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. 

Breathe, Baby

Life seems to have been extra busy lately, but this week, in particular, has been downright hectic.

Rachel had an appt. with her neuro on Monday, in Portland, mid-morning, which meant no nap until we'd returned home, and both of us managing the stress that comes along with the hellish traffic in that particular municipality. We're all Oregonians here, but some of us don't seem to handle driving in rain all that well, and traffic was suffering more than usual.

Tuesday we drove south to Eugene, and my rheumatologist, where I thought I had an appt. at noon. I was wrong. It's supposed to be next week, but they weren't very busy and worked me in, bless their hearts, which included getting a steroid injection in a very unhappy finger joint. So, two days of long drives and doctor visits, in the pouring rain. 

Rachel reads with elementary school kids on Weds. and Friday mornings, so Weds. was reading, we had to do a grocery run in the afternoon, and then we had a rep. for a carpet installer come out Thursday evening to measure the house for carpet and linoleum. That meant some extra clean-up had to be done beforehand. Today is Friday, so more reading, and tomorrow I'm driving south again, to help my folks set up wi-fi in their new rental. Rachel will stay home with Dad.

This evening Rachel started having a seizure, and it pretty quickly became apparent that it was going to be a bigger event than is customary for her. It started as a pretty standard complex partial, but then she stiffened totally, her eyes rolled right, and her head turned. She held her breath, and just as her lips began to turn blue, she took a shallow breath. Brett and I were both quietly urging her to "breathe, baby, just breathe." 

I ran to the fridge, and got a syringe with her high-THC sublingual rescue oil, and squeezed a small amount into her cheek. Soon Rachel was breathing a little better, and relaxed. Her oxygen level came back up, but she was shivering hard, and was really out of it for several minutes. Stewie hovered nearby, worrying, and occasionally giving her hand a lick.

Finally, Rachel fell into a more natural sleep, for about 10 minutes, waking long enough to take her evening meds, use the bathroom, get on jammies, and crawl into bed. She asked me to just sit on the edge of her bed for a few minutes, while she worked on calming herself, as her heart was still beating pretty hard, and she was having some anxiety. I was happy to do that, of course, and would have sat there all night, if she needed me, but she told me I could go, so I kissed her head, turned out the light, and came back to the living room, and the monitor, so I could listen to her breathe.

December, 2016

Snow!

Hard to believe that an entire month has passed since my last blog post. I suppose that's a sign that things have been going well; there's not much to complain about at the moment.

The increase in dosage of Rachel's oils, and the decrease in her Keppra dosage, has been good for her. She's working on her bedtime PTSD, which is still a struggle of varying degree every night. Her psych says to practice talking to her brain as if it were her friend, and not her enemy. She says that maybe they can be frenemies, but she's not quite ready to make nice. I get it.

We had a little bit of snow a couple of weeks ago, which Rachel and Stewie both enjoyed immensely. Stewie acts like he doesn't even feel the cold. He'd play outside for hours if we let him. 

Rachel made it through the excitement and busy-ness of Christmas without any problems, and until yesterday had experienced only two seizures in the whole month, both partials.

Yesterday was her second visit with her new neuro. We had to drive to Portland, which is always a stressful proposition, but this appointment happened to be at 3:30 in the afternoon, placing us in a terrible position, traffic-wise. It's never good up there, but this was BAD. We did manage to get to the appointment on time, but Rachel had a seizure on the way, while I was driving 70 mph, in the fast lane of 5 traffic lanes. Fortunately, there was a wide emergency lane I could pull into. The seizure was short, and we were on our way again in about 5 minutes.

I like the neuro. He listens to my opinion, and even though he's pushing for Rachel to try the Neuro Pace implant, he understands our reluctance to put her through more testing, surgeries, etc. Rachel says she'd like to do it, but it will all depend on insurance, co-pays, and out-of-pocket expenses. Sadly, the ability to afford a treatment that may change her life for the better is dependent on our ability to pay for it. The clock is ticking. Rachel is almost 22, so if the new president is successful in repealing Obamacare, Rachel will have to be on Medicaid, and I doubt they'd pay for this surgery and all the testing that goes with it. We left the office with an armload of brochures, booklets and info sheets. We also left with Rach's medical cannabis card renewed. The doctor believes it's helping her.

On the way home, we stopped at a yummy burger joint, both because we were hungry, and to get us out of the Hellish traffic for a little bit. Rach and I enjoyed our dinner, and Stewie crashed out on the floor while we ate. The traffic was still bad when we got going again, but the break was nice. We ended up getting home at about 6:15, whereupon we flopped into our respective chairs, and hardly moved until bedtime.

