Bike at PT

We've tried lots of different bikes/trikes.

Theresa asked us to bring the upright bike we borrowed--the frame is a little small for Elena. That last time we tried this bike, E had a hard time steering while concentrating on her foot movement. She also got easily frustrated when she would accidentally brake (wheels going backwards) when she was trying to pedal.

Today, she got it! Pretty smooth steering around the therapy center, and just a little accidental braking!



The video is shaky b/c I was running around the center opening doors so E could bike in one big circle. She never ran into any walls, and only hit the handlebar on a door opening once. She knows how to use the brake, but sometimes forgets. (I meant to bring a helmet, but today I forgot). E was really proud of herself! She said her legs "felt like jelly" afterwards.

She'll hopefully go on the bike tomorrow in the neighborhood! (There is one flat cul-de-sac, she'll try that!).

Growth

Well, still trying to catch up with life, here. Between school, therapy, Daisy scouts, traveling, soccer, ballet, friends--oh, and the work/home/life juggle, I've barely had any time or energy to update.

E is growing. Currently, she six years old (closing in on seven), about 35 pounds and 41(?) inches tall with her shoes on (she's a 5th percentile girl). She'd graduating to a new pair of Kiddiegaits (coming soon) and she's ecstatic about her new shoes--they're extra lightweight, and are black with pink accents. This is a big change, as she's had the exact same model for three years. She's happy about having new choices.

She's also graduating to a new pair of crutches. These are Easy Walks--she'll get the same model, only one size up.

I don't have to tell some of you that spasticity and growth spurts don't mix.

I dug out her knee immobilizers (from 2 years ago)--she wasn't excited, but tolerates them (a little)


But you know what? I feel like this hasn't been that bad. Elena is very mobile, and has a pretty good attitude most of the time when it comes to stretching or trying something new. We still struggle with the same old stuff--standing tall, putting her heels down, trying not to crouch--but in all honesty--for all the changes going on (physical as well as social and academic), things are going very well. I can say this was not the case in previous years. Either we're doing a good job of keeping on top of things, and/or SDR (?)/lengthening procedures (?) have really made all the difference when it comes to growth and spasticity.

Here's E at PT last week--great walking outside! Stopping is still a huge issue, but with any luck, we'll get there!

Miscellaneous Recap

I'm more than a little behind, but here's a recap.

Parent-Teacher Conference at school
I love E's teacher. He really tries to promote a sense of community in the classroom, and at the same time, allowing the children to be autonomous--at least, part of the time. This is difficult for Elena sometimes. Besides talking about what a great kid E is, e talked about how E relies on her aide, when both of us think she could do certain things herself. E's aide is FANTASTIC--but we wondered how far behind, if any, E would be if the aide just happened to be unavailable. This is an important test, since Elena will most likely not have an aide next year. I also learned (just recently) that we'll be redistricted to a different school next year. Ugh. Anyway, back to the meeting--E is very bright. At present, I have no worries about her academics. We have had some problems with teasing, and I brought it up. The teacher happens to be frustrated, with one child in particular, regarding teasing (not just directed to Elena, but she is an easy target). Not shortly after our meeting, there was a meeting with the principal, E, and the bullying student. That was a bit of a surprise to me--I didn't think they needed an official intervention. BUT, I applaud everyone for taking my concerns seriously. I didn't want to single Elena out. But, if it stops the teasing, or sets an example to show that behavior won't be tolerated, that's fine by me.

A Matter of Time
This sort of ties in to E and the school aide/independence thing. In essence, we don't carry Elena any more. We try to get her to do things herself. She can fully dress and undress herself (occasionally she gets caught up on socks, and we put her braces and shoes on) but it takes a LONG TIME. So, we dress her on school mornings. On four occasions, I have carried her from her bedroom, down the steps, on the way to the breakfast table. On EVERY one of those occasions, we've been 10 minutes early for the bus. That means it takes Elena 10 minutes to get out of her bed, and slide on her rear down the steps. 10 minutes--and that's for ONE of the many things we expect her to do herself before school. As you can imagine, our school mornings are regimented--as to when E needs to get up, be downstairs, finish her breakfast, etc. or else we will not be ready when the bus arrives. Early summer, I timed Elena doing various activities, and decided it took Elena on average 6 times longer to do any gross motor activity (and some other activities--she's a slow eater, for example). 10 minutes is longer than that (to get down the steps)--but that's b/c she's just waking up and her motivation is zero to get out of bed. STILL. Until this improves (and I believe it will, at least some) it's a struggle to help E get more independent, and have time to enjoy things. Everyone says "it's a balance", or something like that. I KNOW. I get tired of hearing/thinking that.

