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.
Showing posts with label SDR. Show all posts
Showing posts with label SDR. Show all posts
Thursday, November 19, 2009
Wednesday, July 15, 2009
Neurosurgery Follow-up #2
Last week E had her second post-SDR follow up.
I have to say, I'm disappointed with the visit. Overall I feel like Elena is doing fantastically--Dr. Elias echoed that sentiment, but he really didn't examine her much. I thought he'd be pretty interested in her range of motion, how much lower her heels are, her ability to squat (some), or how much LESS tight her legs are--but maybe he got all the information he needed by watching her move a little. She walked across the room, independently, a couple paces at a time (nowhere near her best effort, as it was past lunchtime, and she was out of her shoe). She sat on a bench, and crossed one leg over the other (with her shoes on), each side. He asked if she was having any problems toileting, which she does not. He was very pleased.
He did say that I should expect her to improve a lot more. I had the impression that the majority of the changes come in the first 6 months after SDR; he said "double that" and then some. I'm pretty excited about that!
The PT there also examined her, and took a video of her walking. We waited a long time just for her to do that. I could have directed her to this blog--better videos, and we wouldn't have had to wait so long. Hmph.
I have to say, I'm disappointed with the visit. Overall I feel like Elena is doing fantastically--Dr. Elias echoed that sentiment, but he really didn't examine her much. I thought he'd be pretty interested in her range of motion, how much lower her heels are, her ability to squat (some), or how much LESS tight her legs are--but maybe he got all the information he needed by watching her move a little. She walked across the room, independently, a couple paces at a time (nowhere near her best effort, as it was past lunchtime, and she was out of her shoe). She sat on a bench, and crossed one leg over the other (with her shoes on), each side. He asked if she was having any problems toileting, which she does not. He was very pleased.
He did say that I should expect her to improve a lot more. I had the impression that the majority of the changes come in the first 6 months after SDR; he said "double that" and then some. I'm pretty excited about that!
The PT there also examined her, and took a video of her walking. We waited a long time just for her to do that. I could have directed her to this blog--better videos, and we wouldn't have had to wait so long. Hmph.
Sunday, May 3, 2009
10 weeks post-op
Sorry for the lag between posts, Jason and I were on vacation (sans kids)!
No real big changes this week...everything seems to be very slow and gradual. I do notice Elena is better able to move her legs independently, and seems to have more control of her trunk while moving her legs. I see this as "her midsection and legs ceasing to move as one unit". For instance, Elena can now take off her shoes and braces (including all the velcro tabs) and socks off herself while sitting (and not falling over in the process). This is pretty new.
Overall, Elena's movements are more fluid, less jerky, and can be done while playing (movement does not take as much mental energy). There is still a long way to go, as her balance is still poor.
The big focus seems to continue to be getting Elena to move around without her knees caving in. At KCRC, Emily started off with E playing "Beanbag basketball", having her squat to pick up a bag, and trying to keep her knees apart.
This squat is actually better--when E reaches forward, she really gets the feeling of having her weight over her heels. Good stretching here...I have to believe this feels different for E, as she normally isn't in this position.
Emily said she "wasn't helping Elena all that much". But, if she were to let go while Elena was in a deep squat, I'm sure she'd fall.
I suggested an activity we'd been doing earlier this week--treasure hunting, where Elena squats down to different heights to pick up treasure. If she picks it up without falling, she keeps it. I had done this with coins, of varying heights--she DID pick all of them up, even the quarter on the floor--but it sure wasn't pretty (no pictures taken). Emily adapted this idea to a "scavenger hunt" where the objects were around the room, hidden under tissues.
Megan helping Elena read the scavenger list
Finding an item
The scavenger layout
Emily also tried to get Elena to do leg lifts independently on each leg. First she strapped ankle weights to each leg as usual, and told her which one to move. Like usual, Elena moved both legs at the same time. Then she took one weight off, and asked Elena to move the foot with (or without) the weight. She still moved both legs at the same time, but was aware they felt differently. Emily used a vibrator to stimulate one leg, while she asked Elena to move the other. It worked, a little. The awareness of moving her limbs/muscle groups independently is slowly coming.
