Wednesday, September 17, 2008

A one seizure day???

Oh baby person...Madie had a GREAT day today... A sweet little one allll morning! she had ONE seizure at 12:30 almost on the dot! just one!! now when she has these good days I call them honeymoon days and I fully expect a bad day to come soon...meaning a day of being zapped by seizures feeling as if alll the happy happy joy joy she had will be erased from her mind....any new strength she has gained will go back to square one...Its almost always feels that way! BUT BUT she has never had a ONE seizure day!?? could that be right? dunno....I sure as heck watched her...
Could her B6 really be working? but why would it take a whole 2 weeks to show anything? Wouldnt you just see results within a day or two?? I wonder sometimes if her seizures are tapering off? A MIRACLE! yeah... The docs say they wanted to try Lemictal on her... I am really not sure about that drug.. i have only read a small amount of info on it...I will be dammed if I let them add it as a 3rd drug for sure! as 2 is already enough! How long can you be on Clonopin anyhoo?...I heard that you cannot be on that one long...?
Anyhoo Madison had a sparkly day..>I kick myself for not taking more pictures I feel like I have to bottle those good days...
There was a time where I was afraid I would loose her...not in the death sense but in the mental sense. that she would regress into this no mans land person who just stared into space and said no words and made no nosies...I feared it so much when she was at her peak of seizures..
When I can get a giggle out of her or a smile and hear her making noises I know I still got her :)
Today I tackled my yard...what mess! I was trying to plant some bulbs to grow in...and I have never seen such enormous earth worms in my life! and spider nests that were so gross! I was on my knees digging a small hole when I hear a" russle russle "in the bushes and literally jump to my feet..gasping and looking around for whatever it was...most likely a! I even uncovered some maggots and some centeeeepeede bugs! Ahhhh!! I freaked out! I quickly mulched over my mess and I was outta there! running back inside like things were chasing me! lol. ON that note I guess that is allll i wll continue to keep everyone posted....How is lil Austin doing in Texas?? Post mama post...that storm is alll over the papers in CT....what a mess...the pics of austin taking his stand are hilarious! I love em!!
Hope all is well with everyone :)
Bye now!


JSmith5780 said...

How fab to hear it was a one seizure day. I hope it's a trend and not a fluke. I'll be thinking good thoughts.

Klonopin is not a good long term drug, mostly because it's VERY addicting. I would agree, the less time the better. BUT be prepared for withdrawal seizures.

You're in CT? I am in NY (outside Albany).


Holli said...

OH! I enjoyed those pics of Madie in this post! She looked soooo happy! Loved 'em!

Yep, it's 4:30pm here...guess no call back from the neuro til Mon...figures..well, she IS in Houston, I'm sure they're pretty swamped right about now. I'm thinking she should increase the Zonegran rather than the Keppra. There's got to be room to go up...he's nearly 27 lbs!! I've heard of babies weighing less than that on more!

I'll be checking back in...oh, it's sooo nice to be back in MY home!!