July 23, 2010 this photo was taken… at least that’s what the computer says. Look at how little I was. I was 7 when this picture was taken. I think this was my 2nd or 3rd 24 hour EEG at The Children’s Hospital. We had no idea how many more times we would be doing this.
After 5 years of lightning running through my brain, doctors finally heard my parents… I don’t know why it took so long, I heard Mom and Dad perfectly clear. I wasn’t sleeping for strings of days and nights; I was beyond exhausted, sometimes no one could even understand me and trying to keep myself calm or trying to learn anything was impossible. It made no sense that doctors blamed my cerebral palsy or my autism. I’m glad Mom and Dad kept fighting.
So, in April 2009, I was diagnosed with LKS / ESES.
In 2010 that photo (above) was taken.
Later in 2012 (October 26th) my late great grandfather’s birthday, I was declared seizure free, but on anti-seizure medications. Next they had to take those away and see if the lightning stayed away.
As soon as 2013 started, Mom and Dad started taking me off of my meds.
Then today, March 5, 2013, Dr. K came in with a big smile and told Mom that I’m officially seizure free. I will have no more EEGs. I will only need an office visit to see my docs 9 months from now. My ESES is gone!
While my brain functions slower than it should because of all that lightning, I won’t get worse. I won’t get faster, but I won’t get slower. My right side doesn’t look like it will give me problems. My head is fixed, and now I’m going to work on doing things as best I can and trying to help make the best future for me as I can.
I plan on living each day with a smile. I have no problems finding something funny every day. I’m going to laugh. I’m going to explore because I love adventures. I’m going to enjoy the struggles that makes me stronger and better in the long run… because the struggles I have today are very different than what I had last year. I can live with that.
I will learn something new every week or every day and I hope you’ll still let me share them with you too.