Lastly, I had been inspired from my vacation massage to gently massage Elena's legs/feet after stretching every night. She seems to enjoy it, as long as it is gentle. Emily mentioned a technique called "ironing" (pic below). Starting on the upper leg, press gently on the leg and continue pressure as the hand moves down the leg toward the heel. It's sort of like petting, only a little firmer and in one direction. Emily said to do it before stretching (or before some activity, like therapy) and then again afterwards to see if it feels different or she reacts differently.
No real big changes this week...everything seems to be very slow and gradual. I do notice Elena is better able to move her legs independently, and seems to have more control of her trunk while moving her legs. I see this as "her midsection and legs ceasing to move as one unit". For instance, Elena can now take off her shoes and braces (including all the velcro tabs) and socks off herself while sitting (and not falling over in the process). This is pretty new.
Overall, Elena's movements are more fluid, less jerky, and can be done while playing (movement does not take as much mental energy). There is still a long way to go, as her balance is still poor.
The big focus seems to continue to be getting Elena to move around without her knees caving in. At KCRC, Emily started off with E playing "Beanbag basketball", having her squat to pick up a bag, and trying to keep her knees apart.
This squat is actually better--when E reaches forward, she really gets the feeling of having her weight over her heels. Good stretching here...I have to believe this feels different for E, as she normally isn't in this position.
Emily said she "wasn't helping Elena all that much". But, if she were to let go while Elena was in a deep squat, I'm sure she'd fall.
I suggested an activity we'd been doing earlier this week--treasure hunting, where Elena squats down to different heights to pick up treasure. If she picks it up without falling, she keeps it. I had done this with coins, of varying heights--she DID pick all of them up, even the quarter on the floor--but it sure wasn't pretty (no pictures taken). Emily adapted this idea to a "scavenger hunt" where the objects were around the room, hidden under tissues.
Megan helping Elena read the scavenger list
Finding an item
The scavenger layout
Emily also tried to get Elena to do leg lifts independently on each leg. First she strapped ankle weights to each leg as usual, and told her which one to move. Like usual, Elena moved both legs at the same time. Then she took one weight off, and asked Elena to move the foot with (or without) the weight. She still moved both legs at the same time, but was aware they felt differently. Emily used a vibrator to stimulate one leg, while she asked Elena to move the other. It worked, a little. The awareness of moving her limbs/muscle groups independently is slowly coming.
Lastly, I had been inspired from my vacation massage to gently massage Elena's legs/feet after stretching every night. She seems to enjoy it, as long as it is gentle. Emily mentioned a technique called "ironing" (pic below). Starting on the upper leg, press gently on the leg and continue pressure as the hand moves down the leg toward the heel. It's sort of like petting, only a little firmer and in one direction. Emily said to do it before stretching (or before some activity, like therapy) and then again afterwards to see if it feels different or she reacts differently.
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.
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.
Thursday, March 12, 2009
Three weeks post-op
Elena has been getting stronger and her endurance is improving, but there are still some lingering concerns--not really surprises, though. Her posture is more even, and her tone now allows her to move better... but she continually leans on her left side/left foot/left hip. Sometimes this is more extreme. She continually needs to be reminded to stand on two feet (instead of having all her weight on the left one), have these feet even (she postures her right one back), and to try to keep her feet flat. Her right foot stays better in her AFO/shoe, but needs to be fixed (heel back down) several times a day.
Example of her preferred posture (right foot back):
Left leaning while using posterior walker:
Extreme lean on the hippity-hop:
Here's the good pics!
She can do the hippity-hop for a few bounces herself. She tries hard to right herself, and does a pretty good job. She can bounce, pushing off her heels--but she hasn't figure out that's how you do it (right now she's just lucky)
Riding the therapeutic trike--she even propelled it herself for 3-8 feet! That's a first, she hasn't engaged on our trike at home (but that was last year). Her right leg caves in, but not nearly as much as it used to (but that could be b/c of the different type of trike).
