January 11, 2019

My baby, in all of his hard and fought-for glory.

Louis was a perfect patient through his echo, laying so still without a single peep the entire time. I started to think maybe something was wrong, he's tired, his heart is slowing, or his function has decreased further. (These are the worries of a mama who has seen a lot of sickness in her baby) Likely he was an angel because the room is kept warm and dark and they had Cars playing when we walked in, a movie he hasn't seen before but he immediately recognized Lightning McQueen! 

He had an EKG and a pacemaker check, which both evaluate the electric function of his heart, to see if blood is sent when it's needed. They test the sensitivity of the device to check that the leads have proper conduction and that the anchored ends are sending/receiving a signal. 

Today's check up revealed that his heart function is up from 22% to 42% which is almost in "normal" range.
"Normal" is an ugly word that's definition, for everyone, is on a sliding scale. I'm constantly trying to find a word to better describe normal parameters; average, standard, regular, usual. None of them are quite right.

Louis is extraordinary.

Nothing about him (or me, or Dan) will ever be "normal." How very boring that would seem.

Maybe this is a space we are finally "comfortable" (another word that doesn't sit right) in because of the support we have, and the quality of care that is constant, unwavering.

If you had told me 10 years ago, that I would spend my time celebrating my child's improvement in heart function, I would have looked at you cross eyed. And here we are, at 42%, dancing in the kitchen.