Friends With FOP

Just for the heck of it, I thought I’d write today about some of the adaptations we’ve made to our household to make it safer and easier to manage for Miranda. Fortunately Miranda doesn’t at this point require a wheelchair or scooter to get around, but nevertheless she does have some issues which required different solutions.

In no particular order, here’s a list of some of the changes we’ve made to our house:

- Our front entry way is paved with very hard ceramic tiles. To minimize the effect of any falls on those tiles, we’ve covered the entire entry way with interlocking foam mats. These are the type of mats which you buy at a place like Home Depot, and typically are used at daycares or on workshop floors as anti-fatigue mats. They’re a solid couple of inches thick, and absorb the shock of a fall very nicely.

- On corners and edges of some of our counters and tables, we’ve put foam borders and corners. These are marketed at toddlers just learning to walk, but they work very well for our purposes. We have them on the items Miranda would be most likely to bump her head or body into.

- Eating is a real challenge for Miranda, because she can’t just sit on a regular size chair and pull her elbows up to table level the way Owen could at her age. However, Miranda is too big for a high chair, and anyway doesn’t want to sit in a “baby chair”. We had an occupational therapist (“OT”) check out the situation, and she recommended a type of chair called the “Tripp Trapp” chair. This chair is made by a company called Stokke, and it’s an adjustable wooden chair which can put the sitter at any desired height. It’s marketed as a chair which can be used by anyone from a baby who can sit upright through to a teenager, and is not per se a special needs chair, but nevertheless it works well for us. It has a footrest and a seat, and you can get cushions for the seat (which we did). It also comes in an assortment of colours – naturally Miranda picked pink The chair positions Miranda as high up as possible to the table, so as to allow her to get her good left arm up and be able to feed herself. Here’s a picture of the chair, which can also be seen at the Stokke website:

In the photo, note also the short plastic Ikea footstool which Miranda uses to get into the chair on her own.

- Also related to eating is the fact that Miranda can’t tip a glass up high enough to drink a full glass of liquid.  She can get the first 2/3, but then can’t drink the rest.  There was a simple solution to this one – we just bought a box of straws and give her one each time she has a drink.  Naturally, Owen likes these too…

- Again with the eating, Miranda has trouble manoeuvering her arm around to dip a spoon into a bowl.  Therefore, we put cereal, soup and other things into flat dishes with just a bit of a lip to keep the liquid inside.

Those are all the things I can think of right now…  Anyway, managing the effects of FOP does require some thinking, no question about it.