Abduction/Adduction--she could not do this before the surgery.
Trying to flex her feet out of rice/lentils (she did it, a little)
Bridges--she had a hard time with these last week. Little sister Vivian is mesmerized.
Sit-ups (assisted, for now)
Standing tall, after building her tower (with help to bear weight centrally)
Incision
Overall, looking pretty good!
Example of her preferred posture (right foot back):
Left leaning while using posterior walker:
Extreme lean on the hippity-hop:
Here's the good pics!
She can do the hippity-hop for a few bounces herself. She tries hard to right herself, and does a pretty good job. She can bounce, pushing off her heels--but she hasn't figure out that's how you do it (right now she's just lucky)
Riding the therapeutic trike--she even propelled it herself for 3-8 feet! That's a first, she hasn't engaged on our trike at home (but that was last year). Her right leg caves in, but not nearly as much as it used to (but that could be b/c of the different type of trike).
Abduction/Adduction--she could not do this before the surgery.
Trying to flex her feet out of rice/lentils (she did it, a little)
Bridges--she had a hard time with these last week. Little sister Vivian is mesmerized.
Sit-ups (assisted, for now)
Standing tall, after building her tower (with help to bear weight centrally)
Incision
Overall, looking pretty good!
Monday, March 9, 2009
Swinging Sunday
Last weekend, E got to do a very small amount of sledding b/c we got a couple inches of snow. This weekend, it was 80 degrees and beautifully sunny. Perfect weather for swinging!
We've been trying to teach Elena to swing herself--pumping her legs back and forth to keep going. Before the surgery, Elena "stiffened up" anytime she was engaging her upper body--which meant pumping her legs while holding on to a moving swing didn't happen.
After the surgery...well, it took 20 minutes.
How cool is THAT?!
We've been trying to teach Elena to swing herself--pumping her legs back and forth to keep going. Before the surgery, Elena "stiffened up" anytime she was engaging her upper body--which meant pumping her legs while holding on to a moving swing didn't happen.
After the surgery...well, it took 20 minutes.
How cool is THAT?!
Weekend at CMOR
We spent Saturday at the Children's Museum of Richmond. We love this place, but it was a gamble b/c it was our first day where we expected Elena to be playing hard without a nap (unless she took on in the car--which she didn't, of course).
We were at the museum for over 2 hours, well past Elena's naptime, and in a word, she was...AWESOME. Using her walker, climbing (assisted), going up/down stairs (assisted), standing, sitting while playing, etc. Here are some favorite pictures:
Playing Doctor in the CMOR ambulance
Going to the CMOR bank
Dinosaur Area
A little too early for bumpy slides...not too happy after that one (back still tender)
So, aside from crying the whole way home....a perfect day!
We were at the museum for over 2 hours, well past Elena's naptime, and in a word, she was...AWESOME. Using her walker, climbing (assisted), going up/down stairs (assisted), standing, sitting while playing, etc. Here are some favorite pictures:
Playing Doctor in the CMOR ambulance
Going to the CMOR bank
Dinosaur Area
A little too early for bumpy slides...not too happy after that one (back still tender)
So, aside from crying the whole way home....a perfect day!
Flat is beautiful
We're getting back to our same-old-routine (plus a few more exercises). Back to the treadmill...leg lifts...
Elena had her PT session last week, mostly barefoot. She still likes to point/keep on her toes on the right side, but we learned a new voice cue: "squish your feet". When we tell her that, she puts her heels down and tries to squish the floor.
Next was trying to have her bear weight on either side by playing in half-kneel. When she bears weight on her left, her right knee caves in badly and she starts falling on her rear b/c she doesn't know/understand to steady herself by keeping her right knee up. She does it beautifully on the opposite side (not shown).
She did some assisted walking without her braces on (this is rare at PT). I immediately noticed she would nicely extend her leg (through the hamstring) on her left side (strong side). Her gait pattern on the left looks more "flat footed" than "toe-heel", but this has always been the case--only now it's a more fluid motion. The right is still "toe-heel", but it too is more of a relaxed motion than a laborious, dragging effort.
