I thought I would take a break from the tedious philosophical posts and pontificating, to let everyone and anyone, know how Segev is doing.
He seems more capable of reacting these last two months. He is less in a constant state of stupor which may be attributable to the fact that I now divide his medications into three doses instead of two. He is more vocal but this is typically followed by an exacerbation of his bronchiectasis, so he is sick more often as well. His seizures are not stable, some days he has just under a hundred, some days way over. Recently he had a period of more severe seizures as well as medium sized ones coming in clusters, which is unusual for Segev. This has receded over the last two weeks without apparent reason.
His intestines are always a problem: he actually had a few months that were dreamy, without pain for the first time ever, which went into two and a half months of diarrhea which has transformed in the last two weeks into Segev's usual extreme discomfort/screaming from irregular peristalsis. Vomiting is a continual threat which often responds to extracting copious amounts of air from his g-tube, multiple times each day. In the last two weeks he has vomited more than in the last year. His sleeping pattern is less regular as well.
I believe that he has started seeing, to some degree, after twelve years of not reacting to movement or objects in his field of vision. This is truly astounding.
Right now I am slowly finishing his evening bolus of the ketogenic diet, each meal prepared from scratch by me and he is lying asleep, fidgeting, occasionally waking with a seizure and then instantly going back to sleep. I've had to suction much less today, perhaps only fifteen times. It looks like the pendulum is swinging and I'll just catch that momentum and think again about the dozens of parents like me that I know about, who may have and especially those that may not have, a few quiet moments to feel the air fill our chests and let us regain our calm and our strength.