Life with FOP and a leg fracture

Posted by Karen - June 22nd, 2014

Posted by Karen

Last night (Saturday) marks exactly 3 weeks since my daughter Miranda tripped and bashed her leg into a chair in our dining room, fracturing her shin bone. As fractures go, it was a minor one – just a hairline crack – but the consequences of the break have been seriously difficult.

The first part was of course the worst. For the first 10 days after the accident, Miranda had her leg wrapped from mid-thigh to toes in a soft cast, and she had to keep it sticking out straight in front of her. This made just about everything difficult – sleeping, clothes, moving around, bathroom, school, and we had to keep Miss M in her rented wheelchair most of the time. While this scenario would be tough for anyone, it was twice as hard because of Miranda’s Fibrodysplasia Ossificans Progressiva. Take stairs, for example…

I believe I mentioned in my last blog post that we live in a townhouse with 2 sets of stairs, from the entry level to the main floor and then up to the bedrooms. And as I also described in my last post, this meant hauling our poor girl up the stairs by sitting on each stair beside her, placing one arm around her back and the other arm under her legs and lifting her up a step at a time. In the beginning, this took me literally HALF AN HOUR to accomplish. Why do it this way? Well, due to good ole’ FOP, Miranda has extra bone in her shoulders and elbows and as such can’t move her arms out to hold on to an adult or a stair railing. And so, moving her like a sack of potatoes it was (sigh). Getting Miranda up and down onto her wheelchair, her bed and the stairs also involved grabbing her and moving her in awkward ways. Frankly, I was worried that this would lead to an FOP flare-up, not in the leg, but in some other body part impacted by our clumsy manoeuvering. Sadly, that’s what did happen – by about day 9 after the injury, Miranda was upset about pain her lower left ribcage, and it turned out to be a swollen and angry looking flare-up.

As this was Miranda’s first obvious flare-up in a long time, we opted to treat it with Ketoprofen ointment, a new-ish anti-inflammatory medication recommended by our FOP doctors. Unfortunately, within a day or so, it became evident that Miranda had developed an itchy rash in reaction to the Ketoprofen. We promptly stopped that and started her old stand-by, Celebrex pills, instead.

Aside from the flare-up, things got better after the first 10 days. The 11th day was Wednesday, June 11, when we had an appointment with the orthopedics department at BC Children’s Hospital, where they re-Xrayed Miranda’s leg to check the healing progress, and then removed the cast and replaced it with a small lace-up ankle brace. The doctor told us that but for FOP, they would have put Miranda in a hard plaster below-the-knee cast which she would have eventually been allowed to walk on, but due to the risk of a swollen FOP flare-up caused by the trauma to the lower leg, the doctor felt that the ankle brace (which can be loosened and tightened) was the way to go.

Ankle brace 11-06-2014 6-22-20 PM

When they took off the big cast, I could see that Miranda had some swelling around her foot/lower ankle, which of course prompts worries that there was a flare-up occurring. However, it didn’t really seem characteristic of a flare-up (eg, wasn’t extremely firm and didn’t hurt); I think it was just some residual swelling from the trauma of the incident itself.

Anyway, it’s definitely been easier with the smaller ankle brace. Though Miranda still had to remain non weight-bearing for the next two weeks, she could at least bend her knee and move her leg around. This had helped with things like getting her up and down those dreaded stairs, and in and out of cars, etc. As for the rib flare, it remained big, swollen and painful for a few days, then stayed swollen but was painful only when touched, then started to shrink a little bit each day. It’s still there, but not a major concern.

O & M Bby Mountain 20-06-2014 6-52-14 PM

Hanging with brother Owen, and not letting stupid broken legs and FOP flare-ups stop Miranda from getting out and about.

At present, we’re going about normal activities as much as possible, and counting down the days until this coming Wednesday. June 25 is the day when Miranda is finally allowed to start putting weight on her left leg, and start trying to walk again. Getting Miss M up and on her feet again will be a big relief.

Puppy dog face 21-06-2014 5-15-33 PM

Miranda with puppy dog face paint from a local fair yesterday.

Random observations from the past 3 weeks:

– Miranda’s friends and other children, upon seeing her in a wheelchair for the first time, would take a look at her, and then instead of talking to her, they’d look up at me and say, “What happened to her?” – as though Miranda had somehow lost the power of speech and thought along with the ability to walk. Ouch. That said, kids accepted it pretty well once they realized that Miranda could, indeed, still talk and was still the same kid.

– Our house is NOT wheelchair accessible. At all. We expect not to be using the wheelchair for too much longer, but FOP is a cruel and unpredictable beast which could make it suddenly necessary. We need to plan for short-to-medium term alterations to our home, and for the longer term, a move to a new house.

– Using a wheelchair in a house which is not accessible causes caregivers very tired and tight backs…

Please wish Miranda a speedy return to normal leg use.

PS – Please donate to our FOP fundraiser, the Walk for FOP, which will take place on Saturday, July 26, 2014, at Calgary’s beautiful Baker Park! All proceeds will go to the Canadian FOP Network, which provides funding for FOP research. The CFOPN has very low overhead and no staff, so almost all funds raised go directly to research. To donate on-line, go to www.walkforfop.com, or alternatively, send me a cheque made out to the Canadian FOP Network (better for donations over $100, so as to save credit card charges – post a comment to this blog and I’ll contact you with my address).  Thanks!

 

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