Hello, my name is Jill. I met Rocking over at another site & she invited me to come meet some of her new friends! I'm looking forward to getting to know you all! Jen, asked me to tell ya'll about my Niki. Well, where to start......
Niki was a very active very bright 14 month old when she was stricken with encephalitis. She went into a 6 hour seizure that first day. The doctors here at Vanderbilt told us she would never survive. We should call our families. I can't tell you how shocked we were! But, our Niki showed them! She is so strong. It took some time but she relearned everything. She is so fun. She is 9 chronologically but she is about 5 developmentally. She is our perpetual toddler, she is into EVERYTHING!
After 8 years of numerous drugs. The nuero decided to send us to Atlanta in August to see if Niki was a surgical candidate. It turns out a lot of kids with post enceph. aren't candidates because of how the infection attacks the brain. It hits the surface of the brain hard. That is why they have so many sz. types. It is ussually all over the brain. We really didn't expect to have surgery turn out to be an option.
I got a phone call one day at the end of Sept. It was the epileptologist from Atlanta. He wanted to do surgery, SOON. I was horrified. I couldn't accept it. I was so scared. I just hadn't really prepared for it. I had accepted the fact that Niki was going to have sz for the rest of her life. We just needed to deal with it & go on w/life. But, now we had an option. A terrifying one but an option none the less.
So we went back to Atlanta for a WADA test and a temporal lobe resection. She had the WADA on Thursday & went in for surgery October 15th at 10 am. One of the epi's came out after about 2 hours to tell us the had found Niki's "hot spot". It was her hippoccampus. Originally that wasn't going to be removed but due to the mapping during surgery they felt confident it had to be removed.
Niki did fantastic after surgery & has everyday since. I have been so shocked to see how fast she is recovering. A lot of it has to do with the fact she isn't having numerous seizures everyday. Her memory has improved her speech is much better. I could go on & on. She has only had 3 simple partials & NO COMPLEX PARTIALS since the day after surgery!!!!!!! PRAISE GOD!!!!!!!!!
Sorry, this is so long. Please, if anyone has questions let me know. I am so excited this happened for her. She has a chance at a life we never imagined for her after she got sick.