Friends With FOP

By Karen

Anyone who’s been following this blog for a while knows that we try to let Miranda have as normal a life as possible.  If this means doing things that have some degree of risk for a person with Fibrodysplasia Ossificans Progressiva… well, so be it.  It also means that every now and again, fate is going to call our bluff.

That happened to us last weekend.  It was my mother-in-law’s birthday, and since it was a beautiful day, we were spending a day with the grandparents walking at the Reifel Bird Sanctuary in Delta, BC.   The day started out well.  We bought each kid a bag of seeds to feed the birds with (they sell them at the entrance, so no, we weren’t illegally corrupting these birds , and then started out on the walk.  We weren’t much into the walk when we stopped for a couple of minutes to admire some ducks and throw around some seed.  I was looking at a stream to my left, when suddenly I heard that sound I’ve come to dread:  WHAM.  (pause…)   WAAAAAAHHHHH!!!!  I whipped around, and there was Miranda face first on the gravel path.

Of course, I hurried to pick her up and comfort her.  I was in the process of hugging my poor, bawling child when I realized my mother-in-law was trying to get my attention.  She pointed to Miranda’s forehead.  I saw that Miranda’s “protective” (on this occasion, not so much) headband had been bumped up on her head, and she had a copiously bleeding cut at her temple.  It was just GUSHING blood. 

Of course, when Miranda saw her own blood, she started screaming uncontrollably.  Oy oy oy…  Somehow we got her under control, however, and hunted frantically for some first aid items.  We got a cloth to staunch the bleeding with, then sent Miranda’s dad Pete hurrying back to the car for the first aid kit.  Miranda’s screaming abated a bit, but not completely, and we finally got a couple of bandaids applied.  I actually thought this cut might be so deep it would require stitches, but the bleeding did stop, after we put some pressure on it for a while, so the bandaids were able to hold and do their job.  Then, of course, we did the obligatory 10-ish minutes with an instant cold pack (which we always carry in our backpack) held to Miranda’s head.

I’m sure people must have wondered what on earth was going on, with Pete sitting on a bench, Miranda on his lap crying loudly, and me pressing a cold pack to her head.  Sigh.

At one point during this mess, I suddenly wondered where Miranda’s brother Owen had gotten to.  I got my father-in-law to go looking for him, and I learned a bit later that he found him, acting bewildered and scared, staring into a fish pond nearby.  Apparently he had been pretty freaked out by the sight of the blood streaming from Miranda’s head, and just kind of bolted.  Poor guy.

Anyway…  After a while, we got Miranda patched up and calmed down, and tried to figure out what had happened.  I asked her, and she said she had just tripped.  I looked around, and couldn’t see any obvious tripping hazards, so concluded that it was probably just one of those things…  She stumbled over her own feet, and went down like a tree.

I’ve commented before that when Miranda falls, she goes down hard.  As a result of previous flare-ups, she has no forward/backward motion in her shoulders at all, so can’t get her arms forward to brace herself.  Also, her spine is almost completely fused, so she also can’t bend her back and arch her head up.  Her head is angled slightly forward, and a smidge to the right, so whenever she falls, she always hits her head on the same spot – the left side of her temple.   As Miranda grows older, these head bumps have become less and less common.  However, she’s obviously not past them.

So what did we do after that?  Pack up and go home?  Nope.  When all was calm, we carried on with our walk.  After a few minutes, Miranda regained her previous happy mood, and starting having fun pointing out ducks and various interesting birds.  By the end of the walk, all was completely well, and we headed off for lunch at a fish and chips place.

Typical Miranda shot - eyes closed in a photo

I’m happy to report that, luckily, Miranda had no FOP flare-up on her head as a result of this fall.  It so happened that just the previous day, she had finished the last of 4 days of Prednisone to treat the huge swelling caused by her H1N1 immunization, as discussed in my previous blog, so there was probably lots of the stuff still affecting her system.  We added one more dose of Prednisone that night, last Sunday, and her head never did swell up (incidentally, if Miranda is going to have a head flare, it happens right away or not at all – on the rest of the body it might take up to 10 days to appear).  The only related consequence we had to deal with later that week was peeling the bandaids off the hair they had stuck to on Miss M’s head – that wasn’t much fun either, but better than a flare-up.

So…  What’s the moral of the story?  Is it that we should keep Miranda safely sequestered at home, sitting on the couch and watching TV?  I don’t think so.  What kind of a life is that?  I’ll tell you what kind; it’s a crappy one.  I think the moral is that every once in a while, FOP will rear it’s ugly head and cause an incident, but we just have to adapt and accept that it’s part of life.  We try to minimize risk, such as by having Miranda wear her protective headband, but on occasion it will get displaced by a fall and she’ll hurt herself (it’s worked as designed on numerous other occasions, just not this time). 

We can’t eliminate risk altogether, but we’re not going to squelch Miranda’s joy in life just because of FOP.