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...
4 comments:
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. :)
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!
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
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!
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