• An experiment in letting go (a little bit)

    July 1st, 2013

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    Posted by Karen Yesterday we got back from 2 days at Girl Guide Camp.  Yes, I attended with Miranda, the way I did the past 2 years.  There are always a number of mom volunteers, so having one more along for the ride doesn't cause anyone to blink an eyelash.  This year though, we handled it a bit differently than we did in the past... This is Miranda's third year in Girl Guides, and it's necessary for me to attend camp with her.  The girls are supposed to be able to dress themselves and use the bathroom on their own, neither of which Miranda can do ...
  • Stuff leading in to summer…

    June 23rd, 2013

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    Posted by Karen I must say, I am SERIOUSLY looking forward to July...  Because almost all my kids' activities will be finished.  ;-) Between Miranda and her brother Owen, I was seriously run off my feet this week.  Especially this weekend.  Get Miranda's schedule yesterday - first it was the end-of-season softball wind-up, then the end-of-year Brownies picnic, then a classmate's movie/bowling birthday party.  We didn't get home until 8 PM. Miranda was in typical form yesterday - and by that I mean unbelievably full of energy.  Fibrodysplasia ossificans progressiva?  Ha, what's that and why would it make me tired or affect anything I ...
  • I am so not good at…

    June 16th, 2013

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    ...Fundraising.  In fact, one might say that I'm pretty pathetic at it.  Big old lameosaurus, that's me. Yes, I suck at it, and yet I can't throw my hands in the air and give up.  I am compelled to fundraise because of how breathtakingly close we are to clinical trials for drugs to treat fibrodysplasia ossificans progressiva (FOP). [caption id="attachment_2085" align="alignnone" width="225"] Our dear Miranda, our reason for FOP fundraising[/caption] I blogged last weekend about the Canadian FOP Network's conference the week before.  At that conference, we heard from the amazing scientists at the University of Pennsylvania about the pace of research for effective ...
  • Canadian FOP conference, 2013!

    June 9th, 2013

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    Posted by Karen It’s over…  WAAAHHH!!  Gulp.  Sniff.  I’m sad that it’s finished and I’m not there anymore. “It” was the Canadian FOP Network’s conference last weekend.  It was so great, and felt so dang short.  It was only a day and a half long, and it went by in the blink of an eye.   But on the other hand, I have lots of great memories from it, so I guess I milked everything I could from it.  ;-) So here’s how it all went…  A week ago Thursday, my daughter Miranda and I got up bright and early in the morning and ...
  • “LUCKY” to have FOP?

    May 26th, 2013

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    Posted by Karen OK, of course everything's relative.  Obviously I don't mean that anyone is lucky, period, to have Fibrodysplasia Ossificans Progressiva.  That bit is pretty much the opposite.  What I mean is that in comparison to the situation for many, many other rare diseases, people with FOP are lucky. Here's what I mean...  One of the biggest problems faced by people with most rare disease is that there are no cures, no treatments, and not even any research going on.  If you're a scientist and you could research, say, cancer, which afflicts millions of people, or a rare disorder that has a ...
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Philosophy and FOP

August 21st, 2016

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A few weeks ago, someone made a strongly worded comment on one of my blog posts. In my post, I had mentioned about how much I hated fibrodysplasia ossificans progressiva. My commenter called me out on this, stating that she wondered how my daughter Miranda(now age 11) would adapt as she grows, knowing that I hate something which is a part of her. Ouch. I have to admit, this kind of knocked the wind out of me. And yet, the comment did get me thinking... Since then, I've been sort of turning this issue over and over in my mind at random ...

Summer challenges

August 14th, 2016

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Just a few days ago I was chatting with one of my neighbours. We got to talking about what our kids are doing this summer, and she told me about a summer day camp which her kids had attended. She thought this camp was great, and that I should consider it for Miranda next year. I didn't say much - just smiled politely. You see, getting summer camps sorted out for kids like my daughter, who has a disability, requires some effort. Because of Miranda's fibrodysplasia ossificans progressiva, I can't just register her for any old thing and then have her ...

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 ...
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