November at our house

Posted by Karen - November 26th, 2017

Hi friends. Sorry about not posting the past couple of weeks; things got in the way. But anyway, here I am, and here’s some recent stuff going on at our house…

Last weekend was a bit of a momentous event. Specifically, Miranda went to a movie last Friday night – with only two friends and NO PARENTS in attendance. This is a typical activity for 12-year-olds in this day and age, so why not Miranda? Fibrodysplasia Ossificans Progressiva shouldn’t rob you of all fun. It was actually pretty safe; I drove the girls to the theatre to see Wonder (incidentally, this is a movie based on one of Miranda’s favourite books, and is about a boy with a major facial deformity and how he navigates life). Miranda sat in her manual wheelchair, and after a quick tutorial about how to manage the brakes, the girls were off. When I picked them up at the end, they were all laughing and having a great time. Was I a bit, umm, nervous while this was going on? YUP. There were any number of things to worry about – what if they mess up the brakes and M goes rolling away uncontrollably, what if her leg gets sore and she needs to get up and reposition herself and they can’t help, what if, what if, what if… Gah. In the end, it all turned out fine! Moving into the teen years, I’m sure Miranda will want to go out with her friends increasingly more often, and I will definitely let her (even if I’m sweating while it happens).

My grown up girl, incidentally wearing new glasses she got this week.

My grown-up girl, incidentally wearing new glasses she got this week.

On a completely separate note, this week I made arrangements with our helpful occupational therapist to go and check out wheelchair adapted motor vehicles. Our appointment is for this coming week. Unfortunately, such a vehicle is going to be a necessity for us, and those suckers are PRICEY. Now, you might think, given the expense, why not just try and cope by¬†transferring Miranda into a regular car seat and stowing the empty wheelchair in the back of our current minivan? In fact, that’s what we do right now. That works at present, because Miranda is still only part-time using a manual wheelchair, which can be deconstructed and easily lifted, and also because Miranda has one flexible hip. That latter thing, the flexible hip, is the main point. See, it turns out that getting in and out of a car is very difficult if you can’t bend your knees or hips. I must say, until we started dealing with the hip flare issues, this isn’t something I had thought of, but it’s a major concern. Even now, getting in and out of cars is challenging for Miranda because of her locked left hip and knee. If the right one were to also fuse… Honestly, I think that point will be the end of Miranda’s vehicle travel days UNLESS she is seated in her wheelchair, which is then rolled into a vehicle and locked in place. So, I will take a deep breath and start checking out adapted vehicles.

On the medical end of things, Miranda recently had an appointment with an orthopedic surgeon at BC Children’s Hospital. The point of this visit is not that Miranda needs surgery, but more to get her case known by the orthopedic clinic in case (a) a medicine is approved for FOP a few years from now and Miranda becomes eligible for surgery to unlock one or more joints (the good reason for the visit), or (b) Miranda ends up needing surgery for reasons of absolute medical necessity and bone removal is part of it (the scary reason for the visit). We have, in the past, had some interaction with the orthopedic clinic, and based on that I was definitely not looking forward to this visit. The clinic is ETERNALLY backed up and behind schedule, and the place involves a whole lot of hurry up and wait. Also… Well, let’s just say I wasn’t crazy about at least one surgeon we had met in the past. This time was no different in terms of the delay – Miranda and I had to wait a bit, then she got x-rays of her torso, and then wait some¬†more, and then finally we were seen by a resident and eventually by the senior surgeon himself. Fortunately, the senior guy turned out to be really nice. I liked him a great deal. He was familiar with FOP; said he treats another FOP patient (aside: I know who it must be, because to my knowledge there is only one other child patient in BC), and he noted also that he had been involved in diagnosing a case of FOP in Tanzania, where I think he had been doing some charity work. What I especially liked about this guy, though, was that he didn’t try to “puff himself up” and imply that he knew ever so much about FOP. He knew a bit, but acknowledged his limitations and was genuinely interested in what we had to say. YES, ortho clinic, and us, for the win.

Finally, on a fun note, I will be traveling this Friday to San Francisco to attend the International FOP Association’s regional family conference. Sadly, it’s just me going this time; we just had too many expenses this year with moving, etc for my whole family to attend. Anyway, it will be a short but sweet conference (just the weekend), and I’m really looking forward to visiting with a number of our extended FOP community folks. Should be ever so great. I’ll let you know how it went!

 

 

 

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