• 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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The saga of the vehicle

April 7th, 2018

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We're in the process of getting our first ever wheelchair-accessible vehicle. As with so much else concerning our daughter's fibrodysplasia ossificans progressiva (FOP), it's been a long drawn out process... It all started last summer when Miranda, then age 12, had a major FOP flare in her left leg. Prior to that point, we had known that a wheelchair-accessible vehicle was in our future, but it was kind of hazy, far off in the distance. And then, when Miranda's left hip and knee became entirely fused in 2017, it suddenly became much, MUCH harder to get our daughter in and out ...

To sleep, perchance to dream

March 24th, 2018

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Miranda's bed is the latest headache in our house. Honestly, this came as a big surprise to me. I knew that once my daughter Miranda developed hip restrictions due to fibrodysplasia ossificans progressiva, walking would be an issue and we'd have to get her a wheelchair. It never occurred to me though that Miranda would have trouble getting in and out of bed... (Maybe this is one of those "duh, what did you expect?" things, but there you have it.) Miranda currently has one good hip, one good ankle, and zero good knees (by "good" I mean with unrestricted movement). As it ...

A wheelchair is not confining

March 10th, 2018

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There's an expression often thrown about in the media, which is that such-and-such person is "confined to a wheelchair". Before my daughter was diagnosed with Fibrodysplasia Ossificans Progressiva (FOP), I never thought much about this phrase. Now? Different ball game. So what's wrong with saying "confined to a wheelchair"? In a nutshell, it's inaccurate and comes from an ableist perspective. Look at it this way - if you're saying someone is "confined to a wheelchair", it sounds like you're suggesting that the wheelchair itself is somehow trapping the person. As in, if you are convicted of a crime and sent to ...

February and FOP at our house

February 17th, 2018

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I'm not going to lie - February at our house has been all about watching a certain South Korea-located international sporting event on TV (GO CANADA!!). But, you know, working around the Olympics, we've also been dealing with a few things related to fibrodysplasia ossificans progressiva (FOP). In fact, it's been kind of a busy month. The first thing was that several days ago, I was gearing up to attend the annual "in person" board meeting of the International FOP Association. This was to be my fourth one in as many years, but this year, for the first time, it was being ...

Yep, that’s high school there in the distance

February 3rd, 2018

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This past month we took the first steps to get Miranda ready for high school. Part of me knows she's absolutely ready for it, while another part says WHAT HAPPENED TO MY LITTLE CHILD?? Parenthood, it was ever thus... In my kids' school district, students do kindergarten through grade 7 at elementary school, and then grade 8 through 12 in secondary (high) school. Transitioning to high school is a big and kind of stressful thing for any kid, but there's lots more to think about when the student is dealing with fibrodysplasia ossificans progressiva (FOP). We want this to go as ...

Miranda is now 13 (a teenager, GASP)

January 20th, 2018

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This past week my daughter Miranda had her 13th birthday. It blows me away that she is a TEENAGER! I don't have any more little kids, for absolute reals. It's been my habit with this blog to mark Miranda's birthday each year by talking about the person Miranda has become. Why break with tradition? Especially since the 13th is something of a milestone. And so, I'd like now to tell you all about Miranda... Of course, since the focus of this blog is life with Fibrodysplasia Ossificans Progressiva (FOP), it makes sense to start there. Yes, Miranda does have to cope with ...

FOP in 2017, and hopes for 2018

December 31st, 2017

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Today is the last day of 2017. Phew - 2017, don't let the door hit you on the way out. OK, maybe I exaggerate a bit. In fact, in some ways this was a good year for fibrodysplasia ossificans progressiva (FOP). Looking on a broad scale, 2017 definitely had some positive developments. It's just that speaking more personally, this year was abysmally bad for my daughter. She isn't the only one either; a number of our friends with FOP were hit hard by the disease. Starting with the bad... We weren't far into January last year when Miranda told me, hesitatingly, that ...

San Francisco family conference

December 10th, 2017

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I spent last weekend in San Francisco! Well, really I was in a hotel the whole time, but the hotel was IN Frisco... Why was I there? It was for the IFOPA's 2017 Family Conference. This was a chance to learn the latest on Fibrodysplasia Ossificans Progressiva, and maybe more importantly, to connect with friends in the FOP community. The conference went from Friday evening through mid-Sunday. Sadly it was just me from my family; husband and kids stayed behind (we had just WAY too many expenses this year, what with moving and so forth, for us all to go). I flew ...

November at our house

November 26th, 2017

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Hi friends. Sorry about not posting the past couple of weeks; things got in the way. But anyway, here I am, and here's some recent stuff going on at our house... Last weekend was a bit of a momentous event. Specifically, Miranda went to a movie last Friday night - with only two friends and NO PARENTS in attendance. This is a typical activity for 12-year-olds in this day and age, so why not Miranda? Fibrodysplasia Ossificans Progressiva shouldn't rob you of all fun. It was actually pretty safe; I drove the girls to the theatre to see Wonder (incidentally, this ...

Miranda’s Halloween – new challenges

November 4th, 2017

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Hi friends, I'm back again! Sorry, didn't post anything for a little while there; was intensely busy with a major work project (now finished). Despite my big work thing going on, I recently enjoyed Halloween with my girl Miranda. At the age of 12, and in grade 7, she figures this will likely be her last year trick-or-treating (age 12 was also her brother's last year, by his choice). I doubt that this will be her last year coming up with a costume, though - she LOVES figuring out a cool costume and getting all kitted out for it. This year Miranda ...
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