Monday, March 25, 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.