Skip to main content

appropriately stupid

So we're in week two of Banzel.



Current dose is...



100mgs AM & PM



We just upped this morning actually.



The only negative side effect that we're seeing so far is excessive wobbliness. I was beginning to wonder if it's in my head. Heads are tricky like that. At least mine is.



But Trevy's teachers mentioned concern about his balance today at school. He was clumsy-er than normal. He's not the smoothest kiddo around anyway. But it seems that the new drug is messing with his equilibrium. I hope it's a passing thing...



Still seeing gobs of seizures. Nasty nasty seizures. Stupid seizures.



I said it out loud the other day...



Stupid seizures!



To which Toby responded...



Mom...do you really think it's appropriate to say "stupid"?



Eight year olds!



As appropriate as you feeling comfortable correcting me while your head is buried in your GameBoy...



I barked back.



He agreed that I made a good point. While never lifting his eyes from his little silver gizmo.



The truth of it is...



I HATE seizures.



And I hate meds that sound promising. But aren't.



::sigh::



But we'll give it two months of hoping that maybe the next increase'll do the trick. Unless Dr. RockStar has different ideas. And we're able to convince our insurance to follow his lead...
Labels:

Comments

blogzilly said…
I haven't told you this enough...I love reading your blog. I love the way you express what you feel, I love how matter of fact and real you are about it. I look forward to it every day, gives me an odd feeling of comfort, can't explain that, but it does.

My wife wanted me to tell you that she thinks Trevor is SUPER cute, but we knew that already, yeah?

And yeah...just got off the phone with my mother-in-law...explaining stuff, and you said it better than I could...I just freakin' HATE seizures. Hate 'em, hate 'em, hate 'em.

And if I said that aloud tonight my older son Carter would gasp and say 'Daddy...don't say 'hate'...that's a bad word.' Then proceed to laugh himself silly saying 'poop' and 'pee' until I tell him to stop saying THOSE bad words and then of course I'm the 'mean one' for making him stop.

Kids...I do really love them, they are a gift every single day. OK, not EVERY day...but lots of them. :)
April 10, 2009 at 7:08 AM
Shanna Grimes said…
Stinkin' seizures! It's true. You never know what the magic combo is going to be, so you just have to keep hoping and praying something is going to work. Ugh, so frustrating!
April 10, 2009 at 7:20 AM
Anonymous said…
I cannot find a comment link on your top post from today, Friday, and maybe you intended that.

My compliments, too, for your excellent composition/writing - conveying so clearly and appropriately how you are parenting Trevor.

What can I say to encourage you? Your faith will sustain you. You know that. Your faith is clearly represented here.

Blessings on you and your family. Barbara
April 10, 2009 at 8:06 AM
Monica~ James~ Connor said…
I know you probably left the comments off of the above post for a reason, and i respect that. i just wanted to let you know with tears running down my face that you captured the words, that are fluttering around in my brain like rabid bats, perfectly. i never thought that i would wish that connor would be a candidate for brain surgery, but we too feel like we are losing Connor in this battle, and the seizures are winning the war. It broke my heart to hear the numbers during his IEP...to hear that the stupid seizures have stolen him from us. I just want to kick seizures a**...just beat them to a bloody pulp. I hate that you are going through this too, but I'm glad that I'm not alone. Love ya!
April 11, 2009 at 8:00 AM
Post a Comment

Popular posts from this blog

I cried when I got the news

I felt like such a heel not going with Trevy for his first post hemi EEG. Yeeeeeees...Jonathan went with him. Yeeeeeees...he's just as good as me. But still! He's my baby! I was instead sitting on floor 6 east waiting for Neurology to get their boots here and help me sort out this medicine mess! Seriously it's like a bad joke...how many Neurologists does it take to write a bloody script? And fax prior authorizations? Cause Trevy's been back for hours now. And I'm STILL waiting! Anyway... Jonathan had just stepped out to meet the pizza delivery guy when Dr. EEG made his rounds. Of course I asked immediately if he had read the EEG. Of course he had. That's why he was there afterall. And I cried when he told me... that for the first time in almost two years. For the first time since this whole crazy mess began. my baby's EEG is completely normal! Side Note: It's super fun to sob in front of Japanese men and watch them squirm When I kept repeati...
22 comments
Read more

I sure hope...

they grow back curly! Saw the "unknown" flashing on the face of my cell phone and knew who it was. Who it had to be. Dr. Fellow. My eyes met Grams' and I nodded. Grams has a pool, see. For super hot days like today. We're also having a septic installed. Which meant no water or facilities at my place. But those weren't really the reasons I was there. Close to mom. The purple ringing thing in my hand was. Only I wasn't prepared for it to be ringing SO darn soon. Shortly after lunch instead of dinner! I swallowed. Took a deep breath. And clicked connect. Dr. Fellow has a very nice phone tone. Clear. Hint of compassion. If only a stitch of humor were added...it'd be heavenly. But there was no humor. Just business. He's very direct. I'm learning that about him. Which explains his short hello. Followed by immediately pushing into the news. Being that it was a unanimous consensus. The entire surgical committee feels Trevor is a good candidate. And then p...
27 comments
Read more

it's like being asked to the prom...

only MUCH MUCH bigger! I had noticed (yes...I stalk my site meter!) that a government ISP had logged onto Trevor's blog. Whoever it was had spent a good deal of time hanging out too. Followed a few minutes later by a government ISP...hailing from Washington. As in DC! My eyebrow raised. It was just kinda odd. Note-able odd. You know? Anyway...later that day (last week) I was folding laundry & thinking my crazy insane thoughts. Along these lines... I hope I'm not saying anything I shouldn't! Maybe I made somebody mad? Wait a minute! I live in America! I'm allowed to say anything I want! Aren't I???? A shout from the other room interrupted my thoughts before I had a chance to further mull. It was Jonathan. I had just received an email. **Side note...he's always doing that! Reading my emails! Sheesh!*** The said email was from a US Senator's aide! Asking if he could speak with me. Little ole' hardly has time to splash some make-up on ...
16 comments
Read more