To sleep, perchance to dream

Posted by Karen - March 24th, 2018

Miranda’s bed is the latest headache in our house.

Honestly, this came as a big surprise to me. I knew that once my daughter Miranda developed hip restrictions due to fibrodysplasia ossificans progressiva, walking would be an issue and we’d have to get her a wheelchair. It never occurred to me though that Miranda would have trouble getting in and out of bed… (Maybe this is one of those “duh, what did you expect?” things, but there you have it.)

Miranda currently has one good hip, one good ankle, and zero good knees (by “good” I mean with unrestricted movement). As it turns out, this makes using her bed difficult. To get in, Miranda has to stand on the right side of the bed, straighten her right leg up at the hip and swing her left leg up and onto the bed, then bring her right leg up. This means she can’t get far onto the bed – she’s kind of at the mercy of wherever her left leg has landed, which is usually not far from the edge. If she’d like to be facing forward – say, to watch TV, read a book, or sleep semi-reclined – she’s got to have a bunch of pillows stuffed behind her back and one behind her neck. If she shifts her position even a bit, the whole thing gets thrown out of whack and she needs someone to help her get out of bed, and then back in, with the pillows re-arranged. It also often happens that Miranda’s right leg, being perilously close to the edge, slips out while she’s sleeping and she wakes up with her body half off the bed – again, needing help to get out and get back in.

Miranda with her buddy, Pepper. See all the pillows?

Miranda with her buddy, Pepper. See all the pillows?

Obviously, this is not a good arrangement. There are far too many variables to make this comfortable and sustainable. And so… Miranda needs a new bed.

We’re thinking that one of those models which allows you to independently adjust the angle of the head and feet is the way to go. Also, it would need to be lower than the bed Miranda currently has, since height is part of the problem.

Luckily, our government program which covers kids with disabilities will fund most of the cost of the bed, since these aren’t cheap. Unluckily, there’s the usual routine of having to apply to the program, get the whole thing assessed and approved, and then finally get the bed, all of which takes a while. Oh well, we’ve gone that route before, and I’m sure we’ll do it again. I try to remind myself to be grateful we live in a jurisdiction which pays for this stuff at all. Lots of families are not so fortunate.

If you or your family member has FOP and you have any good tips for beds, I’d love to hear them. Maybe a strap attached to the side of the bed to allow Miranda to pull on it at night and help shift her position herself is also a good idea? Hey, we’re open to any and all suggestions. Please leave a comment.


One Response to “To sleep, perchance to dream”

  1. Corinne says:

    Hi Karen and Miranda….I love your blogs. Helps me keep tabs on how you’re all doing! Adam has had an adjustable bed for 14 years or so. We are on our 3rd bed actually! My advice is to purchase one that not only has the adjustable foot, head and height but tilt as well. The tilt function has been a game changer for Adam. The tilt helps with comfort, since Adam can’t move any part of his body. Helps him see the TV in bed as well. When he is having any resiratory issues it helps drainage, when there is swelling in his legs it helps tilt his legs above his heart.
    Just my little piece of advice. Its worth tbe eztra cost.

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