Elena had her PT session last week, mostly barefoot. She still likes to point/keep on her toes on the right side, but we learned a new voice cue: "squish your feet". When we tell her that, she puts her heels down and tries to squish the floor.
Next was trying to have her bear weight on either side by playing in half-kneel. When she bears weight on her left, her right knee caves in badly and she starts falling on her rear b/c she doesn't know/understand to steady herself by keeping her right knee up. She does it beautifully on the opposite side (not shown).
She did some assisted walking without her braces on (this is rare at PT). I immediately noticed she would nicely extend her leg (through the hamstring) on her left side (strong side). Her gait pattern on the left looks more "flat footed" than "toe-heel", but this has always been the case--only now it's a more fluid motion. The right is still "toe-heel", but it too is more of a relaxed motion than a laborious, dragging effort.
Sunday, March 1, 2009
On the Move Again
After some tweaks to her AFOs, we've been getting Elena up and moving again. That's been easy, b/c she wants to be independent. We let her cruise by herself (with someone close by) and have just let her start pushing things (walker, stroller, cart, etc.). We don't let her do much without supervision b/c she hasn't fallen since her surgery, and we're worried she could hurt the incision. That should change in a week or two...or whenever she falls and we don't catch her.
Activities from this weekend: Saturday Shopping at Harris Teeter
We let her push the kiddie cart. She was standing or pushing for at least 20 minutes. We'd hold the "flag" on the cart to keep her moving slowly--and keep her from leaning into her stride too much. She wanted to look at greeting cards, so she did, and aside from taking pictures, I kept her right leg straight and her hips neutral as she perused the card selection.
Sunday Visiting Mommy's Work (UVA Hospital)
Back at the Life Less Ordinary picture hallway! I might change my blog picture soon. She pushed her walker for about 15 minutes after "playing scientist" with her knee immobilizers for 15 minutes. After a visit to the coffee ladies, she used her walker some more, but not as long. The biggest difference now is that she is willing to shift her weight to her right side more often (but still defers to the left), and we haven't seen her drag her right foot ONCE since the surgery (she used to do that ALL THE TIME).
Activities from this weekend: Saturday Shopping at Harris Teeter
We let her push the kiddie cart. She was standing or pushing for at least 20 minutes. We'd hold the "flag" on the cart to keep her moving slowly--and keep her from leaning into her stride too much. She wanted to look at greeting cards, so she did, and aside from taking pictures, I kept her right leg straight and her hips neutral as she perused the card selection.
Sunday Visiting Mommy's Work (UVA Hospital)
Back at the Life Less Ordinary picture hallway! I might change my blog picture soon. She pushed her walker for about 15 minutes after "playing scientist" with her knee immobilizers for 15 minutes. After a visit to the coffee ladies, she used her walker some more, but not as long. The biggest difference now is that she is willing to shift her weight to her right side more often (but still defers to the left), and we haven't seen her drag her right foot ONCE since the surgery (she used to do that ALL THE TIME).
Friday, February 27, 2009
Early Observations: Tone vs. Contracture
I meant to update this 2 days ago but I didn't have the time. We took Elena to her first post-SDR PT session at Kluge Children's Rehabilitation Center (KCRC). Overall the visit was good. Emily (PT) basically tried to move E to get an idea of her range.
There is no doubt her tone has improved (now has less tone than pre-SDR). Her left foot bends nicely at the ankle, and we have no problem getting her into her AFOs (we just started wearing them 2 days ago, but she still doesn't wear them all day). Her right foot has always been the problem. It's amazingly easier to put her in her AFO on that side, but after minutes of playing, I noticed her heel was "up" again (near the hinge). I was dissapointed b/c I didn't think that would happen. Well, not happen YET--I figured it would definitely happen (probably on both sides) as Elena grows (growth spurts typically are problematic for spastic diplegics, even post-SDR). Why wouldn't E's right heel stay down? Still too much spasticity post-SDR? Muscle memory (after all, E's been moving with her right heel up for YEARS)? Heel cord contracture (tendons too short)? Leg length discrepancy?
