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.

Wednesday, March 16, 2011

He is out of the OR. They said he is doing fine. We are waiting to see him.
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Frankie is in the OR now. He cried going in. I feel so bad for him.
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Tuesday, March 15, 2011

Vagal Nerve Stimulator

Alright, here we go again.  Frankie has been cleared for surgery.  Yes, we fought with Empire and got the approval.  Surgery will be tomorrow morning.  Frankie is the first case. 

Frankie is frightened and nervous.  I am worried about how he protrays all of these struggles in his mind. Worrying if he thinks "These crazy Americans - what are they doing to me?". Hoping he just feels secure that we would never hurt him.  Longing for the day that he understands all of this and knows truly how much he is loved.  

I have been worrying if this is the right thing to do and well the answer came last night.  He had yet another seizure. 

So here we go again.  Hoping for the Luck of the Irish this time!!!
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Friday, December 31, 2010

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Thursday, December 30, 2010

Almost over

Frankie is doing well. As expected he has to keep us on his toes. He had a seizure today. At first I was upset but, it was just not meant to be. The important thing is I have my Frankie and he is still Frankie. Looking around the Pediatric ICU for 3 weeks makes me realize how lucky I am. He will get the Vagus Nerve Stimulator in 2 months (day op). They also plan on changing medication a bit at our next visit. He has been an amazing little boy through this. We will figure this out.

Today we had a surprise visit from our North Carolina Family. They came bearing a very heart warming and generous present. We thank you all so very much for thinking of us. If only Aunt Ruby wouldn't cry!!!!!!! :).
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Wednesday, December 29, 2010

Frankie is done with surgeries. They couldn't remove any epileptic foci because he didn't have enough seizures. We feel horrible that this didn't work out. They think it could be due to the doses of steroids. In 2 months he will get the Vagus Nerve Stimulator. That is an Out Patient procedure. He is doing well. Hopefully, we will go home Friday. We are happy this is over for now.
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