Thursday, March 18, 2010

Back to the beginning?


Well, Kale's surgery last month went okay. His left eye was left alone and his right one was fitted with a conformer with a large stem sticking out. I was gonna give it two weeks before it came out--which turned out to be one week too many. In the midst of a tantrum, the thing just popped out. I just knew it would! Maaaaan. I'd be lying if I told you it didn't bother me. I actually ended up in tears. Why? Because now we're right back where we started one year ago.

I called his doctor the next day, she was busy so I talked to her nurse (or tech--I can never remember what it is she calls herself...her name is Stacey--that much I do know). Anyway, Stacey said that Dr. S would be out the next week but suggested we try and meet with the ocularist to see if they could fit something back in there. Yeah, totally not gonna happen is pretty much what I told her. The night that the conformer fell out, his "lids" were separated. By morning, they were sealed shut again. It probably didn't help that he was sick, either. Anyway, so we won't be meeting with anyone until the end of the month.

I'm trying not to think about it. It makes my whole body ache when I do--thinking about "what now?"--what the next move is. Because we really honestly just don't know what to do. It's so frustrating. I do know that Kale is much happier now that he's free of anything being in his eyes. For the past year it's been conformer and expanders. And now he has nothing and he looks great! I know it shouldn't matter how he looks, but if you know Kale, you know he's always got some sort of funkiness going on. Crustiness and things like that always around his eye. Now? None of that.

Spring Break is coming up for Maile in a week and Mike is hoping to be off during that time. I suggested to Mike today that we should go and have our first professional family picture done. We have never had one done of all of us and the one time we were going to take cute ones of Kale and Maile together at Christmas, we couldn't because he had that scary looking thing going on on his left eye. So I think we're going to take advantage of the time we have with him not having to have any surgeries and having no type of conformer or expander and just do it.

We have been going back and forth on whether or not to get a second opinion. As for where we'd get that from? Hell if we know. Kale's condition is so freakin' rare we don't know that anyone will even know where to begin. It sucks. Ugh....the body aches are coming just by thinking about it. I think we'll just see how his next appointment goes, see what his doc says and decide from there what to do. It would just be so nice to have someone else in our shoes--or someone who has been there to give us advice.

Aiight. That's it for now. I'll be back in a couple of days to post about Maile's 6th birthday party! She turned six this past Tuesday--I cannot believe it.

Until then.

No comments: