We checked in with Dr. Elias for our 9 month post-op. They looked at her flexibility, strength, how she's moving around now.
Everyone thought she looked great. They didn't really have her do much...she walked 5 paces to a step (a big one), which she got up on, and then onto a table. She sat on it, and she raised her right knee, and then her left knee. They asked her to raise both arms, and wring both hands. And that was it. I'm not sure what they are looking for...but if they want a good sense of how she moves...they should just check this blog.
Thursday, November 19, 2009
PT recap: Walking around AFO-less
I'm not sure if I mentioned this before, but Elena has a leg-length discrepancy. Her right leg (femur, I believe) is a little longer than her left. With her tone/weakness issues, this discrepancy is practically larger. To remedy this, Elena needs an insert in her left shoe to help equalize the functional length of her right leg. She can't wear an insert inside her shoe; the AFOs take all the room. So, we have her orthotist put the shoe lifts in-sole. That can take time...so we used her old summer sandals while her shoes were in the shop.
She did a pretty good job--kept her heels pretty low. Her gait looked a little funny, more of her feet outwards, and her knees up high...but the big deal was, it looks a whole lot better than I thought it would. Check it out:
She has been trying to walk at home in her bare feet. She used to be able to take 3 steps and fall, that was the maximum. Now she'll try to go across the room (10 steps); sometimes she can make it. On her tip tippy toes. Who knows if we can get her bare feet down.
She did a pretty good job--kept her heels pretty low. Her gait looked a little funny, more of her feet outwards, and her knees up high...but the big deal was, it looks a whole lot better than I thought it would. Check it out:
She has been trying to walk at home in her bare feet. She used to be able to take 3 steps and fall, that was the maximum. Now she'll try to go across the room (10 steps); sometimes she can make it. On her tip tippy toes. Who knows if we can get her bare feet down.
Wednesday, November 11, 2009
Weekend Playdate at Pen Park
Last weekend E did lots of fun things, one of which was going to our favorite playground. E brought her friend J this time.
There is a little playground (for toddlers), and a larger playground for older kids. Elena typically stays at the toddler playground--she still needs assistance for some parts of it--BUT NOT MANY!! She is supervised on steps (but rarely helped, as there are handrails) and while navigating the structure, as there are openings that she may fall through (we have not had a fall scare so far). Her biggest issues on this playground are 1) a hump she needs to go over, typically she almost falls here and has to hold on to the side wall with both hands, 2) a depression section, where almost the same things happen as the hump, and 3) when she is trying to sit down to slide--there is a handlebar above the slide, which she hangs on to, but the gap between her rear and the slide is so large she isn't able to sit down without help (she'd probably let go, and as her butt would hit the surface, her head would too). Still, she is navigating up and down the steps pretty well (some difficulty/frustration with her right leg), and climbing very well, and walking around and under the play structure without assistance!
Whew! Goin' for distance!
She also did the swings (can pump herself, but not start from a stop), and she also went on the big kid playstructure. I was helping another child--and she managed to climb up a chain ladder and into the playstructure all by herself! I'll take a picture of the ladder and post it
HERE.
Sweet!
There is a little playground (for toddlers), and a larger playground for older kids. Elena typically stays at the toddler playground--she still needs assistance for some parts of it--BUT NOT MANY!! She is supervised on steps (but rarely helped, as there are handrails) and while navigating the structure, as there are openings that she may fall through (we have not had a fall scare so far). Her biggest issues on this playground are 1) a hump she needs to go over, typically she almost falls here and has to hold on to the side wall with both hands, 2) a depression section, where almost the same things happen as the hump, and 3) when she is trying to sit down to slide--there is a handlebar above the slide, which she hangs on to, but the gap between her rear and the slide is so large she isn't able to sit down without help (she'd probably let go, and as her butt would hit the surface, her head would too). Still, she is navigating up and down the steps pretty well (some difficulty/frustration with her right leg), and climbing very well, and walking around and under the play structure without assistance!
Whew! Goin' for distance!
She also did the swings (can pump herself, but not start from a stop), and she also went on the big kid playstructure. I was helping another child--and she managed to climb up a chain ladder and into the playstructure all by herself! I'll take a picture of the ladder and post it
HERE.
Sweet!
Sunday, November 8, 2009
PT recap: Slalom
Last week at PT E spent a lot of time moving around. We've adapted her new AFOs (Cascade DAFOs) and I think with one more tweak, they'll be just right. E's gait is can be described as follows: can walk toe-heel, flat-foot, occasionally heel-toe, with the majority of her weight bearing on her left leg. She will take a long stride with the left foot and a small step with the right. Her arms are usually bent, and up around her midsection, and she swings them for momentum. When she is tired, her swing is larger, and her knees and feet will turn toward the midline.
We try to keep her stride SLOW and SMALL, as we are trying to foster good walking habits. She can turn around, but not pivot.
Theresa had set up stools as stepping platforms. E does NOT like this drill, b/c when she steps up or down, with her crutches or the handrail, she tries to muscle her movement through her arms instead of through her feet. Since there are no handholds with the stepstools, she wasn't excited about the task. So, she invented this new game:
There are some more PT videos on The Doodle.
Here is E trying to work on her small stride, as she was tasked to walk down the ramp solo with her crutches. Lookin' good!
We try to keep her stride SLOW and SMALL, as we are trying to foster good walking habits. She can turn around, but not pivot.
Theresa had set up stools as stepping platforms. E does NOT like this drill, b/c when she steps up or down, with her crutches or the handrail, she tries to muscle her movement through her arms instead of through her feet. Since there are no handholds with the stepstools, she wasn't excited about the task. So, she invented this new game:
There are some more PT videos on The Doodle.
Here is E trying to work on her small stride, as she was tasked to walk down the ramp solo with her crutches. Lookin' good!
Monday, November 2, 2009
Feldenkrais
On Halloween day (E wore her costume all day), E was scheduled for our first "real" stab at Feldenkrais. By that, I mean several sessions in a short span of time. Our plan was to have two sessions today (about 1 hour each), and then one two days later. It's hard to put into words (or video) the feel of the session, b/c a short clip really doesn't show much or do it justice. But, here goes...
Here are my impressions.
1. Keith is very patient. He talks very softly, and gets Elena to do things--this feat, alone, is amazing. He can command her attention by talking quietly, or not talking at all.
2. In order for E to be receptive to this gentle persuasion, it takes time. A lot of time. Meaning, the first half of the session it was basically playing with E, and getting E used to the idea of "mirroring" without telling her what to do or even that that was the goal. But by being quiet, and letting E lead part of the time, and "taking turns", it got E to be curious, and gave her some autonomy.
3. This autonomy is crucial. Keith is trying to get Elena to realize, on her own, how to move her body in a new way. For example: I spend a lot of my time barking at E to put her heels down; Keith tries to convey that having her heels up is just another way of moving--that nothing is "forbidden"--but that there are other ways of standing, sitting, moving. I think she is receptive to his message (not necessarily to mine).
Does it work? Well, that's hard to say. I'm not sure. I AM sure that we haven't wasted our time doing this, and we'll pursue it when we can. As far as real eye-opening experiences, here are the big things I noticed during our two sessions:
1. E was TIRED. She was really working hard. They did lots of transitions--all kinds of sitting, throwing balls, switching leads, standing up, balancing on balls, kicking, kneeling, etc.
2. For the first time, E had to think what she was doing with parts of her body she never thought about. For instance, she thought about what her arm NOT throwing the ball was doing (normally they move more or less the same way--both arms throw, only if one holds the ball) and got her to change it. That is DEFINITELY new.
3. When she was tired, she let him move her around. Let him touch her back, bottoms of her feet, let him move her legs around in all different motions. I don't think she would have let me do this, but she was tired, trusted Keith, and loose--her spasticity wasn't too problematic for most of the motions, probably b/c of her state of mind (or fatigue).
And, here's the kicker: we played soccer today (one day post-Feldenkrais) and I tried to get her to do a new soccer drill, where instead of just kicking the ball (or running into it, I should say) I had her put one foot on the ball, take it off, put the other foot on the ball, take it off, stand tall, and then kick (with handholds). She's never done that before. Keith spent a long time having her feet moved around, rolled on balls, foam rollers, etc. I didn't film that one: I'll film again and post
HERE.
4. On our third session, E was quicker to adapt to Keith's "lessons". This time she let him situate her face-up on a table and let him stimulate her feet and move her legs around (more of a classic starting point for older patients). He also made E a mat, with the clandestine goal of having her move different limbs independently (like a "Twister" game). He never showed her what to do, or what the goal was, but by the end of the session she was curious, and willing to identify where her arms and legs were trying to go.
E on the table
E likes Mr. Keith so much she sets up Mr. Zebra so she can treat him
E's "Twister" Mat
Overall, I am very pleased. Not just b/c I see the potential of this method, but because it is so very different from the other things we are doing. I am learning a lot, too. Keith doesn't bargain, or tease, or reward, or insist on movement styles, like I and other therapists do. Don't get me wrong--those things are valuable, and have DEFINITELY paid off. Keith has a very patient approach to movement, and he really makes E think about what she is doing. I'm not sure how much progress we will make, but I'm curious to find out, and E enjoys the time.
Here are my impressions.
1. Keith is very patient. He talks very softly, and gets Elena to do things--this feat, alone, is amazing. He can command her attention by talking quietly, or not talking at all.
