9.04.2008

what next...

I've been sitting here typing & erasing & re-typing for the past 20 minutes.




It's like I just can't focus enough to spit it out already.




Maybe now's a good time to try & tame my OCD edit compulsion...




Firstly...thank you to all who have cyber-and-beyond loved on us. I have received a multitude of emails...calls...blog & even YouTube comments!




It might be weird...but I laughed at how many times I heard "the original clip was kinda sketchy"...




I smiled because you all stood in support of me...of Trevy...even when you thought Trevy's mommy was being *sketchy*!




I cried when over & over I read from those of you who felt the second clips left little room for doubt. Not because my heart isn't already there. And not because I didn't want you to say it. But just because....you know...




Dr. Neuro is back in office today. Which brings my heart great relief. She briefly reviewed his EEG from the other day...and called to tell me there has been a definite increase in activity while Trevy's sleeping. After the neuro team reviewed his EEG...they all felt we need an extended study before moving forward with treatment. Although...if I fully understand what was said...they are all confident this is seizure activity. Just not confident which medication to choose...ACTH...Vigabatrin...or possibly even trying high dose B-6. And so it's been arraigned for us to be admitted tomorrow for an over-night in-patient VEEG. We need to capture some of his movements on camera & electrodes. My poor little monkey is not going to like this...not one bit...


7 comments:

Anonymous said...

I'm glad to hear they are getting you in quickly and seem to be taking the right steps. Sorry to hear you have to endure a VEEG though. It always seems impossible, but we get through the VEEGs somehow. I'll be thinking of you:-)

~Mama Skates~ said...

my prayers are with u guys, as always....good luck tomorrow!

BIG hugs & kisses,
sharon

Molli Salzman said...

I am glad you are getting in to get a video EEG done. Are you still waiting on the 3 day EEG results? How long does that usually take?

Take care,
Molli

baby trevor's mommy said...

Thanks everybody!

I just got the results of the 3 day today. It fell through the cracks while Dr. Neuro was on vacation. Evidently...the 3 day reads the same as the BEAM. But Tuesday's shows increased activity...mostly during sleep. Our neuro is supposed to call me later after she has a chance to look at the reports in more detail. I hate the waiting...

...danielle

Monica, James, Connor McGuire said...

Bless your heart (can't you just tell i'm from the South??? :) )..just know we are in this battle with you. I'm so glad your neuro got back into town...please tell her she's not allowed to leave town ever again! Good luck with the VEEG. I know Trevy hates them (&i know it's no walk in the park for Mom & Dad either!) Atleast it will give you some definite answers. Praying for lots of strength tomorrow & the coming days!

Kari and Jayden said...

Danielle,
I just read about Trevor on the Yahoo IS group. I just wanted to tell you that I'm sorry and will be praying for Trevor to get rid of them quickly. I often check this blog for inspiration and to get hope that one day Jayden will do what Trevor can do. Jayden and I will be thinking about you all.
Kari Oulahyane

Mmmmaaahvelous said...

No he won't like this. Being confined to a crib with an EEG? so that they can witness the seizure activity. It's so hard to keep them entertained. Poor fella!
We're doing B6 right now. There's a little guy that our Dr. Neuro treats who has responded well to B6. Anything is worth a try right? Especially if it isn't harmful.
Thinking of you, your family and Trevy.
M