Well, E's had her casts on for over two weeks--and she's doing awesome. She hardly complains about them, even though I know they are not comfortable. She's using her crutches now, and cruising around the house (ADD VID HERE). She's also taking some independent steps across the room.
She doesn't walk with her right foot "flat"--she never has, really. But sometimes I see the "swing" of her step, where her foot is straight at the knee before she puts her foot on the ground--that's new. I'm trying not to get too excited about it, though...I know there will be weakness post-surgery/post-casting.
And she's a lot more confident every day. I had the both kids on my own a lot last week, at appointments--which was scary, as Vivian doesn't stay with me/listen very well, and E needs close supervision too. Well, I carried Viv and tried to "spot" E as we walked a good 200 feet into a building, on cobblestone, while E used her crutches, and it was freezing outside. I was worried about her; I didn't want her to fall.
"Mom, you take Vivian. I got this."
She sure did, too; she walked the whole way, certain steps (even in her casts), and never teetered. It's been like that since last Wednesday. We're also back to our bedtime routine, and even though E wants me close, she is settling in well to our successful regimen. Things are just great!
This week is huge: E has her eye appointment (we've known she needs a new prescription for months, but we couldn't get in any sooner--and the doc is worth the wait), and she gets her casts off.
Showing posts with label tendon. Show all posts
Showing posts with label tendon. Show all posts
Sunday, December 5, 2010
Monday, November 22, 2010
Post-Op: Day 2, 3
Day 2:
E has been on Valium 2x day; one dose in the morning, one dose before bed. She has been sleeping well. This early afternoon we went on a stroller ride to investigate Santa at the Omni Hotel. E was excited! The trip lasted about 2.5 hours; E (and Vivian) started melting down before we left. Both were tired; I think E was a little sore.
E got Tylenol, then took a nap.
E can sit in almost any position, to color or play, for a long time now.
She crawled a little, and we can carry her normally now (hands below her rear instead of "cradle" carry). Passive range of motion exercises show she can easily extend her legs, nearly fully, without pain with her ankles flexed in her casts.
Day 3:
E is crawling and can get into a sitting position on a low stool by herself--this requires some weight bearing on her feet, but she's doing it on the "toes" of her casts and strong-arming the rest on a nearby surface. I can undress her for toileting by resting her feet ever so slightly on the floor while she holds on to my neck (she is holding most of her weight off the floor). E tolerated some ball exercises (small circles while she was sitting on the ball, hands either to the sides or not holding on at all). She can do her own range of motion movements (while lying down, bring knee to chest, then back down with her leg straight on the floor) but her control going "down" is poor (I hold her leg so she won't "bang it" on the ground). She can do full bridges with her pelvis, which also requires weight bearing on the heels in her casts.
We tried partial standing; she was nervous to put any weight on her right leg. She can be placed in a half-kneel position on either leg, without pain, but I haven't had her get in that position independently.
She is still sleeping in bed with me, b/c she has trouble repositioning herself during the night, but only b/c the pillow between her legs is too big for her to move. I am hesitant to put her in her own bed until I know she can get out of bed (bear weight on her feet enough to get to the ground slowly) safely. The "sleeping with a parent" issue is a big one for us, b/c we've had sleep issues for a while and *just recently* (pre-surgery) were making such excellent progress. E is very rational regarding her sleep arrangement--she knows as soon as she's more able, she'll be in her own bed. She seems to be very calm about this (we'll see what actually happens!!).
E has been on Valium 2x day; one dose in the morning, one dose before bed. She has been sleeping well. This early afternoon we went on a stroller ride to investigate Santa at the Omni Hotel. E was excited! The trip lasted about 2.5 hours; E (and Vivian) started melting down before we left. Both were tired; I think E was a little sore.
E got Tylenol, then took a nap.
E can sit in almost any position, to color or play, for a long time now.
She crawled a little, and we can carry her normally now (hands below her rear instead of "cradle" carry). Passive range of motion exercises show she can easily extend her legs, nearly fully, without pain with her ankles flexed in her casts.
Day 3:
E is crawling and can get into a sitting position on a low stool by herself--this requires some weight bearing on her feet, but she's doing it on the "toes" of her casts and strong-arming the rest on a nearby surface. I can undress her for toileting by resting her feet ever so slightly on the floor while she holds on to my neck (she is holding most of her weight off the floor). E tolerated some ball exercises (small circles while she was sitting on the ball, hands either to the sides or not holding on at all). She can do her own range of motion movements (while lying down, bring knee to chest, then back down with her leg straight on the floor) but her control going "down" is poor (I hold her leg so she won't "bang it" on the ground). She can do full bridges with her pelvis, which also requires weight bearing on the heels in her casts.
We tried partial standing; she was nervous to put any weight on her right leg. She can be placed in a half-kneel position on either leg, without pain, but I haven't had her get in that position independently.
