It’s that time of year when parents run around and buy a pile of new clothes for their kids in honour of the new school year… That includes me - I’ve recently been following that time-honoured tradition. Miranda’s older brother Owen is about to start grade 2, and needed some new stuff. Miranda herself, however, is not actually in school yet, because her January birthday means she missed the cut off to start kindergarten this year by 1 month. Nevertheless, Miranda is about to start a new pre-school program at her daycare, so I figure she qualifies for “back-to-school” clothes as well. Besides, if I bought clothes for Owen and none for the Divine Miss M, there would be hell to pay. 
Buying clothes for Miranda isn’t a simple matter, though. Fibrodysplasia Ossificans Progressiva interferes with her ability to wear certain types of clothing. The most difficult challenge is Miranda’s limited arm movement. As a result of bone formation from FOP flare-ups, she can move each arm outward at the shoulder only a little (with the right a bit better than the left), and she can’t move her arms forward or backward at all. As for the elbows, the right one is almost completely fused in place at an angle of about 110 degrees, and the left one can bend normally but not fully straighten. Given these problems, it can be a real struggle to get clothing over Miranda’s arms and onto her body. I have, however, pretty much figured out how to deal with shirts. I’ve learned that we need to look for shirts, sweaters and dresses which are very stretchy, or which have large neck openings. The top has to go over the head, then stretch all the way over her unbending right arm, then back up and out again to get the left arm through (which is a little easier because she can at least bend that arm). The result is the Miranda’s tops are all either cotton/spandex blend, ribbed or other high-quality stretchy cotton, or else “henley” style (with an extra big opening at the neck which buttons up the front). I might potentially be able to find such shirts anywhere, but in general, I’ve found that stores like Children’s Place and Gymboree are most likely to have what we need.
Here's a pic of Miranda at the Tyrell Museum this summer. She was wearing a stretchy cotton T which we bought earlier in the season.
For dresses, I’ve found that Hannah Anderson makes terrific ones, with very nice quality stretchy cotton AND extra-wide, button-up neck openings. She has a bunch of these dresses. Doubly good…
Jackets are more of a challenge. Hoodies are OK, because I can usually find them in a cotton/spandex blend, but anything thicker or more protective than that can be very difficult. In general, I’ve learned that I have to get jackets for Miranda which are 1 to 2 sizes bigger than her regular clothes, and even then it’s touch and go as to whether I can get her arms into the sleeves. We’ve had good luck with rain gear from Mountain Equipment Co-op, which makes a kids’ rain jacket which is pretty roomy in the shoulders.
This jacket was really intended to be mid-thigh length, but on Miranda, it goes to just past her knees because I had to get it so large (not a bad thing, actually, for a rain coat).
Winter coats/parkas really are the most difficult problem. Even getting them extra-large, it’s very hard to get Miranda’s arms through the sleeves. Other FOP moms have told me that they actually had extra zippers sewn in to winter coats to make them easier to put on. I’m going to consider that this year…
Shoes are an issue as well. Miranda has a wide fore foot and “bunions” on the big toe joint (typical features of FOP). In addition to the FOP complication, Miranda naturally has wide feet anyway because both her dad and I have wide feet. Accordingly, I have to be make sure any shoes I buy Miranda are roomy through the toe box. “Croc” shoes, or any of their numerous imitators, have been great for the summer, and fortunately they were popular and fun as well. But - of course this year, the style in sneakers is for a petite, narrow style of preschooler’s shoe… Sigh. Miranda always makes a bee-line for those pretty Barbie or Dora shoes which stay on the foot by elastic cords which don’t undo. Oy, those are impossible. I’ve learned to look for “skater” or “court” style shoes, which tend to be broader and more rounded through the toes. Problem is, those don’t always come with the cartoon character pictures she wants. That, however, is simply something my missy has to live with. I once had hand-me-down shoes on her which were a little too narrow through the toes, and she ended up getting an FOP flare-up in her left second toe (to my very great relief, that flare-up went away with Prednisone use). I won’t risk that again.
Finally, we come to pants. OK, in fairness, pants are not an FOP-related problem for us. Miranda has had no FOP bone growth in her legs (knock on wood that it may continue to be so). However, since I’m griping about clothes, I’m going to throw in my eternal complaint about how little girls’ pants these days are made to resemble grown women’s – ie, narrow through the bottom and thighs. That’s no good for Miranda, because she, like her mom before her (ahem), has a stocky, big-boned sort of build. So often pants just don’t fit Miranda, because they’re OK in the waist but too tight across her bum and legs. Tsk tsk. I end up searching far and wide for loose (or at least loose-r) fitting pants, because the last thing Miranda needs on top of her upper body restrictions is to feel like her pants are constricting her legs.
Despite these issues, I did manage to get a few nice things for Miranda for the fall. The right stuff is out there. I just have to look around a bit more carefully for it…
Keen shoes (available at REI) might be an option — they are often very generous in the toe box and wide overall.
A poncho might be a good alternative to a coat. I’ve seen some really fabulous ones, with waterproof nylon on the outside and fleece on the inside. Check out these:
http://www.periponchos.com/index.php/winterfleece/
I buy boys pants for my girls. I’ve found the Lands End (available at some Sears stores, or Landsend.com) to be the best fit. They have girl’s styles, too, which are conservatively cut. The boys’ “climber” and “trekker” pants are the best, with elastic waist and durable fabrics. They pull on and off easy and are roomy without being baggy. My daughters don’t mind having brown or navy pants, as long as they can wear pink on top!
Best wishes — Heather in Seattle