Wednesday, July 8, 2009

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!!!

6 comments:

blogzilly said...

Glad you caught a break, for a short while. On the same page with you there though, sis...hard to not think about him when we're not WITH him.

What's your daily routine like? I'm curious? I actually have a blog about that scheduled for tomorrow morning and it's been on my mind to ask some of the sisters about how each day goes.

We're in a waiting rut too...I hate the waiting for the next thing. Suckola.

Colby said...

What a WONDERFUL Day....And a WONDERFUL grandmother!!! I know what you mean about having them come to YOUR place....SO much easier, and Austin is in HIS territory....My parents used to keep Colby all the time for me until Daddy got so sick....Now I find myself running for a two-hour tops appt. here and there while Mom stays with him and doing the shopping at night after he is in bed...But she is 74 now...In great shape, but....You know....But I am going to try and get out a little more often...You know how hard it is to do, though...ALL you guys do! But my advice is to KEEP the HABIT of doing it....So it will just continue to come naturally....DON'T be like me!!!

Cyndi

PS: And yes, Ken..."SUCKOLA"!!!!!

JSmith5780 said...

80% of goals attained? That's awesome! So excited for you all!!

Glad you had a great vacation day!

baby trevor's mommy said...

I can't remember if I've mentioned applying for respite hours with you before? I know it's hard. At least it was for me. I felt like a mooch. Like somehow it was class-less for me to ask for help.

But now that I have a helper...wow...it's just nice. Because the reality is...for us stay-at-homies it's SO hard to be SO saturated with seizures. Ken's post just hit it...how they steal the Joy. Even from those with faith.

Part of our particular struggle...is because our kids are "high functioning" they aren't seen as "needy". But living with a perpetual 15 month old is hard enough...but then having to deal with seizures too.

But I did qualify for 8 hours a week. It's being covered by our insurance...cause frankly...we be po'. And I did have to weed through a couple of girls before I found the right fit.

But it's allowed me to spend one on one time with Tobes and Bri. And go to church without having to chase and worry about Trevy.

It's really been a blessing. And I've been meaning to write a post about it for a loooooong time. Maybe I will...dunno...

Anyway...it's a thought sweetie. But I totally get it if you're not comfy with the idea. I wasn't either...

...danielle

Sophie's Story by Elaine said...

Mental breaks are good. Some days Brandon would come home from work and I would just say I need to get out of here...if only for a moment to run to the store by myself. Because the thing with IS is that it happens ALL DAY LONG.

I can't remember exactly when but Sophie just outgrew her drop seizures. They started when she was around 18 months old and stopped sometime when she was 2 years old.

Do Austin's EEGs usually show improvement each time?

That is great news...80% of his goals!!!

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