Summer vacation, and Walk for FOP 2016

August 4th, 2016

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It's Thursday, and we've been back from our summer vacation road trip for a couple of days. Here's what we did on our epic journey (to quote my son, ha ha)... Last Sunday we got in our minivan and drove to Kamloops, BC for an overnight stop, then carried on the next day to Invermere. At Invermere, we met up with my parents, my siblings, and my nieces and nephews for a joint vacation. So. Much. Fun! We were in Invermere together for 5 days, and did all the great stuff that summer vacations are for. We swam in Lake Windermere, had ...

I suck at fundraising, or, 2 weeks till our event!

July 17th, 2016

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I'm going to admit this right here and now - fundraising is not my strong suit. Ask me to write some stuff? Sure, I'm your gal. Need me to do a verbal presentation? You bet, no worries. But fundraising... Oy. In this particular arena, I lack creativity, confidence, and general all around know-how. And yet, fundraise I must. Why do I gotta do this stuff, at which I have crappy skills? Well, let's go back in time 9 years, to 2007 when my daughter Miranda was a spunky, cute, and sassy 2 year old. On April 19 of that year, the ...

FOP in San Francisco

July 9th, 2016

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During the last week of June, my daughter Miranda and I took a trip to San Francisco in connection with Clementia Pharmaceuticals's ongoing work with fibrodysplasia ossificans progressiva. I won't go into specifics about the reason for our visit, but will simply say that Miranda was doing her part to move FOP research forward. It was a short trip; we just flew in on the Wednesday evening, spent the night and next full day there, and then flew home Friday morning. Still, what a place to be. I love San Francisco, which is very scenic and interesting. It's also close to ...

Miranda at the end of grade 5

June 26th, 2016

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This June seemed to have dragged on forever for me, but we've FINALLY reached the end. A big YAY to that! My daughter Miranda is now finished grade 5 (two "clean-up" days at school this week don't really count). Therefore, it's time for a year-in-review... First, I'm glad to say that fibrodysplasia ossificans progressiva mostly left my girl alone this year. It wasn't perfect FOP-free school year, though, because of an under-the-chin flare-up in May. It didn't get very big, but there was a noticeable mass of firm, slightly swollen tissue on the underside of Miranda's chin where it approaches the neck. ...

25th Annual FOP Research Report!

June 19th, 2016

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Happy Father's Day, everyone. We're definitely enjoying it at my house... My kids, Miranda (age 11) and Owen (age 14) gave their dad a gift in honour of this day, and I made pancakes and bacon for breakfast. After a phone call to my dad, we went out with my kids' grandmother to the yearly Scandinavian Midsummer Festival. Later on today, we'll be watching a hotly anticipated episode of our favourite cable TV show (the one that rhymes with "Fame of Scones", ha ha). It's all good. [caption id="attachment_2970" align="alignleft" width="800"] My kids and their dad, Pete.[/caption] To top it all off, ...

Figuring out how to do stuff

June 12th, 2016

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One of the ever-so-fun challenges of fibrodysplasia ossificans progressiva is coming up with alternative ways to do everyday activities. As FOP progresses, joints become partially or completely fused, and making it impossible to do things in a typical way. My daughter Miranda's current level of FOP restriction poses some significant challenges. So, what are her restrictions? Well, the major problem is with upper body movement. Miranda has no movement in her left shoulder (yes, this joint is 100% fused... sigh), very limited movement in her right shoulder and right elbow, and partial movement in her left elbow. Oh yes, and she ...

Early summer fun!

June 5th, 2016

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June is finally here. My daughter Miranda's grade 5 school year is only 4 weeks more, and that means... Not much actual schoolwork! It seems every time I turn around Miss M has yet another school field trip or special event coming up. This past week it was swimming at an outdoor community swimming pool, and soon will be a trip to Chinatown, a day at a waterslide park, and Sports Day. Fortunately Miranda is still physically able to do all of these special things (though Sports Day does end up being somewhat limited). However, fibrodysplasia ossificans progressiva does interfere, of ...

It’s that special time of year… IEP time

May 29th, 2016

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My daughter Miranda enjoys school a lot (though at age 11, she won't admit that, ha ha). Fortunately, school is one thing in which someone with fibrodysplasia ossificans progressiva can participate with others on a level playing field. However, that doesn't mean school is without challenges. There are some difficulties to overcome for Miranda to have a positive experience. Hence, the "individualized education plan" (IEP). The IEP is a special agreement between family and school as to what extra steps the school will take to make school work well for a child with special needs. This week, we had the last ...

Dismay… But also, FOP on TV!

May 23rd, 2016

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I had an interesting experience this week. By way of background - I've thought for a long time that I have good handle on coping with my daughter's fibrodysplasia ossificans progressiva. I mean this in terms of day-to-day emotions about what FOP means and what it does. I've long since stopped comparing my child to "typical" children, so seeing them do things that Miranda can't generally causes only fleeting, momentary wistfulness. Whatcha gonna do? She has FOP and they don't, so move on. It is what it is. This week, though... Holy smokes. I had a bad moment. What happened was that ...

July is coming up, which means…

May 15th, 2016

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Yes, it's here again - fundraising time... I know you were all waiting for this with bated breath (ha ha). For the third year running, our family will be doing the Walk for FOP this summer. The date this year is Sunday July 31, 2016, i.e., the Sunday of the August long weekend in Canada. Once again, we'll be co-hosting this event with Kathleen Degenhardt and her family. Kathleen is a young woman who lives in Saskatchewan, and just like my daughter Miranda, she has fibrodysplasia ossificans progressiva (FOP). Our goal is to raise as much money as we can to ...
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