E plays with the Tee Ball set Viv got for her birthday (pretty awesome! We should have bought this months ago!)



Some PT videos









Dancing to Don Quixote

Kinesiotaping

I have some interesting pictures/footage of Elena wearing kinesiotape. If you haven't heard of it, kinesiotape is a type of skin tape used for lots of applications...in our case, to stimulate/differentiate muscles. The tape is stretchy in one direction; so, depending on the position of the body and the direction/tightness of the tape, you can promote (or discourage) movement. It's sort of like wearing a band-aid across your knuckle, along your finger--if you put on the band-aid when your finger is straight, you don't want to bend your finger.

Anyway, we've tried it a few times--over her knees (to promote taller standing/walking) and across her right hip to discourage turning in her leg from the hip socket.

For some kids, the difference is pretty dramatic. For us, that wasn't the case. While I do feel like it helps (a little? there's a lot of "hand-waving" here), there is no massive difference. Depending on the application of the tape (alcohol primer, no repositioning, good adhesion) it will stay on 1-7 days. Elena does not mind it, provided she doesn't pull on it when getting dressed (you can't rip stuck tape off--you need oil).

I am interested in trying this for a while--and I'd like to make some before/after video footage. Problem is, every time we've done kinesiotaping, she's been in her underpants or in a situation where you can't see the tape. I can say, if this shows some progress and we end up doing this on a regular basis, I'll be learning how to do this myself.

Video/Picture Recap

Some new favorite videos and pictures that I'm too busy to write about...

At the Polo match


Pony Birthday Party


Tailgating at the Nationals Game


Viv loves Pepsi

PT Recap: Same stuff, with progress

Here's some new vids of E at PT:

Obstacle Course: E needs to take small, controlled steps and then go uphill.


Obstacle Course: Down steps (going for step-through), and slalom.


Moving Backwards: Real progress here!


Walking on Mats/Stop: Controlled stepping over uneven surfaces and co-contraction to stop.


Even Hips: We're trying to get Elena to equalize her hip stance when standing or walking. Here she needs to lift up the hip/leg that isn't on the platform.


Stepping Backwards: Using a ball helps stabilize E, but also helps her realize to stand up tall while moving backwards (otherwise the ball is left behind).

Week(s) in Review

I am running out of energy these days...not sure why, but I am just tapped out at night. Things are going well--better than well, they're great! I'm just tired...so without much text, here's what's been going on lately (in no particular order).

Uncle Andy around for the weekend--and he brought his music set up. The kids had loads of fun singing and being musicians.


PT updates! E goes up a step BY HERSELF!


Bicycle "Sit Ups"--her first time quickly "physically problem solving"


Kindergarten Winter Concert: E stood up most of the time! She did GREAT!


E at mommy's work--better than ever, with cones


And she even helped me pick them up!


And Vivian looks up to E more than ever. PICS HERE

Walking, Interrupted

I have to admit, I'm frustrated.

I figured E would have some weakness, soreness, and fatigue easier after her surgery/casts were removed. I figured it would last a while, with the worst of it over after a week or so.

I also figured after her STELLAR PT performance the same day as her cast removal, that she'd be sore.

What I didn't expect is that Elena would REFUSE TO MOVE. Refuse to stand up tall. Refuse to walk. WHY?

I figured it was mainly due to soreness that she felt the day after PT. I was nice, sympathetic, and I carried her more often. Five days later, we were barely making any progress. Is this normal? I really wish someone would have prepared me.

E is a lot more verbal/antagonistic toward moving with me than others, particularly Theresa. Still, after she's reached her limit (about ~40 minutes of PT) literally she is DONE. She'll sob, cry, hobble, literally become a cripple after an amazing 40 minutes of movement. I am very confused.

