Friends With FOP

We just returned from our summer vacation.  It was GREAT!  We had a wonderful time, and as the title of this blog indicates, Fibrodysplasia Ossificans Progressiva didn’t come on vacation with us.

OK, let me be more accurate – during the two weeks we were away, Miranda didn’t have any FOP flare-ups.  That’s a better way to put it, since precautions around FOP, at least, are an ever-present part of our lives.  That’s just a simple fact, and we’re kind of used to it by now.

We left for our vacation on Sunday, August 2.  First up was a trip to Calgary to visit my family.  Pete and I used to make that trip in 1 day, but with the kids, we spread it over 2 days, so stopped the first night in Revelstoke (after 7ish hours of driving).  The kids tolerated the drive as well as could be hoped, and no complaints from Miranda about her carseat – GOOD.  We had bought Miss M a new, more comfortable carseat earlier this year when we realized that the old one didn’t have much padding and thus could lead to discomfort on longer car trips due to rubbing on bony bumps on her back. 

We woke up the next morning and drove to Calgary, arriving around 3:30 PMish.  Almost immediately upon arrival, Miranda became reaquainted with her cousin Ella, who is about the same age.  The two girls got along famously!  At age 4, they were able to play together very well, better than they ever did in the past.  And, luckily my mom and dad (with whom we were staying) have a nice, soft plush carpet, so I didn’t have to worry much about Miranda’s safety in the house.

Here are Owen, Miranda and Ella playing a board game together.

Over the next week or so, Miranda, Owen, Ella and William (my brother’s little boy, age almost 2) also spent a great deal of time charging up and down the good-sized hill in my parents’ back yard.  A major attraction of the top of the hill was Baba’s (grandma’s) raspberry patch, and all the kids scarfed down a whole tonne of berries…  I was somewhat concerned about Miranda tromping around in the berry bushes because of all the tangles and potentials for tripping, but this was one of those things I just had to grit my teeth and let her do (under close supervision).

Here we have Ella, Miranda and William stuffing their faces.

The hill itself also causes me some worry.  Miranda insisted on walking up, and down, and up, and down, and up…  Just like Owen and cousins Ella and William.  And, on many of these trips, she wanted to of course walk on the uneven shale rock path which goes up the side of the hill.  I toyed for a moment with insisting an adult accompany Miranda each time, but concluded that would be impractical.  Finally, I gritted my teeth and just crossed my fingers that she’d be OK.  As it happened, she never tripped or slipped even once in the raspberries or on the hill.  Phew.

One day while in Calgary we took a trip to the zoo.  We knew this would involve lots of walking, so rented a wagon to pull Miranda around in when she’d get tired.  I often think her stamina mustn’t be too good due to the extra bone in her back – ie, core strength not the best.  To our great surprise, Miss M insisted on walking around the WHOLE ZOO!  This was at least 2 hours of walking, and she didn’t tire at all.  Go figure. 

The one time when FOP threatened to rear its ugly head was a day I went to a movie with my sister, and Pete and my parents took all the kids to a local park.  Pete took Miranda in the water park, and she slipped on some mud and leaves.  He was holding onto her and she didn’t fall, but she did wrench her (semi) good left arm and bawled her head off.  Pete iced it with one of those single-use cold packs, but those don’t get very cold…  We conferred a bit later, and decided to give her Prednisone.  Our Miss ended up taking it for 3 days, and fortunately there were no FOP consequences to that event.

After 6 days of wonderful visiting with family and some friends, we loaded up the minivan again and drove to Invermere, BC.  We had a condo reserved at the Panorama ski resort.  Of course you can’t ski in the summer, but there’s an awesome swimming pool and a mini-golf course – which is all you really need when you’re 4 years old and 7 years old like our kids.  ;-)

We spent 6 days in Panorama, and enjoyed some blissful relaxation.

When Miranda and Owen snuggled up together to watch TV, I had to snap this one…

Miranda wore her black “winter” headband in the pool, because it’s much thicker and we worry about all the concrete surfaces around there.  I’m always conscious of people looking at Miranda and trying to figure out what’s wrong with her, but I pretty much don’t care about that any more.  It was just great to see her enjoy the water so much.

My mom took this photo of the 4 of us at Bowness Park in Calgary. Summertime, and the livin' is easy...