Sunday, May 31, 2009

Independent Treadmill!

Sidebars are GO!!

Here is Elena on her treadmill, moving independently thanks to Steve the Welder!

These bars are adjustable height, and removable so the treadmill and bars still fit under Elena's bed for easy storage.

The bars not only save our lower backs, but also allow us to help her initiate heel-strike, which we couldn't do when we were holding her by the waist. Hopefully, that will help her gait pattern. So far, she doesn't hold onto the bars with a "death grip", so she's not using her hands to stabilize herself too much--but she still (obviously) leans into her stride if not closely supervised.

PT highlights

I am too excited about the next post to go too much into detail--

Dorsiflex drills are getting better. Here is E in the macaroni pool raising her feet. The more she does this, hopefully the stronger/more aware she will be to walk normally.

Here's the left:

and the right:

Getting better at this...

All her PTs (and myself) think there need to be some changes in her AFOs, b/c she's still "rising up" in them, despite the fact that when her braces are taken off, it's easy to reposition her feet (pre-SDR, it was very hard to flex her feet to get them back into her braces properly). The consensus is to add a toe pad to "break up" her tone by preventing her toes from curling. We'll see how that works this Tuesday.

Wednesday, May 27, 2009

Hallway Walking

At PT today E was all over the place. We started before the PT session:

E has been wearing Kiniseo (?) Tape at the last two sessions.

I think it "differentiates" her right and left leg. She moves better when wearing the tape. I think it makes her more aware of how she is moving.

She did lots of moves while wearing ankle weights today. Here she is walking with them. Overall, looking pretty good!

We played "Candyland" where I hid cards and E had to walk to find them and take them back to the board to move her piece. Great idea, Emily!

The session ended with Elena trying to kick objects off her feet. If she's not on a pedestal, she walks right along after kicking. She did it ONE TIME, on the right, and steadied herself afterwards without any help!

Pool's open

Well, the pool opened this weekend and E can't wait to get wet! In the past, the baby pool has been a real drag for us parents...we had to be there b/c she couldn't balance in the pool when sitting, and the pool was too slick for her when she was standing. Not to mention the fact that lots of spasticity and really cold water does not make it easy for E to move in the pool. It was very labor intensive, and it was very emotionally difficult, as the environment really showed how different Elena was from the other neighborhood kids.

Well, things are different now, thank goodness!

SDR has really decreased E's spasticity--granted, she still has tightness, but it's so much less now, she can actually put both heels close to the ground even in cold water. She needs to be reminded to "squish her feet" often. Since E doesn't dorsiflex well, she scrapes the tops of her feet pretty badly. I bought some 'water socks'--some breathable sock with a tread bottom--which protected her feet well (but they won't last long).

Elena moves differently than other kids, her tone is obvious--but she can move now, I don't have to be in the baby pool every waking moment. She can cruise along the edge, in either direction, and smush her heels down relatively well. She can operate a water pistol while sitting on the edge of the pool (she used to really straighten her legs when concentrating with her hands). She didn't get her whole body in the water (it was frigid) but in the bathtub, she can alternatively kick her legs from the knee down (but it's labored and slow).

We'll see what kind of pool/swimming progress we can make this year...I have the feeling we'll be spending lots of time there.

Sunday, May 24, 2009

It's a Question of Motivation

I still haven't posted E's (very poor) recent attempt at walking with her crutches in the hospital hallway. I'll link to it HERE once I get it up (it's on another tape). Yesterday we went to Short Pump, they have a Toddler Train which Elena LOVES. So, that was the carrot to dangle for her to use her loftstrands. Our hope was to get her to walk 25 feet three times during our stay at the Towne Center. We got her to do that, and then some. She was dynamite (at least, in the beginning).

E on her 2nd deliverable (first one not filmed):

I'm not holding her shoulders--I'm just there in case she topples. She normally falls forward these days, and with the loftstrands, she gets REALLY tangled up and then won't use them for a good long while after the fall. I used to contact guard her midsection, but she's too fast. I tried to just have my hands on the upper crutch part, but it messes up her shoulders it is (for now).