She is still sleeping in bed with me, b/c she has trouble repositioning herself during the night, but only b/c the pillow between her legs is too big for her to move. I am hesitant to put her in her own bed until I know she can get out of bed (bear weight on her feet enough to get to the ground slowly) safely. The "sleeping with a parent" issue is a big one for us, b/c we've had sleep issues for a while and *just recently* (pre-surgery) were making such excellent progress. E is very rational regarding her sleep arrangement--she knows as soon as she's more able, she'll be in her own bed. She seems to be very calm about this (we'll see what actually happens!!).
Saturday, November 20, 2010
Post-Op: Day 1
Day 1.
E is well rested, and all kinds of talking and laughing. She does not like her legs to be straightened. My goal was to try to have her sit in a chair and play today, and see if she could be carried more traditionally (upright, with my hands under her rear, with her arms around my neck) rather than a basket carry (her neck and back and her knees held up by my arms with her folded inbetween). Both of these were successful, although E preferred the basket (or "cradle") carry. She was also able to sit up, with her knees supported by a cushion underneath, and watch TV. We colored a lot, and she ate well. Well, a lot of popsicles, anyway.
I even got to do a "dry run bath" where I propped her on the floor, with her feet up, and pretended I was washing her--to see how much pressure I could put on her legs, to see if I could turn her hips, and test her passive range of motion. Even sore, I could tell that she could keep her legs straighter than before the surgery.
She slept all night.
E is well rested, and all kinds of talking and laughing. She does not like her legs to be straightened. My goal was to try to have her sit in a chair and play today, and see if she could be carried more traditionally (upright, with my hands under her rear, with her arms around my neck) rather than a basket carry (her neck and back and her knees held up by my arms with her folded inbetween). Both of these were successful, although E preferred the basket (or "cradle") carry. She was also able to sit up, with her knees supported by a cushion underneath, and watch TV. We colored a lot, and she ate well. Well, a lot of popsicles, anyway.
I even got to do a "dry run bath" where I propped her on the floor, with her feet up, and pretended I was washing her--to see how much pressure I could put on her legs, to see if I could turn her hips, and test her passive range of motion. Even sore, I could tell that she could keep her legs straighter than before the surgery.
She slept all night.
Pre-Op
We had a motto for today:
E was ready. We brought her favorite buddy, Mr. Pink, with us--he was having a procedure too.
She was fine up until the anesthesiologist carried her away. She thought I might go with her to the procedure room, but that isn't customary, and it was never really talked about. I'm sure she cried, but I never heard it. My heart broke just a little when I saw my brave girl go through the double doors, but I honestly believe this is a very good decision. My nerves were okay; this procedure didn't freak me out hardly at all--SDR sure did, though. Everything after that seems to be a cakewalk. ;)
An hour and a half later, I got called in to the recovery room. I was a little surprised; I didn't expect E to be crying so much. She was in a stupor, given her sedation; I also know from previous experience, she has a hard time with feeling woozy. She whined and cried constantly that her throat hurt (intubation during surgery), and her feet hurt to move. She had prickmarks down the back of her yellow-stained legs (from percutaneous lengthening of the hamstrings), and her feet were casted in a 90 degree angle at the ankle (after traditional lengthening of the gastrocs), encased in hot pink. The nurse gave her some morphine and fentanyl; she quieted down. She also gave her an oxygen tube, which she taped to blow gently in her face (oxygen saturation drops after patients get morphine). After a minute or two, E's eyes popped open. She grabbed the tube. She finally spoke something intelligible:
WELL, if there was any doubt I'd see my typically E that afternoon, not anymore.
I worried how I would get her home, given her pain; she had to ride in a carseat to get home, and I had to move her several times. She never once complained. I think she just wanted to get home.
Once there, we propped her on the couch and put a pillow under her knees. She rested; we watched some movies, but mainly I gave her liquids as tolerated and rubbed her stomach. Using the bathroom was difficult, as it was a two-person job. Annette and I traded duties with the kids--one of the priorities was making sure squirmy Vivian didn't crawl all over E. I gave Elena tylenol+codeine--which she'd had trouble with in the past--and after one bout of vomiting, we gave up on it. She tolerates Valium, so she's on that every 8-10 hours as needed.
Later in the evening, she was ravenous; she hadn't eaten anything all day. After inhaling pizza (I didn't think that was a good idea, but oh well), fritos, pretzels, and a bunch of other things, she seemed more herself.
She slept all night the first night.
Overall, A LOT EASIER than I expected.
"Let's Do This."
E was ready. We brought her favorite buddy, Mr. Pink, with us--he was having a procedure too.
