Friends With FOP

Posted by Karen

Yesterday we returned home after a really terrific summer vacation.  We had been away for just over 2 weeks, spending the first week in Calgary with my family, and spending the second week at a condo we booked at the Panorama Mountain Resort.

As I commented in my last blog entry, I think my daughter Miranda really needed this vacation, given all the extra appointments we’ve had to do recently to get her ready to start kindergarten this fall.  It was time for Miranda to get away from all the focus on her Fibrodysplasia Ossificans Progressiva.  Fortunately, everything worked out really well, and we had only one incident, just at the end of our trip, which caused any focus on FOP.

During the first part of our vacation, Miranda had an absolute blast running around and having fun with her brother and Calgary cousins.  My parents have a big backyard containing a hill covered with grass, and a garden and berry patch on top.  Every day, there was Miranda up and down the hill at least a dozen times, and not once did she trip, fall or lose her balance (phew, thank goodness).  She even successfully navigated my parents’ uneven, irregular shale stone path up to the garden – every time she took that path I kind of held my breath, but she never once stumbled.

Miranda also did exceptionally well on some pretty significant day trips.  While we were in Calgary, we visited the Calgary Zoo, the Royal Tyrell Museum in Drumheller and the Calaway Park Amusement Park.  All of these outings involved A LOT of walking, but Miranda never complained or said she was too tired.  This is always a worry for us, because presumably she has less core strength due to lots of ossification of her back muscles, but to look at Miranda go, you’d never have known she had any such weakness….

Here's Miranda riding in a wagon at the zoo with her cousin, Ella. OK, so she could rest a bit there, but she really was OUT of that wagon more than she was in it...

During the second phase of our trip, we spent part of every day in the fabulous pools at the Panorama Resort.  This was RIGHT up Miranda’s alley.  She just loves to swim.  She can’t do it independently yet; we always put a life jacket on her and she also uses a “pool noodle” as well, but her skills are steadily improving and I think a time will come when she can swim on her own, even despite her limited arm movement.

We did some other stuff too while in Panorama, though it seems to me it was mostly swimming (ha ha).  One day, we went to poke around the national park which contains Radium Hot Springs.  While my husband Pete took our 8 year old, Owen, on a challenging hike into a canyon, Miranda and I made our way along a path with some amazing, breathtaking views.  Again, Miranda handled all this walking very well, with no trouble.

And then, on the second last day of our trip, we had to think about FOP again.  We were driving across British Columbia to return home, and on the way to our destination in Merritt, we stopped at an old favourite, the “Enchanted Forest” just outside Revelstoke.  This is a gentle walk carved into a forest on a mountain side, with dozens of hand-carved and crafted figurines from fairy tales and nursery rhymes placed throughout the walk.  The path really is quite modest, posing only moderate challenges.  And yet, of course the inevitable happened…  While Pete and I were looking away from Miranda at other things, she somehow managed to trip and fall forward onto the path.   There was nothing to trip on – she just…  Fell over her own feet.

This is so typical – Miranda at age 5 will now go for days and days navigating difficult terrain and successfully meeting big challenges, and then suddenly fall when we least expect it.  I guess this is a good reminder for us to try hard not to get complacent about Miranda’s safety…

Anyway, Miranda cried initially very hard, and I noted scrapes on her knees and her good left elbow.  Fortunately, she had been wearing her headband, and it worked well and protected her head, so she didn’t get any trauma to the head.  Usually, if Miranda cries hard, we take that as a sign we should dose her with Prednisone in hopes of avoiding flare-ups.  However, this time the crying stopped pretty quickly, and since the impact didn’t seem to have been too severe, and given that she’s had Pred a couple of times in the last few months, we made the hard decision (given the risk to her left elbow) not to administer it again. 

In any event, after Miranda stopped crying after her fall, she carried on with the rest of the walk through the Enchanted Forest, and she seemed to shake off any lingering upset about the fall pretty quickly.

Here's Miranda posing with a statue of Snow White.

(NOTE - 2 days later, we don’t see any signs of FOP flare-up, but we won’t be in the clear until about 8 or 9 days have passed.  Still, we’re not too concerned about this fall…  Hopefully we judged it right.)

OK, so Miranda falling at the Enchanted Forest wasn’t fun, and we could have left that part out, but over all the vacation was wonderful, and a great diversion from lots of thinking about  FOP.