Update

I had a few posts written out in my head during Nick’s 48-hr EEG, but they never made it onto the screen. Mostly because the EEG was absolutely grueling. Nick was frightened of the wires, uncomfortable and barely slept the whole time. Which means I walked around trying the best I could to comfort him, not lose my mind with worry, and pretend that everything was going to be OK.

And everything is OK.

Much to our relief, the neurologist determined that there were no seizures during the 48-hour test and that there was no sign of previous seizures. Since we observed a few of his “staring moments” during the EEG, we trust that he didn’t just go without having one during that time.

So what is going on? Well, we don’t really know the answer to that. The neurologist is now calling his staring  moments “spells.” We go back in 2 months and see what we have noticed, what his teachers have noticed and see if there is anything else to be done.

We are so relieved. It has taken a few days to let the good news fully sink in. (I have to give huge props to our neuro who let Nick come in during a week the doc wasn’t seeing patients to study for an exam. And he read the results right away instead of giving us results at our next appointment which wasn’t scheduled for another 2 weeks.)

History repeats itself once again, as I stayed strong  during the crisis and then promptly fall apart once it was over. I wouldn’t say I have totally fallen apart, but most people have two adrenal glands to handle the flight or fight response. I have one very overworked, underpaid adrenal that is pretty pissed off at me right about now. Sleep helps, so I have been sleeping as much as I can, but the aches I had before starting steroids are back full force, hopefully just temporarily.

Nick does have a few sores on his forehead from the wires, which are slow to heal. And we are still trying to peel the residue from the tape off his face, when he will let us. But I just listened to him sing himself to sleep, which does more to fix my aching body than any steroid could ever do.