I would like to introduce myself & Niki

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RBLWMN
New Member


Date Joined Nov 2004
Total Posts : 10
   Posted 11/1/2004 8:46 PM (GMT -7)   
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. 
 
 

SpaceyCase
Regular Member


Date Joined Oct 2004
Total Posts : 47
   Posted 11/2/2004 8:24 AM (GMT -7)   
Nice to meet you Jill! And Niki! :)
It is wonderful to hear that she is doing so great, and I hope to hear she continues to do even better and better! It is pretty amazing what modern science and medicine can offer.
Congratulations and welcome!

-Em

kayakmom
Veteran Member


Date Joined Jul 2003
Total Posts : 585
   Posted 11/2/2004 8:39 AM (GMT -7)   
HI Jill and NIki! SO good to see you hear! YOu have an amazing story to tell. I hope she keeps doing better each day!!

beckyboo
Regular Member


Date Joined Oct 2004
Total Posts : 36
   Posted 11/2/2004 8:54 AM (GMT -7)   
Hello Jill! I've read your posts in EFA, but this is the first time I've read about Niki's surgery. I'm glad that things went so well for her.

I'm sure you've already read about what I've been through with surgery. It's good to see others who can share.

Becky
I'm a normal person.  I just have seizures that can get in the way once in a while.


RBLWMN
New Member


Date Joined Nov 2004
Total Posts : 10
   Posted 11/2/2004 11:54 AM (GMT -7)   
Hey, Ginny & Becky! Good to see other old friends!

Talk to everybody soon!

Daisy9980
Veteran Member


Date Joined Sep 2004
Total Posts : 775
   Posted 11/2/2004 2:32 PM (GMT -7)   
Hi Jill. What a wonderful and inspiring story of your daughter. It really is remarkable. Nice to meet you Tracy

RBLWMN
New Member


Date Joined Nov 2004
Total Posts : 10
   Posted 11/3/2004 3:44 PM (GMT -7)   
Nice to meet you too Tracy!

goodwitch46
Regular Member


Date Joined Feb 2005
Total Posts : 241
   Posted 3/1/2005 12:29 AM (GMT -7)   

Jill-

I just read your incredible story and it gives me real inspiration.  Thank you so much for sharing your journey with us.  I too would love to hear about how things are going as any new developments occur!    Regards,        Glenda


complex partial seizures since 22
lamictal 200mg 2x/d
zonegran 150mg 3/d


jezzabelle
Regular Member


Date Joined Jan 2005
Total Posts : 56
   Posted 3/1/2005 5:38 PM (GMT -7)   
Jill and Niki, your story inspires me so much! I myself have epilepsy and in a few years, after I'm done with college, hope to help other children with epilepsy and seizure disorders. It's great to know that there are people out there that are truly affected in a great and powerful way! Hope she keeps doing great!
~Jessica
"Carry on.  It is not easy.  But it is what we have to do- only we do not have to do it alone."
 
First seizure: 1993
Officially diagnosed: 1999
Type: Simple Partial to Secondary Generalized Tonic-Clonic Seizures
Cause: Unkown, all tests are negative for abnormalities...
Meds: 750mg Keppra 2xday

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