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 ...

Stealth flares, or bone creep

October 8th, 2017

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Mystery, thy name is Fibrodysplasia Ossificans Progressiva. Indeed, there are so, so many strange and confusing things about FOP. My 12-year old daughter Miranda is experiencing one of those things right now... I call this phenomenon a "stealth flare". It's a flare-up which is different to the norm, in that it's missing many of the usual symptoms and is much more low key (sneaky, one might say). See, when we think of FOP flare-ups, there's typically a constellation of standard symptoms - significant swelling, pain, heat, sometimes skin redness and/or a "vein-y" appearance, and of course loss of movement. Over the years, ...

New equipment at our house – summer 2017

September 24th, 2017

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If there's one thing you learn about life with fibrodysplasia ossificans progressiva (FOP), it's that change is inevitable. Change in body posture, change in abilities, change in range of movement are all to be expected. And, when that change occurs, sometimes the person with FOP needs new aids to promote more independent living. This has been my daughter Miranda's situation in 2017. She developed a left knee flare-up in January, and since that time the flare has snaked its way up and down and around her leg. We think it's finally drawing to a close (or may perhaps even be finished), ...

An artsy summer

September 2nd, 2017

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Mid-spring is when we usually start planning our kids' summer activities. 2017, however, was shaping up to be a real pickle. For one thing, we were deeply enmeshed in selling our house and buying a new place, plus organizing for moving, and it was hard to think about anything else. For another thing, Miranda (age 12) was having the worst ongoing set of flare-ups she'd had since she was 2 years old, as Fibrodysplasia Ossificans Progressiva (FOP) moved its way up and down her left leg for months, and with no end in sight. I'm going to come out right ...

A visit with our friend Erin

August 27th, 2017

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Our Miranda was diagnosed with Fibrodysplasia Ossificans Progressiva (FOP) at age 2. At the time, we knew of no other children with FOP within a 12 hour driving radius. We had on-line connections with FOP families, but still, that was a lonely time. And then, along came Erin... Erin was born the same year as Miranda, a few months later, and was diagnosed with FOP not-quite-a-year after Miranda. And, of all amazing things, Erin and her family live in the Seattle, Washington area, just 3 hours' drive from our home! Needless to say, our two families jumped at the opportunity for a ...

We did the Walk 2017!

August 13th, 2017

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Our Walk for FOP fundraiser was last Sunday, and what a day it was... By way of background, the Walk for FOP is an event held every year in Calgary, Alberta by my family and the family of our friend Kathleen Degenhardt. The event is in honour of my daughter Miranda, who is 12, and Kathleen, who is a young adult; both of these gals have fibrodysplasia ossificans progressiva. The event raises funds for the Canadian FOP Network, a registered charity in Canada which supports FOP research. [caption id="attachment_3124" align="alignleft" width="800"] Erin, Ella, and William spelling FOP with their bodies![/caption] We were ...
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