*updated 12/26; she is moving better now, but still reaches her limits before the end of a PT session. After about 30 minutes rest or so (or proper motivation, like a mini-Slurpee or something) she's moving great again. I guess this is fatigue? I'm still not sure. Technically, she's been walking for less than 2 weeks post-casts, so, maybe it's early to be frustrated?

Casts Off!

E got her casts off today!

In a nutshell...the results are amazing. Fantastic. INCREDIBLE. No, she's not jumping around or doing the moonwalk--but her range of motion is pretty darn good, and she isn't as weak as I thought she would be after being in casts for three weeks.

Here's a video a half hour before casts are removed:



Waiting for the saw

Ta-Da!!


INCISIONS

After her feet were (finally) washed, the doc checked her out and then we all stood there while E walked away with her crutches (and AFOs and shoes). E's feet were DOWN. Solid. I was shocked. I think we all were, a little.

E had a PT appointment a few hours later. The doc said we should keep her AFOs on for PT for a few weeks, b/c he doesn't want too much strain on her ankles until she's a bit stronger. No prob. Theresa sort of "took stock" where E was--and wow, was she impressed. We all were!

Squat-to-stand (very little help here)--E has noticed she doesn't "teeter" as much, as her feet can stay on the ground while she stands up.



Walking



Slalom Walking (WOW!)



Walking back to the other room, at the end of PT (HEEL STRIKE!! WOOOOO!)



And then walking to the car with her crutches--HEEL STRIKE, RIGHT AND LEFT!!



I was ELATED. This was just a few hours after getting her casts off...I mean, what will she be like after months of therapy? This is like a brand new start. I feel so strongly that 2011 is OUR YEAR--as in, walking. Carrying a liquid in a cup? Moving backwards? Stepping out of the bathtub? Being able to walk (in any way) at the pool? Getting on the bus herself? Picking up and putting away toys? Hey, maybe even RUNNING. I don't want to get ahead of myself, but seriously, she looks THAT GOOD to me. Such a small change in her structure makes a GIGANTIC difference!!!

PT Recap: Balance and Ramps

Last week E was at PT, doing her thing. There is a PT intern working with Theresa. E loves Becky.

Trying to work the ramp with her AFOs and shoes on:


Trying the ramp with her sneakers sans AFOs:




Even though there might not seem to be a different going on in these ramp videos, what's different here is that E is initiating her movements well. This is paying off in real life, as E can now put her feet up a step with more confidence (without a handhold or crutches) but does not do the weight transfer yet. One piece at a time, I guess.

Working on balance, with a balloon--note her hand position when trying to bat at the balloon. This is common with kids like Elena--the act of flexing your palm "up" is akin to the same movement in her feet--a movement that doesn't come natural to her. With better balance, I think she could use the palms of her hands easier.

PT recap: See Saw

This is a late post; I had started it and then got distracted by preparing for kindergarten.

So, without spending too much time on the words, here's some footage of E at PT.

The See-Saw is my favorite CME exercise; I love the weight shifts. I don't like the fact that it takes two operators. Still, E is moving well here!

Part 1 of 3: Double leg raises



Part 2 of 3: Single leg raises, alternating individually



Part 3 of 3: Single leg raises, alternating simultaneously



And after that, E was thirsty, so she took a walk to get a drink. Lookin' good, Doodle!

PT recap: Walking...and a Wheelbarrow?

E's been working on walking and stopping at PT for a while now. Of course, there is still a long way to go.

Standing on a wobble board--getting better!



And the highlight (a few weeks ago, I'm late)--walking with a wheelbarrow! She carried and pushed it!

PT recap: Stopping (NOT Ending Therapy--"Slowing to a Stop")

We've been focusing on stopping at PT for a while. Elena can now walk a reasonable distance in a forward direction. Her stopping ability is not reliable. This is a huge issue when other elements are added to the walking problem; other people, objects on the floor, no handholds (for instance). E also tends to reach her destination by stopping short and leaning onto an object (wall, table, person, etc.).

We are trying to teach her to walk to her end destination (end of hallway, for example), STOP, then touch the wall. We have had countless falls because she stops short and leans for a handhold for balance, only to miss it, or have the handhold move (door swinging, etc.).

E is definitely better at stopping when wearing her AFOs and shoes. She still leans for walls, but overall she can stop in the middle of a room and avoid falling or running into people. With her sneakers (sans AFOs), this still needs a lot of work, but this skill is definitely emerging.



