Getting a “leg up” on a difficult situation

Posted by Karen - June 8th, 2014

Posted by Karen

This past week has truly been one of our most challenging since Miranda became symptomatic 7 years ago with Fibrodysplasia Ossificans Progressiva.

The drama all started last Saturday night. It had been a beautiful day, and after being out and about doing activities, we capped off the evening with a board game. After we finished, Miranda stood up, turned around and promptly tripped over the base of her chair, which sent her sprawling to the floor. She was HOWLING like a banshee, let me tell you… Needless to say, I immediately got down to help her and find out if she’d hurt herself. Turns out she did, indeed – she was bawling about her lower leg. So, we got her up and sat her on a (different) chair, and went to have a look.

I have to say, that injury didn’t look like much. There was no swelling, no bruising, really no anything. However, Miranda said it was hurting her, and she clearly didn’t want to put much pressure on it. We did the usual in such instances, which is to immediately ice it with a cold pack, and resolved to start a 4 day prednisone regime the next morning (doctors say it’s best to take it in the morning). With some difficulty, we hobbled Miss M upstairs to her bedroom.

The next day I had a look at the leg… And still it didn’t look out of the ordinary. Still no visible signs of injury. But, as Miranda was still unable to put pressure on it, we figured she must have a mild ankle sprain. We got her down the stairs to our main floor doing a “bum scootch” procedure, then again helped her wince her way over to a chair for more icing (and the first pred pill). All that day, we tried to encourage Miranda to put weight on it, but she really couldn’t – which started to concern us. Ultimately we figured we should have our family doctor look at it, so the next day, we made an appointment for Tuesday morning.

My husband Pete took Miranda to the doctor that day, just after I got home from running off to rent a manual wheelchair. The doctor noted that Miranda’s pain didn’t actually seem to be in the ankle, but a couple of inches above that. She recommended an x-ray, just to be safe. Accordingly, Pete schlepped M off to Children’s Hospital, where an x-ray revealed: a hairline fracture of the tibia (shinbone), indeed just a bit up from the ankle. The ortho surgeon on duty in Emergency wrapped up Miranda’s leg in a sort of soft cast from the tip of her toes to mid-thigh, and said she had to not bear any weight on the leg.

Miranda leg cast 08-06-2014 8-50-34 AM

Holy smokes, I was very surprised by this turn of events. I mean, there was no swelling/bruising/signs of any kind other than pain upon standing and an inability to bear weight! Go figure.

Ironically, the fact that Miranda’s injury was a hairline fracture rather than a sprain is a good thing. FOP doctors have observed that for whatever bizarre reason, when people with FOP suffer bone fractures, they don’t usually develop FOP flare-ups the way they often do with soft tissue injuries. Possibly this has something to do with the different chemical micro-atmosphere surrounding a bone break as contrasted to a strain?? (nobody actually knows why, all just theories) Anyway, we were reassured that an FOP flare-up probably wouldn’t happen, but we decided to carry on with the prednisone regime just to be safe.

Once Pete got Miranda home again, the fun really started. You see, we live in a townhouse, one where you enter on the lowest level of the house, go up one set of stairs to the living room/dining room/kitchen, and then up another set of stairs to the bedrooms. All of this meant that we had to devise some way of getting Miranda up all those stairs with a leg stuck stiffly out in front of her and which can’t take any weight.

Now, let’s say Miranda was a typical kid without FOP. Probably she would hold on to a stair railing with one arm, have the other arm around a parent’s waist or neck, and manage to manoeuvre up the stairs in an upright position. Uh, no, Miranda can’t do any of that. Because of old FOP bone in M’s neck, back, shoulders and elbows, she holds her arms tightly to her side and can’t use them to help herself up the stairs. And so, we discovered that to get our girl up, we have to sit her on a stair, then sit down beside her and awkwardly lift her torso up the steps one at a time.

This stair business is NOT easy. The first time we tried it, it took us close to half an hour to get from the bottom to the top, though with practice we’ve reduced that to ten minutes (including the time necessary to fold up the wheelchair, drag it upstairs and transfer Miranda into it at the end). Clearly this was not going to be do-able more than a couple of times per day, tops. Oh, and did I mention that we have no bathroom on our main floor? Off I went the next day to get a commode, plus a leg extension for the wheelchair.

Throughout all this, Miranda has been a real trooper. Luckily she had no pain to speak of after the first evening, but she was pretty stressed out for the first couple of days. Still, she hasn’t been griping or complaining, and after the end of the prednisone – which makes people a bit cranky – she was back to her usual sunny mood. What a good kid; honestly we are so lucky in that regard. She’s coped well at school, too, though she’s had to go in the wheelchair – and in the end she only missed Monday and Tuesday (and Tuesday was off anyway due to BC teachers’ job action, a whole other story).

In all likelihood, this leg fracture will turn out to be just a “blip” in Miranda’s life, and will leave no permanent consequences. What it has been, though, is a major eye-opener for us. It’s painfully apparent to Pete and I that if/when FOP ultimately renders Miranda unable to climb stairs due to new bone formation in her legs, our current home is not going to work for us. We’re going to need a house with a full bath, at least one bedroom, a living room and a kitchen all on the same level as an entry. I mean, we obviously knew this before… But this experience is really giving us a taste of the probable future. Major food for thought and possible action over the next couple of years.

What’s next with this leg saga? We have an appointment again this coming Wednesday at Children’s Hospital, about 1.5 weeks post-injury, to see how the leg is healing. If all is going as expected, the doctor will remove the full-leg cast and replace it with something just below the knee (though not sure when weight-bearing can start). Having a shorter cast should help improve Miranda’s mobility, at least to a modest degree, so we’re definitely keeping our fingers crossed. As for full recovery, that’s apparently about 6 weeks. Hoo boy, more adventures ahead…

Wheelchair 08-06-2014 9-36-35 AM

Miranda, wheelchair parked next to her armchair.

PS – In the midst of all this, we’re still fundraising for our Walk for FOP on July 26th! If you’d like to donate on-line to help our cause, please go to our website at On our site you can donate to a specific campaign for our kids, Owen and Miranda, or for Pete and I – we’re having a competition to see who can raise the most money! Just click on “donate to participant”, and take it from there. In the alternative, you can send me a cheque made out to the Canadian FOP Network – especially for larger donations, this saves on the credit card fees – just reply to this blog post and I’ll contact you privately with my home address. Thanks!




2 Responses to “Getting a “leg up” on a difficult situation”

  1. Marilyn Hair says:

    Oh, Karen, so sorry to hear about this complication. I hope Miranda heals quickly & with no complications! Hugs from our family!

  2. Blair says:

    Well this simply blows. I never thought about the stairs issue. Very glad to hear Miranda’s not in any significant pain; that’s something at least. Wish there was some way to help (aside from donating to the ride, which I will definitely be doing)…

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