Tomorrow night will mark four weeks since 16-year-old R’s last fainting episode. Since that faint was number 31 in 20 days and 4 hours, we got her on an airplane and down to lower altitude. We have been staying near two major medical institutions (where her health has been being addressed by multiple kinds of world-leading specialists).
We are making medical strides on a weekly, sometimes daily, basis! The more than gets calmed down, the more underlying layers become evident. There is still much work to accomplish here.
The hope in giving her body a full 60-day reprieve from altitude, while simultaneously addressing a host of underlying triggers that are pushed over tolerance levels by elevation, is that we will be able to permanently return home at the end of summer and that her health remains stable there.
We have had days here with as many as four medical appointments in a single day, and weeks with anywhere from two to five appointment days in the week. However, as a stroke survivor and a teenager alone together in a state where we had met no one prior to January, we are also striving to approach this trip with as much of a “vacation mindset” as possible. The fact that R remains faint-free is helping that goal immensely!
Since neither of us has a driver’s license, we’ve gotten really good at RideShare services, shuttles, and walking much further (pushing my pretty pink walker, Bubbles) than either of us are used to. We have a great church home-away-from-home that we’ve managed to visit three of our four trips down here in since we started these trips in January.
The youth group has included R in all their events and welcomes her to participate in much summer fun. We’ve enjoyed cooking and art offerings at the local libraries, weekly classes at a community center, are in our community pool about four times a week, and are taking one “big” special memory-making outing per week. This week we’ll get trained to volunteer at the local animal shelter.
Our first week here was rough, between excessive heat, bugs, and a major issue with the former tenant, all without knowing folks or having much of a support system yet. Now we’ve somewhat acclimated to the temperatures, made lots of medical progress, gained a few friends, become more confident in our own abilities, more knowledgeable of our resources, and settled into more of a routine.
We’ve done girly things to redeem the years my strokes stole from us, like manicures, pedicures, home facials, and hair coloring. We’ve selected beautiful mother/daughter rings. We’ve taken “mermaid swimming lessons” (complete with fins and tails – I can’t initially get pictures to upload, but I’m trying), and we went indoor sky diving – both were less terrifying but more physically demanding than I had anticipated.
R was the “rock star” (flight instructor’s words) of the mermaid and skydiving classes, while I made excessively modified attempts at each and my body demanded I sit much of the activities out. I was amazing to sit back and watch R thrive though. She’s nearly always smiling, but after past few years she has endured, truly living is a beautiful thing to witness happening in our girl’s world!
I am so glad R wanted to learn how to make “raw lasagna” this week. This free author presentation at the library was actually one of my favorite activities down here, so far. I was capable of many of the skill required, and the results were easy, delicious, and beautiful. Because of all our time in swimming pools, I also just re-learned to do in-water somersaults, something I’ve done since my earliest childhood memories, but had not been able to master since my strokes, coming up on 8 years this fall.
I don’t know why pictures aren’t uploading from the road, but I wanted to get you an update before more time passed. I have successfully added a few pictures with this post’s link (June 22, 2019) on my Facebook page, Harvesting Hope from Heartache, if you wish to view them there. (I would be delighted if you “like” the page while you are there too. Thanks!)