There was an initial disagreement between surgeons regarding which surgery to do first, the SDR or heel cord release--basically her heels are (were?) up b/c of spasticity (muscle tone) and tendon shortening (due to her calf muscles being in one default position too long, b/c she is always on her toes). It's hard to tell which issue is greater because they mask each other. Now that the tone has been lessened, it's possible we're seeing a contracture. We will most likely lengthen her tendons surgically at a later time.
Since she is young, I am hoping we can stretch her tendons over time to postpone surgery for a couple of years. I don't know if that is possible. We're going to stay as conservative as possible. Of course, if it's just muscle memory or lack of confidence that is preventing her from standing up straight with her heels down, that should be easier to remedy.
Emily testing range, right (left is fine, not shown):
Emily testing range in her AFOs (socks are always on, but we left them off for viewing/pictures), right. Note when light pressure is removed, her heel comes up. We need to have her AFOs fit more snugly to keep her ankle down as much as possible.
Standing in AFOs, left and right side pics:
Doesn't the right look better standing up?
Standing zoomout (note she is bent over at the waist). Her posture should improve with some stretching and boost in confidence (she is still not standing very often).
To passively stretch her legs, Emily gave us knee immobilizers--velcro straps with unbendable planks to keep her in standing. When (and if) her AFOs can be tweaked to keep her heels down, these immobilizers will help her legs to stay straight while keeping her knees from caving in (classic spastic diplegic stance). She tolerates them very well. Ideally she'll wear them for 30 minutes a day--today we did 6 minutes.
There is no doubt her tone has improved (now has less tone than pre-SDR). Her left foot bends nicely at the ankle, and we have no problem getting her into her AFOs (we just started wearing them 2 days ago, but she still doesn't wear them all day). Her right foot has always been the problem. It's amazingly easier to put her in her AFO on that side, but after minutes of playing, I noticed her heel was "up" again (near the hinge). I was dissapointed b/c I didn't think that would happen. Well, not happen YET--I figured it would definitely happen (probably on both sides) as Elena grows (growth spurts typically are problematic for spastic diplegics, even post-SDR). Why wouldn't E's right heel stay down? Still too much spasticity post-SDR? Muscle memory (after all, E's been moving with her right heel up for YEARS)? Heel cord contracture (tendons too short)? Leg length discrepancy?
There was an initial disagreement between surgeons regarding which surgery to do first, the SDR or heel cord release--basically her heels are (were?) up b/c of spasticity (muscle tone) and tendon shortening (due to her calf muscles being in one default position too long, b/c she is always on her toes). It's hard to tell which issue is greater because they mask each other. Now that the tone has been lessened, it's possible we're seeing a contracture. We will most likely lengthen her tendons surgically at a later time.
Since she is young, I am hoping we can stretch her tendons over time to postpone surgery for a couple of years. I don't know if that is possible. We're going to stay as conservative as possible. Of course, if it's just muscle memory or lack of confidence that is preventing her from standing up straight with her heels down, that should be easier to remedy.
Emily testing range, right (left is fine, not shown):
Emily testing range in her AFOs (socks are always on, but we left them off for viewing/pictures), right. Note when light pressure is removed, her heel comes up. We need to have her AFOs fit more snugly to keep her ankle down as much as possible.
Standing in AFOs, left and right side pics:
Doesn't the right look better standing up?
Standing zoomout (note she is bent over at the waist). Her posture should improve with some stretching and boost in confidence (she is still not standing very often).
To passively stretch her legs, Emily gave us knee immobilizers--velcro straps with unbendable planks to keep her in standing. When (and if) her AFOs can be tweaked to keep her heels down, these immobilizers will help her legs to stay straight while keeping her knees from caving in (classic spastic diplegic stance). She tolerates them very well. Ideally she'll wear them for 30 minutes a day--today we did 6 minutes.
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