Friends With FOP

Posted by Karen

Early this week, I got a phone call from the daycare – “Come pick Miranda up, she’s had a fall and is crying!”  This is the first time this has happened in 2 years of daycare attendance, so I figured it must be serious.  When I arrived, I found a sobbing Miranda with a gash on her forehead, and a big scrape on her nose.  I took her home, cleaned her up, bandaged her and gave her a dose of Prednisone.  Prednisone is the only known drug which MAY prevent a flare-up of Miranda’s Fibrodysplasia Ossificans Progressiva.

It looked pretty bad, and it was.  I felt kind of sick about it, and Miranda felt very sorry for herself.  That day, I found out how the accident had happened…  It turned out she had fallen on hard concrete.  Without going into too many details, it involved Miranda’s headband having ridden up on her sweaty little head in the July heat, a new teacher who hadn’t read the care plan and didn’t know she was supposed to be holding Miranda’s hand while walking on pavement, and a classmate enthusiastically pulling Miranda’s hand and trying to run with her.  (Aside – the daycare had a meeting later that day with the social worker in charge of Miranda’s program to ensure they have a plan for making ALL new teachers aware of the Miranda safety plan rules.  We’re satisfied the incident was taken seriously, and that the error is unlikely to be repeated.)

Miranda’s had major falls like this this before, though thankfully they’re getting more rare as she grows older.  Whenever it happens, we spend several days anxiously watching her to see if Prednisone will be effective, or if a new flare-up will result.  Miranda almost always falls on her front, as she did this time, which makes me worry that she’s squished her arms and will develop flare-ups which further limit her already restricted arm movement.  Or, maybe even worse, that she’ll end up with a flare-up which locks her jaw in place.  In our experience, it takes about 6 to 8 days for a new flare-up to appear, so we knew we had about a week to watch for flare-ups before knowing we’re in the clear.

So, we could sit and chew our fingernails and worry, and bring everything to a halt…  But, what good would that do?  None at all.  If FOP is going to happen, it’s going to happen, so we may as well go ahead with whatever plans we have.  In this case, we had planned to try camping this weekend, for the first time since either of our kids were born (Miranda is 5, and her brother Owen is 8).  We didn’t even consider calling it off.  Instead, we simply packed up as we had planned, and drove to Cultus Lake Provincial Park this past Friday night.

It turned out we had a really great time camping.  We tried out our new tent, and found that it worked just fine.  Over the next day and a half, we went swimming in the (cold!) lake, played mini-golf, ate ice cream, roasted marshmallows and made smores, told ghost stories (kid-friendly ones) and went to a waterslide park. 

Miranda on the beach at Cultus Lake, her favourite part of camping (despite the icy cold swimming water!).

What a wonderful getaway it was…  This was just a short trip, but it was so much fun.  This is not to say that we’re not still watching our sweetie for a tell-tale FOP swelling, because we are.  But, we’re doing our best not to let the frustrations of FOP interfere with doing what we want to do.  It’s the difference between ”coping with our FOP child” and “enjoying our Miranda, who happens to have FOP”.

Me and my gal by our tent.