Tonight we went to our Little Gym Class. Elena has reached a plateau of sorts with this place--she has been in the "Beasts" or "SuperBeasts" category class for several years. Most kids are in it a year. Our problem is that the next class up is without parental intervention, so unless she is independently mobile, she can't move up. The social interaction in our current class isn't terribly enriching for Elena (most of the children are half her age, and don't interact much with each other) but the gross motor challenges are still good for her.
I pieced together a video from tonight. The first segment (flip on the bar) is the very first thing she did. She took more independent steps in this class than we've ever seen her take since the operation. Her leg extension is pretty good, but her heel IS up a little in her right shoe. The last walking segment you can see her do a sort of "hip rotation" when she steps with her right foot. I'm not sure why she does this, but it's pretty consistent. She did it before the surgery too--it was probably worse, but now the rest of her body looks better so it might seem more exaggerated to me. I hope that if/when her right heel can get flat (tendon stretching/lengthening) maybe that will look better. Her hands are up near her shoulders, which she did before the surgery also, but again--not as stiff, and she's able to move them independently even when walking. She also falls better (not shown)--she can bend her knees and fall to one side or fall forward on her knees rather than falling "like a tree".
Tuesday, March 31, 2009
Back on the Horse (Literally)
Elena had to take a break from therapeutic horseback riding for 6 weeks after surgery. This was her first day back. Our lesson was as if we never left--still 30 minutes, and our handler had E do her normal range of motions--sitting forward, backward, sideways. The only real difference is that Elena needed more help with her transitions, and that she was a little more wobbly than usual. She rode Patchy, who is a large pony. Sometimes, she rides Cookie, a smaller pony (takes more core strength when she rides him).
These are action shots of her riding Patchy.
Reaching forwards (not shown) and backwards from forward sitting (trunk rotations)
Backwards with "airplane hands" (extensions)
side saddle with "airplane hands"
Normally we do therapeutic horseback riding once a week. The next couple months will be intermittent, as there are scheduling conflicts at The Barn.
These are action shots of her riding Patchy.
Reaching forwards (not shown) and backwards from forward sitting (trunk rotations)
Backwards with "airplane hands" (extensions)
side saddle with "airplane hands"
Normally we do therapeutic horseback riding once a week. The next couple months will be intermittent, as there are scheduling conflicts at The Barn.
Wednesday, March 25, 2009
5 weeks post-op: Now with video!
I don't have great pictures from therapy today, but suffice it to say that E's been working hard. We've been trying to keep her upright (less crawling and being carried) this week. Today, she had PT in the afternoon--intro to tap dancing (putting "taps" on her heels), kicking (trying to kick only from the knee down), therapeutic trike, dorsiflexion, etc. After all that (and being a little sick, to boot) she still wanted to do the treadmill and leglifts this evening. Here's how we do it:
Treadmill (she gets to watch movies during Treadmill Time)
Close-up: note how she drags her right leg sometimes. This gets worse as she tires. The left foot gait pattern occasionally goes heel-toe instead of flat-foot. Also, while her right foot is toe-heel, she gets better extension of the leg than she did pre-SDR.
The lift on her left shoe helps equalize her right and left legs; her right leg is longer, and has the opportunity to extend fully b/c the left side is lengthened to "match". We see much less knee/hip rotation "caving in" (right side) since we've had the lift.
Overall, she looks great here. Unfortunately, without a firm grip or contact guard, Elena will immediately start losing her balance. We've been treadmilling for months now, and this hasn't improved much. Still...we will be patient!
Leg Lifts (5 extensions each leg with 1lb weights; repeat 3-5 times each side)
Since starting our leg lift regimen (around Thanksgiving of last year), we've noticed a dramatic increase in her strength and stamina for walking, squatting, standing, etc. Her extension is much better now than pre-SDR. Note she does try to extend both sides at the same time (I hold one foot down), and she rounds her back/holds on to compensate for core weakness.
Plus stretching as usual--we're introducing some different stretches, and trying to get her to be more independent with the stretching regimen. More on that later.
Treadmill (she gets to watch movies during Treadmill Time)
Close-up: note how she drags her right leg sometimes. This gets worse as she tires. The left foot gait pattern occasionally goes heel-toe instead of flat-foot. Also, while her right foot is toe-heel, she gets better extension of the leg than she did pre-SDR.
The lift on her left shoe helps equalize her right and left legs; her right leg is longer, and has the opportunity to extend fully b/c the left side is lengthened to "match". We see much less knee/hip rotation "caving in" (right side) since we've had the lift.
