Frankie's Story

Frankie was adopted at 5 1/2 years old. He is an amazing child. He was home for about 8 months when he had his first seizure. Then, he was diagnosed with Epilepsy. We went to many Dr's and tried many different medications. We discovered NYU. The Dr's and staff there have been amazing. Frankie was evaluated to see if he was a surgical candidate. Well, he is. They plan on doing an invasive EEG (EEG leads placed directly on his brain) and then weaning his meds to allow him to have seizures. They will then determine which areas are causing the seizures. If the area is a safe area to remove they will remove that epileptic area of his brain. They do not think in Frankie's case this will be a cure, but, they hope it will significantly reduce his seizures so he wont require so much medication. It is a 3 step surgery. He will go to the OR to have the leads placed on his brain then brought back to the Pediatric ICU and wait for seizures to occur. He will then go back to the OR for a resection (if it can be done), then they will replace the EEG leads. He will return to the Pediatric ICU again and wait to see if he has seizures. Step 3 he will then go back to the surgery for further resection, remove the leads, and close him up. Surgery is scheduled for 12/9/10 and we will probably be in the hospital for Christmas. The poor kid will be put through a lot. We trust these Doctors and staff so we hope this is the right thing to do.

Saturday, September 25, 2010

Meeting the Neurosurgeon

On 9/21/2010 we met the Neurosurgeon.  Dr. Weiner already reviewed Frankie's file with 'The Panel" at NYU and has already determined him as a candidate for surgery.  This is our chance to meet him.  He was wonderful, knowledgeable, honest, and reassuring.  Surgery is scheduled for 12/9/2010.  Frankie will most likely be in the hospital for Christmas but, we really don't want to put the surgery off too much longer.  Frankie has had a lot of seizure activity recently including a prolonged 45 minute long seizure that resulted in a visit to the ER.  Christmas will just have to be celebrated when we get home and I am sure Santa will find his way into Frankie's hospital room.  We are hoping for a Christmas Miracle and all of our Christmas Wishes to come true. 

We are also very lucky to have been able to get a free apartment for 3 weeks from the FACES organization (Finding a Cure for Epilepsy).  That relieved alot of stress of wondering where Frank will sleep while I stay at the hospital.  (Ok 3 weeks is a long time maybe I will take a few hours off!!).  The apartment is aparently very close to the hospital too!
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