Wednesday, November 19, 2008

Vigabatrin pending

It's official.


Dr. Neuro will be faxing the script to MastersMarketing sometime today. Or so she told me during our phone convo last night.


We chose Masters because they're the least expensive. Although to be honest...I was beginning to have my doubts. Because the user friendly seemed to be missing!


I finally decided to call the toll-free number...where I was prompted to leave a message. I did so last Friday. And frankly...by Sunday I was annoyed. Not that there wasn't a little part of me that thought leaving a message would never amount to anything anyway. But still...


My son's having too many seizures every day...and I just want to move forward already!


And then Julie emailed! (when you have three small children email works WAY better! And I'm SO glad I thought to leave it! That's my tip - always leave an email addy!)

And since then it's been a breeze. She'll be handling Trevor's case personally...and we've been in constant communication! Which is really nice...cause I like hand holding!


::grin::


And so...soon it begins...



(Okay so...there is a part of me hanging a lot of hopes on this drug. But there's another part trying to be realistic...I get that from my mom. She's the set the bar low so you aren't devastated type. This month is going to be very heavy on the heart. If it works...we're partying. If it fails...the brain surgery option becomes larger than makes me comfortable. Which btw we head back to Boston Children's for the 3T MRI do-over next Tuesday.)

9 comments:

~Mama Skates~ said...

oh no, another trip to boston - hope it goes waaaaaaay smoother this time!

and i hope this is the miracle drug for trevy! smothering u guys in prayer!!!

xoxox,
sharon

JSmith5780 said...

Julie is great. She will take care of you! Another tip, I always ask for an email the day it's shipped so I can be on the lookout! Julie has always complied. Oh, and ANOTHER tip. Make sure whatever CC you use, you notify them of the out of US charge so it doesn't get blocked! That happened to me a couple times :)

Shanna Grimes said...

Praying this will be the miracle drug for Trevy. Call me if you need. I can always call ya back on your house line. Gotta love Vonage ;)

Adesta said...

Praying that his is the med that works miracles for Trevy and gives you and J some peace of mind finally. You all deserve it. And what better Christmas gift could you ever receive?!

KC's Mama said...

Good Luck in Boston. I am praying hard that the Vib. is the magic bullet for Trevor. I'm sure you are on pins and needles right now waiting to find out if it's going to help. I'll be thinking about you guys!

Karen

Mmmmaaahvelous said...

Oh my goodness! So much on the heart! Here's prayers for the med having the desired effect!
Handholding is a must! I'm all for hand holding.
Eeeee....another trip for the MRI. Please let them have all the pediatric anesthetist staff on schedule and use the mask first! We'll be holding hands and prayers for you here.
Hugs,
M

Holli said...

Wow, a mirror image of my thoughts!

I've been fooling myself about thinking I was being realistic, because once we started it, I realized how much of my hopes were riding on this one. It's impossible not to get wrapped up in all the success stories. I didn't do this with the Zonegran or the Keppra...I guess because they're not the "frontliners"...

Hang in there...we can do this together!

HOlli

baby trevor's mommy said...

I've been a lazy bum lately...and not responding to comments! Sorry girls! Thanks for the support...I hate that I'm such a 'fraidy cat. But I am. Actually...I was rocking Trevy to sleep & the thought ocurred to me that last Thanksgiving we gave Trev his first injection of ACTH. And we had such success that I was mentally trying to talk myself into waiting for the first dose of Vig until this Thanksgiving. I'm such a psycho! I'll keep you guys posted...not that you doubted! *smile*

...danielle

Monica, James, Connor McGuire said...

Wow this post really struck me in the core. It's amazing how much hope and prayer we invest in these meds to only be often let down. The Topamax isn't cutting it for Connor either. This has been a really sad time for me. Just wondering if we'll ever find our "miracle". I too set the bar low so as to not be disappointed..in meds that is. As far as the docs...that bar is set super high! I so want this to be your "miracle". much love, monica