Recharge

I've gotten pretty bad about only posting once a week, haven't I?

I guess I'm just running out of hot topics. lol

We are sort of stuck in a blah moment too. No exciting new med trials, a slight plateau in development, you know...just nothing new.

I will say that I got a wonderful mental break over the weekend. We took the boat out on Friday while Mom came over to watch Austin. A twelve hour shift she took on!! But, it was honestly exactly what I needed. Of course I came back with a nice burn (the result of no sun exposure in three years), bruises (from crashing on the kneeboard), and sun drained!! I could barely move the next morning...kneeboarding was just not as easy as I remembered from when I was twelve!! lol A tired and slightly aging body and a little extra weight makes quite a difference I suppose!!

It was wonderful though that she came here. There was no packing of the endless Austin gear or drop offs to be arranged. And no having to get back before his medicine and bedtime...He was tucked in and snoozing away by the time we got in. That was awesome!

I realized how much that helps me mentally (because trust me, there was no physical break involved!). It's not that I don't think of Austin when I'm away...or worry about seizures either.

But, not having to witness them over and over and over. It helps me recharge a little. Because each one I see takes a little bit more out of me...emotionally. Out of sight, out of mind is definitely not the case. But I only saw one cluster the whole day. That did help. Tremendously.

And he's doing okay for the moment. Seizures aren't outrageous...although far from gone. It's been average. Drops are fairly minimal too. Could be typical Austin-seizure-cycling going on though. He tends to have a great week followed by a horrible one...followed by a decent one...then by a great one again. An endless cycle.

But, we're hanging in. Still waiting for our EEG and routine visit on the 24th of this month. I always get worked up about visits that involve EEGs. Wondering if there's been any improvement...or if it's worse. He's still having numerous seizures on a daily basis...so I'm not expecting much. We'll just have to wait and see.

By the way...did I ever post about the See 'n Say? We were so excited when he started to grasp the concept of it. We would pull down the handle and he would watch and listen...then grab the handle to restart it. He couldn't quite get his motor skills going enough to pull it down himself. He would really just wiggle it. He's definitely getting the hang of it now! One day last week he just "got it". With his right hand no less (he tends to favor his left arm for most activities). Slowly but surely...we're moving forward.

In fact, yesterday, during his one year ECI evaluation, we realized that he's met and exceeded about 80% of the goals we established six months ago. Goals that seemed unattainable at the time. But here we are...having to make new ones!

I can't tell you how much it blows my mind to know...that even with this monsterous electrical activity going on in his little brain all day everyday...that he's still able to piece certain concepts together and learn. Yes, he's struggling in some of the very basic areas...but there are still wheels turning up there. During all of this. Our IS kiddos are such fighters!!!