The usual updates...
We are OFF Felbatol. Finally. I was hoping to see more of the real Austin peeking back out by now, but not quite yet. The upside has definitely been the reduction of those nasty side effects. He's eating MUCH better again, sleeping pretty well, and even "going" more.
Still waiting on that playful side with the laughter and curiosity to increase. He IS better, but not where he was pre-Felbatol.
I'm just praying it's still effects from the med rather than the hyps being back. I don't typically want to have EEGs at our epi visits, but this time is different. We have an appointment on the 30th but no EEG. It would be nice to know for sure. It's a strong possibility that it is back, seeing as the clusters are still going strong.
The last time I mentioned his seizures, I talked about a 70% reduction. They've picked back up again since then, but it hasn't deterred my faith. I'm still holding on to the prospect of seizure freedom. Med or no med, surgery or no surgery. It WILL happen.
So, I thought I would avoid this, but it feels weird just writing in standard update mode. I haven't gotten into anything more than just daily happenings and so forth. Problem is, I used to write about how horrible this felt and my struggles to live it and accept it. It was my passion. Trying to cope. I would pour my anger and my broken heart out here in hopes of gaining new prospective or just needing a release from the collection of emotions. But, now that I have reached this new path, I've left that behind. Now, I'm left with the struggle to write about something I cannot explain. I can't. So, for now, until I can explain this new passion, I will most likely keep to the standard updates. That also explains my lack of regular posting, by the way.
But, I will say, seizures and all...We are doing better than ever. Weird, huh? :)
Had to share this...
Someone fell asleep in the high chair yesterday! Craziest thing, he feel asleep mid-chew! One minute he's chomping away, the next...out like a light! He was tired and hungry...guess what won? :)
4 comments:
Awwwww...how sweet is he?! Love that!
I know what you mean about struggling how to share. Not everything we learn or "grow into" as I like to say is shareable. Or transferrable. Some things in life are so intensely intimate and personal...that it just doesn't tranfer. And when we try we're disappointed...because the other party(ies) doesn't recieve it the same way we did. But I've "grown into" being okay with that too. Because that thing...that I'm trying so hard to share...isn't meant for anybody else. It's mine. You know. And because I'm a woman of faith...I deeply believe it's because we have a God who works on a personal level. In a way that changes me (or you) in particular.
Anyway...
All that to say...it's okay. Your passion will drip through and color your posts. As you "grow into" the Life you've been Given...
Love you sweetie...
...danielle
That is the most adorable picture!!!
And like Danielle said...it is sometimes hard to put certain things into words. And sometimes there is no need to.
By the way, Sophie did horrible on Felbatol. And it usually took around 3 weeks after the wean was complete before I saw the side effects go away...this was with any AED she was on.
Too cute!! I wish I could fall asleep as easily :)
LOVE this! Look at his pretty mouth!!!
So many times, I pull up my blog, wanting to post, and I feel like I have nothing to say...I FEEL all this stuff, but I just can't put it into words...So I justexit out and go onto something else...I guess I need to do SOMETHING...Like at least post a photo or something....
I can identify SO strongly with your feelings....Maybe because, even though Colby doesn't have I.S., he is not a surgical candidate, either....But hopefully things might change for Austin and he WILL be one day...Who knows?? He is SO young!!!
Don't EVER keep from writing for ANY reason...I always LOVE to check in!!
Cyndi
Post a Comment