Friends With FOP

Today I was thinking about what to blog about this week, and at first nothing came to mind.  I couldn’t think of anything FOP-related that happened  to us recently – it’s been just a regular hot, summery sort of July.  But…  On further reflection, I then realized that was wrong.  FOP actually did affect a number of things in our lives this week, just like it always does.

I can’t tell you what an enormous relief it was when I was finally able to get past the trauma of having our child diagnosed with Fibrodysplasia Ossificans Progressiva.  For many weeks after we learned Miranda has FOP, the disorder was pretty much the only thing occupying all my waking thoughts.  It was, in a word, horrible.  Fortunately, that didn’t last forever.

I remember when the change first started to happen.  Around June of 2007 (2-ish months after diagnosis), I had telephoned a fellow FOP mom to try and get a bit of moral support from someone who would understand and grasp what I was going through.  I remember her telling me that after a while, FOP starts to fade into the background.  It’s still always there, and you have to be aware of it, but you just go on with life and FOP doesn’t feel like it’s emotionally consuming you.  I don’t know why, but for some reason, just hearing her say that had a positive effect on me, and from that moment, I started to adapt.  I think I adapted pretty well – fast forward 2 years ’til now, when I couldn’t think of what events FOP caused in our life this week until I actually concentrated on it.

So what did happen this week?  The first thing which comes to mind is that every day this week, I checked to see if Miranda was developing a flare-up on her head.  As you may recall, I blogged last week about a couple of major head-bonks Miranda had had last week.  In our experience, a head bonking has never caused a flare-up that started more than about 8 days after the incident, so when we made it to Wednesday and there was no bump on the side of her forehead from the first incident, I gave a little cheer- hooray!!  But, when I checked Miranda’s head Friday morning, exactly a week after the second fall, I found a new swelling at the centre of her head at the hairline (the initial swelling at that spot had disappeared after a couple of days).  This evidence of a new flare-up was unfortunate, and means we can probably expect anywhere from 5 to 20 days of a swollen lump on M’s poor little head.  These aren’t much fun; they hurt if you bump them or if you pull a T-shirt down too hard over her head.  The good thing, though, is that usually the bone left behind by this kind of flare-up is so small it’s almost undetectable, and it doesn’t change range of motion.  In fairness, I would say it’s probably the ”safest” place on the body to have a flare-up, if ya gotta have one (that is, safest unless it were to stretch down to the jaw – a scary thought, but not likely to occur at this age).  

What else…  Well, on Tuesday I had to cut out of work a bit early to take Miranda to the Children’s Hospital for a blood test.  She’s getting monthly blood tests right now to see how she’s doing on a potential therapy her doctor is trying out.  I wasn’t looking forward to the test, because Miranda SCREAMS like a banshee while it’s happening, and a nurse and I have to hold down her limbs on a medical exam bed while another nurse does the procedure.  This is very disconcerting for me, because I worry that in all the pandemonium, the blood draw nurse will accidentally jab Miranda in a muscle, thereby causing risk of a flare-up. 

Anyway, this time around, the nurse got a vein, but had to fish for it a bit, and the blood was coming out too sluggishly.  Finally she concluded it wasn’t working, and pulled the needle out.  But then just when Miranda was thinking it was all done, the nurse quickly stuck a different part of her hand with another needle, and got a really good vein right away (to a whole new chorus of screaming from Miss M, sigh).  Fortunately, this veing pumped so well that the whole blood draw only took about 10 seconds.  By the time we were done, Miranda and I were both drenched in sweat from the stress of it all.  I am SO glad we don’t have to do that for another month…  NOTE – in a “weak mommy moment” after it finished, I got sucked into buying Miranda a new stuffy toy from the hospital gift shop.  OK, I know, bad precedent to set, but she was very delighted with her new black and white kitty…

Yes, a photo with the kitty would have been better, but instead I have this goofy pic of Miranda with toy Harry Potter glasses on...

After finishing at the Children’s Hospital (and after fortifying us each with a Starbucks drink, mocha frappuccino for me and chocolate milk for her), we were off to a marine supply store to buy life jackets.  We had been invited to go boating this Sunday with some friends, and buying a life jacket for M at our local department stores had been a failure.  All the jackets I had looked at at Wal-Mart and Canadian Tire were the vest kind, and Miranda can’t get her arms into those.  She needed something else.  Fortunately, after a request for help from the FOP community on FOP Online, I had received a very useful call from an adult with FOP, a guy who’s always been very friendly to us.  This fellow has done lots of recreational activities in his life, and was able to tell me about a life jacket which goes over the head and buckles around the waist – perfect!  I tracked it down to this marine supply store; hence our visit there. 

Finally, today involved a visit to a kids’ water spray park.  We went there to pick up Miranda’s brother Owen, who’d been there for a birthday party.  It was a really nice day, so I planned to take Miranda through the water sprinklers.  This was kind of stressful for me, because the water park is planted on a concrete surface – the worst kind of thing for Miranda to fall on.  So, I put on Miranda’s extra thick headband, the one with a chin strap, and took her through it.  I was, however, too chicken to actually let go of her collar and let her walk on her own – waaaaay too risky.  Result was I got thoroughly soaked while holding onto my daughter like a dog on a leash.  Lots of people stared at us, as is par for the course, but watcha gonna do?  Despite all this, Miranda really enjoyed the spray.

Here's Miranda in her swim T-shirt after we came home.

Wish us fun on our boat ride tomorrow…