I've lost track of the days now...it's Tuesday now, and we had some adventures. Yesterday was a busy day; we had lots of treatments and a PFT (pulmonary function test). The numbers from that test were very encouraging, although some of his small airways are still impaired. Within the normal range, but they've been higher. We're hoping they'll improve a bit more before we head home, which will likely be on Monday. It looks like we may be able to get a vest to use at home, too--that will be far easier, especially on those days when he isn't interested in doing the acapella.
The hardest part of our stay here is not being in my own bed and not having a home cooked meal. I miss my own cooking. We can't afford to have me eat out all the time, so I'm trying to be frugal, but frugality without a kitchen tastes like crap. There's a fridge (shared amongst all the families on the floor) and a microwave that's as old as Methuselah. No oven, no stove...just the basics. There's also a cafeteria, which gives a 5% discount if you use their pre-paid card (which you can refill in $5 increments), and they have a pretty good salad bar. The rest is cafeteria food, pre-packaged chips, soft drinks, etc. I'm trying to stick with salads, skim milk, and a little extra protein...often skimming leftovers from Ben's dinner trays. Getting him to eat more has been a challenge, too--he doesn't care for their cooking, either. When we get home, we'll have to institute mandatory snack times.
Bedtimes are really hard to institute--he's not tired and there's so much activity until 11 at night. There are volunteers who stop by to help entertain him, which would give me some time to go get a cuppa or run some errands, but more often than not, they stop by when we have visitors or when he's in the midst of treatments.
In the quieter times, after I've finally turned off the lights or when he's working on a project, I'm either weaving on the watermelon band, or I'm watching the Patrick Swayze "North and South" series. (Or sometimes both.) Technically, I think it's too big to be called a mini-series when it has some 24 hours of footage over three seasons. It was on Amazon for more than 65% off the retail price, and I'd been waiting for it on Netflix for a long time...I suspect they lost some of the discs and never bothered to replace them. For around $20, I got all three seasons. There are parts of it I really like, but other parts that are just annoying. The women's costumes are good, for the most part, but sometimes an outfit comes out that's just weird, and Kirstie Alley always looks like she walked off the "Cheers" set and just put on a different dress. Her hair looks too 1980s to be 1850s. The Northerners' house is nice, but it looks like they just filled the streets with beach sand. Don't get me started about their accents--when they say "house" and "about" they sound Canadian. But I'm so intrigued, I have to keep watching.
I took a short walk today down to the grocery store. They had my favorite granola bars and I got Ben some more of those dipped granola bars. When I got back, I picked up a Venti size cold drink cup from the coffee shop downstairs that I've filled three times with water. I noticed that I hadn't been drinking near enough water these last few days. I'm not very good at judging distances, but it's about 7 or 8 blocks each way, so it was a pretty good hike. The weather was so nice and sunny, I had to. A bit nippy, but sunny. Hopefully it'll be just as nice tomorrow. :)
K
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