Saturday, October 24, 2009

yeah...about that dust

Sinead...you were right.



Doubt it'll be settling anytime soon.



::smile and sigh::



But at least we're hoooooooome. Not much feels better!



We're all attempting to normalize again. Into our new normal.



Toby and Bristel missed us so incredibly much. Probably more than we'll ever be able to understand. And it's been interesting. Toby...who vocalized missing us while we were gone...has been buried in his new gadget. A Nintendo DS. Which was an early Christmas present to help with the separation anxiety. But when he's not zoned into fighting off the bad guys on the little glowing screen...he's been moody. Gloomy and cranky. Which I know is just a reflection of the toll this journey has taken on his little sensitive heart. He's only eight after all. Processing all those layers of emotions...way too many emotions for an eight year old if you ask me...can't be easy. Although he's extraordinarily sweet with Trevy. Kissing him often. And telling him he loves him...while giving me the evil eye!



Bristel on the other hand...gave us the cold shoulder while we were apart. Refusing to talk to us on the phone. Or say I love you. Or good night. Telling people at church that "my mommy is never coming home". But when we were finally reunited...she literally jumped into Jonathan's arms. And he's a tall guy. Her anger over our leaving melted away...and has been replaced by lots of hugs and kisses. And cuddling. She's also been super sweet with Trevy. Convinced she's his nurse!



And speaking of Trevy...



He's doing SO great! Really...really...great. Emotionally his happy is etched all over his little crooked smile. He thinks Toby and Bristel are the funniest things ever! And is most content when we're all snuggled up together on the couch. Or in bed. You can almost feel him thinking "ahhhhhh...this is the life for me"! We couldn't agree more!



Physically he's coming along. He's taken a handful of solo steps when prodded. And has been able to sit up and play for longer stretches of time. Although...I've gotta say...it is shocking how quickly he wasted away. Jonathan says Trevy's legs are so skinny now that he could star in a Save the Children commercial! And it's true. He went from chunky booty and thighs...to loose skin hanging from skinny bones. It's hard to look at. But now that he's keeping some food down...we're seeing more desire. More strength. I was getting very worried for awhile there. It felt like his spunk died. And we were SO counting on that spunk. Sometimes we'll see it flicker in his eyes. My heart fills with hope when I see that spunk flicker.



I wish I could say I was over the moon about no seizures. It's been week since that nasty tonic after all. And while that does mean something. My heart is still so...so...worried. Partly because my eyes have seen some weirdness. Jonathan's too. So I know it's not all in my loopy head. It's little stuff. A lip smacking here. An eye deviation there. Two head nod-ish movements. Stuff that most people wouldn't even notice. And honestly...we're not really sure what to make of. It may just be his brain re-wiring. Or something funky like that. We're hoping that direction for sure!



This post is kinda blah, huh? I'm very tired though. And Trevy is very demanding right now.



But I'll try to spice it up by ending on a happy note...



Trevy has been giving Hi-Fives like crazy! On demand...as in when asked! As in...I think he knows what we're saying!




He has never ever not once in his little life given a hi-five! In fact...it was always a little bit annoying when people would ask him for hi-fives. Smiling and hand held up expectantly. Uncomfortable hanging in the air with it. Jonathan and I were never really sure what to do with that. Tell them he doesn't have a clue? Go into a dissertation on seizures...and what was happening inside his little head? Or let them figure it out on their own? It wasn't their fault really. He looked like he should understand. He looked like every other toddler out there. But he wasn't. Not on the the inside. And he isn't now.



But he's giving hi-fives like he could be!

10 comments:

Sinead said...

It sounds like things are coming along swimingly! Lots of little signs that are giving you a glimpse into how things might be. You have been living with the seizure monster for a long time now. Every unusual thing you see is going to make you wonder. Big eyes - seizure or excitement. Shakiness - seizure or constipation. Sleepiness - seizure or just plain tired. It's weird still being on seizure alert but it's going to take time for you to adjust to seeing less activity. You went to war with the seizure monster and won but you are always going to be watching your borders in case seizure monster decides to launch another strike. I don't know when you get to move on and say it's over. Mission accomplished. It's scary to state that it is over in case it is tempting fate. When the seizures came back I regretted not celebrating the seizure free days when I had them. Eat cake. Celebrate. We don't know what the future brings but we do know that we are strong enough for it. So be glad for every seizure free day and every high five.

Katy Duddridge said...

So pleased you've got home and things are settling, a bit.

Worried about the little things you are seeing and hoping so much that they are just his brain settling down too.

And hope he gets back to 'chunky' asap!!

Keep strong x

Keong said...

Very very glad Trevy is doing so well. :)

Keong said...

Oh and I am heading to Baltimore on Tuesday. :)

Lisa said...

Julia has had weird behavior too...like I mentioned when we were in the hospital together, we were sure she was having seizures. But Dr. S saw it and was not concerned at all, said it was normal weirdness (not his words obviously :)) resulting from the brain healing from the MST. Hoping for the same for you guys.

JSmith5780 said...

A big virtual hi five for Trevy and for all of you for making it through.

Thinking of you!
hugs

P.S. my boys are getting DS Lites for Xmas. Glad Toby is loving his!

Mrs. M said...

Isn't it wonderful to be home?! Ah, home....that in itself is healing to all of you.
Toby will come along...it's like bringing a new baby home, "You LEFT me and now THIS?!" When they push you away, push closer as that's what they want...always.
Bristel...so cute! Miss 4Yr Nurse.
Trevy...what an amazing little trooper! High Fives!! That's no less than awesome.
I get that you're scared, get that it's kinda hard to be too happy, too accepting and all...there's an underlying what if and what next. Enjoy your little man. Beef him up, you Italian Mamaama!:)
Hugs to you,
M

Dawson said...

Needed some good news today. THANK YOU!!!

And trevor......... Heres a high five all the way from Alabama little buddy..

Couldnt be more proud

Adesta said...

Glad to hear that Trev is doing better! ^5 to Trevy!! I'm sure he'll chunk right back up once his full appetite returns. And then, watch out...kids are so able to eat you out of house and home...or is that just my kids?! :)

I'm so glad you are all home. I'm sure Toby will be fine. I think he's just trying to come to terms with the fact that Trevy had to have 1/2 his brain removed just to kill off the seizure monster and deep down, he pity's the little guy but doesn't want to show that. Now Bri...that's too cute!

Colby said...

Sounds like things are coming along well....I'm sure Trevor will get those thighs back real soon!!And I am sure your other two's reactions are just noraml stuff...(Had to giggle about Bristel telling that you weren't ever coming home!)

I have often wondered what it would be like if Colby STOPPED having sz.....Could I EVER stop being obsessed over watching him? I guess it will come with time...It will be a big adjustment, but you will do it!!!

And I think I, too, would be thinking every little "weirdness" was a seizure of some sort...How can you NOT? That's all you've known FOREVER with Trevy!!! But I'll just bet he is fine!!!

SO glad to hear all of this...And high fives? LOVE it!!!

Cyndi