A video I developed for a friend who is a professor of psychology gives a good nutshell of our journey:
- Brain Parents - an online support community
- The Brain Recovery Project
- The Hemispherectomy Foundation
- Dr. Gary Mathern's What Can You Do with Half a Brain seminar is a must watch for parents considering surgical intervention:
- 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.
- The Day Before the Storm (10.05.09)
- It Would Be a Lie (10.06 - Trevy is in surgery having his grids placed)
- Kinda Like Having a Baby (10.06 - phase one is over and Trevy is out of grid surgery)
- Pediatric ICU (10.06 - a picture marathon of Trevy in the PICU)
- A Room of Our Own (10.07 - Trevy spent one night in the PICU and was then moved to the EEG monitoring wing)
- All Puffed Up (10.08 - a picture marathon)
- Didn't Wanna Hear That (10.08 - we learn the extent of the upcoming surgery)
- Single (10.09)
- We Haven't Seen Him Yet (10.09 - after 10 hours in the OR the surgeon was finally closing and we were almost ready to see our baby again!)
- Hemi Day (October 9th - a picture marathon)
- The Morning After (10.10)
- Take Two PICU (10.11 - a picture marathon)
- Uneventful (10.12)
- Our First Cuddle (10.13 - graphicly emotionaly beautiful)
- Because Grams is Complaining (10.14)
- Why We Didn't Shave the Curls (10.16)
- I Knew Better (10.16 - Trevy had a rough recovery and we kept being teased with the potential of heading home)
- Maybe I'm Right (10.18)