A second member of the tube-feeding club

Interesting that Reuben was the vehicle through which our fear of adopting Tsvetomira was removed because her primary diagnosis of epilepsy was something that we at least had experience with (even though she has not had a single seizure in her three years home!) and now our three years of experience with tube feeding Mira means that Reuben's surgery today to put in a g-tube is something that we already have familiarity with as well.

First day, Wednesday, involved a 24 hour EEG. We spent some of our time out of the room at his favorite ball machine.

The three littles visited the next day. His hair still looks really rough after washing out the adhesive from the electrodes. 

We spent some time in one of the playrooms.

And some time in his bed watching his favorite greeting card previews.

There's Ebby - always into shoes!

Day three - finally waiting in pre-op for the g-tube surgery.

Playing in the surgery waiting area

Waking up after the procedure. He looks pretty rough, but not any rougher than he did before the surgery! He's been having so many nearly continuous seizures that he's pretty miserable most of the time this week.

But I DID get one sweet little smile! He's been mostly non-communicative, not even nodding yes or no for most things. After about an hour he said his first word: Bible. About half an hour later the next one: eat (which he can't do until tomorrow), followed by milk and a few more requests to eat. About two hours ago (from when I'm posting this) he was able to start a very slow rate of pedialyte through his new g-tube. That rate will increase through the night as long as he tolerates it well, and then tomorrow we will begin the new keto diet and see if we can make some headway on these seizures!!!