Cupcakes, hockey, choir and Guiding

Posted by Karen - November 16th, 2014

So last week, my blog post was about the super-exciting fibrodysplasia ossificans progressiva drug trial going on right now – something which gives parents like me butterflies to think about (to quote my friend Paula). As I’ve said so many times, an effective and safe drug for FOP just can’t come soon ENOUGH. But… The reality is that an approved medicine – and I’m assuming such a thing will ultimately be available – is still years away. There’s lots and lots of testing, lab work and so forth still necessary before we reach that point. In the mean time… Well, there’s a quote which goes something like, “life is what happens while you’re waiting for things to occur” (OK, it’s not exactly that, but I’m sure you get the gist of it). And that’s really so true. My daughter Miranda doesn’t have a drug to treat her FOP, sure, but that’s not stopping her from being an active 9-year old kid.

Miranda’s been a busy girl lately. To begin with, she’s joined her school choir, which she is now eligible to do by virtue of being in grade 4 and thus an “intermediate” level student. Choir practices are every Tuesday morning for an hour before school starts, and Miranda’s made it every day so far. The choir has even had a performance – the kids sang songs at the school Remembrance Day assembly. I went to listen to it, and I thought they sounded great (granted, I am a tad biased, ha ha). Sadly I don’t have a picture of this.

What else? Well, last weekend I took Miranda and her brother Owen to a “Hometown Hockey” event. This is sort of a travelling roadshow to promote, what else, NHL hockey. Miranda doesn’t really care that much about hockey; she was mostly there to accompany her brother (a certified hockey nut), and she was a good sport about it. We walked around and did various hockey-themed stuff, including taking the following entertaining photos…

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In case you didn’t guess, that’s Owen and Miranda posing as big Vancouver Canuck and little Canuck, then me as little Canuck, and finally Miranda as a random Toronto Maple Leaf. :)

Finally, Girl Guides-related events and activities are probably what’s kept Miranda the busiest lately. Going back again to last weekend, Miranda did the first component of the “Tasty Treats” badge which she hopes to earn. That badge is pretty much what it sounds like, which means Miranda had to be responsible for baking her first-ever batch of cupcakes. They involved food colouring, blue icing, and M&Ms, and despite (or maybe because of?) all this artificial stuff, they turned out GREAT. Yes, I had to retrieve the ingredients from the cupboard, and help with a few steps which were difficult because of Miranda’s limited arm strength and movement, but M did almost all the work.

The cupcakes before icing...

The cupcakes before icing…

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…and Miranda with the finished product.

We’ve been enjoying eating these yummy bad boys all week.

We also did an event with the whole Guides unit last weekend. Again in connection with Remembrance Day, Miranda’s Guide unit went to a seniors’ home and presented poems and songs about peace and remembering, and got to enjoy cookies and juice with the seniors. This was nice, and a number of seniors commented about how they enjoyed having the girls there.

More Guides stuff this weekend too – going to a district-wide bowling event today. Miranda will get to enjoy bowling and eating pizza with her friends.

See what I mean? If we just sit around waiting for an FOP medicine, well… We’d do a lot of sitting. Doing fun and interesting stuff is ever so much better.

Ooh, one last thing, which doesn’t really fit with this particular blog post, but which I am really jazzed about so will talk about anyway, LOL. It’s been pretty cold around here, which means it was finally winter parka time. Miranda’s old parka was finally too small, so I bought her a new one – which she loves, but which turned out to be really tight across the shoulders (didn’t notice this until a day or two after we bought it). Rather than return the jacket, I did what I’ve been meaning to try for a long time. Specifically, I took the parka in to a tailor and got them to put a zipper straight up the back. I am thrilled to say that this worked AWESOMELY well. It’s now SO much easier to get the jacket on Miranda’s arms. Yay! Yes, it cost an uncomfortably large amount of money, but man, the result was ever so good.

Parka zipped up in back (and you can barely see the zipper!)...

Parka zipped up in back (and you can barely see the zipper!)…

..and here it is unzipped.

..and here it is unzipped.

Hacks for life with FOP, my friends. Rock on.

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