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Lots of testing...and med swapping going on in the life of Trevy during the next coupla weeks...


March 24th...PET scan. Which...Dr. Chugani has agreed to look over for us as well!


March 30-31st...in-patient VEEG. Dr. Genes wants to draw some blood to run an SCN1A test at the same time. Annnnnnd...we're set to say good riddance to Vigabatrin...and begin trialing Banzel.


April 3rd...Trevy's 2nd birthday! There may be a zoo trip involved?


April 17th...Trevy's case will be presented to the surgical team. Depending on the data gathered we'll then be referred to Boston Children's. Where Dr. Neuro has assured me if Trevy is a surgical candidate...we'll be headed. I'm feeling MUCH more comfortable wrapping my mind around that!
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Anonymous said…
It is so important to have confidence in your medical providers. Hoping you can have the ones that give you confidence.

Barbara
March 20, 2009 at 6:12 AM
JSmith5780 said…
So MUCH all at once!!

Ask about the (ELP4 gene). I know it's mostly for Rolandic Epilepsy, but perhaps it'll tell them something. And if they are already drawing blood they might as well do as much testing as possible!

I'm glad they'd let Boston do the surgery. Yes Chugani is fabulous but being near home and family would be so much easier on you all if surgery became the option.

Hugs to you all! I hope I don't forget Trevy's b-day while I'm away. It's on my iPod which will be with me!
March 20, 2009 at 7:30 AM
Adesta said…
Wow...that's definitely alot to have on your plate all at once. Reminds me of all the birthday's/anniversary's that are coming up in the next month.....this time of the year rivals financially with Christmas in my family!!! *grins* and we are just adding to it! lol

I didn't realize Trevy's birthday was in April...mine too! :)
March 20, 2009 at 5:28 PM
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