Tuesday, July 23, 2013

Highest, Hottest

Today I was remembering the brief run of daily posts I put up at the end of last year, and how easy it felt to post every day. There weren't necessarily a lot of comments, but even without the dialogue it was an interesting process.

We've been keeping really busy this summer, with lots of barn time and play dates. The weather has been spectacular, so we're going to try camping soon. We won't go for long - three nights or so - but I think it will do Avery's blood sugar a lot of good to spend a few days running around outside. 

This picture was meant to be a lot more interesting, but the shutter speed on my phone camera let me down again.

I'm working on some projects for Christmas. I've got a gansey going - have just divided for the armholes. It will be a vest rather than a full sweater, because the recipient gets hot easily and doesn't like sleeves too much. I'm knitting it on 2.5 mm needles so it felt a bit slow at first, but really it has progressed quickly. Here is the swatch.

And over the past six months I have been making ice cream. I'm disproportionately obsessed with it. I literally lie awake nights dreaming up new flavours. Like I have a plan for a truly stunning and completely original flavour, which I can't even share with you because I'm hoping to get rich off of it someday. But here is my margarita ice cream - lime, salt, and tequila.

Carolyn, you remarked that Canadians measure blood sugar differently. You're quite right. A U.S. blood glucose number is (randomly) 18 times a UK or Canadian number. So when Avery was running between 17 and 22 (UK or Canadian) for four days, in the US she'd have measured at between 306 and 396.

It's nice to be talking to everyone again!

Friday, July 19, 2013

'chronic': adj, syn 'ongoing'

"It's life, Jim, but not as we know it."

Since Avery was diagnosed, we've had some frightening days. She had a four-day sustained high, for example, when we could barely get her blood sugar below 17.5 no matter what we did. The pediatrician told us to throw out the insulin cartridge and start using a new one. It worked: somehow, the third vial out of a 5-vial blister-strip pack, was ineffective. I had only changed it less than a week before, so it wasn't old...??

Anyway. Who knows?

Then, Avery had a low one night at eleven o'clock. I treated the low (liquid sugar followed by a carb-protein snack) but ten minutes afterwards, she threw up, and went low again. I was out of juice, and out of pop. She drank a few tablespoons of maple syrup, and then threw up. I mixed up some powdered iced tea, and she drank it, and then threw up.

After two hours and seven low treatments, enough of the sugar had absorbed despite the vomiting, to bring her her blood sugar up high enough that I let her go to sleep.

Today Avery's pediatrician began the process of getting her an insulin pump. There is a certain amount of learning that must take place before a family 'qualifies' -- they want to be sure you are not under the impression that the pump will make your life easy. You have to understand the effects of food, exercise, sleep, insulin; all things that affect blood glucose. Once you can manage it 'old school', you can ask for the luxury of a short-cut.

I'm pleased that the BC government is so selective about which patients are 'candidates' for pump therapy. This is a $7000 device, and the disposable infusion sets, changed every 2 to 3 days, are $20 each. I'm a taxpayer too, and I like knowing that, as far as possible, families are assessed as to their ability to use it responsibly.

It's hard to manage this disease. It's all a question of damage control - you are always a few steps behind, playing catch-up. My hope is that the insulin pump frees her up a little bit. It would be great if she could eat without a conspicuous injection, or if she could skip a meal that she really doesn't want.

It looks like she'll get her pump in September. First we have to decide on a model (I think our decision is nearly made), and then the pediatrician will order it and we'll begin training. Normally it wouldn't take that long, but it's summer and, between his holidays and ours, September is not far away.

I want to thank everybody for chiming in, in the comments. I really appreciate your words, and your positive thoughts, good vibrations, and prayers...all have come in useful in the past few months.

Next time I won't be away so long. I'm beginning to see that we're all going to be okay, and that someday there may even be time to do some housework, write a letter, sew a dress, bake a cake, read a novel, and decorate for Christmas. After all, you can't just stop everything, can you? 

You gotta bash on regardless.