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Brain Surgery



A video I developed for a friend who is a professor of psychology gives a good nutshell of our journey:


My Recommended Resources...
  • Graphic & Gruesome Pictures of Trevy's brain tissue - because I believe in full disclosure 
  • Understanding Grid Placement - children who do not have a clear focus often will need an invasive EEG or Grids.  This a procedure where the skull is opened and a plastic sheet of electrodes are placed directly on the brain thus ensuring the most accurate of data.  This is a very informative and graphic video clip detailing the procedure. 
  • A Medical Miracle - another little boy's success story with the same Hope Team as Trevy   
  • A Guide to Brain Anatomy, Function and Symptoms -an easy to digest breakdown of the brain 
  • The Brain that Changes Itself  
  • Harry Chugani (or Dr. Rockstar) - while he is not the only neurologist, he is the most aggressive when it comes to rescuing babies from Infantile Spasms.  He continues to promote research and extraordinary measures of intervention for children suffering from chronic, catastrophic epilepsy.  Our family will always have a deep connection with him for the part he played in advocating surgery for Trevor.     


Our Hemi Story...


A Hemispherectomy - the removal of an entire hemisphere of the brain - is the most radical brain surgery in neuro science today.

October 6th, 2009 Trevor began the first stage (intercranial EEG) of this radical intervention to rescue him from his Seizure Monster - Infantile Spasms.  For three days he remained mostly sedated with the grids collecting essential data from their placement directly on his brain.  On October 9th, 2009, Trevor underwent the second phase of his Seizure Monster Slaying.  A 10 hour surgery which brought our 2 year old so close to death that it required two transfusions just to keep him alive on the table. I am linking in chronological order some of the posts and pictures which I journaled while living through our nightmare miracle.  For the extended blow by blow click here and you can scroll through all posts tagged brain surgery.






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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...
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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...
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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 ...
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