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Thursday, November 15, 2012

Amazing YES.

So about that surgery...

...we postponed it. Not begrudgingly.

Our household was sick last weekend. Our household minus Christian. He was just fine, thankfully. But Mom was sick. And when Mom is sick, everything stops. Well, I wish everything stopped, but that doesn't really happen, so I just complete was is absolutely necessary.

Lola was sick, too. And her poor little throat gets mighty croupy any time she gets sick. It's very scary. And it keeps her up all night.

My cold + Lola's croupy cough + Lola's 103 degree temperature + My lack of sleep from waking up every half hour + Lola's rapid heart beat and quick respiration + Did I mention I was sick, too? + We have to check in for surgery at 5:30 in the morning for an 8:30 surgery time = Yeah, right. This is not happening.

So we postponed without feeling the least bit guilty. And we didn't want Christian catching any of our yuckies while having to recover from surgery. Something tells me that would have been semi-nightmarish. No matter. He didn't have surgery and he didn't catch the cold (yet). Win-win.

We are also expecting a augmentative communication evaluation soon. This process has literally taken almost a year to come to fruition and I have no idea why. But here we are, no, not this month. January! It might seem like more waiting, and it is, but I don't mind. January feels new. December is so busy they don't even administer evaluations. Fine by me! We are busy, too, so January it is! We did have a glimmer of hope at the prospect of being seen sooner, like today! But then we got a call that they didn't bring the necessary equipment to accurately assess Christian. Wind exit sail. There might be a slim, teeny chance Christian could possibly be ready to test out an eye gaze talker, so what we will do is a preliminary evaluation with eye gaze talker representatives so we'll have even more information for the big evaluation in January.

There is also a study in San Antonio involving brain scans of children with severe non-birth related damage that some of our friends are doing. The study takes high resolution pictures of the brain and evaluates its potential function in a resting state. The goal is to compare it with a typical child of the same age. This has never been done before and it might provide answers to how much the brain of an injured child functions, giving parents and the medical community better insight in how to help children like Christian. That's the positive outlook anyway. It looked like Christian would be a great candidate, but then we found out that having a VNS implant is a disqualifier. Something to do with the magnetizing power of the MRI. Rats! But I'm still excited that there is even a study paying attention and looking for answers in our kiddos. We'll be rooting from the sidelines on this one.

So we got a few NO's this week. It's discouraging. It calls for the box of brownie mix Lola has been asking us to bake for five days to finally make a chocolaty showing. But I'm thankful for the NO's because without them we wouldn't know how amazing YES feels, right?

Oh, and today when I took Christian to school, I wheeled him into his classroom and a tiny girl in a purple shirt ran up to him and yelled, "Christian!" and threw her arms around him. I guess she is a classmate of Christian's and she loves him. He is her favorite. I noticed she had a Thomas sticker on her hand and I told Christian about it. So she took it off and ripped it in half, giving half of the ripped sticker to Christian.

God, I love compassionate and loving kids and I love the parents who create them. It was an amazing YES.

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