Thanks, all. But basically we're in the same shit-go-round as we were three years ago when this all started. Only now, there's really no hope of her getting any lost nervous function back. It's a matter of making life possible with what's left.
She is, however, an amazing young woman, and will take whatever she has and do wonderful things with it.
For the newer people, here's a synopsis of what's going on from an old post in another thread;
OK, here's the synopsis;
At 16, my daughter, a pole vaulter, runner, flag twirler in the band, and all around great kid, got a painful tingling in her feet one day that worked its way up her legs over the next week. The emergency room was baffled. When it hit her waist, she was shipped to Children's in Pittsburgh, where they thought it might be Guillain Barre (it wasn't) or transverse myelitis (it wasn't). It got to her diaphragm and she nearly stopped breathing. It hit one side of her face, and she looked like a stroke victim. The best they could do was stabilize her, and after 6 1/2 weeks, she was sent home without a diagnosis, but with lots of expensive therapy so she could learn to walk, breathe, pee (with a catheter) and eat again. We were referred to Johns Hopkins, where they said it was all in her head. That place still leaves a bad taste in my mouth...
A few months later she was having trouble keeping food down, so we went to the gastro, who looked at the old MRI's... and spotted a tumor on her thyroid that everyone else had missed. The thyroid was removed with all the surrounding lymph nodes (it was metastatic), and after a lot of hemming, hawing, and long hospital stays as more of her digestive system crapped out, it was finally determined (through an international conference call of over 30 world-famous neurologists) that her immune system was trying to kill the thyroid cancer - and instead, had put her entire nervous system under attack. She wound up with a feeding tube, a wheelchair, a visit to the Mayo clinic to confirm this disease (called paraneoplastic syndrome, only about 100 - 150 cases anually worldwide). She will have a lifetime of huge medical expenses.
She was prepping to go to the US Naval academy. She wanted to study Marine Biology. She was lucky to graduate high school - she can't handle college yet, and will probably never be able to work in any way.
She's 19 now, 20 this summer. Though she needed the wheelchair for distance, she could still walk some - on her toes, with crutches to stabilize her.
With the current exacerbation, she can't even do that. She's now got a life sentence to a chair. Hell, she has "drop-foot" now, and will need to wear special braces on both legs to keep from damaging her own feet.
And, as of this evening's conference with the neurologists, they still know nothing. Most of the tests will take several weeks to complete. If the cranial pressure doesn't stabilize, they may have to put a shunt in her head.
Yay, brain surgery. Just what she needed.
It ain't House.