>> Wednesday, December 2, 2015
We discontinued the Vyvanse. He was on it for 2 months and the last month he wasn't very happy. He was extremely quiet and not very engaged. 2 days off it and he is back to following direction, humming, kissing and falling asleep in my arms. We will see what happens as the week progresses but if we can keep him at this baseline, we will stay stable with changes until I can get him into a Smarty McSmarterson to help with the folate thing and the KBG.
I awoke this morning, after 4 hours of sleep, to Ava's feet on my throat and began to think about all that has happened the last 10 years and equate it to my current position at the Epilepsy Association of Utah and the KBG Foundation. Then I thought: how am I NOT considered an expert in the personal management of epilepsy?
( I have to throw this in there: Glenn's Dad used to love to ask people if they knew the definition of an expert. They would flounder a bit and he would say: an ex is a has-been and spurt is a drip under pressure. I always think of that when I use the term expert...I use it with respect and very carefully so as not incur his posthumous mockery.)
So I went through the numbers, as she was snoring and kicking her feet at my head, and they are pretty interesting.
|7 month old Bug|
When I attend meetings now, they are not multi-million dollar system integration meetings. I don't have a 7 figure budget to work with, and I am not being paid 6 figures. I am, usually, one of the ONLY unpaid people in the room. My motivation is true and focused: I am an Epilepsy Advocate. An unpaid but very professional person with no ego, no kingdom to build except that which raises awareness and services for people with epilepsy.
Aside from my business experience, and being a right pain in the ass at getting care for my son, what makes me an expert?
Let's use averages and tally a few things:
Bug has been seizing for over 10 years.
3,689 days to be exact.
In that time he has gone 14 weeks without seizing (not all at once, his first stretch was 60 days until his third seizure and since then he has not gone more than 3 weeks)
So let's take 98 days off that number.
He has had up to 20 definable seizures in one day and as little as 1. Let's be cautious and say he averages 2 clinical seizures a day.
7,182 seizures (at least)
I have personally witnessed and comforted him at least 7,182 times while he seizes. Varying times and length. Some with cognitive decline and others with a smile as soon as he was done.
7,182 seizures AT LEAST
|At Disney VOD|
No, I am not getting paid to be there...and it's a good thing...you couldn't afford me.