Kale had a follow up appointment yesterday in Birmingham. It's looking like the skin on his right eye is starting to wear thin--which has Dr. Scruggs concerned that the expander is pushing through like it did on the left side. Awesome. So she said she'll be in touch with us in a week or so and will probably have Kale back in a few weeks to remove the expander and put in a conformer. As for his left eye, it's okay. For now.
So many things are bothering me right now. His left eye looks good--to us--but to others, it apparently looks awful. I won't go into that right now, but it bothers me. I'm doing what I can to take care of it, but nothing seems to work. I'll leave it at that.
All we've been told since Kale was born that without the help of conformers/expanders his eye sockets won't grow correctly which in turn could cause the rest of his facial structures to grow incorrectly. But then I read from actual parents of children with bilateral anophthalmia/microphthalmia who say they chose to not have their kids undergo surgery or wear any type of prosthetic and they never had issues with any of that happening. The thing is, I don't know necessarily how this works with Kale since we've just found out his actual diagnosis is cryptophthalmos--the microphthalmia being a result of it.
But I can't help it. I just wish I could hear someone tell me that Kale doesn't need to go through all these damn surgeries. I just want someone to tell me that he's going to be fine and that all of this is pointless. Because that's how it effing feels right now. If this right expander of his is in fact doing what the left one did, then we have to start almost all the way over. And I just don't think I can allow that. He is 16 months old now. And all this crap he's had to go through has hindered some of his development. He might actually be feeding himself right now if it weren't for these surgeries. He might actually sleep normally. He might be walking already. But all of these things are not happening and I blame it on the surgeries. Tomorrow he has an occupational therapy evaluation--hopefully some of this can be addressed. But I'm sure it'll all come back to the fact that if it weren't for him going through all of this, he'd be right where he needs to be.
We ask his doctor questions and she tells us as much as she can, but she's new to this whole cryptophthalmos herself. She tells us that she consults with other doctors near and far to get second opinions and we greatly appreciate it. But I don't want Kale to be anyone's guinea pig. I don't necessarily feel that way...yet. But I'm worried that I will eventually.
I don't know. I guess I'm just having a hard time right now. It's pretty lonely right now because there really isn't anyone who can give us any real advice, there's really nobody for us to relate to. It's a pretty awful feeling. I hope it passes.