Skip to main content

the package

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!
Labels:

Comments

Andi said…
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!
April 17, 2009 at 12:20 PM
Adesta said…
Hoping you get the answer you want D!!! For you, J, Toby, Bri, and most of all for Trevy.

Love the new look!!!
April 17, 2009 at 1:26 PM
Holli said…
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!! ;)
April 17, 2009 at 1:44 PM
Monica~ James~ Connor said…
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.
April 17, 2009 at 8:48 PM
Shanna Grimes said…
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.
April 19, 2009 at 6:19 AM
Post a Comment

Popular posts from this blog

a different kind of muscle — guardianship process

  To all the parents who have walked through the guardianship process — my heart is with you. Our paperwork is prepped and ready to submit this week. He turns 18 on April 3rd. I've been thinking about this for a year now, but only just mustered the energy to move forward — the loom of his birthday my propellant. Overwhelm has paralyzing effect. I'm struggling to recall the last time I didn't feel overwhelmed. It struck me how all these years of walking through disability beside Trevor should have made me stronger and yet... I suppose it's a different kind of muscle being developed.
1 comment
Read more

No, I don’t know him personally

  I’ve had several emails today asking if I know Mike W. of Marissa’s Bunny personally.    Trevy’s blog was linked on her site.  Although it’s not now.     I’ve posted here and there at his request.  Because…well…we’re a community.  Us IS families.  And Marissa is wicked cute.  Her daddy has a way with words.  Also who wouldn’t want the world to know about an iPad give-away?    But aside from that…I know about as much as you do.    We’ve never met in person.    Our only communication has been cyber.    I’m a ginormous sap and as such would love to believe that all is right.  That the sweet, beautiful families who were promised iPads will be getting them tonight.  Tomorrow at the latest.  That no one has been lied to.  That the personal thank you for your generosity email I sent him on behalf of other IS families I’ve grown to love and was thrilled to learn w...
23 comments
Read more

the great answer hunt in the land of Infantile Spasms

If I've said it once... I've thought it a million times more. How it's like the more I research...and discover...about IS. The more blurry everything becomes. For every answer found. A dozen questions are unearthed. Remember our whole ARX saga ? Yeah...that threw me for a loop. So much so...that I never went on to post the end of the story. Thus far... See...the unbelievable in the world of genes happened. Because this is IS-ville after all. After Dr. Genes sampled Trevy's ARX gene on a whim...a whim which revealed an unkown (meaning the first time this specific change was found) mild mutation...she proceeded to send Toby's blood off to mad scientist central. With assurances that this was totally unnecessary . She was convinced that Trevor's ARX mutation was the underlying cause of his Infantile Spasms. And that Typical Toby...would prove to be just that. Typical...at least in all areas mutate-able. And yet...Toby's ARX blood sample revealed THE SAME MIL...
14 comments
Read more