Thursday, April 19, 2012

Daisies and DynaSplint

Lots been going on here. As usual.

Since E's last field trip, I've been thinking a lot. We've taken Little Red on a spin, and the experience taught me a lot..but I haven't had a situation where E was way behind her peers until the last Daisy trip.

The girls went on a field trip to a local farm. I figured rolling hills over a large area. WRONG.

Feeding the Chickens!

Besides the distance, there were obstacles. HUGE ONES. With roots, a few cute steps...and 30+ degree grade hills, craters made by 400+lb pigs, covered by foot-high tall grass. It wasn't easy for any of the able-bodied girls to climb some of those hills.

Giant Pigs make craters all over the ground

E's wheelchair wouldn't have helped. AT ALL. Maybe the Beach Walker could handle some of the holes in the ground, but probably not through the tall grass (both the wheelchair and the Beach Walker stayed in the trunk). E's crutches were her best bet, but with the uneven ground, they got stuck in the ground holes and the going was slow. In some cases, E insisted on walking herself. She went down hills, over small narrow short wood bridges over water, and uphill until she tired (which wasn't far up the hill). For the hard parts--and honestly, there were many--I carried her piggyback. I didn't want to carry her, but the terrain was so incredibly difficult I felt there was no other way. Elena tried very, very hard--and she did walk A LOT. It was obvious, though, that she could not stay with the group on her own.

That isn't to say we didn't have a great time--we did! E got to grab an egg from the chicken hen house, feed chickens, see huge pigs, pet younger pigs, pet cows, ask great questions, pet baby goats, see all sorts of fowl, and learn what we eat from the farm. All the girls seemed to enjoy the farm and each other's company, which is what counts.

The biggest Field Trip Lesson I learned: If possible, ask to get a head-start on the next destination. I'm glad i got the opportunity to figure this out...b/c E has a school field trip tomorrow.

One of the many reasons E fatigues easily is due to her posture--b/c she doesn't stand with her legs fully straight, her large muscles are never at rest. She crouches, which is like standing in a perpetual squat. As she tires, her legs get weaker, her crouch gets worse, until she falls. It's easy to see when Elena walks without her braces--with her braces, she leans into them more--and on some surfaces she slips, and falling with crutches is very messy. This past week she's had a few bad falls--once off her bike (she was riding with friends in a cul-de-sac!), and one down the outside steps to meet her bus yesterday morning (she's NEVER fallen or even been unsteady, and the ONE TIME I told her to go ahead she took a spill)--Elena managed to get most of her fall on the grass (I have no idea how) so she avoided the worst of the stone steps. She's got more bruises than usual right now.

One thing that would really, really help is if she could stand at rest. Stand with her legs straight, not locked, at rest. I don't know if that is possible for her. Tone, slight contractures, habit and spasticity all hamper her ability to stand tall. At Elena's last ortho appointment, her doc mentioned a sort of dynamic brace to try to help her knee extension. I got the call this morning that it was ready. Tim got it to me this afternoon.

This brace is called a DynaSplint. It goes around the knee, and actively puts pressure (the tension can be easily adjusted) to straighten the leg at all times. It can bend, but there is resistance. It can be worn while moving upright, but right now our focus is on a passive stretch--wearing it while sitting or lying down.

Tim told me she'll see the most benefit the more she wears it--as in, hours per day, preferably while sleeping. I told him I could give him 15 minutes per day right now. Elena is a very active child, and for her to wear this while moving around would probably be unsafe (at least, initially). I refuse to ask her to wear it at night right now; we have spent so much time and effort getting to our current wonderful bedtime situation, it is not worth risking a setback.

During our reading time tonight

We currently have the DynaSplit on a month-by-month basis. If E tolerates it we'll buy it; so far, she does. We could use this for years. LIterally, she could use this brace for a decade. That's worth trying.


Anonymous said...

Nice update. I say E did great on the farm. People with CP and farms don't really mix.

That DynaSpint thing is interesting. I'v never heard of those. Do you switch sides so both knees get the stretched? I would say also have her dance teacher work a lot on having her straighten her leg. One thing I do to keep my leg straight when working with Gregg Mozgala is he gives me the idea of having my knee be "soft" while straight so my leg doesn't have the urge to lock. Might work for E. Tell her knees can be soft i.e loose but straight at the same time.

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