The Best Laid Plans

Mt. Hood Forest Welcome Sign

A few weeks ago, my husband came up with a wonderful, horrible idea. He proposed that we drive up into the nearby mountains, find a dark, quiet place to park, and look at the stars. He got really into the idea, checking moon cycles, and downloading a star chart app on his phone.

Finally, the big day came. We loaded up Rachel, Stewart, a blanket, pillow, jackets (it was 101 degrees during the day, but cooler in the mountains), bug spray, bottles of water, granola bars, towels, emergency meds and oils.

The drive up to the site Brett had pre-scouted took about an hour and a half. It was beautiful to drive along in the dusk, seeing the bats and birds hunting for the evening bugs. Once we turned off onto the forest service highway, we saw an owl, a fat little rabbit, and tons of bugs. Seriously, you should see my windshield. It's a bug graveyard.

We found our parking spot, tumbled out of the car, let Stewie take a break, and then I promptly stepped off the edge of the highway, overcorrected, and fell on my ass. Good thing it's well-padded; I didn't even bruise. Rachel spread out her blanket, plopped down her pillow, and just took it all in. There will be no photos of the stars, because 1) I'm a crap photographer, and 2) I was enjoying myself too much to worry about it. 

Rachel sees the Milky Way for the first time

We were parked, staring at the sky, for about an hour, but it was very late, and Rachel hadn't been able to nap during the day, so we packed back up, and began our descent. We had gone maybe a mile when Rachel indicated she was feeling carsick, so Brett found a place to pull over, we got her out, and she did indeed vomit. We soothed her as best we could in pitch blackness on the side of a forest highway, with only the cabin light of the car for illumination. She heaved a few more times, and then (because, why the hell not?) a complex partial seizure started.  Of course. 

The surface we were kneeling on was very rocky, and strewn with forest debris, so I grabbed the blanket out of the car, ready to lay it down for her, but she was pretty well settled into leaning against Brett, so I swiped the VNS and waited it out. As with all of her seizures of late, there was no panic, and even though she lost consciousness, she was able to be roused enough to get back into the car. Once we were sure she was stable, we continued on down the mountain, and onto the main highway.

We'd gone about 5 miles down the main highway, when Rachel indicated she'd be sick again, so Brett managed to find a wide spot on the shoulder, and this time Rachel stayed in the car, just opening the door. I got out to support her, in case another seizure started, but this time it was just the sick, so she was able to sit back up, have some water and a mint, and then we were on our way again. The rest of the ride home was just fine, and Rachel finally felt better.

This is maybe the second time in her entire life that Rachel has actually been motion sick enough to vomit. Thank goodness it was a good 3 hours since she'd taken her meds. By the time we got home, it was after 1 a.m., so Rachel brushed her teeth, took some oil, grabbed her dog, and crashed into bed. We have tentative plans to drive up to the local hiking/camping spot, and meet up with out-of-town family, and Rachel says she's up for it, but we'll see how the morning goes. 

Change Is In The Air

If there's one thing we can count on when it comes to Rachel's seizures, it's their changeability. Just when we think we've got a handle on what to expect, something new takes place. The last couple of days have highlighted that for us, but it's not all bad.

Yesterday evening, Rachel took Stewie, and went to use the restroom. She closed the door, which isn't abnormal, but since we got the new carpet, the door makes a much tighter seal, and it's harder to hear if she calls out. Also, we had the air conditioner running, and the TV on. We didn't hear anything unusual, and after a few minutes Rachel opened the door, and sort of stumbled out. She was slurry, and indicated she'd had a seizure, so we took her to her room to lie down. Fortunately, the seizure was a partial, she didn't fall, and wasn't injured in any way.

When she got up, we asked Rachel what had happened, and if she'd alerted Stewie to the seizure. She said she didn't say "help," but when the seizure started he became agitated, and went to the door, but it was shut all the way, so he couldn't open it. She didn't see if he tried to pull the alarm. We didn't hear anything at all. Usually we would hear his claws on the floor or door, or his efforts to pull the alarm on the tub. We discovered later that the alarm has become very hard to pull, so may be rusted inside, and needs to be replaced. So, no closing the door all the way until we are assured Stewie can either pull the alarm, or open the door. All in all, she was unharmed, and didn't experience any panic, or we would have heard her screaming and crying.

This evening we were sitting in the living room, and Rachel indicated that she wasn't feeling well, and then said, "Yup, I'm going down." That was an unusual presence of mind for Rachel, and the first time she's ever said anything like that. The seizure progressed as they usually do, we swiped the VNS, and comforted her until it ended, and once again there was no panic at all, and her recovery was swift. We have often said that the worst part of Rachel's condition is the anxiety that goes along with it. These last two seizures have given us a lot of hope that she may be overcoming that debilitating reaction to seizures.

We made the increase in her cannabis dosage a couple of weeks ago, and since then Rachel has been sleeping less, able to stay up most days without a nap, and generally more willing to be up and about. While all of this is wonderful, and we certainly hope that it will continue, we always remember that it could all change with the very next seizure. We are always in a state of wary readiness, and each seizure is a unique experience. 

In the meantime, we'll be doing a round-up of all the alarms, checking each one for ease of use, and continuing to work on training, and ramping up the seizure response training that Rachel has slacked off on. I've been making sure she takes her oils each day, and now I have to make sure she's doing response training at least a few times a week, no matter how much she complains. Rachel says she feels too conspicuous doing seizure simulations in public, but I remind her that's the point...that people will notice if something happens. 

We have a neuro visit next month, and we'll decide then whether to attempt a minor reduction of the benzo she's been on for about 8 years. Now that the anxiety is better controlled, we might be able to make that reduction without a major relapse. As usual, any change that's made will be low and slow. We still have a long way to go with her oils, so we'll make another small increase before any other changes, and monitor the situation.

Here's hoping that future changes are in the positive column, and not the negative. We've lived this life for 14 years, and still feel like we're learning on the job. We still make mistakes, and don't always anticipate what problems might occur. What we have going for us is a great kid who wants a better life.