Last Monday was Easter Monday. It was a beautiful sunny day, so I decided to take the kids to a local playground. Pete had to go out of town on business, so it was jut me with the kids. When we were there, I was reveling in Miranda’s newfound physical confidence (which I’ve blogged about before). She ran about, climbed up and went down the slide on her own, and generally had a fun time. We even had a couple of races.
So there I was, as I said, enjoying this taller, older Miranda, who didn’t need QUITE as much eagle eye attention as she did last summer. Miranda’s big brother Owen then noticed a depression filled with sand, and asked me what it was for. I told him, and he ran along the track leading up and tried a long jump into the pit. What fun! Well, that turned into “monkey see, monkey do”, and Miranda wanted to give it a try. I made a split second decision to say OK – if she jumped near the sand and fell, she’d fall into soft sand, so should be no problem, right?
So off Miranda went. She started running down the short track toward the pit, then somehow lost her footing, leaned forward a little too far and fell forward into the packed sand. NOT the nice cushy sand of the pit, but the harder packed sand of the track. And then, of course, the howling and many tears commenced (and that was just from me, sigh). That was the end of the day at the playground…
In all seriousness, I don’t actually blame myself for Miranda’s fall (despite the title of this blog). I believe in letting her try things and experience life, and that inevitably results in some falls from time to time. Even kids who don’t have Fibrodysplasia Ossificans Progressiva fall on occasion, especially the younger they are.
The thing with falling and FOP, however, is that the consequences can be so much worse for the child with FOP as compared to the typical child. Falls from can cause dreaded FOP flare-ups, resulting in new bone formation, and sometimes the onset or progression of disability.
It’s a vicious circle… A child with active FOP has a more rigid spinal column, and typically has arm movement restricted to one degree or another. So, when such a child falls, it’s impossible for her or him to twist out of the way and cushion the fall, and often difficult or impossible to break the fall by bracing with the arms. The result is a fall with harder or more severe impact than if the child didn’t have FOP. And then, of course, the harder the fall, the more likely it will cause a new FOP flare-up and more bone formation and less ability to evade consequences from falls…
I get panicky just thinking about it. In fact, I’ve been known to say half-jokingly (only half, sigh) that I have borderline post traumatic stress disorder around falls, having seen Miranda experience so many of them and knowing what the consequences can be.
My “borderline PTSD” actually began long before we had heard of FOP. I trace it back to when Miranda had her first swelling which we now know to have been a flare-up. It all started at a toddlers’ water park when she was 18 months old and was knocked over by a careless adult onto the concrete floor. She must have taken the impact right on her forehead, because the result was a HUGE bump which even caused her eyes to swell shut, and put us in fear of skull fracture (which she didn’t turn out to have, thankfully). That bump receded after 10 days or so, and left a tiny, almost imperceptible ridge of “calcification” (the neurosurgeon’s description) in the middle of Miranda’s forehead. Over the next several months, our Miss M had a number of other, more minor typical childhood falls which resulted in mysterious lumps on her skull, all of which, in the typical, “early days of FOP” pattern, swelled up over the course of 2 to 4 weeks and then suddenly deflated and disappeared. I found these mystery bumps progressively more upsetting as each one occurred. I got to the point where, a couple of months pre-diagnosis, I got almost hysterical about Miranda hitting her head when she would fall.
I remember my husband Pete and I pondering on numerous occasions about why it was that Miranda developed big, distressing lumps when she’d fall on her head, but the rest of her body seemed unaffected. I remember breathing sighs of relief when I’d see Miranda fall but avoid hitting her head – after all, from what we knew, this was some strange phenomenon where Miranda’s head was extra-sensitive to bumps, but the rest of her body was fine… Of course, we now know that this is just typical of how FOP frequently operates – it begins with mysterious head bumps waxing and waning and often not leaving any apparent ossification behind, and then later progresses to swellings on the body below the neck which most often DO result in ossified muscles and tendons (but I digress…)
After we learned about FOP, my stress around falls evolved to include all falls, not just those where Miranda hit her head. For a long, long time, I was extremely cautious around making sure she didn’t do ANYTHING which could put her at increased risk of falling. But even with this high degree of paranoia, Miranda of course continued to fall – she was, after all, a toddler, and one with growing limitations in her spine which increased her risk of falling. Let’s just say that we kept (and continue to keep) various sized cold packs in our freezers at all times, and we used them often. We’ve also used our share of Prednisone and Ibuprofen. Sigh.
So anyway, you can see how it’s been a very welcome relief to find that as Miranda has grown older, and moved into her pre-schooler years, she has gradually had fewer and fewer falls. If I need to be even slightly less paranoid now than I needed to be a year ago, it’s a good thing. Still, as I was reminded last Monday, I can’t let my guard down completely. Maybe I made a bad judgement call about the long jump pit… I don’t know; in fairness she could have fallen at any other time, not just while running to the pit. I think it was just bad luck.
Post-script – Monday’s fall was the type I’ve seen happen to Miranda often. Down she went, straight onto her knees and then her forehead. She was wearing her decorated neoprene headband, though, so developed no bumps on her head. I was worried about the jarring impact to her neck, however, so gave her the recommended dosage of Prednisone this week. It’s now been almost a week with no sign of neck swellings, so I’m cautiously optimistic that our missy won’t have any flare-ups. Wish us luck…
