Friends With FOP

Posted by Karen

As I told Miranda the other day, she is now “such a big, big girl!”  Preschoolers love to hear that stuff…

Friday, January 15 was Miranda’s fifth birthday.  Five years ago Friday, I woke up and wondered, “Geez, this kid is now 6 days late.  Maybe today is the day??”  That evening, I laid down to sleep with a new, sweet baby girl beside me, and she was perfect.

I remember that the next day, as I was discussing my baby with my midwife, she pointed out that Miranda had oddly bent looking big toes, and that her thumbs also didn’t bend outward much from her palms.  I remember thinking, why all the fuss?  Aren’t all babies kind of scrunched after the ordeal of birth??  At that point, of course I had no idea that those symptoms are characteristic of Fibrodysplasia Ossificans Progressiva. 

In fact, we didn’t learn about FOP until Miranda was 2 years, 3 months old.  She had been symptomatic with repeat head swellings for the previous 9 months, and with neck and back swellings for 1 month by that time.  In retrospect, it would have been good to have the diagnosis a few months earlier, but anyway I am profoundly grateful that we spent one and a half years with no suspicious signs (other than the bent toes and thumbs).  Miranda’s baby year and the first few months of toddlerhood, at least, were completely normal.  Good memories…

Anyway, fast forward now to Miranda’s fifth birthday.  Speaking of FOP, I’m glad to say (knock on wood) that Miranda has no flare-ups right now, and hasn’t for a few months, which means we could thoroughly enjoy the birthday with no distraction. 

The celebrations spanned two days, Friday and Saturday.  On Friday, Miranda woke up at, I don’t know, 3 AM or something silly like that.  I had to firmly tell her that it was TOO EARLY TO WAKE UP!!  I had to repeat that every hour for the next 3 hours, then finally gave up at 6 AM.  Finally, upon awakening, Miranda vaulted out of bed and shouted to wake up Owen (Dad was already at work).  We all went downstairs, where Owen helpfully retrieved Miranda’s wrapped presents and brought them to her.  In short order, she ripped her way through all but one present; we had told her she had to save one for when Dad gets home.  She got some loot she was pretty happy with, including an authentic Team Canada Olympic hockey Jersey from her Baba and Grandpa Mal in Calgary!  (Actually, Owen got one of those too for his birthday, and though his big day isn’t for 2 more weeks, we let him open his that day too – the jig was kind of up.)

The kids in their jerseys... Typical Miranda with eyes closed (I couldn't get them to pose again, so this pic was the only one I got).

I had the day off work Friday, as I always do, and we had some stuff planned, but first we had to drop Owen off at school (which we did), and then I had to take care of about 15 minutes of work-related tasks.  I went downstairs to my office, leaving Miranda to watch TV.  I was on the phone with my client, not 5 minutes later, when Miranda came downstairs excitedly holding the final gift, which she had just unwrapped!!  What a monkey…

That morning we did a swimming lesson with Miranda’s physiotherapist, and bought some ingredients to bake her birthday cake.  We then picked up lunch at Subway (Miranda’s choice) and went home.  After lunch, we baked a super-delicious chocolate cake which we’ve made many times before, picked up Owen from school, and then killed some time ’til Dad came home.  Pizza for supper from our local pizza place rounded out the day.

Yesterday, Saturday, was party day.  Miranda had 7 little friends and her Farmor (Danish grandma) come over.  First, the girls played with a bunch of Miranda’s toys.  A big hit was Miranda’s new “Grinch” board game, in which you have to sing REALLY LOUD so that a sound-sensor responds to your voice by sending a plastic sleigh full of plastic presents crashing down the side of a cardboard Mount Crumpet.  Oy, that was noisy…  Then we had lunch, which was hot dogs, hamburgers, fruit and chips, and of course the cake.  After lunch it was present unwrapping, and then a quick game of “pin the flower on the Tinkerbelle fairy” (yes, that game has evolved ).  Finally, the kids all went home, loot bags clutched in their sweaty little fists.

Miranda blowing out her candles.

Miranda’s 5th birthday was lots of fun, and very typical (which is one reason why it was fun).  I’m hoping this birthday was a sign of what the coming year will be like – positive experiences and no FOP complications.  It’s going to be a big year for Miss M, starting kindergarten this coming September and finally being a school-aged kid.  Please wish us luck for the coming year.