lid (and Dr. mentioned that he does have a "higher head tilt" than he'd had so another reason to think that his problem is getting worse). He's got this whole how to make the eye work thing down pretty well. So that's all GOOD. It's good that he knows how to get around it, that he's learned how to get the best function out of that eye that he can. He's smart, he's figured this all out on his own and he's finding his way around his issues. He's amazing.

So the question is... what do we do? Do we do the surgery now, with the possibility that we're maybe "jumping the gun" a little bit out of concern for protecting his vision in that eye? Do we wait and hope and pray that he'll continue to do his tricks and figure his way around things so that we can make the choice for the better surgery in the next year or two? Do we risk his vision in that eye for a possible better cosmetic and functional result? Do we go with the "not as good" surgery because we're afraid he'll go blind in his left eye permanently? What? What's the RIGHT decision?

I don't know. Ed doesn't know. The Dr. doesn't know. In the long run there will be no right or wrong decision, just the decision that we make with Ben's best interests in mind and in our hearts. We will have to chose at some point and that will be the decision. Not the right decision, not the wrong decision, just the decision that was made and it'll be too late to turn back and no time for "what if" and we'll move forward. Just like we always do where Ben and his health issues are concerned. It doesn't make it any less scary though. It also doesn't make it easy.