“OWEN!! LET’S GO FIND EASTER EGGS!!!”
Those were Miranda’s first (bellowed) words today, Easter Sunday, upon awakening… She whipped downstairs as fast as she could go, found Owen waiting on pins and needles in the living room, and the two of them scoured every inch of the living room and dining room looking for eggs hidden by the Easter bunny. It should be no big surprise that Owen found most of them, but Miranda held her own and located several. They had an absolute blast!
Miranda has a particular way of retrieving the eggs – she locates them, and then has to contort her body into whatever posture or shape she can think of to help her reach the object of her attention. This is Miranda’s way of operating in general. Because of Fibrodysplasia Ossificans Progressiva and the changes it’s made to her body, Miranda has to come up with creative ways of accomplishing her goals.
Right now, as of April 2009, FOP bone has created the following limitations for Miss M:
– Her back is rigid, and has only limited movement. She can bend her upper back a bit, and partially twist at the waist, but that’s about it.
– She can turn her head about half-way to the right and only a smidgeon to the left.
– Her head is naturally angled slightly downward, and she can’t tip it backwards at all. The best she can do is manage to raise it enough to look straight ahead.
– Neither arm can move forward or backward at the shoulder. Miranda can lift both arms only slightly away from her sides, with a bit more movement in the right shoulder than the left.
– Miranda can’t straighten her left arm beyond about 120 degrees (though it can bend normally), and her right elbow moves her forearm only between 130 and 100 degree angles (ie, almost completely locked at a bent angle).
All of this probably sounds pretty bad, except someone forgot to tell Miranda that she has a disability… Miranda generally assumes she can do anything she wants to, until proven otherwise! In fact, Miranda has come up with a number of ways to do things in spite of her limits.
Take stairs, for example. Miranda has never managed to progress beyond the toddler stage of “step one foot up, lift the other to the same step, and repeat”. I think that’s because of the rigidity in her lower back. But never mind – I don’t think our Missy notices that other kids her age go up and down stairs differently. The fact is, she can climb stairs, and that’s all she cares about. Sometimes, though, Miranda wants to really WHIP down the stairs – and she’s figured out that the fastest thing is to plop herself down on her butt, drop her feet down two stairs, and then slide her bottom down one stair. She can really motor when she does that stair bum-scoot.
Another example is getting into her car booster seat. I used to just lift Miranda in, well beyond the time period when most kids would be climbing in themselves. However, recently she’s figured out that she can climb into the car on her knees, then stand up facing her car seat, turn around, put her foot up against the car seat in front, stand on her tiptoes to reach her behind onto the seat, raise her other foot up against the seat as well, and then use her legs to push herself fully into her seat. Boy was she thrilled with herself when she figured that one out…
Speaking of tiptoes, Miranda makes lots of use of her tiptoes in general. She can’t stretch her arms upward, but realized intuitively that she can gain another couple of inches of height for reaching by stre-e-e-etching up on her toes. I think all little kids do that to some extent, but Miranda does it much more often than is probably typical for a 4 year old.
Then there’s leaning backward. If Miranda wants to look upward, she bends her knees and angles her body backward as much as possible. It looks sort of odd, but hey, it seems to work for her.
Finally, there’s kneeling. If Miranda wants to get something off the floor, she can’t just bend over, reach her arm down and grab it. Instead, what she does is get down on her knees until her fingers make contact with whatever she’s trying to grab.
Of course, there’s a lot that Miranda can’t do. Putting on clothes, using the toilet by herself, and washing are all things that she needs an adult’s help to do. But because of that, I’m really glad that Miranda seems to have such a desire to do as much as she can all on her own. Everybody needs independence, especially a kid with FOP…