We went to Joel's first eye appointment today expecting patches. If you've been around Joel long, it's obvious that he has difficulty with his eyes from time to time. He tracks well, but every once in a while one of his eyes wanders (happens to both eyes.) This has happened since we were in Tacoma. There were too many variables at the time- being sedated and heavily medicated for 10 weeks, and some babies have poor eye muscle control anyway. Connor did when he was a few weeks old and it scared the crap out of me.
So here we are, Joel's seven months old, and still having these problems. We were referred to the opthamologist for what we thought would end up in eye patches to gain muscle control. We left with a different word: Command Center. Not what I wanted or expected. After the exam, the eye doc concluded that Joel's eye problem isn't a muscle issue. It's a "command center" issue.
We knew after Joel's brain bleeds/stroke/seizures/hydrocephalus that there was a possibility of side effects showing up later. I just didn't think this was one of them. Here's the problem with this. If an adult crosses their eyes, they see double. Kids don't. If one of their eyes isn't seeing the correct picture, the brain tells that eye to stop working altogether.
Luckily, our next appointment today was with Neuro, and Korol, (going by what we told her, not by physician notes) disagreed with what Dr. Shelly thought. She plans to talk to him and get back to us on this. I'm really hoping she's right.
Please pray for this, and for our family. It's hard to have stress enter our world and not have the other children affected somehow. They are our little sponges, and the last thing I want to happen is for them to resent Joel for the way "his news" changes the atmosphere.
For now, we do have patches, though I'm still a little confused as to what good they will do. He's supposed to wear them for 2 hours a day, alternating eyes daily. I'm going to stay as consistent as possible on making sure he gets the visual exercise he needs to progress if it's something that will help him.
I'm reminded of the story of Jesus bringing Lazarus back from the dead. He delayed healing him on purpose for the greater good, even though He loved Lazarus dearly. Funny, just after Pastor Kyle preached this sermon a few weeks ago, I wrote down the scripture notes and passed them on to a friend who I thought needed them. I found myself going through my sent folder, reading them back outloud, because tonight I needed to hear them too. I'm frustrated. And worried, even though I know I shouldn't be. I want this to be over with....for him to get better now. This has been a very long test, God. I want my normal back, and I want to bring my baby with me.