March 2016: "The Georges in Peru"

Again, not much to report.  Amy ate better than usual today, but mostly slept on the couch.  She was quite confused today.  I took Sarah, Mia and Paul shopping for black clothing today.  Hated doing it but it needed to be done now and not later.

As I've mentioned, Amy says a lot of nonsense right now.  She's pretty convinced that we have two more kids, Ellie and Luís (and sometimes Lisa and others).  At first when she spoke like this we didn't know how to react.  Can one laugh at someone whose brilliant mind is now splintered and in disarray?  Interestingly enough, the people who knew Amy well have all said, "Amy would have wanted you to laugh."  So we talked about it as a family and decided, "Go ahead and laugh.

No, it wasn't a normal day.  It's rather hard to imagine 'normal' at the moment.  But we try to carry on with our normal activities.  Not that we are in denial about the gravity of Amy's situation, but we can't sit paralyzed waiting for her to die.  I went to our missionary team meeting this morning.  The kids went to school.  I bought groceries.  A haystack of laundry was washed and dried on the line.  Today was the first day of track practice and Paul and Mia seemed to enjoy going.

Last night we took Amy to church.  One of the kids asked, "What if she starts hallucinating and causes a commotion?"  "I guess we'll have to take her out of the service."  Unfortunately, about half-way through the 2nd hymn she started to say random things loudly and wanted to lie down, so I took her out to the car to sleep the rest of the service.  Unless she markedly improves, we won't be able to take her to church again in the future.

"I want to go to an Easter sunrise service!" demanded Amy.  Hmm.  Easter sunrise services (where one has a service outdoors to catch the sunrise) haven't really caught on yet in Arequipa.  Okay.  We can have our own.  There is a 'Mirador' (a lookout point on top of a mountain) about 3 miles from our house, so yesterday, on my run, I went to check it out to see if one could drive up it and park someplace close to the top.  It looked good.  Next, how would we decide if Amy was feeling able to go without everyone waking up early?

I wrote a blog entry about how well Amy was today, but as I was in the middle of writing it she managed to fall down and hit her head. For a little over a week she has either been too weak to get up or at least asked for help if she wanted to get up.  I even stopped tying her to myself in bed at night.  But tonight she somehow managed to get herself up, go to the bathroom in the dark and then she fell down, hitting her head and giving herself the biggest goose-egg I've ever seen, plus bruising her elbow and ankle somehow.

Considering Amy's fall last night, she's had a pretty good day.  During the night she was pretty miserable, awake most of the night complaining of her head hurting.  But today she's taken just a few pain meds and the swelling went down tremendously. (the benefits of being on high-dose steroids)  Last night Sarah told me to wake her up when I wanted to go running and she'd sleep next to Amy until I got home.  (yes, my kids are as great as they sound like, but I might be biased!).

Yup.  Not much else to say.  Ate breakfast at the table.  Napped.  Took medicine for headache.

When Ben came down for breakfast he asked, "Why did you set 6 plates at the table?"  Amy hasn't been able to join us for 4 days because she has been so incapacitated by her condition, but this morning, she woke up alert, hungry and had some strength in her legs.  "Mom's going to eat with us!" I said, eliciting a surprised smile from Ben.  I helped her walk down the stairs (instead of carrying her), and she ate a whole waffle with blueberries and drank two cups of coffee (which didn't stop her from napping from 8 until noon).

First of all, if you are a medical person, don't let the title panic you.  Yes, Amy is breathing in a Cheyne Stokes pattern, but at the same time she is talking and eating again and even realizes that she is Cheyne Stokes breathing.  If you aren't a medical person, Cheyne Stokes respiration is a breathing pattern of people that are close to dying.  It is characterized by quick breathing followed by a long gap of not breathing.  In severely ill patients it happens right before they die.