(guest blog by Adam’s mom)
I think this really IS the beginning of the plateau. Nothing has gotten worse today. Lung capacity seems to be improving slightly. There is a slight retreat of the numbness at the top of his thighs, and there really was a slight smile today. His facial muscles are, [...]
I’m guest-blogging for Adam today… here’s a copy of the post I did in qgbs (if you’re not checking it already, please check out http://community.livejournal.com/qgbs, a community group where visitors post updates about Adam and apparently lots of haiku) – john romkey
(Adam’s message to everyone is “Thank you”)
Adam seems to be doing better today than [...]
It’s been a double bummer of a day for Adam.
Yesterday he had some excitement (not necessarily in a good way) with a small choking episode in the morning. Adam required some oxygen via a nasal cannula for a little while afterward. He was placed on a puree diet, which was really kind of creepy [...]
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 [...]
Typing now something like slapping at the phone with a stack of fried eggs. But had to assert continued presence despite continued facial losses. Ready for turnaround any time now.
Astounding friends chipped in and bought me my own kindle. Blown away. Can’t handle pages right now, but kindle still working out.
Tired. Every [...]