Wednesday, November 12, 2014
Landing on Comets
Today I learned that a space craft has landed on a comet for the first time. That's a photo of the event. Meanwhile back on earth, we got a sort of explanation, possibly, for Sophie's "drop foot" or increasingly strange gait pattern. Yesterday was the Quarterly Trip to the Neurologist, and despite Sophie's recent digestion troubles, she was in fine form, alert, smiling, seizure-free and fairly animated. The Neurologist was delighted and suggested that the prolonged use of the particular anti-epileptics have probably, over time, caused the problems. She informed me that both Vimpat and Onfi are troublesome, and she really, really wants us to continue to wean the Onfi. This can only spell improved efficacy with the cannabis, as most reports indicate those off of benzos in particular see the best results. She was delighted as well that the cannabis was helping her so much, remarked on how good she looked and agreed that more testing -- an EEG -- wasn't necessary. We made a plan to begin another wean this week and will keep it at that level for a month before moving to the next. I have written out on a piece of paper four months worth of weans (1 teensy tinesy bit, hopefully, a month) which is a start but not complete. The Neurologist told the grim story of one of her patients who got into too much trouble at the end and continues to take a tiny bit. She suggested that this might be the case for Sophie, too, given how long she's been on the drug and how much she's taken. Lovely. Maybe I'll get a chance to ride a comet in celebration of The Removal of the Benzo. The Neurologist also threw some alarming fact about bone marrow and one of the drugs into the conversation which I filed away to mull over later. Lovelier. I told her about the weird stepping motion Sophie makes and how I'd wondered whether she had Parkinson's or Multiple Sclerosis, two of the diseases that I saw on the internets that correlated with drop foot. I asked her this question in my best casual, yet rueful and ironic way (because -- really -- I wouldn't be entirely surprised to learn of some new catastrophe and when your child is nonverbal, who the hell knows ever what's going on? That spacecraft that landed on the Comet is called Rosetta, which makes me think of those language programs which then makes me think of how we can't figure out what someone like Sophie is thinking or feeling and wouldn't that be wonderful if there could be a Rosetta for the nonverbal?
The Neurologist, after observing Sophie walk believes it to be just plain old weakness, exacerbated by her constant crossing legs and a possible injury around the knee. She wrote me a prescription for physical therapy, so next on the agenda is perhaps a fracas with the insurance company over whether this is absolutely medically necessary (can't she just use the wheelchair? I imagine the agent asking over the telephone). Before I do that, though, I'll take her to the private physical therapist for a little assessment that will cost me about three trillion dollars and get some advice from her on where to go In the Healthnet Network for regular physical therapy. Remember you conservative and anti-Affordable Care Act freaks and repealers: You don't want no government coming between you and your doctor!
All in all, it was a good visit to the place of CONQUEST (see my post about irony, written years ago) -- surely not as spectacular as a spacecraft landing on a comet, but who am I to think our little problemos have a speck of significance in this grand universe?