Tuesday — all over the place
May 29th, 2007 by willa
When we drive all day, as we did today, it knocks me out for hours afterwards. I think it was in one of Raymond Moore’s books that I read that riding in a car upsets some peoples’ vestibular systems — even if they don’t get carsick, they often have impaired concentration for some time afterwards. Impaired concentration is a way of life already; I do not need car exhaust and nausea mixed into the bargain. But this is a bit of the price tag for living way away from almost everything, especially with a medically fragile youngster — something we did not foresee when we moved here.
Stop One: Aidan’s neurology clinic. We discussed seizures and the possibility that the last two partial-onsets might be a good sign — the other parts of the brain opted not to get involved with the misfiring neurons or whatever they are.
Owl, if you are reading this, I asked the nurse practitioner if there was any reason to believe that talking a kid through a seizure helps him stay connected and even possibly avert a generalization of the seizure. As you might expect the answer was polite but made me feel as if I had asked if the alignment of the planets or the agency of the angels were involved in the outcome. You see them snap down their “Oh yeah, I’m talking to a PARENT” visor.
As you might also expect, I will continue to talk Aidan through his seizures if I get the chance; and you will probably do the same with your little one. She did say that it wouldn’t hurt and that’s enough for me ;-).
Stop Two: The on-site pharmacy to pick up his anti-rejection meds.
Stop Three: Labs for his monthly routine blood draw. A whole battery of tubes! The labs were packed and chaotic. The phlebotomist said it was because of the Monday holiday. At any rate we registered and waited over an hour, then had to leave to make it to my dental appointment. Aidan, who painstakingly prepares himself emotionally for the blood draw, was discomposed but shook it off.
Stop Four: My dental appointment. Just a checkup of my oral surgery from last month. Kevin fueled the Suburban.
Stop Five: Back to labs. It was still chaotic. Aidan struggling with composure… this is NOT the usual lab procedure. We had to wait for a while AGAIN, fearing that we would have to leave to make it to Kevin’s dental appointment at 2 pm. I bugged them a couple of times and finally got Aidan in. Then one of the not-uncommon mischances — the first vein blew and they had to poke him again, on the base of his index finger, which is quite painful. He was pretty heroic.. “I’m getting sad … I’ll be brave… just a little poke?” and so on, talking himself through it. Stickers seem like a pitiful reward, but he has learned to ask for them as a sort of symbolic affirmation of his victory. We got him Cheetos at his request at the hospital cafeteria and then booked to:
Stop Six: Kevin’s dental appointment, halfway up the mountain. We had expected this to be quick — just a crown casting. But it took two hours. The boys (Paddy and Aidan, this is) were awesome. They played with the duplos in the office and made up several fairly elaborate games. Aidan even “cooked enchiladas” in the “oven”(under the table) and served them. They made robots and football guys. Aidan browsed through a Coastal Living magazine. I retreated into my little self as much as possible, reading Dr Phil’s Relationship Rescue (10 cent library sale rack) and as many of the waiting room magazines as I could put up with. Ugh, I way overdosed on self-help. Next time I will bring Orson Scott Card.
Stop Seven: Home again. Kevin to take Advil and me to snap at the middle boys for being tactless enough to greet me at the door with “What are we having for dinner?” We left at 8 am and now it was almost 5. I had brought a couple of snacks in the morning but by no means enough to keep me and Aidan and Paddy sustained (Kevin can go forever without eating). I made a quick call to the car repair guy since the brakes are wearing out on our Suburban (another mountain-living price tag — brakes get a lot of wear and tear). But I couldn’t reach him. After I had zoned out for a while I made pizza and other junky convenience foods for dinner.
Now Clare is watching the Clancy Brothers and Tommy Makem with Aidan, and Paddy is playing a flash football game.
It must be difficult, sometimes, living in a secluded location. It forces you to cram all your medical appointments and errands into one day (where I usually spread them out). I am so sorry Aidan went through all that at the lab. It sounds like he was heroic about it all.
Oh, I sympathize with that schedule. You must be pooped. Maybe your boys could have made sandwiches and fed you, huh? LOL
Poor little Aidan. I’ll bet he’s glad that’s over. You too, huh?
Btw, I tagged you for a meme. But if you’re too pooped, don’t worry about it. Take care.
I was perusing your blog to catch up a little and this post caught my eye. I may not be understanding your explanation here correctly, but thought I would share my experience with you.
When I was in fourth grade, my bestfriend was epileptic. When she would seizure, I would talk to her calmly and she would seem to have a less violent seizure as well as come out of it really calmly. When I saw other people try to intervene, it was a much more aggressive and traumatic experience. I believed that I had made a difference.
My then boyfriend (now hubby) sat next to her during high school graduation and he had been warned that this excitement might produce a seizure, and I gave him my advice from my grade school years, and sure enough, she did seizure, and he did as I had instructed, and no one even knew that she had seizured.
I told someone this recently, and they looked at me like I was crazy. I had just assumed all these years that there was a connection to how I interacted with her and the intensity level of her seizures. It didn’t seem coincidental to me . . .
Warmly,
Cindy