Skip to main content

just another reason to love him

 

I randomly forward Dr. Rockstar video clips.  You know, when I catch a really great one of Trevy right smack dab in the middle of a miracle moment! 

 

 

Confession:  Sometimes I feel a smidge guilty about emailing him.  Because.  Well.  What a beautiful gift Dr. Rockstar gives us by opening himself to our emails!  I never want to take advantage of that gift.  I cherish it too much.  Ya know.

 

 

But he is such an extraordinary part of Trevy’s miracle that I feel this irresistible need to share.  At the time of surgery (Trevy was 2 1/2) he was 100% non-verbal.  He had no comprehension and therefore no expression of language.  In part because the speech area of his brain was among the most damaged.  The internal EEG revealed what we already knew in our hearts but did not have the solid proof in our hands.  Trevy’s brain was being electrocuted more times in a day than there are seconds.  When Dr. Rockstar fought along side us (because like Sophie and others…Trevy’s was not an open-shut the MRI shows the lesion case) to move forward with a Left (subtotal) Hemsipherectomy…that changed.  Trevy’s EEG is far from normal today.  He still takes 3 anti-epilepsy medications daily.  He is still globally delayed.  But he is a Miracle Boy!  And when I catch my little boy whose voice we had no hope of ever hearing until a year and a half ago…singing his little heart out with his paaaaaa-buh (Trevy Speak: iPad).  That’s a miracle.  A MIRACLE!  And I need to share it with on of his most ferocious Miracle Workers!  If you’ve already watched, no pressure to do so again.  But if you haven’t…I think it may warm your heart! 

 

 

 

 

As might Dr. Rockstar’s response just a handful of minutes after I forwarded the clip to him…

 

 

“Wow, this is amazing!  I have forwarded to some of the team here, thanks for sharing!   Way to go, Trevy!”

 

 

Not that I needed any more reasons to be totally in love with him.  But did you just hear him call my son Trevy? 

 

 

:: smile sigh ::

 

 

Melt me…

 

 

…danielle   

Labels:

Comments

Searching for Grace said…
Thank you for sharing!! That totally just made my day!!! You guys are such an inspiration!!!
July 11, 2011 at 12:02 PM
Anonymous said…
We love Dr. Rockstar too! We keep him updated on our Trevor still after 12 years...and he always responds to us:) I think he loves to hear about all his miracle children....and luckily we love to share about them.

Hugs,
Sheila
July 11, 2011 at 2:02 PM
legomaster said…
It`s these people....the heartsy professionals...the human ones....who make this whole crazy journey just a smidgeon easier. Yay for Dr. Rockstar!!!

Double Yay for Sir Trevy....rockin`it on his own! He`s totally got the tune downpat and some words so incredibly clear...wuhoo!!! I LOVE IT!
July 11, 2011 at 3:46 PM
Debbie said…
That is hugely heart warming...what a happy little boy, with such an amazing, joyful spirit! A gift from God for sure...proof God is working among us!
July 12, 2011 at 10:15 AM
Debbie said…
That is hugely heart warming...what a happy little boy, with such an amazing, joyful spirit! A gift from God for sure...proof God is working among us!
July 12, 2011 at 10:15 AM
lisa said…
I adore that man and continue to be in awe of how giving of his time he is. I love this video of Trevor...especially because you can see he knows all the words, even if they aren't super clear. In my mind it just goes to show what the future holds. His clarity will just get better and better, we see it with Julia all the time.
July 13, 2011 at 8:52 AM
Jackson's Blog said…
Love, love, love this...made me smile so big! What is that program on the Ipad? I need it for Jack? ;)
July 14, 2011 at 7:44 PM
Post a Comment

Popular posts from this blog

I cried when I got the news

I felt like such a heel not going with Trevy for his first post hemi EEG. Yeeeeeees...Jonathan went with him. Yeeeeeees...he's just as good as me. But still! He's my baby! I was instead sitting on floor 6 east waiting for Neurology to get their boots here and help me sort out this medicine mess! Seriously it's like a bad joke...how many Neurologists does it take to write a bloody script? And fax prior authorizations? Cause Trevy's been back for hours now. And I'm STILL waiting! Anyway... Jonathan had just stepped out to meet the pizza delivery guy when Dr. EEG made his rounds. Of course I asked immediately if he had read the EEG. Of course he had. That's why he was there afterall. And I cried when he told me... that for the first time in almost two years. For the first time since this whole crazy mess began. my baby's EEG is completely normal! Side Note: It's super fun to sob in front of Japanese men and watch them squirm When I kept repeati...
22 comments
Read more

I sure hope...

they grow back curly! Saw the "unknown" flashing on the face of my cell phone and knew who it was. Who it had to be. Dr. Fellow. My eyes met Grams' and I nodded. Grams has a pool, see. For super hot days like today. We're also having a septic installed. Which meant no water or facilities at my place. But those weren't really the reasons I was there. Close to mom. The purple ringing thing in my hand was. Only I wasn't prepared for it to be ringing SO darn soon. Shortly after lunch instead of dinner! I swallowed. Took a deep breath. And clicked connect. Dr. Fellow has a very nice phone tone. Clear. Hint of compassion. If only a stitch of humor were added...it'd be heavenly. But there was no humor. Just business. He's very direct. I'm learning that about him. Which explains his short hello. Followed by immediately pushing into the news. Being that it was a unanimous consensus. The entire surgical committee feels Trevor is a good candidate. And then p...
27 comments
Read more

it's like being asked to the prom...

only MUCH MUCH bigger! I had noticed (yes...I stalk my site meter!) that a government ISP had logged onto Trevor's blog. Whoever it was had spent a good deal of time hanging out too. Followed a few minutes later by a government ISP...hailing from Washington. As in DC! My eyebrow raised. It was just kinda odd. Note-able odd. You know? Anyway...later that day (last week) I was folding laundry & thinking my crazy insane thoughts. Along these lines... I hope I'm not saying anything I shouldn't! Maybe I made somebody mad? Wait a minute! I live in America! I'm allowed to say anything I want! Aren't I???? A shout from the other room interrupted my thoughts before I had a chance to further mull. It was Jonathan. I had just received an email. **Side note...he's always doing that! Reading my emails! Sheesh!*** The said email was from a US Senator's aide! Asking if he could speak with me. Little ole' hardly has time to splash some make-up on ...
16 comments
Read more