Daisies and DynaSplint

Lots been going on here. As usual.

Since E's last field trip, I've been thinking a lot. We've taken Little Red on a spin, and the experience taught me a lot..but I haven't had a situation where E was way behind her peers until the last Daisy trip.

The girls went on a field trip to a local farm. I figured rolling hills over a large area. WRONG.

Feeding the Chickens!



Besides the distance, there were obstacles. HUGE ONES. With roots, a few cute steps...and 30+ degree grade hills, craters made by 400+lb pigs, covered by foot-high tall grass. It wasn't easy for any of the able-bodied girls to climb some of those hills.

Giant Pigs make craters all over the ground



E's wheelchair wouldn't have helped. AT ALL. Maybe the Beach Walker could handle some of the holes in the ground, but probably not through the tall grass (both the wheelchair and the Beach Walker stayed in the trunk). E's crutches were her best bet, but with the uneven ground, they got stuck in the ground holes and the going was slow. In some cases, E insisted on walking herself. She went down hills, over small narrow short wood bridges over water, and uphill until she tired (which wasn't far up the hill). For the hard parts--and honestly, there were many--I carried her piggyback. I didn't want to carry her, but the terrain was so incredibly difficult I felt there was no other way. Elena tried very, very hard--and she did walk A LOT. It was obvious, though, that she could not stay with the group on her own.

That isn't to say we didn't have a great time--we did! E got to grab an egg from the chicken hen house, feed chickens, see huge pigs, pet younger pigs, pet cows, ask great questions, pet baby goats, see all sorts of fowl, and learn what we eat from the farm. All the girls seemed to enjoy the farm and each other's company, which is what counts.

The biggest Field Trip Lesson I learned: If possible, ask to get a head-start on the next destination. I'm glad i got the opportunity to figure this out...b/c E has a school field trip tomorrow.

One of the many reasons E fatigues easily is due to her posture--b/c she doesn't stand with her legs fully straight, her large muscles are never at rest. She crouches, which is like standing in a perpetual squat. As she tires, her legs get weaker, her crouch gets worse, until she falls. It's easy to see when Elena walks without her braces--with her braces, she leans into them more--and on some surfaces she slips, and falling with crutches is very messy. This past week she's had a few bad falls--once off her bike (she was riding with friends in a cul-de-sac!), and one down the outside steps to meet her bus yesterday morning (she's NEVER fallen or even been unsteady, and the ONE TIME I told her to go ahead she took a spill)--Elena managed to get most of her fall on the grass (I have no idea how) so she avoided the worst of the stone steps. She's got more bruises than usual right now.

One thing that would really, really help is if she could stand at rest. Stand with her legs straight, not locked, at rest. I don't know if that is possible for her. Tone, slight contractures, habit and spasticity all hamper her ability to stand tall. At Elena's last ortho appointment, her doc mentioned a sort of dynamic brace to try to help her knee extension. I got the call this morning that it was ready. Tim got it to me this afternoon.

This brace is called a DynaSplint. It goes around the knee, and actively puts pressure (the tension can be easily adjusted) to straighten the leg at all times. It can bend, but there is resistance. It can be worn while moving upright, but right now our focus is on a passive stretch--wearing it while sitting or lying down.





Tim told me she'll see the most benefit the more she wears it--as in, hours per day, preferably while sleeping. I told him I could give him 15 minutes per day right now. Elena is a very active child, and for her to wear this while moving around would probably be unsafe (at least, initially). I refuse to ask her to wear it at night right now; we have spent so much time and effort getting to our current wonderful bedtime situation, it is not worth risking a setback.

During our reading time tonight




We currently have the DynaSplit on a month-by-month basis. If E tolerates it we'll buy it; so far, she does. We could use this for years. LIterally, she could use this brace for a decade. That's worth trying.

Here come the KiddieGaits

Elena got a new pair of braces!

These are called KiddieGaits. They are new to us. Our orthotist thinks they will be great for Elena, b/c they are supposed to encourage a few things that her regular DAFOs do not:

1. Pressure is on the shin, encouraging a straight-leg posture (rather than a crouch, which is a problem for E)
2. While still a rigid brace, there is a little room for movement of the foot (a small amount of dorsiflexion, plantarflexion, inversion and eversion of the foot hopefully means a stronger ankle for Elena)
3. This brace is COOLER--not suffocating plastic
4. Elena can wear short socks!! (check out these pompoms!)



