It's frustrating. It's even more frustrating when I take her for an EEG. I can't help but wince every time I see a storm of electrical activity. They're surprisingly (and frighteningly) frequent, even if we don't see anything on the outside.
On the bright side, we are seeing improvements (on the outside, at least) thanks to adjustments to her ketogenic diet. She had a rough couple of days, but we think we know why, and by rough, I mean "Now with 99.99% less roughness than mid-October!!!" I have to admit though, after a few seizure-free days, it felt exceptionally craptacular to see clusters of seizures like that. It's all about incremental improvements right now, though, and we're incrementally improving in the right direction, at least.
Back to what it's like to have seizures; I still don't have a clue. But that didn't stop me from writing a poem about it on one of my favouritest blogs ever, Every Photo Tells a Story. I don't know what it was about today's image prompt, but I felt compelled to write a poem in dedication to Jade and other children who are dealing with epilepsy. It's called "Looking out the Window".
(The lines and squiggles are supposed to represent an EEG.)
~~~~~~~^^^^Colours and lightening^^^^^~~~
And feelings of~~~~~^^^^^
~~^^^~~^^^~~^~^^^~^^^^~~And noises and static~~~^^^~^~^~^~^~^~~^~^~^~~~
- My focus erratic -
Blazes of white\/\/\/\/\^^^^^/\/\/\/^^~~
Closing the window, it's trapped in my brain/\/\/\/
\/\/\^^And I am trapped, too/\/\/\/\/\/^^\/\/\/
\/^^^^^^^'Till the storm starts to wane^^^^^^^^^^~~
~^^^~~~When the colours and lights^^~~^~^~^~^^^~~~
~~~Then the window will open~~~
~~~And I can go play~~~~~~~~~~~