February and FOP at our house

Posted by Karen - February 17th, 2018

I’m not going to lie – February at our house has been all about watching a certain South Korea-located international sporting event on TV (GO CANADA!!). But, you know, working around the Olympics, we’ve also been dealing with a few things related to fibrodysplasia ossificans progressiva (FOP). In fact, it’s been kind of a busy month.

The first thing was that several days ago, I was gearing up to attend the annual “in person” board meeting of the International FOP Association. This was to be my fourth one in as many years, but this year, for the first time, it was being held in a western city – Denver, Colorado! Woo hoo, I wasn’t going to have to spend 10 hours in airports and airplanes! I was really looking forward to attending this meeting, since the meetings themselves are always super interesting and uplifting, and it was going to be less than a 3-hour plane flight to boot. And so, it came to pass that on February 7, I dropped my daughter Miranda (age 13 – she’s the one with FOP) and my son Owen (age 16) off at school, went home to pack my small bag and do a bit of work, and then headed off to the airport. All was smooth sailing until I got on the plane and… it promptly went no-where. In fact, the airplane sat on the tarmac for 3 hours. Every half hour or so the pilot would announce, very apologetically, that they were working on solving a technical problem. Finally, the technicians just gave up, and the pilot announced that the flight was canceled. Seriously – no replacement plane, just canceled, at 7 PM. GAH! How disappointing… Having no other option, I headed home.

It turns out the airline rescheduled me to fly to Denver the next day. However, I looked at the time and realized that if I took the flight, it would miss most of the first day of the 2-day meeting. With great reluctance, I decided to throw in the towel and attend the meeting via video conferencing (there were already 3 other board members doing similarly, so they just added me to the linkup). I ended up sitting in my home office and listening in on the meeting. As for the meeting itself? As always, it was the usual combination of mundane, routine board-type business combined with fascinating presentations on future research directions in FOP and brainstorming on the ways for our organization to best serve the FOP community. Being the secretary, I dutifully took the notes necessary to draft meeting minutes and listened carefully to everything going on. So yes, I did attend, but doing it by video conferencing was a downer. I really missed the fantastic energy of being physically present with a bunch of people committed to fighting FOP. Ah well, at least I ended up getting the cost of my plane tickets refunded by the airline.

My motivation for being a member of the IFOPA board, my girl Miranda.

My motivation for being a member of the IFOPA board, my girl Miranda.

The next thing is that we got one step closer to finally obtaining Miranda’s power wheelchair. Honestly, this has been such an odyssey… First, there were several appointments spread over a number of months last year for children’s rehabilitation experts to assess Miranda’s wheelchair and seating needs, and for her to try out various models. Second, our rehab contact needed to draw up the specifications for the type of chair required, and all its modifications, and then submit the cost estimate to our provincial program which funds disability items for children and youths. Once the government program approved its portion of the funding required, we then had to submit the remainder to our extended-health medical insurer. The insurer finally got back to us around the end of January, and fortunately, they agreed to fund the maximum possible amount. Still, at the end of the day, there was $6,500 left over that we will have to pay out of our own pocket (our family income is too high to qualify for charitable help). That kind of bites, but we are fortunate to have the resources to be able to do so. We ultimately moved on to the last phase in February, which was to have our rehab person actually order the power chair, which I have to say is a fancy-schmancy, amazing piece of equipment… And in fact, I got a voice mail message at the end of last week to call the rehab facility to make an appointment to come in. Maybe the chair is ready! Fingers crossed…

Speaking of wheelchairs, the other major thing we did this month was to commit to buying a wheelchair accessible motor vehicle. I had started the search in January, attending a couple of different dealerships where wheelchair adapted vehicles are sold. Why take this step – why couldn’t Miranda just sit in a regular car seat and the wheelchair be carted around in the back of our existing minivan? Sadly, that is not a realistic option. At the present time, Miranda is only *just* still able, with difficulty, to climb into a regular seat in each of the two vehicles we currently own, and we’ve had instances where she actually couldn’t even get into other vehicles. See, when your legs stick straight out and you can’t bend your knees much (she can bend one almost not at all and the other maybe 40%) it turns out that it’s damn hard to manoeuvre to get into a regular car seat. The only reason Miranda can still do it at all is that she still has good movement in one of her hips. If that remaining hip were to fuse, or if her legs got much longer, well, that would be it all together for travel in a regular seat. The other thing is that it turns out the power chair is very, very awkward and difficult to move up a ramp and into the back of a regular, non-adapted minivan (we tried that). We decided in the end that a wheelchair adapted vehicle which Miranda could drive her power chair into would be the way to go. In any event, we finally found a used vehicle which we decided to buy. We made the decision late last week, and I expect we’ll have the vehicle at some point in March.

Finally, Miranda got a new cat. OK, this is not to do with FOP, but its definitely something exciting in her world (LOL) Here is a picture of her new kitty, Pepper (yes, this is a DIFFERENT cat than the one in the photo above, which is our other cat Gally).


Hooray for cats!



One Response to “February and FOP at our house”

  1. Corinne says:

    That really sucks about the flight ! So glad they refunded the ticket ! Should have gotten a lot more for the wait and the inconvenience !
    The new kitty is so sweet!!
    I totally understand the wheelchair process! It’s a hurry up and wait game! Took Adam almost 2 years to finally get his chair, and by then, his FOP had reared it’s ugly head and the new chair had to be adapted all over again!
    Praying the chair makes her more comfortable !

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