And the carrot:

She got to ride the train (twice), then play in Pottery Barn Kids (she walked through the whole store--no crutches) and got to push the baby stroller for a good long while. Then I got a cutie pic of her and her little sister Vivian (Elena can get on the chair all by herself now!)

Shopping (before kids) used to be fun. Now, it's mainly viewed as exercise for E. Still, it's a great activity--mostly level surfaces, plenty of handholds, motivational stuff for her to see/do, and teaches her to try to navigate around objects and people.

Tuesday, May 19, 2009

Walking at School

We're trying to get E to walk as much as we can. That's not so easy in an unfamiliar environment, or on a surface that has any incline/decline or unsmooth surface (even tile to low carpet can make her fall). (DISCLAIMER: Keep in mind--even though these videos show her walking, her balance is still poor. Her protective response has developed to be "pretty good" after years of therapy. Now that she is older, she gets frustrated with herself more, as she realizes she is different from others. Our persistent goal is to challenge her motor skills in the most positive way possible.)

She is making great gains at school...I hope we can continue this progress once school is out for the summer.

Here is E walking to the front of the class at Circle Time to draw the letter of the day.

And walking back to her chair.

Thank you Ms. Geisha, Ms. Ruth, Ms. Ariel, and the rest of Bright Stars!! I cannot say enough great things about this program, it is AWESOME!

Monday, May 18, 2009


We have enrolled Elena in a parent+child yoga class. The instructor also teaches a Yoga for Special Needs class at the local children's hospital, but the class time does not work for us. We have been in the "yoga for all children" class for about 5 weeks now.

Elena LOVES yoga class. The class is small, about 5 parent+child pairs and the teacher. Yoga sort-of evens the gross-motor field, as no one is really running around, and most people are attempting to achieve poses but having trouble along the way. Each child gets to have a say in what poses we all do, and some of them are done pairwise (for us, most of them are, as Jason or I end up holding Elena for balance quite a bit). It's also nice that every once and a while, there is another child in the class with special needs. Ruth and Bill (the instructor and her husband) are very welcoming and patient, and the rest of the families are very nice.

Flower Pose

Turtle Pose

I have hoped for a long time that Elena will incorporate yoga into her stretching regimen. I thought I would try that once she was able to stand reliably by herself. She can do that, but not for very long...this is better. Not only is she getting a good stretch, she is enjoying herself, trying new things, and fitting in well in a child-centered exercise class.

Emphasis on Up and Moving

E has been making good walking progress. Around the house, we have really been encouraging her to walk around by herself. She does not crawl much anymore. When she falls, she will crawl to the nearest object to help her stand up--steps, the couch, something with a handhold or horizontal surface (normally, not walls). She has gotten up at least twice, from hands-and-knees on the floor to an upright standing position, independently (but it was pretty ugly).

Here is Elena walking at PT last week!

Walking to the next room (just starting to walk for the PT session):

Walking back from the toy room (playing "hot and cold"):

Bending over to pick up balls (note--KNEES OUT!):

She does lean back against Theresa a good amount when squats to pick up a ball. She normally (used to?) lean back AND have her knees cave in really badly--so, this is quite an improvement. We have really been working on this, and it seems to have paid off nicely--E does realize her knees don't have to touch when she bends down. YAY!

Monday, May 11, 2009

Trying to Kick the Walker

We've been instructed that we need to get rid of E's walker(s). She gets around well with them, but she is never in a good position--she leans into them too much, and she constantly runs with the walker--and then she's on her toes, her heels pop out of her braces, etc. etc. I know she just wants to be able to go FAST and be independent.

Maybe I would let her use her walker more often if she wasn't growing so fast--her heels are getting harder to keep in her braces. We do the stander twice a day (most days), but we can't get a break b/c of her growth spurt. Girl needs to SLOW DOWN!

Anyway, so we're trying to switch the walker out for her loftstrand crutches. E does NOT LIKE THEM. I don't know what it is...she just collapses into a whiny wimpy mess when we take them out. Her knees REALLY cave in, her confidence goes down the drain, and poutyness gets worse. Still, we're going to give it our best effort.

