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.

Tuesday, December 14, 2010

Frankieisms

"Ma put my toys in the bag. My socks too! Let's crack the window and start walking"

"Ma I don't have "Epiplepsy" and seizures". - Well that would be why - huh!

We are still waiting for seizures but keep getting reassured that it takes most kids days to have them. I say general anesthesia once a month and no more meds everyday! :)
Sent from my Verizon Wireless BlackBerry

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2 comments:

  1. TeresaDecember 14, 2010 at 7:59 PM

    I bet he wants to make a run for it, poor fella!! Prayers continue for all of you. It feels weird hoping Frankie has a seizure, but I hope he does soon. <>

    ReplyDelete
  2. AnonymousDecember 15, 2010 at 6:18 AM

    I agree with Teresa...all this time wishing they would stop...I am having a hard time hoping for one. :)

    Sending hugs to all!

    ReplyDelete

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