These are also in 'standard sizes', meaning that they are not custom-made. I assume this means they are cheaper to manufacture, and are more easily transferable/reusable for another child.

VID--FIRST WALK

Elena's reaction to them were that they felt "different" but she liked them. The weird feeling she got was due to the pressure on the shin. She did say immediately that they were cooler to wear (it was nearly 100 degrees outside). I noticed two things right away:

1. While her legs are definitely straighter, instead of crouching, she "bends over" at the waist slightly. My guess is this is b/c her hip flexors are tight? I figure with more experience in these braces, this will be less noticeable.

2. She stands more obviously on her dominant (left) leg, and positions herself with her right leg behind her (straight leg, but with only the right toe resting on the ground). We've seen this many a time with the DAFOs, but her weight-bearing preference is very apparent. I also think this will get better, but we'll have to work on it A LOT (weight bearing on the right). She can do it, but it's not her natural stance.

Growing into another set of AFOs

This is ALWAYS a struggle...trying to get a new pair of AFOs to work when E grows out of her old pair.

So, here is my current dilemma: basically, we got her new pair, but for lots of reasons, I don't like them. We're trying out the DAFO model. E's previous pair are made of very hard plastic and have some interesting straps to keep her feet down (especially her right foot)--but they work very well. I'm putting together my best side-by-side comparison, to try to convince myself (and everyone else) that I am not crazy.

The Model: DAFO (new, pink) vs. AFO (current, purple) (this took forever to put together! Sorry the details are so small!)



As you can probably tell from the previous posts, E has issues with standing up straight and putting her feet flat. Why on Earth would you create a brace at an angle that promotes her stance in a crouch position?! E has to fight the DAFO to stay upright. The DAFO inner plastic is soft, so it is more "comfortable" but it also allows her to wiggle out of the shoe, no matter how tight you make those velcro straps. And I have put them on TIGHT. Her old AFOs are very rigid, but with the ingenious inner strap she really stays down in the brace. The same strap does put a lot of pressure on the top of her ankle, but she normally does not complain about it, and with a nice tongue to dissipate the pressure, we haven't had any problems (aside from growing out of these braces).

The Motion: DAFO (new; top vid) vs. AFO (current; bottom vid)





Tonight, I tried very hard to get E to move in both sets of braces for a comparison. She didn't want to cooperate, so this footage was shot after a long evening of bargaining. She's not at her best here. Her new braces (and shoes) are bigger and heavier than her old pair (that's always true) so she typically drags for a while. Still, I think she drags both feet, and spends more time with her knees bent (especially the right) with the DAFOs. AND, after less than 10 minutes of being upright, E is out of both the left and right DAFOs by .5 and 1.5 cm, respectively. After 10 minutes with her AFOs, she's out of the right by about .5 cm, and totally in the left one.

The Pros and Cons: DAFO vs. AFO
DAFO (new, pink): Pros--easier for school staff to understand how to take on and off, dissipates pressure well with soft plastic
Cons--heels slip out, braces are bulky and harder to fit in sneakers, badly hinged, encourages crouch (?), heavy
AFO (current, purple): Pros--light, holds E in well, fits in shoes relatively easily
Cons--difficult to put on, straps and velcro easily wear and tear

Am I crazy?

poll by twiigs.com

PT recap: working with her new DAFOs

At PT Theresa had Elena do a lot of her normal exercises wearing with her new DAFOs. I had low expectations, b/c her feet will feel very different, and her shoes are much heavier/bigger b/c to accomodate her new braces she had to go up a full shoe size.

Overall, not too bad. She spent a lot of time doing steps with her loftstrands (not shown) and going up and down the ramp.



Note how far out she puts her crutch when going up the ramp--that's so she can put her weight on her left leg (dominant leg) while doing most of the work.



Here is E walking in her new DAFOs. She might have moved a little better if she wasn't holding something. Still--she made it!

New AFOs

Two weeks ago Elena got her new AFOs. They're DAFOs, actually. Our orthotist recommended we switch to this brand b/c he thought E would stay better in the "foot cage".

