Thank you everyone for the great support.
What a difference it makes.
And the very specific advice and info and experience from those of you who have been through this is so important and so encouraging!
I feel better today, and I think having the sore throat/cold definitely plays a role. I also talked to the doctor who did the procedure and felt much better after that.
I think things will calm down and normalize.
After all these years, I need to keep my perspective!
So . . . we still have the spit and sweat . . . hurray for body function.
I was interested that the doctor said he wouldn't necessarily rule out placebo on things like that. Hmmmm!
I also have been having more normal bladder function -- which is supposed to be a good thing, but I've been so used to not having to deal with it that this is a whole new thing! I'm used to going when I want to, not because I feel it. But this is the body coming online, right?
I have had some headaches, but they go away.
I have not had any seizures since the procedure. If I get through a whole month I will think this is significant. Three months and I will know there was a definite effect. Fingers crossed.
Legs still weak. I cut back on my baclofen, but I wonder if I was too drastic and had some rebound stiffness, so I am being more modest, but still cut down some.
edited to add one difference i discovered that I don't understand -- just noting down -- for years i have not been able to drink much without stopping for air; i have found that i can actually drink a regular glass of water without gasping, like i used to.
I think what I wrote about my daughter gave the wrong impression -- she worries about me and is medically squeamish. She referred to Flowers for Algernon, thinking about the main character who is part of an experiment that supposedly "improves" him (it makes him much smarter) but then everything reverts to how it was before; she was afraid I'd end up worse off, and she hated the idea of the balloons and especially the potential for stents (which I do not have). She gets dizzy when people start talking about anything medical. I think she's more positive now.
Overall . . . some basic body functions happening, my head seems more clear, my cranial nerves seem better, and that's good stuff!
If the lower body stuff and the vision are longer term damage, we will wait and see.
Thank you again . . . I am supposed to hang out with my little guy right now, and I will find some time to check in again later!