Stairs and shoes

Posted by Karen - September 28th, 2014

Posted by Karen

Once upon a time, there was a young couple on the hunt to buy their first home. They concluded pretty quickly that in their town, Burnaby, British Columbia, a townhouse would be the most affordable option. And so, they found and were delighted to purchase a pleasant 1800 square foot townhouse. A couple of years later the couple had their first child, a bouncing baby boy, and then 3 years after that, a lively baby girl arrived. Everything was perfect – the family lived in a modestly spacious and comfortable home with a school nearby, and everyone was happy. And then, one day, a wrench was thrown into the works… The label on the wrench said: fibrodysplasia ossificans progressiva (FOP). It landed right at the feet of the family’s little girl, Miranda, who was then 2 years of age.

The family had A LOT to adapt to in dealing with FOP. An awful lot. FOP causes progressive disability caused by healthy muscle tissue being killed off and replaced by bone, thus locking joints. Little Miranda was hit hard by FOP, which raged up and down her spine, through her shoulders and into her biceps and elbows. There was at least one saving grace, though, which is that FOP is known to mostly restrict itself to the upper body in the younger years, usually not moving into the legs to any great degree until the teen years or possibly even later. The family could put off, for a while, the issue of the disastrously unsuitable nature of their home for someone who needs to use a motorized wheelchair or scooter to get around.

This family is of course my family. And our house? It has an entry level with small bedroom/den and half bath, and then 6 stairs up to a small landing, then 6 stairs more up to the main floor. The main floor has kitchen, living room and dining room, and then one goes up 6 stairs more to another small landing and 6 stairs more to the upper floor, with 2 full bathrooms and 3 bedrooms. See what I mean? No problem for someone with strong legs, but a pretty seriously bad situation for someone who can’t climb stairs.

Stairs 28-09-2014 9-02-37 AM

View from mid-point landing going up to the bedrooms.

As I said, we were able to put off for quite a while the issue of the stairs in our house. And then, in September of 2013, the FOP clock started to tick… That was the month when Miranda developed her first ever flare-up below the waist. By November, Miranda’s right knee was permanently partially locked by bone – she could stretch it straight, but bend it only about 1/3 as much as normal. Miss M had to learn a new way to go up and down stairs, as she couldn’t bend her right knee far enough to walk in an alternating gait. Fortunately, she figured out that she could step up using her left leg and follow with the straighter right leg, and do the reverse procedure to go downstairs. Phew. And then came May of 2014, when Miranda tripped and broke her ankle, which led to a left lower calf flare-up which prevented her from putting her left foot flat on the ground when standing straight up, and made her have to walk on the ball of her left foot. Again, however, M’s ingenuity helped her figure out that if she leaned against a wall for extra support, and went up or down stairs sideways, she could still do stairs. But still, the FOP clock was (and is) ticking louder.

Over the past couple of months, I’ve been thinking a lot about our house situation. We can (and probably will) do some modifications so that we can enter and leave the house through the backyard patio doors, and that will eliminate one set of stairs. But, there are still stairs up to the bedrooms and bathrooms. OK, but what about one of those lifts that take people up stairs? With reluctance, I’ve come to realize that that’s probably not going to work either. As near as I can tell, those lifts can take an individual seated person, or possibly even a seated person and a light wheelchair, up or down stairs. They wouldn’t work, however, for someone who can’t sit because his or her hips have fused the legs straight out, and/or for someone who uses a several-hundred-pound motorized wheelchair (manual wheelchairs don’t work for FOP because people with FOP usually don’t have the arm mobility to self-propel). And don’t even get me started on our narrow bathrooms…

And so… End result? We’re probably going to have to sell our house within the next few years and move to a one floor bungalow or rancher. Which is the pits, because (a) we love where we are right now, and (b) moving up to a detached house will require us, in Burnaby where we dearly want to be, to have to add another 200 to 500 thousand dollars to our mortgage (which is just now almost paid off). GULP. This is a seriously, majorly stressing thing to contemplate, but it’s “stairing” us in the face. Sigh.

And now, on a completely separate note, an update about Miranda’s shoes… A while ago we got approval from our provincial children’s disability program to get orthotics integrated into a pair of shoes. The idea is that this would even out Miranda’s gait so that she wouldn’t have to have her left leg constantly bent to accommodate her ankle restriction. This week, we got some final modifications done to the shoes and picked them up. And here they are…

Shoes 27-09-2014 12-02-29 PM

They seem to work nicely as hoped. The added height on the right shoe allows Miranda to straighten out her left leg while walking on the ball of her foot, and the left shoe wedge enables her to put weight on more of her foot. But… So far, M doesn’t like them. “They’re boring/ they hurt my feet (ie, sensation of good arch support where she had little before)/I look like a dork in them.”

Greaaaaat… Very much hoping I can get her to gradually accept them, maybe when she realizes that they make walking so much easier. Stay tuned.

One Response to “Stairs and shoes”

  1. Corinne says:

    Hi Karen: I am so sorry to hear about the progression M is experiencing. I totally understand where you are coming from. We are in a modified home which we bought VERY quickly when Adam went from walking to wheelchair in a matter of days. It’s never an easy decision. It’s not based on what you want in a home, but what you need. Moving is never an easy decision, especially when you have children in a school district you love. Just know I am thinking of you, and if you need an ear, I am here. Blessings.



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