I made a crisis call to Dr. Neuro today. Lots of seizure drama. Don't ask.
Anyway...she happened to mention that she'd sent the package to Dr. Rockstar. Sometime last week.
So when I got home I emailed him this...
Dr. Rockstar...
Evidently there was a miscommunication...
I asked Trevor's neurologist to email you the PET scan. She instead send a cd/package...sometime last week.
We're in week three of Banzel...and if it's making any difference at all I'd say his seizures are worse. We're still at a low dose...but it's hard to imagine it'll get better.
It would mean the world if you could look at his PET. Our local neuro says the abnormalities...while unimpressive to her...are limited to his left hemi.
...danielle
Literally minutes later he responded me this...
I have not seen the CD. Nurse: could you track it down?
And I have to say. It's this weird sense of comfort. Fear. Hope. Angst. Emotion explosion all tingling through me.
And honestly...I'm not even sure what I want him to see. Or say. Because the yes...is as freaking scarey as the no!
6 comments:
Too true...
When we got the "no", I hadn't quite realized how much I was hoping for a "yes". The MRI results weren't much better. Either way, hoping for the best for you guys!
Hoping you get the answer you want D!!! For you, J, Toby, Bri, and most of all for Trevy.
Love the new look!!!
Isn't it freaky how quickly he responds?? I think that makes it all the more anticipating...cause you know you could really hear back ANY minute!!
Oh, I'm crossing my fingers that you'll hear back soon...I know the wait is making you nuts!!
Let us know!
Holli
PS -Like your facelift too!! ;)
How exciting & scary all at the same time. Does having a child with IS make you bipolar?? j/k!
I'm still working on my e-mail to him. Trying to make almost 2 and a half years brief. Think he would be ok with: MY CHILD'S SEIZURES SUCK...FIX HIM!!!!? oh brother...let me get connor back to school so i'll have more time to work on it, and get over all of the sappy emotions of him turning 3.
Hoping for a quick response for now. I'm with you, thinking about what the response will actually say is too much. Hang in there D and let us know. I can't imagine what it must be like for you. It's like being on pins and needles! Praying you won't have to wait too long.
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