There have been lots of tests and pokes and exercises and it seems that his large motor muscles may have already plateaued but that the cranial nerves for the face, swallowing, breathing, heart rate etc aren’t quite there yet.
We had a incident with some aspiration of fluid which means, at this time he’s on a puree and thickened liquids only diet. We’re supplementing with a little oxygen though his blood gas saturation was good.
It’s a little scarey for us all right now but there’s real hope that tomorrow may finaly be the true plateau.
I’m absolutely amazed by his family of friends. They feed and sustain him in a way that his extended family all did when he was little but they are the real soul food for him now. It humbles me.
and I am deeply grateful for the calm cheerfulness of Kate. She’s stressed and exhausted but always sounds sunny. It must be some innate quality of spirit that endures even when she’s sleep walking.
His corner of this semi intensive care room has VERY limited surfaces so the books and flowers that folks have sent have become somewhat of a space juggling challenge, hence Adam’s suggestion that if the thought of him floating in the ether of his body inspires you to an act of generosity, donate plasma and think of him as you feel the coolness and tingling finger tips.