PICTURES HERE

Well...I had my doubts. First of all, the entire inner portion of the DAFO is soft, and it slides into a harder shell--this was completely unlike her last pair [UPDATE LINK]. Once she put them on, she said they felt good and she liked them.

We've been trying to work our way into the switch, but it's been difficult. She says her right heel hurts sometimes--I believe she is coming out of the brace starting with the right heel, and it's rubbing her heel against the brace.

She also came home from school completely out of her DAFOs--still wearing them, but basically with only her tippy toes in the heel cups. In otherwords, the braces as is do NOT keep her heels from coming up and her feet escaping the braces. Granted, she was probably playing on the floor when she started slipping out (we hadn't had much of a problem at home with this) but the fact that she was walking so oddly and in pain was very upsetting.

I'm going to give these DAFOs a good solid try...but I have to admit, I like the way her old style performs.

PT recap: An Hour Without AFOs

Theresa worked with E sans AFOs today. She did pretty well--better than I would have expected!

The idea behind this approach is to challenge her balance/movement by giving her support further and further away from her core, while allowing E to (hopefully) initiate or complete posturing or movement herself. The goal today was to try to get her to stand up tall, with minimal support (at the ankle). Since she can already keep a standing position (with her AFOs) (for a while, but not indefinitely), Theresa also wanted to see how E reacted to getting from the floor, to a squat, to a standing position. She can do this when wearing her shoes/AFOs (with poor form) occasionally.



E wanted to use a ride-on toy; she's done this before in bare feet, with some success. Still, she is taller now, and with the shoes on the movement is usually labored. This is the best I've seen her do it in shoes!



Overall I am very pleased with this. I'm not a total convert, but I definitely see the benefit in working without AFOs. We'll see how she progresses in a few weeks--with exercise and "sneaker time" at home. We're going to start with 10 minutes a day of work, and then maybe some more of just playtime without the AFOs on. I still want her wearing her AFOs and shoes the majority of the day.

PT recap: Shoes-oui. AFOs? NON!

I will be posting over this, with pics/video, but last week E went to PT (Jason took her, as I had to be at work early) and Theresa had E work with her shoes on, but without her braces. Jason said she did pretty well--but, in all honesty, I didn't believe him.

Theresa asked us to find shoes to fit her feet, not to fit her AFOs. We found a cheap sturdy pair at our favorite store. It was a real treat to see her in shoes without braces! And much to my surprise--off she went, a little more unstable than usual, and took 5 steps to the next bench in the store! WOW!

I have heard of kids "outgrowing" the need for their AFOs. I thought this *might* happen for E, after she stops growing, before her twenties or so--and then only for short amounts of time. And just b/c she took some steps without her AFOs on doesn't mean it's happening soon--she can't take more than 3 steps in bare feet--but still, I was AMAZED that she moved as well as she did wearing only sneakers!

AFOs

As soon as Elena started bearing any weight on her feet, it was obvious something wasn’t right. Besides her legs being incredibly stiff, her feet pronated badly. Her right foot was particularly bad—she stood nearly on the inside of the ankle and not the bottom of her foot. She got her first pair of AFOs before she really started any sort of independent standing, mainly to try to develop an arch in her feet, as she had none. The instep of her AFOs were gradually built up. At first, she wore her braces without shoes. Since she was so quiet, there really was no fighting with her braces. By the time she was communicating, wearing braces had become normal, and she’d use the sign for “hurt” if her braces or shoes had any problems.
Our first problem with AFOs came up when Elena needed shoes (about 13? months old). The shoes fit the AFO, not the foot, so normally they are at least a size too big. This is a lot of weight, not to mention an awkward size, for a child who has issues lifting her feet off the ground. AFOs also don’t breathe, and sandals typically get caught in the hinges of the brace, so Elena’s feet get very hot and sweaty. Elena’s feet are always trying to point, and her legs are always trying to straighten, so keeping her in her braces was a real struggle, she’d always be popping out, and then getting her little heels pinched in the back hinge. In order to get her back in the brace, we’d literally strongarm her foot into a flexed position and stuff it in the brace. Over time, this became easier, but never “easy”. Still, the payoff is fantastic. She can now stand with flat feet, and her feet are not as pronated—the right is still worse than the left, but not by much. The wearing of AFOs is greatly facilitated by Botox treatment, which we have had for a year and a half at this posting.