In just a week, though--huge improvement!

PT recap: Good movement

E was great at PT last week. She started it off by pulling a toy into the therapy room. This is a short video--but check out this POSTURE! No AFOs, standing very tall! Note this is NOT E's usual position. Normally her knees are bent, and her right knee slightly caved in (you see this is in the video too). But she CAN stand very, very nicely!



Here is E doing another obstacle course.



And one on an incline--this is a long movie. I am there as a spotter in case E falls. I'm also trying to observe how Theresa helps operate E on an incline/decline--this is something I have not had the courage to try at home. Inclines would certainly be easier if E's tendons weren't so tight!



Theresa ended the session with a few walking drills for E. The object was to stand up, carry a car across the room, STOP, and slowly bring the car to the starting line. Then she was to stand up, walk back to the other car(s), STOP, and repeat with the next cars--a total of three cars, one for each of us for a car race. Elena's main issue here is stopping--she cannot reliably stop her forward walking motion wearing her sneakers without AFOs. She can reliably slow down, as she falls to the floor.



Overall, a very productive morning!

PT Recap: Steps and Seesaws

Here are some clips from PT this week. Theresa has been challenging E with lots of obstacle courses--but what occurred to me after this weekend is how much better E is at doing steps (no vids shown here). Molly has been doing some different CME exercises with E, but she sees her late on Fridays, when E is tired after a long day. Sometimes E looks great, other times her posture looks really bad, especially when doing a new type of exercise.



I love this next exercise. It's hard for us to do at home, b/c it needs two operators.

PT Recap: Balance challenges

E has been doing very well in PT. Sometimes she's really ON. Others, well, we know she's not going to really engage. I think that's perfectly typical of a girl E's age.

Here are some highlights:

Theresa had E initiate AND complete weight shifts (shown below). She is holding an egg in an egg spoon; as the session went on, we gave her shallower spoons to see if she could keep them from falling.



I talked to her about "egg races", only we call them an "egg pass" b/c I don't want her thinking she needs to race/hurry.

Here is E trying the egg exchange:




Later on in the week, with Molly; this is just a stretching session, but I loved what E was telling me...



And trying to get E to walk downhill. We tried this later without Molly holding on; Elena can go down most of the way in a controlled manner, but once she thinks she is "at the bottom", she'll lean forward to anything she can reach.

PT Recap: Obstacle Courses and Stuff

Just the usual stuff. E is doing well at PT. We need to do more of this at home--finding the time can be a real challenge, though.



I thought E did a particularly good job here--this is her longest sliding session! She seems to stop when she's bored and wants to move on, instead of being tired or unbalanced.

PT Recap: Obstacle Courses

E has been doing a mash-up of CME exercises at PT, rather than just one at a time. For instance, if she will be walking over boxes, instead of placing her on them, she'll start on the floor and have to step up (or down). This has definitely improved her ability to go down steps (she's been going up them well for some time now--with one hand held and one on the rail).

Here is E at PT last week.





E really didn't feel like doing much CME...she'd rather play with the swing on the mat. So we tried to get her to move to it herself. This is a big deal, b/c it involves her stopping, starting, walking, and stepping up in a controlled manner where she doesn't have the support of her AFOs.





It occured to me yesterday that this post contains clips that E has done before, with her AFOs. Each of those clips took FOREVER for E to do, months--years--of training. She's only been working without her AFOs since November. Her progress is incredible. In our experience, this CME therapy has been amazing!

New Milestone: Standing Up Sans AFOs

All those standing up from "frog poses" are paying off! Elena can now stand up from the floor, wearing her sneakers without AFOs. This is HUGE in terms of gross motor function. One of the big definitive milestones is getting up, in the middle of the room, without handholds and walking out of the room. Here's the first part!



I'm pretty sure she can walk a few steps to exit the room. WEEE! Now, E won't be successful standing up each time. She did it four times this day, and fell maybe three other times. Still. THIS IS HUGE.

PT Recap: Almost Got It

Here is E doing some new CME exercises with Molly.

The Pipe Stand might have been a little easy for E, but it's still a different sort of balance challenge.



Molly made it harder, with an incline.



Here's a big one--E *almost* standing up, unassisted, without wearing her AFOs. She is so close!