We shot video of her walking down the hallway, but uploading is taking forever...check back for the video feed.

PT Recap: Knees-out Success!

I've posted pictures of trying to get Elena to play in a half-kneel before. Here is her right side again--MUCH better here. She has some of her weight shifted through her hips and is bearing some weight on her right foot, and the knee isn't caving in. WIN!

And the Triumph of the day: Elena pushing her Knees Out! Theresa cheered Elena to have her "knees kiss the ponies". SHE DID IT. Then T had E squat a little and try again. It worked beautifully!!

Then we worked on scooterboard rides. She got to ride with Mommy if she scooted herself (kicked out her feet, one at a time, to help propel the board forward). She did a pretty good job at this--good movement of one leg at a time, even if it was just a little kick.

Same issues, different week

Here is E doing leg lifts on the left...

And on the right...well, not really, but she's trying...

We tend to get the "extremity freeze" when she's either really trying or really frustrated...this PT session was a little of both, I think.

New drill: I call this Superknees! Take a little piece of velcro, and have it *just* fit. Then Elena pushes her knees out to bust through the velcro. SUPERKNEES! (She tends to bust out by moving her right leg out, which allows her to have her weight on her left side, typical for her.)

One way to see how well our Knees Out message is sinking in is to have Elena go up steps. At home, she holds the railing with her left hand and my hand with her right. She has definitely improved her stance, and now has her knee over the heel (more neutral alignment) than before, but she still doesn't transfer weight very well. One problem is she has a hard time remembering to move her hands up the railing before she steps. Another is she doesn't know how to transfer her weight through her hips very well.
At PT, they have a stairwell that is thin enough for E to have handrail support on both sides. She looked pretty good here.

We finished up the session with the kick-scooter, but my camera ran out of batteries. One thing I have noticed in the past week is that Elena is doing more "pigeon-toed" walking, regardless of equipment (walker, loftstrands, hand-held). This was REALLY evident during scooter time, the tips of her shoes were trying to get under the board as she took little scoots. At first I though that this wasn't getting worse, but that I was noticing it more b/c the rest of her gait looked that much better. Now I'm not so sure. I feel like we have to be working harder on her knee awareness...she'll be tripping over her own feet before too long.

Monday, May 4, 2009

Happy 4th Birthday!

Dear Elena,

I know you were very excited to say 'I'm four" instead of "I'm three" on April 30th, 2009. You'd been practicing it for days! I hope you had a great time with your friends at your Ice Cream Chef party. I know we loved celebrating it with you.

You and the rest of the Strawbunch making strawberry ice cream

You rolling the ice cream ball down the hill to mix it

Your Daddy and I are so proud of you, every day. You are the hardest working kid I know. You are more patient, understanding, and focused than a lot of adults I know. Sometimes I feel bad that I have you work so hard...but seeing you grow and change and progress from year to year makes me happier than you can imagine. I know you will be able to run and jump by yourself some day, and I know you will play on a soccer team like you keep talking about. Your Daddy and your sister and I will be your loudest cheerleaders!

We love you always,

Mommy and Daddy and Vivian

PT recap: Weight shifting

Last PT session with Theresa the focus was on weight shifts, while trying to keep the right foot flat and the knee in-line.

Some of the usual (not shown)--stretching, standing with left foot raised, sit-to-stand. Elena's eyes lit up when T took out the Princess Helmet and the pink scooter! We hadn't seen this for a long time, months before E's surgery. We have a scooter like this at home, and I was trying to push Elena around, stopping every so often just to urge E to put a foot off the board and step down to touch the pavement (I was not always successful, she had a very hard time stepping down on the left--her right leg could not support her). Now---check it out!

Theresa also used the Caterpillar (it's like biking while standing up). Elena can propel it herself, although she tends to watch her feet, which eventually slide off the pedals--so you have to stay close. She has started to look up while she uses it, so that's a big change for us. Her posture when she is bearing weight on the right leg isn't as good as the other side.

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.