Our Real Life Superman

I think one of the biggest things I was scared about when I heard Greyson had tay-sachs was the complications that come from this (besides it being fatal). The feeding tube, the regressions, the aspiration, the hypotonia, and the big one... seizures.

We noticed Greyson having some fluttering in his eyes when we would lay him down or pick him up shortly after the diagnosis. Our primary pediatrician thought maybe it was him trying to get his bearings. The change in elevation.. like when we may stand up too fast off the floor or when we get out of bed and we get a little dizzy. So we brushed it off. He already had an EEG down in Milwaukee back in December of 2020. They tested our sweet boy while he was sleep deprived. They tested him as he was falling asleep, as he was waking up, and when he was awake. No signs of any seizure activity. Whew. I remember thinking- well at least he isn't having seizures!

Now they are similar.. his eyes flutter and his little arm goes up by his head and shakes. They don't last very long - only a few seconds - but it's multiple times a day. I remember the first one he had and I looked at Adam and said "babe, I think that's a seizure." He agreed and we messaged our pediatrician and asked to get into our neurologist sooner than we had originally had scheduled. They bumped our appointment up and he scheduled us with a 48hour take-home EEG test. We are in the middle of that 48 hour test right now. Greyson has had a few of the episodes that we thought were his seizures so we are hoping our neuro will be able to say yes or no and start with a game plan.

We want Greyson to have medication to help control them if they are damaging to him or if they painful. We want to try and alleviate any pain they may cause. He doesn't act in any pain before, after, or during them.. and they are only a few seconds long. After it's done he kind of "comes to" and looks at you and typically makes his sweet little coo-ing noises. The big thing we are focused on treating them without stifling him. We don't want to over medicate and make him like a zombie. We don't want to over medicate and risk any damage to his other organs either. But we want him to be comfortable. A balancing act. I think the only thing we've noticed since the seizures started is he gets tired and seems to need little naps more often or a nice big nap. He's always been a pretty good sleeper. We've had a few nights sleeping in our rocker in his nursery or the recliner in the living room, but only a handful.

Greyson's sweet little noggin is covered right now in electrodes and gauze. They sent Adam and Grey home with a Superman cover and a Paw Patrol backpack to hide the machine. They have two little electrodes on his chest to measure his heart rate. It seems more of an annoyance to him than painful but I can't imagine how his hair will be tomorrow when they take all that goop off! It was so cute when they took the electrodes off of him in Milwaukee.. we couldn't give him a bath right away because he had to go to another building for an MIR right after. His poor hair looked like a hot mess.

He's the strongest kid I know. He does have the middle name Kent after all :)

xoxo,

Kim