Overall, she looks great here. Unfortunately, without a firm grip or contact guard, Elena will immediately start losing her balance. We've been treadmilling for months now, and this hasn't improved much. Still...we will be patient!
Leg Lifts (5 extensions each leg with 1lb weights; repeat 3-5 times each side)
Since starting our leg lift regimen (around Thanksgiving of last year), we've noticed a dramatic increase in her strength and stamina for walking, squatting, standing, etc. Her extension is much better now than pre-SDR. Note she does try to extend both sides at the same time (I hold one foot down), and she rounds her back/holds on to compensate for core weakness.
Plus stretching as usual--we're introducing some different stretches, and trying to get her to be more independent with the stretching regimen. More on that later.
Growth Spurt
Elena has been growing like mad. At least, I think so--she's eating TONS and seems to lengthen every day. I have heard horrible stories regarding growth spurts and spasticity--kids end up SO TIGHT and desperately need lengthening/aggressive stretching therapies during and post-spurt.
Any time I feel a little sad about how Elena's heels are *slightly* up, I think about how she would be had we NOT done SDR. She would be on her tip-tippy toes, falling all over the place, unable to stay down in her braces. I am sure of this.
Because of this surgery, at this time (during growth spurt) we're able to get E in her braces. That is priceless. I checked her tonight--she's grown an inch since December 28th, 2008.
Any time I feel a little sad about how Elena's heels are *slightly* up, I think about how she would be had we NOT done SDR. She would be on her tip-tippy toes, falling all over the place, unable to stay down in her braces. I am sure of this.
Because of this surgery, at this time (during growth spurt) we're able to get E in her braces. That is priceless. I checked her tonight--she's grown an inch since December 28th, 2008.
Friday, March 20, 2009
1st Post-Op Neurosurgery Visit
Yesterday we went back to see Dr. Elias at UVA Neurosurgery for our first follow-up.
I might be exaggerating, but there were definitely a lot of "WOW"s, between him and his nurse.
YAY!!
Elena showed them how she can do the following (could she do this before surgery):
While lying down, she can cross her (straight) legs across the ankles. She can cross with either leg on demand. (NO)
While lying down, she can bring her knee towards her chest (not all the way up). She does it better with the left, but the right looks pretty good too. (YES)
While lying down, she can do "snow angel" motions with her legs (abduction/adduction). Sometimes her legs are bent, and sometimes she moves them "one at a time" instead of both "in and out" at the same time. (NO)
She can lie on her back with her legs straight, with the backs of her legs against the surface. Her hips seem even. (YES)
She can turn over from her back to her stomach completely. While flat on her stomach, her quads stay in contact with the floor surface, and her legs don't cross (or touch except maybe at the tips of her toes). (YES)
She can walk with her walker while "squishing her feet" flat on the floor. She walks toe-heel with both feet. She gets her left foot flat, her right foot mostly flat (heel is up just a bit). (NO)
While holding on for balance, she can squat down with feet mostly flat. Her knees touch. When asked to open her knees to the side, she can not or does not do it (she has done this ONCE in a therapy session last week). (NO)
I might be exaggerating, but there were definitely a lot of "WOW"s, between him and his nurse.
YAY!!
Elena showed them how she can do the following (could she do this before surgery):
While lying down, she can cross her (straight) legs across the ankles. She can cross with either leg on demand. (NO)
While lying down, she can bring her knee towards her chest (not all the way up). She does it better with the left, but the right looks pretty good too. (YES)
While lying down, she can do "snow angel" motions with her legs (abduction/adduction). Sometimes her legs are bent, and sometimes she moves them "one at a time" instead of both "in and out" at the same time. (NO)
She can lie on her back with her legs straight, with the backs of her legs against the surface. Her hips seem even. (YES)
She can turn over from her back to her stomach completely. While flat on her stomach, her quads stay in contact with the floor surface, and her legs don't cross (or touch except maybe at the tips of her toes). (YES)
She can walk with her walker while "squishing her feet" flat on the floor. She walks toe-heel with both feet. She gets her left foot flat, her right foot mostly flat (heel is up just a bit). (NO)
While holding on for balance, she can squat down with feet mostly flat. Her knees touch. When asked to open her knees to the side, she can not or does not do it (she has done this ONCE in a therapy session last week). (NO)
4 weeks post-op
Elena is doing GREAT. Cruising, pushing her walker, using her loftstrands (very little, but some), jumping (while holding on to something), and some (a few) independent steps. Overall she is doing very very well, with her main issues being her right heel creeping up (for whatever reason, probably tendon shortness?) and overall weakness.
