Friday, December 30, 2016

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.