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?
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As Ms. Moon often says, we are all one, so you and sophie ARE the universe and i am thankful this is so.ReplyDelete
(i know this may not make sense to you but somehow in this moment it is a grand truth in my head).
I like Angella's grand truth.ReplyDelete
You are the best, most attentive mother who is a fierce advocate for her daughter and you should be teaching classes to medical students.
There. I said it. Someone needs to tell them the truth of these matters. Obviously, they're not all getting it from their educations.
And exactly- why would the government be any worse to come between me and my doctor than the damn insurance company?
I love the illusion that some conservatives seem to have that medical care is free (in the free-from-interference sense), as if doctors and patients alone have the ultimate say in their medical care.ReplyDelete
When I took the fifth graders to the British Museum on Tuesday, I made sure to show them the Rosetta Stone. I'm not sure they understood its importance, but maybe now they'll connect it with the name of the comet-exploring craft.
I like Angella's comment, too. That IS a grand truth.
Oh, such mixed emotions reading this post. So happy that Sophie continues to do so well that the doctor is impressed, but sad to think about the unknowns as you continue the wean and the not knowing about the gait and the ridiculous racket that is physical therapy. I think parenthood is hard, but I'm doing addition and subtraction and you're doing calculus. And yet you are sane and literate and strong, and especially ironic, which I really admire in a person.ReplyDelete
The thing about PT for me is that I loved all my therapists, over the years for the neck shoulder crap - I've seen six or seven different ones, and they mostly know what they are doing and they taught me things the doctor didn't explain or know, and they helped me, a lot. But with the most expensive health insurance money can buy, BCBS, it still cost me $100 to walk in the door. Every little thing they do comes with an upcharge, so watch the bills and say no to icepacks or ortho tape or trivial things. One therapist actually admitted to me that her boss preferred work related injuries over chronic ones like mine because they could bill more and actually encouraged the staff to seek out that type of business. How, she wondered. Anyhow, I digress. The PT should help, and if you watch and ask questions, there's lots you can do with her on your own and save a hundred bucks now and then.
And yes, a Rosetta stone for Sophie would be wonderful. And the Rosetta spaceship landing on that rock in space? Hard to fathom how we can accomplish some amazing things and yet not accomplish other more basic ones.
I don't know. I care more about you and Sophie than about the comet.ReplyDelete
I am interested to know more about Vimpat and Sophie's legs or her gait. Evie has been on Vimpat for a couple of years now and we decreased her dosage at one point because one of her legs would simply
give way, collapse under her, and she would fall.
Most recently she fell down a flight of stairs, face first, with a bowl of cereal in her hands. The bowl shattered and caused a deep cut that required 8 stitches. Fortunately it was above the knee in an easily stitched spot, but what could have been....does terrify me, when I think about it.
Anyway, Evie's doctor didn't tell me, I had to do the research online to discover this connection.
I'm curious to know what your doctor said or what you may know about Vimpat side effects.
I read that cannabis oil has been shown to have curative effects on cancer. Don't know if that has been widely tested, but how wonderful if it were true!ReplyDelete
my boy's physics professor gave the class a little lesson on how it was possible to get that space craft through space and all the way to the comet in absence of power. it actually does remind me a bit of what your doing with Sophie, keeping her on a wellness trajectory.ReplyDelete