Posted by Karen
Anyone who’s met Miranda, or seen photos of her, knows that she wears her protective headband whenever she leaves the house. We learned from painful experience that if Miranda’s not wearing it, and she trips and bumps her head, she develops a ridiculously huge goose egg at the site of the impact. The bumps are sensitive to touch, and prompt much worry from mom and dad about the swelling spreading to the jaw area and causing a fused jaw (shiver – it hasn’t happened yet, but could). Thank you very much stupid Fibrodysplasia Ossificans Progressiva…
When Miranda was first diagnosed, she was only 2 years and 3 months old, and she had frequent falls. We were whipping out cold packs for our screaming child OFTEN (she’ s more stable now, but still falls on occasion). Pretty quickly we figured out Miranda needed some head protection when leaving the house, so I looked into the options. Unfortunately, I just couldn’t find anything ready-made that seemed right for my gal. I therefore sought out some advice from fellow FOP moms, and one of them told me her son had worn a “crown” made of neoprene when he was little. I thought this sounded like a good idea, and this set in motion the evolution of Miranda’s headgear.
My first thought was to create a simple neoprene band which would go around the head, with a thicker layer of protection at the forehead where Miranda would typically bump her head. Our fabulous OT at BC Children’s Hospital agreed to sew a prototype up for us…
The first model, painted with lovely jumping dolphins by grandma (upside down in this photo! oh well).
This first attempt was pretty good, but not perfect. It had a tendency to slide off Miranda’s straight hair, so I wondered if something a bit more… “robust” would be the way to go. The next thing we tried was to use very thick neoprene, and have it make a “+” shape on the top of Miranda’s head. It also had a chin strap to hold it more firmly in place.
The thick, black headband.
The black headband worked very well. In fact, I’d say it was pretty much perfect during the winter of 2007/2008. As we got closer to summer, however, I realized the black one was just a bit too hot and sweaty for summer wear. And so, I decided to have another go at designing a headband.
At this point, I got the brilliant idea of ordering pink neoprene off the internet. It turned out, however, that I couldn’t buy a small amount – I ended up having to get a humongous roll! I couldn’t believe how much of it there was; we’ll have it for years… Anyway, once we had it, our OT again set to work on a new headband. This time I asked for one similar to the first model, but with a strap going across the head to keep it in place.
The pink headband with snowflake appliques...
This one was completed in the late spring of 2008, and it’s worked very well now for 2 years. As the months have come and gone, Miranda’s farmor (grandma in Danish) has decorated it appropriately for the season with cute little foam flowers, snowflakes, etc sewn onto the fabric.
The old one is starting to get a little ragged, though, so I recently contacted our current OT and asked if she could make another one for Miss M. She came to our house on Thursday of this week to take measurements. The new one will be the same as the last, except with a slightly higher forehead piece for greater coverage.
Miranda is about to start kindergarten this fall, and I’m hoping to gradually decrease her use of the headband. We might try having her only use it when outside, when moving between classes and outside. Still, it will be good for her to have a nice, new(ish) headband for these purposes.
