Sunday, April 29, 2012

Beach Walker 2.0

I had to make the Beach Walker bigger--and when I did, I realized that it wouldn't easily fit in the car anymore. After a lot of mistakes, this is what I came up with. A simple change of the design. I re-used the same wheel and axle as before, and added a "spacer" piece so I don't have to remake the portion containing the wheel again. The spacer isn't epoxied into place like almost everything else; it's secured with bolts and butterfly nuts. Beach Walker in two parts for transport

Spacer and bolts--spacer is 1" pvc pipe, into 1 1/2" pipe--just shove in the spacer tight, and use a drill and the right size drill bit. Might need a hammer to get the bolt in for the first few times you take a apart and put it together again.

Putting the bolt in place

Make sure the end of the bolts are pointing inward, so not to have sharp edges that can harm any bystanders

Beach Walker 2.0 Assembled

Now that this is ready...well, I dont' think Elena needs it. Her crutches are the best option for every terrain--except sand--that we've encountered lately. But maybe this will help some of you out there.

School Field Trip

I have a lot to catch up on, so this will be brief. I went on Elena's last field trip--it was to the farm belonging to one of E's PE teachers. The plan was for a nature hike (!), and a tour of the farm animals, and to learn about plants and watersheds. Elena's group went first on the nature hike. I tried to hang back, to see how E navigated in a group in difficult terrain.
This is about how far back Elena stays as the group moves. The terrain was difficult; there were flat parts, but it was thick with leaves and branches that you had to step over. Elena fell only once. Interestingly, she didn't choose to start to follow the group until they were at least 15 feet ahead. I wondered if that was why she was always so far behind--but I think a lot of it had to do with the fact that I was there, and she wanted to stay close to me. I had brought the wheelchair and the beach walker--the two best mobility tools we have to handle difficult terrain. Well, they can't handle a farm. The absolute best mobility option for Elena is her crutches. Well, halfway through the hike--at the bottom of a "loop" path, down a hill no less--Elena ran out of energy. I wondered what would help best guess was a seat to rest (which was not an option). I ended up giving her a piggyback ride back. A pack animal (or human) was the next best option out there, save a Segway or a mini-ATV. After a break, she was fine and independent for the rest of the trip. It was very, very educational to see E's dynamic in a group of peers--she tends to stay back for safety (getting knocked over in a huddle)--but starting so late after the group leaves is something we need to work on. E's teacher told me she doesn't do this all the time, so I think it was my presence that kept her back further than usual.

Thursday, April 19, 2012

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.

Thursday, April 12, 2012

Almost 7 years

Elena will be 7 on April 30th.

I knew I'd be donating her first pair of crutches to the therapy center; what I didn't expect to find in the storage closet was every pair of AFOs she'd ever had. And most of her shoes (not all of them, but the ones that had been specially fit for her--most of these have lifts in the sole, or additions to the inside of the shoe).

E got her first pair of AFOs at 18 months. When she started bearing weight on her feet, her pronation on her right foot was so bad she stood ON her navicular bone--the bony "nub" on the inside of your ankle, and her toes on both feet "clawed out".

These braces--every one shown here--were integral to the mobility she has today. I can't thank Bryan Fuller and Virginia Prosthetics enough.

I don't have the walkers anymore--they've long since moved on to other families--but she's had three of them, the first one was SO TINY. I remember her first time on forearm crutches--she was so scared, and she HATED IT. Now she's on her second set--pink again, of course.

Sometimes I get all choked up thinking about it...

You've come a long way, baby.

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!).

Saturday, April 7, 2012

Lewis Ginter Botanical Gardens

Today was another beautiful busy day. We started it off with a Feldenkrais session, and then headed out to Lewis Ginter Botanical Gardens. We've never been there before--but I heard it was pretty. And pretty flat, but large.

I wondered whether or not to bring E's wheelchair--and I decided against it, because I thought Vivian would need a ride also, so we brought our ancient Sit-n-Stand stroller. I think it was a pretty good decision--it's much easier to get in and out of for Elena, and there was a lot more at the Gardens to explore than we realized. My allergies were TERRIBLE, so I spent literally every moment revolving around sneezing and sniffling, but it was worth it.

Peter Rabbit greeted us!

We meandered down to the Children's Garden. We saw something sparkling just past the bridge--it was a garden of Pinwheels!

The Children's Garden had so much to explore! Structures, trees to climb, places to hide, food to eat, things to touch/wear--it was incredibly interactive!

Here are E and Viv in the "Little Houses"

They had bunnies on display, you could pet them if they let you

There was a cool treehouse that overlooked the water. As we were going up to the house, a little boy behind us kept talking about Elena.

"Mom, look at her leg. She must be hurt."
"MOM! She must have hurt both legs! She has something on both of them. Was she in an accident??"

The mother probably didn't know what to say. At first, she just ignored her son. As his questions got louder and consistent, she answered,

"Well honey, I think she's moving about just fine."

"But Mom she must be hurt!"

The path widened and they went past us. I never turned around, but I did watch Elena to see her reaction. She just kept plodding along. She tells me she "ignores" most comments, but I know they get to her.

The Treehouse Tower is one big room with different art and lots of windows. We ended up being right next to the boy, all staring out the same window. He stared at Elena. She caught him staring--and then he started staring at the floor.

Elena went right up to him while he watched his own feet.

"I'm not hurt, you know."

He looked at her. E smiled. He smiled back. I got out my camera to take a picture, hoping I could get just my girls in the window. The boy's mother started to usher him away, and he looked at me and yelled "Hey can I be in your picture too?" And I said "Sure!" and then Elena went and nuzzled right up to him. (!?)

Elena, Jackson, and Viv

A Tunnel

Sisters in a Dome

Stepping Stones

We were on our way to the Rose Garden when something weird caught our collective eye. It looked like a giant bird's nest. Turns out it was a branch structure! There were kids weaving in and out, playing chase. We all LOVED IT!

The Diamond in the Rough

We smelled a few roses along the way to the Greenhouse, where there was a giant display of orchids and other tropical plants. They were all very beautiful and colorful. Afterwards, I broke out some bubbles and the girls had fun with them by the fountains.

We had a fabulous time. One thing I have to mention is that this place is VERY accessible--there were ramps EVERYWHERE. It was heaven, not having to worry about how E was going to handle tons of steps. Elena fell only once, while hiding and chasing in the Diamond in the Rough. She spent more time on her feet than Vivian, which is new; Viv was tired (no nap) and preferred to ride. I'd estimate Elena spent more than half of the time spent at the Gardens out of the stroller--which is no small feat, given the size of the Gardens and the fact that we were mostly in the sun.

It was a gorgeous day to be outside, and more to enjoy than I expected. We'll definitely do this again!