Exhausted

Weslee gets so tired during the day from constant seizures that he often needs a nap. Voluntarily.  I snapped this pic just a bit ago. He put himself to bed early, right after evening meds.

This sweetie is losing hope. He is being bombarded with tiny seizures all day. We think they are simple partial seizures but he can't really describe them.

Weslee is getting very sad about the possibility of never feeling any better, and about being stuck in a safe place for the rest of time. 

I hate that. This. All of it.  I want my sweet, happy, loves-life kid back.

Purple Day for Epilepsy

Still wearing purple every day for epilepsy awareness. Have been since November 2013. Wow! Nearly 9 years.

What? Why?

Weslee's first brain surgery for seizures was in 2013. I had had only two short years to educate myself on all things epilepsy, including the "awareness" color (PURPLE), and the epilepsy "month (November, although there is a day here in March for epilepsy awareness also.)

When November 2013 rolled around, I made up my mind to wear purple every day so that people will stop and ask why I wear so much purple. I then explain my son's seizures started as an overabundance of "de ja vu" episodes, and when I would mention them to doctors, they would, nicely of course, tell me I'm off my rocker and don't borrow trouble.

It wasn't until Weslee's first TC (tonic clonic) happened in 2011, then the ER visit and neuro-doc visit, that a doctor finally told me in Weslee's case, they were probably a type of simple partial seizures. WHAT?!?!?!

I got angry. If I had known this, if I had been taken seriously, perhaps his first TC might not have come completely out of left field for me.

I condense this, of course, when asked why I wear so much purple. Doctors can let their god-complex get in the way of their humanity. I say...give us the info, the possibilities, and don't just dismiss a parent's concerns. At least google "too many dejavu episodes".