Wednesday, January 19, 2011

Home at last

Just a very quick update so I'm not leaving everyone hanging (those of you not following on facebook)...

We are home!

Austin is VERY hard to read right now. Like my mom said, I almost have to relearn all his cues and expressions...movements, noises, even seizures and so forth. What I used to know were seizures is out the window almost. I do know some are definitely seizures, but others are questionable. All are different overall. Some are far more subtle and others are...just different.

I've almost been scared to update because every time I do, something changes. We haven't had consistent highs or lows. It's been all over the board so far. I thought it may finally be safe to report about his day yesterday and our trip home...I was planning on doing that first thing this morning. Then, at 6 am the seizures started back up. He'd gone 36 hours without a "big" seizure or cluster. I can't even describe how that felt. I was still cautious because we'd seen him do that (not quite 36 hours) before and it immediately went downhill about 5 minutes after I updated all my family and friends. And I was right to hold off. He's had about 50 definite seizures today.

I know, I know, I know it's still early. Our doctors just keep stressing that. But, can you imagine how devastating it is to witness such a wonderful day with no major seizures (maybe 10 light twitches), to see him smile again, hear him belt out giggles, and just feel like what I just put him through may just be worth it? Then, to wake up to a day that seemed no different than any other before surgery -only today he's hurting, weak, and sporting a massive incision on his head as a reminder of what I just put him through...And for what? I'm not saying it won't improve. That's just how it felt this morning. That nothing had changed except a missing frontal lobe.

It has gradually improved as the day's gone by. There have been hours between seizures some of the time -still an improvement. He was so happy to get up and walk around (he's still weak so we're holding both hands). Hopefully our PT will get going next week.

So, we're not just dealing with recovery. We're dealing with seizures as well. A rollercoaster so to speak. I was about as realistic as I thought I could be going into this knowing we'd still possibly be dealing with seizures. It's never enough though. There's absolutely no way to not be devastated. There's just not.

We have to just wait it out. Concentrate on getting him well is priority. He's a very strong and determined kiddo. He's been through hell and back this past week, but he's doing amazingly well regaining his strength. His interaction is wonderful and I've never seen him laugh so much consistently where seizures weren't involved.

I will hopefully try to update again tomorrow and maybe get some new photos up. I still have a lot to say. We've all just been so tired and there's always one eye on Austin -even when he sleeps (he keeps waking up wanting to scratch his incision, so we've been trying to keep that under control).

4 comments:

happy's mommy said...

Let the healing begin...

xoxo

...danielle

JSmith5780 said...

Thinking of you!

Jamie said...

Oh Sweet Boy. One day at a time. hang in there. Good thoughts sent your way...and maybe a bag full of snow too...lol

Sophie's Story by Elaine said...

I can't even imagine the emotions that you must be feeling. You all are forever in my thoughts. I hope each day is better than the one before.