She was fine up until the anesthesiologist carried her away. She thought I might go with her to the procedure room, but that isn't customary, and it was never really talked about. I'm sure she cried, but I never heard it. My heart broke just a little when I saw my brave girl go through the double doors, but I honestly believe this is a very good decision. My nerves were okay; this procedure didn't freak me out hardly at all--SDR sure did, though. Everything after that seems to be a cakewalk. ;)
An hour and a half later, I got called in to the recovery room. I was a little surprised; I didn't expect E to be crying so much. She was in a stupor, given her sedation; I also know from previous experience, she has a hard time with feeling woozy. She whined and cried constantly that her throat hurt (intubation during surgery), and her feet hurt to move. She had prickmarks down the back of her yellow-stained legs (from percutaneous lengthening of the hamstrings), and her feet were casted in a 90 degree angle at the ankle (after traditional lengthening of the gastrocs), encased in hot pink. The nurse gave her some morphine and fentanyl; she quieted down. She also gave her an oxygen tube, which she taped to blow gently in her face (oxygen saturation drops after patients get morphine). After a minute or two, E's eyes popped open. She grabbed the tube. She finally spoke something intelligible:
"That thing is annoying."
WELL, if there was any doubt I'd see my typically E that afternoon, not anymore.
I worried how I would get her home, given her pain; she had to ride in a carseat to get home, and I had to move her several times. She never once complained. I think she just wanted to get home.
Once there, we propped her on the couch and put a pillow under her knees. She rested; we watched some movies, but mainly I gave her liquids as tolerated and rubbed her stomach. Using the bathroom was difficult, as it was a two-person job. Annette and I traded duties with the kids--one of the priorities was making sure squirmy Vivian didn't crawl all over E. I gave Elena tylenol+codeine--which she'd had trouble with in the past--and after one bout of vomiting, we gave up on it. She tolerates Valium, so she's on that every 8-10 hours as needed.
Later in the evening, she was ravenous; she hadn't eaten anything all day. After inhaling pizza (I didn't think that was a good idea, but oh well), fritos, pretzels, and a bunch of other things, she seemed more herself.
She slept all night the first night.
Overall, A LOT EASIER than I expected.
Monday, November 15, 2010
A little anxious...Surgery is THURSDAY
Elena is having a tendon lengthening procedure in three days.
We knew this was coming-- I guess with kids with SDCP, it's more of a "when" than an "if" type of situation. I understand parents' and therapists' opinions about not wanting invasive procedures done...but I feel incredibly strong that her quality of movement cannot be addressed with different types of "stretching" therapy.
SDR was a great choice for us. I still feel that way--E's spasticity has decreased tremendously. That has been a life-changer. But living with spasticity like she did for the first four years of her life made its mark--her calf muscles/achilles tendon are short, and her hamstrings as well. She has femoral and tibial inversion (CONFIRM THIS IS THE RIGHT NAME), where her bones have twisted--it's not bad enough to warrant a surgery for this right away (hopefully ever), but more proper weight-bearing will only help her structure--and should be done before age 9. She also has almost a "rocker foot", where the bones in the arch of her feet have broken down due to improper weight bearing (on the midfoot, as opposed to the heel), and this will eventually cause pain.
Elena will have percutaneous lengthening of the hamstrings (both sides, more on the right) and standard lengthening of the calf (exact location HERE) consisting of approx. 2 cm incision on each leg. She'll be casted below the knee ("walking" casts) for three weeks.
My expectations are that Elena will be able to stand up tall (after regaining her strength), hopefully with her weight evenly distributed on her feet (as opposed to her toes) and have a better foundation for balance.
We have several Feldenkrais sessions booked, to ease E into a new movement pattern during and after casting; we'll also continue her "normal" schedule as best we can (school, PT, scouts, Jimmy Time--unfortunately hippotherapy and yoga classes end this month) with a lot of holiday activity in the mix. An added PT session/week (CME) will hopefully happen early 2011.
We knew this was coming-- I guess with kids with SDCP, it's more of a "when" than an "if" type of situation. I understand parents' and therapists' opinions about not wanting invasive procedures done...but I feel incredibly strong that her quality of movement cannot be addressed with different types of "stretching" therapy.
SDR was a great choice for us. I still feel that way--E's spasticity has decreased tremendously. That has been a life-changer. But living with spasticity like she did for the first four years of her life made its mark--her calf muscles/achilles tendon are short, and her hamstrings as well. She has femoral and tibial inversion (CONFIRM THIS IS THE RIGHT NAME), where her bones have twisted--it's not bad enough to warrant a surgery for this right away (hopefully ever), but more proper weight-bearing will only help her structure--and should be done before age 9. She also has almost a "rocker foot", where the bones in the arch of her feet have broken down due to improper weight bearing (on the midfoot, as opposed to the heel), and this will eventually cause pain.
Elena will have percutaneous lengthening of the hamstrings (both sides, more on the right) and standard lengthening of the calf (exact location HERE) consisting of approx. 2 cm incision on each leg. She'll be casted below the knee ("walking" casts) for three weeks.
My expectations are that Elena will be able to stand up tall (after regaining her strength), hopefully with her weight evenly distributed on her feet (as opposed to her toes) and have a better foundation for balance.
We have several Feldenkrais sessions booked, to ease E into a new movement pattern during and after casting; we'll also continue her "normal" schedule as best we can (school, PT, scouts, Jimmy Time--unfortunately hippotherapy and yoga classes end this month) with a lot of holiday activity in the mix. An added PT session/week (CME) will hopefully happen early 2011.
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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