Soccer is a big motivator for E. I play soccer, and she ALWAYS wants to play too. We walk and hold both hands while she kicks (or, more likely, runs into) the ball. She wants to "do it herself". So, I told her she could-but as soon as I told her that meant standing up alone and moving, she didn't want to anymore. So I set it up so she could kick the ball a few paces (2 or 3) while walking to the back of the couch. It was a RAVING success--she did this, steadying herself to walk and kick, sometimes even stopping to steady herself or kick with her stronger leg--10 or more times, with a "speedway break", which is the small walkspace between the couch and the wall (she can steady herself with both hands to the sides). Jason and I both believe the Speedway (we also call it The Track) has really helped Elena's speed and confidence. She can move around the couch area pretty quickly--almost as fast as pre-SDR.
The used the soccer reference at KCRC, trying to get E to kick from only the knee down (normally she just runs into balls with her legs, trying to make contact with her feet). The motion of kicking (knee-down) was successful, albeit very very small.
Kick Left (note how hard she grips the walker in these pics)
Kick Right
She also tried flexing her feet (ankle only is the goal) out of a tray of rice/lentils. This time--I still can't believe it--SHE DID IT. BOTH FEET. The PT would put a penny on the tops of her toes, and cover them with rice and ask her to move her feet to find the penny. She flexed her feet between a centimeter and an inch, more on the left side (typical)--but even on the right, the degree of isolated movement was unmistakable. I was SHOCKED. These pics are from where she did it with her legs "straighter" rather than bent. Pictures probably don't do it justice, but here's what I have.
Dorsiflex left
Dorsiflex right
Shooting baskets, bare feet (keeping that right foot down!)
She also got to use the therapeutic trike. She loves this tricycle! This time was a huge improvement from last week--not only did she propel it herself for part of the time, she also steered it (at the same time). Like the previous post about swinging--before the surgery, it was nearly impossible for Elena to do different, concentrated movements with the upper and lower parts of her body. Now she surprises us all the time!
OH. One more important thing. The PT checked after I asked about leg length differences--and she said she can see that her right leg IS PHYSICALLY longer than her left. Not by much, but enough for her to notice. We've had a lift on her left shoe since the end of 2008 to accommodate what we thought was a FUNCTIONAL length difference. Either way, she'll need this lift in all her footwear, I guess.
Soccer is a big motivator for E. I play soccer, and she ALWAYS wants to play too. We walk and hold both hands while she kicks (or, more likely, runs into) the ball. She wants to "do it herself". So, I told her she could-but as soon as I told her that meant standing up alone and moving, she didn't want to anymore. So I set it up so she could kick the ball a few paces (2 or 3) while walking to the back of the couch. It was a RAVING success--she did this, steadying herself to walk and kick, sometimes even stopping to steady herself or kick with her stronger leg--10 or more times, with a "speedway break", which is the small walkspace between the couch and the wall (she can steady herself with both hands to the sides). Jason and I both believe the Speedway (we also call it The Track) has really helped Elena's speed and confidence. She can move around the couch area pretty quickly--almost as fast as pre-SDR.
The used the soccer reference at KCRC, trying to get E to kick from only the knee down (normally she just runs into balls with her legs, trying to make contact with her feet). The motion of kicking (knee-down) was successful, albeit very very small.
Kick Left (note how hard she grips the walker in these pics)
Kick Right
She also tried flexing her feet (ankle only is the goal) out of a tray of rice/lentils. This time--I still can't believe it--SHE DID IT. BOTH FEET. The PT would put a penny on the tops of her toes, and cover them with rice and ask her to move her feet to find the penny. She flexed her feet between a centimeter and an inch, more on the left side (typical)--but even on the right, the degree of isolated movement was unmistakable. I was SHOCKED. These pics are from where she did it with her legs "straighter" rather than bent. Pictures probably don't do it justice, but here's what I have.
Dorsiflex left
Dorsiflex right
Shooting baskets, bare feet (keeping that right foot down!)
She also got to use the therapeutic trike. She loves this tricycle! This time was a huge improvement from last week--not only did she propel it herself for part of the time, she also steered it (at the same time). Like the previous post about swinging--before the surgery, it was nearly impossible for Elena to do different, concentrated movements with the upper and lower parts of her body. Now she surprises us all the time!
OH. One more important thing. The PT checked after I asked about leg length differences--and she said she can see that her right leg IS PHYSICALLY longer than her left. Not by much, but enough for her to notice. We've had a lift on her left shoe since the end of 2008 to accommodate what we thought was a FUNCTIONAL length difference. Either way, she'll need this lift in all her footwear, I guess.
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