In many ways, I laugh at my words now. That I’m used to it.
Much of it yes. I know it’s a necessity. The requirements made of a mother raising a child with special needs. I know these are the steps we have to take, that the EEGs are necessary, the movements of the stay overnight, the medication trials that will come and go. I know with J’s LKS / ESES, fighting and winning is liken to a shadow we only can hope to grip with our fingertips…if only for one moment…until it passes and the next medication is needed.
Numbers….
Neither C nor I were right in our guesses for how well Clobazam has been helping J fight his fight. We were both very, very wrong. Where J was 90% spike and wave activity (his brain’s attempt at seizing) during sleep in December 2010, with very little if any at wake, it is now 95% spike and wave activity during BOTH wake and sleep.
95% of J’s life, at this moment, is spent with his brain struggling to succeed during daily tasks while thwarting the spasms of electricity firing multiple times within a ten second interval….12 times (or so) during a single minute.
Now while part of me is panicked, fight or flight with no direction to go, no tangle enemy to wrap my hands around and squeeze with all my might, another part of me is numb. Because we’ve been here. Because I know we’ll be here again. Because I am thinking of all the other things that are now coming into play.
Blood results coming in, some still remaining…but waiting will give us a good picture of whether or not there’s yet another culprit that is the true cause of J’s rare disorder. Whether a disorder even more rare than LKS / ESES has been hiding out in J’s system…running amuck, rattling cages and dancing in the streets….
You can run, but you can’t hide.
((())) I hope you have answers soon.
KWombles- thank you. I hope we do too….hope it’s not super complicated too….don’t need much more of that, ya know…lol.
Hugs to you guys….
Hugs to you.
(((((((((((((((((((HUGS))))))))))))))))))))))))))
Hugs and prayers.
Thank you all!
Gina, what a brave little man you have! My heart aches for your family. I will continue to ask God to give you all strength.
Thanks Jenny. He is such an amazing joy!
[...] Amid the chaos, we’re also off to camp. Today, is our second day here – third counting check in and the wine and cheese social that was planned for the first day…that was new. [...]
[...] has been coming in droves. Despite the incredible numbers he’s bringing about with the electrical activity in his brain, positive changes show. He repeats [...]
[...] for J so that all blood needed for tests would be gathered while he was under general anesthesia for his EEG so he wouldn’t know the difference. (The kid gets prodded enough after all!) And you know [...]