Friends With FOP

Posted by Karen

The title of this blog is exactly what I heard on Thursday morning this week, just as I was about to go and tell the kids it’s time to get jackets on and head to school.  Those kinds of sounds are never good…  In this instance, I was in the kitchen and the kids were in Owen’s bedroom.  I quickly rushed up the stairs and was met by Miranda, bawling at the top of the stairs with blood coursing down the left side of her face.  This was definitely NOT GOOD.

I hurried my gal into the bathroom to figure out where the damage was.  My heart pumping fast, I calmed her down and wiped some of the blood away to see what had happened.  It turned out Miranda had a crescent-shaped gash, about a centimetre long, on the left side of her forehead. 

I had to think fast about this.  Would it require stitches?  There was an awful lot of blood, with a trail of it running across the carpet and into Owen’s room.  However, as I was looking at it carefully, I realized it was no longer actively bleeding.  I made the decision to clean it up and try to handle it with bandages.  I’m sure that stitches are something which should be done only if absolutely necessary on a kid with Fibrodysplasia Ossificans Progressiva.  Sounds like a great way to prod the FOP beast into action… 

I then tried to piece together what had happened.  It turned out that Miranda had been visiting Owen in his bedroom, uninvited may I add, and that he had his hockey cards and card binders spread all over the floor.  When she turned to leave the room, she stepped on a binder and it slid across the floor, causing her to fall forward and hit her head – probably on the ring of said binder.  She wasn’t wearing her protective headband at the time, as she generally doesn’t wear it in the house.

And so, I then told 9 year old Owen to walk himself to school, and to stop by the kindergarten classroom and tell the teacher that Miranda fell and hurt herself, and might or might not be in later that day.  I then set about cutting off as little hair as necessary to try and get a bandage in place.  Naturally, all of this was done to the chorus of Miranda howling right in my face, poor girl.

I finally got Miranda bandaged up, and deemed that this trauma was Prednisone-worthy.  Prednisone should generally only be used to (hopefully) prevent FOP flare-ups in cases of trauma to the limbs or jaw, and not on the trunk, neck or head.  However, this impact occurred right on the side of M’s forehead, about 10 cm away from the jaw, so I wanted to do whatever I could to prevent a flare-up which might spread to the jaw (and thus fuse it in place).  Yikes.  Also, there’s a decent chance she may have hit some other body part in this fall, though when I asked her, the only thing she said which hurted was her head.

At that point, it was time to clean the copious amounts of blood off the carpet.  I have a “spot bot”, but even so this was difficult.  I did my best, but we still sport a faded red stain just at the top of the stairs.

By the time I was scrubbing the stairs, Miranda decided she felt better.  “It doesn’t even hurt any more, Mom.”  And then she started bugging me to go to school.  I checked her bandage, and as it was holding in place and there appeared to be no blood leaking out of it, I figured there was no reason to keep her home.  I then changed her blood-stained T-shirt, got her into her jacket, and headed off to school.  She ended up arriving about an hour late.  Naturally, I explained to the teacher and Miranda’s educational assistant (AKA bodyguard) what had happened and what to watch for.  Fortunately, when I picked her up later that day, they said that all had been completely well.

It’s now been 3 days since this event, and except for Miranda protesting if someone touches her bandage, there are so far no complications.  However, I won’t figure we’ve dodged the FOP bullet until 8 days have passed with no flare-up.  Am watching this carefully.

Trauma causes such a vicious circle for people with FOP.  The person has limited mobility due to bone formation from previous flare-ups, making it more difficult to regain balance or minimize the impact of a fall, thus leading to the likelihood of more flare-ups/more bone/more limited mobility, and so on.  It’s one of the most difficult aspects of life with FOP.  And yes, avoiding tripping hazards is a smart thing to do…  But, in this instance I let my guard down and wasn’t aware of exactly what M was doing upstairs (my bad, but I confess to not being perfect).

Anyway, we try our best to live well despite FOP.  I think we mostly succeed.  The following is a photo of Miranda showing off something she’s much more happy about this week than a nasty old fall and ouchy on her head – a new bathing suit!  Don’t ask my why she has socks on her hands.  That’s a 6-year old for you…