Today is very quiet. Rachel and Stewart are currently napping, and even though I should be doing something productive, I am here, spewing my guts to a screen. 

Thanksgiving

Good boy, Stewie

The photo above was taken after Rachel's second tonic-clonic seizure in a 1 1/2 hour period. She was wiped out, and so was Stewart. He worries about Rachel when she's having a seizure, and sticks close to her when she's recovering. The bed is a mess of random blankets because her usual set was in the wash, after having been vomited upon repeatedly.

This post is about Thanksgiving; both the holiday and the emotion. We are very thankful that Rachel is ours, and that her situation isn't worse. We are thankful that cannabis is helping us manage her seizures and her anxiety. We are thankful for the wonderful people that grow and produce the oils we use. They are working very hard to get it right, and they really care about Rachel and our family.

We are thankful. We are also wary. We know about the risk of SUDEP, and that the risk is higher in a person with poorly controlled seizures. We do what we can to mitigate the risks, and give thanks for every good day.

Waiting For Rachel

Stewie impatiently waits for Rachel to return

Last year, when Rachel was still up to taking college classes, I started taking random pictures while waiting for her to return from class. I shared some on my Instagram, and some on our dog blog (link to the right --->). The hashtag was #waitingforrachel.

I spend a lot of time waiting for Rachel. She can't drive due to the risk of seizure, or even panic attacks, and she has no desire to do so. She's working on being more independent, and spending time doing fun things without me, but I still have to be nearby, at least close enough to respond within just a few minutes, in case of emergency. Generally, this means sitting in my car, reading my Nook, or taking a walk. Sometimes I have Stewie with me, which is nice for the walks, but many times it's just me, sitting there and trying to focus on reading, while trying not to panic every time I hear a siren.

Lately there have been more times when I'll drop her off somewhere, and then run off to do a small errand nearby, but I'm never gone more than 15 minutes, and the whole time I'm away, I'm dreading and anticipating the ringing of my phone. So far, so good. We haven't had any major incidents while I've been parked outside, or even off-site. *fingers crossed*

Rachel's most recent interest is in volunteering with the school district's SMART (start making a reader today) program. She'll be reading with kindergarteners twice a week. She's done two sessions now, and really seems to love it. Each session is 90 minutes, and Rach has 3 kids that she reads with individually in that time. The first day I was a mess. The school at which she volunteers is close to downtown and the hospital. I should have taken that into account when choosing schools, but she'd worked at this school before, so it seemed the best option at the time. Every time I heard a siren, I chanted to myself "please, don't come closer." 

After the first day, Rachel offered to text me between each child's session, so that I would be more at ease. I was incredibly grateful for her empathy, and that she offered without me asking. PTSD is a horrible thing, and mine seems pretty firmly centered on sirens, tonic-clonic seizures, and hospital smells. Weird, right? ;)

I don't think I'm unique in my need to be close by when my neuro-atypical young adult is off on her own. She has Stewart, a body alarm that he can pull, a watch that can detect and report a tonic-clonic seizure, and an ID tag that has a QR code which will take responders to a web page with all her pertinent info. The poor kid is bogged down with all the safety gear I can get her to wear, and I still wait nearby. It's quite likely I'd benefit from some good therapy, but those funds, and the time for the appointments, are currently allotted to Rachel's need for psych care. 

I envy those parents who, even though they worry, can let their young adults walk out the door, and be gone for hours, without the outright fear of a random storm in their child's brain causing them harm. Who don't have the concern that in the midst of a seizure their child may be confronted by police, and harmed because they can't respond to commands. Who have the normal expectations of sending their adult child out into the world to get jobs, make friends, and go on to live an average life. We have no idea what will happen for Rachel next, or whether she'll ever be able to live on her own. 

Unsolicited Advice

See this gorgeous waterfall? I took my daughter and her service dog on a nice hike up to it recently. It was raining a little bit, and the trail was muddy, there were leaves all over the place, and it was glorious! The river is swollen from all the recent rain, and the falls are crashing and beautiful. We were having a really good time.

Then some random stranger on the trail decided to start giving unsolicited advice about how to train the dog. Wait, what?! First she asked if he was in training (this happens every time we go out). My daughter told her that no, he’s her dog and is working. Then the stranger starts in on some rant about her friend who lives in New York and is blind, and she’s getting her fourth dog, but she fell down the stairs, and if we don’t want our dog to go after random things we should teach him some obscure Russian word, so he doesn’t run off into the bushes. Okay, crazy, gotta go now.

Seriously. Every single time. Can’t we just have a nice hike in the middle of a random forest trail without some weirdo telling us how to work with our dog? I’m getting tired of being polite, and one of these days I’m going to blow and just tell some idiot to go away and leave us alone.:/