2. In order for E to be receptive to this gentle persuasion, it takes time. A lot of time. Meaning, the first half of the session it was basically playing with E, and getting E used to the idea of "mirroring" without telling her what to do or even that that was the goal. But by being quiet, and letting E lead part of the time, and "taking turns", it got E to be curious, and gave her some autonomy.
3. This autonomy is crucial. Keith is trying to get Elena to realize, on her own, how to move her body in a new way. For example: I spend a lot of my time barking at E to put her heels down; Keith tries to convey that having her heels up is just another way of moving--that nothing is "forbidden"--but that there are other ways of standing, sitting, moving. I think she is receptive to his message (not necessarily to mine).
Does it work? Well, that's hard to say. I'm not sure. I AM sure that we haven't wasted our time doing this, and we'll pursue it when we can. As far as real eye-opening experiences, here are the big things I noticed during our two sessions:
1. E was TIRED. She was really working hard. They did lots of transitions--all kinds of sitting, throwing balls, switching leads, standing up, balancing on balls, kicking, kneeling, etc.
2. For the first time, E had to think what she was doing with parts of her body she never thought about. For instance, she thought about what her arm NOT throwing the ball was doing (normally they move more or less the same way--both arms throw, only if one holds the ball) and got her to change it. That is DEFINITELY new.
3. When she was tired, she let him move her around. Let him touch her back, bottoms of her feet, let him move her legs around in all different motions. I don't think she would have let me do this, but she was tired, trusted Keith, and loose--her spasticity wasn't too problematic for most of the motions, probably b/c of her state of mind (or fatigue).
And, here's the kicker: we played soccer today (one day post-Feldenkrais) and I tried to get her to do a new soccer drill, where instead of just kicking the ball (or running into it, I should say) I had her put one foot on the ball, take it off, put the other foot on the ball, take it off, stand tall, and then kick (with handholds). She's never done that before. Keith spent a long time having her feet moved around, rolled on balls, foam rollers, etc. I didn't film that one: I'll film again and post
HERE.
4. On our third session, E was quicker to adapt to Keith's "lessons". This time she let him situate her face-up on a table and let him stimulate her feet and move her legs around (more of a classic starting point for older patients). He also made E a mat, with the clandestine goal of having her move different limbs independently (like a "Twister" game). He never showed her what to do, or what the goal was, but by the end of the session she was curious, and willing to identify where her arms and legs were trying to go.
E on the table
E likes Mr. Keith so much she sets up Mr. Zebra so she can treat him
E's "Twister" Mat
Overall, I am very pleased. Not just b/c I see the potential of this method, but because it is so very different from the other things we are doing. I am learning a lot, too. Keith doesn't bargain, or tease, or reward, or insist on movement styles, like I and other therapists do. Don't get me wrong--those things are valuable, and have DEFINITELY paid off. Keith has a very patient approach to movement, and he really makes E think about what she is doing. I'm not sure how much progress we will make, but I'm curious to find out, and E enjoys the time.
Sunday, November 1, 2009
Halloween!
We LOVE Halloween!
Elena was a giraffe this year! I incorporated her loftstrands into the costume as her front legs.
Giraffe Front View
Giraffe Side View
Some Halloweens have been pretty hard...especially before E was more mobile. It was hard on me to see all those kids moving around, being so cute, having such a good, easy time. But it got better.
This year, our goal was to go to at least 5 houses, with E using her crutches at every house. E had to do something, but not necessarily everything, at each house we visited--go up the driveway, up steps, down steps, across stones, etc. I pushed her in her stroller inbetween houses. She did very well, especially considering she had 2 Feldenkrais sessions, with a lot of walking downtown inbetween (she did nap before trick-or-treating).
We went trick-or-treating with some friends from down the street. That was another nice treat--this is our first year planning on going with friends. It was really nice to be included in a group.
E went to over 10 houses! She even braved some "spooky" ones, but didn't want to hang around after getting some candy. When the kids were done, we ended up going to G & R's house for a bathroom break--and ended up playing there for over an hour! E went to their basement playroom, and I tried to let her just navigate it on her own. E was AWESOME. She walked the whole room (at least 13 feet), and only fell once. The other kids were great to her. She did their indoor slide on her own. She tried to stand up from the floor on her own several times, succeeding once. She also didn't complain about her AFOs hurting! This whole experience made me think, someday SOON, she'll be able to play safely in a strange place, with other people, while I am in another room.
PS. Like her costume? If you have or know a child--especially one that has loftstrands, and they would like to have it, let me know. I'll pick from responses and send it to you. The costume is size 3T shirt (I think it runs small), and the pants are modeled after a 3T pant. FYI, E is close to 36" tall and weighs 26 lbs. I made the pants by piecing material together; the pants themselves to not have elastic, but are sewn to 2T "bloomers" inside the pants. I'd be happy to hold the costume until next year, so you can see how much your child has grown in the hopes it will fit.
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