happy being trevy

I'll be wearing it for him... even if he won't sit still long enought to snap a decent pic together!

Well... I'm happy to report that Trevy's PET was a breeze. Although I swear the next time a nurse tells me he has juicy veins...I'm gonna... Thankfully Dr. Sleep (I may have a crush on Dr. Sleep) swooped in to the rescue. He's of the put em' to sleep THEN do the IV persuasion. Other than listening to Trevy's angry voice muffled behind the mask...it was SO much easier! That...and having Jonathan there for the first hour or so! Can you believe it still took a couple sticks to get a line in! Juicy veins my... The scan itself was only 10 minutes long. I didn't realize that they start with a CT scan first...and then move into the PET. Same machine does both tests. The CT scan may have revealed the reason for all the recent cranky boy antics. Clear as day were four VERY large molars pushing towards the surface. It was pretty cool... But I'm zonked. Even though it wasn't a bad day...somehow it still wipes it outta ya. Or is it just me? ...

I LOOOOOVE the way... Trevy watches tv... The way he puts his little crooked feet... The way he rests his little elbows on the table... And looks SO intently... For no more than five minutes in a row... Don't you just wanna pinch that little diaper bum-bum?! Aren't I lucky that I get to!? Oh...and I LOVE her tv watching ways too!

Tomorrow is PET scan day. I was trying so hard to be brave. Care-free. Independant. I told everybody I was okay going alone. It's only thirty minutes each way...I said. Filling out paperwork by myself would be a breeze with Trevy (starving and) sitting sweetly in his stroller. I'm strong...I could manage holding him down (even if it ripped my bloody heart out) while the IV team (that gosh darn team better be there btw!) attempted to get a line in. I've been mentally pep talking myself. Suck it up and stop being such a wuss! You're a strong woman! Brave! You lived in Africa for crying out loud... You can handle this! This is for Trevy...be there for Trevy! But the relief that overwhelmed me this morning when Jonathan said he was going up with me. And would stay as long as possible. And do the holding during the IV poke. That relief proved otherwise... Cause the reality is... I'm as much of a baby as my baby!

Jonathan was washing Bristel's hair. And chatting about our nightly Jeopardy habit. Says daddy... You sure are learning a lot from Jeopardy. Says sudzy daughter... Yep! I'm very learning how to sleep! **************** Although it tickled my funny spot just as much that Jonathan hollered to me... Quick babe...I've got one for your random-things! **************** On the topic of things that make me laugh... It totally cracked me up the other day in the mommy room. We were all chatting about our kids. And the topic of PT came up. I mentioned that Trevy doesn't have PT anymore. The mom across from me looked appalled as she blurted... You do know he walks funny right? I do! But I'm of the persuasion that it's part of his undeniable Trevy charm! *********** The Scene: I haven't been getting the greatest sleep. Even with Trevy doing better. Which means I'm a cranky morning person. At least until the first coffee's had a chance to se...

Lots of testing...and med swapping going on in the life of Trevy during the next coupla weeks... March 24 th ...PET scan. Which...Dr. Chugani has agreed to look over for us as well! March 30-31st...in-patient VEEG . Dr. Genes wants to draw some blood to run an SCN 1A test at the same time. Annnnnnd ...we're set to say good riddance to Vigabatrin ...and begin trialing Banzel . April 3rd... Trevy's 2nd birthday ! There may be a zoo trip involved? April 17 th ... Trevy's case will be presented to the surgical team. Depending on the data gathered we'll then be referred to Boston Children's. Where Dr. Neuro has assured me if Trevy is a surgical candidate...we'll be headed. I'm feeling MUCH more comfortable wrapping my mind around that!

So as we've been weaning off Vigabatrin I've noticed a couple weird things... Trevy's seizures are more often looking like one-sided arm jerk spasms that we noticed last September. As opposed to those nasty rip your heart out both arms above the head spasms. It's a mix of the two... It's the weirdest thing...but recently right before a cluster it's like the curtain parts. And Trevor has a sudden burst of clarity. His speech & cognition explode. It's very odd. And I can't quite figure out how to even convey what we're experiencing. It's just like everything gets sharp before the storm strikes. And for a few minutes we're in awe. Then the cluster comes. Trev used to roll with the punches. He'd have a cluster. It would pass. And he'd be jumping around the room again. Lately...he has a cluster. And after it passes he's very sleepy. Post-ictal . Sometimes he'll actually fall to sleep. Curled up on the floor (or...