Monday, March 25, 2013

Purple Day 2013

Hey, we are still alive!  Still surviving.  The roller coaster has turned into something like Montezuma's Revenge at Knotts Berry Farms (do they even still have that?).  You know the one that goes upside down and backwards at the same time?  Not really even up and down, just face contorting immediate g-force, making you want to throw up.  Yet, you are having a great time on the ride :)

We went back to Miami.  I will catch up on that later.  We have changed, added or dropped meds more times than I would like to count in the last 4 months.  Still no significant change in seizure control.  Cole continues to seize every day.  The drama in December, is just commonplace around here.  Four or five major generalized tonic clonics, that last about 6 minutes a piece, during one day is the new normal.  We consider it a good day if there is only one big daytime seizure that is over a minute.  Night time has become intense, with around 9 big seizures that last about 45-90 seconds is average.  The screaming, look of pure terror and having your baby be inconsolable throughout the night is just torture some times.  Yet, Cole keeps finding reasons to smile and laugh every day, so we do too.

Epilepsy is a condition full of unknowns.  Dravet Syndrome has even more unknowns.  Please wear purple tomorrow, March 26 to raise epilepsy awareness.  It is underfunded and people are not educated about it.  There are still a lot of countries where people who have epilepsy are truly believed to be possessed by evil spirits and are shut out from society.  More people have epilepsy than Breast Cancer, Parkinsons and Cerebral Palsy combined!  Wear purple and talk about it.  Maybe together we can find a cure.

I would love to have your pictures.  Send them to me through e-mail, Facebook or text them to me.  Last year we had so much love and support.  Cole needs it even more this year.  Can you believe how much he has grown since last year?  Look at my hair!  Wow, it is amazing what a year can do.  To read the story about Purple Day and to see the other times I have written about it, go here.


  1. I can't imagine your "normal" Niki!
    You are amazing!
    Sending prayers your way :)

  2. Just posted a pick of B rockin' his purple pride today. :) (As you saw, I was wearing purple too... accented with smushed banana.) I hope today got better for you... or at least didn't get worse. Sometimes that's all we can hope for, right? ;) Love you and am thinking about you.


Photos by Capture Me Candid