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.

Catch-Up

Well, lots has been going on--but isn't that always the case? The text here won't be lengthy, for fear I won't get to the pics/videos.

In no particular order:

West City Soccer is going GREAT! I can't say enough great things about this. We've been doing some little 5-minute scrimmages near the end of the sessions, and E can get into the mix a little. She uses two crutches to be faster, but when doing so, she doesn't handle the ball as well with her feet and uses her crutch tips as "extra feet" (I keep telling her that's EXTRA HANDS!). She has recently tried using one crutch, and her footwork is better that way--but sometimes she's really uncomfortable and uncertain in her movements. We keep mixing up the zero-one-two crutch use, and it's been great.

Snow Day (again!)! Dad ended up driving off with E's crutches in the car, so there was lots of hand-holding in this thick, wet, heavy snow. E did try to make it up the neighbor's hill, but after about 6 (good) steps, she was tired. I loved the fact that we saw some of our older neighbors--I haven't seen these girls in a long while, and they sure have grown up! The main focus was on making a snowman--in this case, with some Hawaiian Flair!



The kids went to a Pig Reading--With Daisy the Reading Pig!



Elena earned her Firefly award for teaching her Daisy troop something--she chose Chess!



And at the following meeting, she chose to NOT use her crutches to get in the building. I'm guessing this little hill is a ~30 degree grade--and she did it both TO and FROM (downhill) the meeting, and never fell. Good job E! (She also went up a curb, without crutches, when walking to a birthday party a few weeks ago).



Ballet Mentor Recaps: my pictures were SO DARK, b/c I didn't figure out how to use the light switch until the end. So, text will have to do. Ms. C and Elena worked on a few moves after warm-up. Warm-up usually consists of talking, running around, and then some sitting and stretching while working on turn-out while sitting in long-sit. Long-sit (sitting up straight with your legs out straight) is hard for Elena, I think b/c of her tone AND contractures. She tends to long-sit with her hands behind her, so she can lean back (try it; when you can lean back, it doesn't stretch your hamstrings as much). When E tries to touch her toes, her back rounds (again, hamstring tightness is one reason she doesn't have a straight back). I'll be interested to see improvement here.

After warm-up, Ms. C tries to get E interested in a new move(s). Maybe a story, maybe a video, and then she tries to get E to work on 1-2 moves. Today we tried (together) different foot positions (standing on a yoga mat, while holding the back of a chair as an improvised barre). E tries hard to "put her heels together and get her feet in a V" for first position, and I am seeing improvement here, and with foot turnout and knee turnout. I can see it is uncomfortable for her, but she is trying, and seems to enjoy the challenge.

Our second move was tondus. Ms. C had very good success while using this in a "step"--really, just trying to get E to walk barefooted with strike-through (where her back leg passes her other leg as she goes forward). The best success was when she put her finger in front of E's feet (way in front) and asked her to try to step on her painted fingernail. Some of those steps WERE REALLY GREAT.

Our ballet mentor meetings are about an hour; I think in this hour, I'm lucky if E gets 20 minutes of good movement. At this point, I don't really care about that--I just want it to be fun, and I want Elena to like her mentor enough to WANT to go see her, so that she's interested in learning something along the way. Personally, I think the sessions could deal with some more imagery to help E with her movements ("paint a rainbow with your hand", etc. etc.) but so far E seems to like it. I might bring some little balls next time (maybe she can try to move them/kick them with her leg/toes) b/c she really seems to like kicking/throwing/moving balls right now. Or get some gigantic paper and some chalk, and actually get her to try to stretch and write on the paper (if doing sitting stretches, for instance). Or try to get her to put her feet on painted footprints on said paper. Any ideas, send 'em along!

Watching Baryshnikov do some tondus in his dancing



Arms Wide, standing tall pose (the feet are nice and flat!), pom-poms keep it fun



I asked Viv's ballet teacher if she had thoughts of a group class where E wouldn't slow down the group too much; she thinks E would fare well in her class with two novice, shy 4-5 year olds. We'll give it a shot!

E always wants to help at home. This used to mean that everything took a billion times longer when the kids try to help me. Well, E can now be EXTRA helpful in the kitchen--here she is helping me cook dinner, by peeling the parsnips and carrots (while getting a knee immobilizer stretch).



Bonus Vivian! Her new thing is that she had decided when dressed as such, we will refer to her as Puss in Boots, complete with maraca "sword" (in a glasses-case sheath). Points for originality here.

Shark Weekend Part 1: Nauticus

Last weekend was Elena's Daisy Troop trip to Nauticus! The Daisies were going to earn their "courageous and brave" petal, by facing their collective fear of sharks--by feeding them lunch! We had been preparing for this by watching old Shark Week videos. Elena's reaction: "I think if you are going to be in the water with sharks, you should be in that cage."

As with every trip to a new place, I try to plan ahead...where will we park? How will E get around? Will she get too tired? What is the terrain like? Nauticus has 5 handicap parking spaces, all of which get filled up. There is no parking lot...and I wasn't sure if Elena wanted to be in a stroller. I asked Nauticus if there was a shuttle, or a hotel nearby that might provide transportation. There was, and the Norfolk Sheraton is in walking distance to Nauticus--but not Elena walking distance. So, I decided to make a weekend of it. We would stay at the Sheraton and try to get a parking space, and if not, I'd drop off the family and walk to the museum to meet them.

When we arrive at the Sheraton, I was disappointed to find out that there was no parking lot--only valet, b/c the parking garage was two blocks away. So handicapped patrons have to pay extra to park, while able bodied peers do not? I was pissed off. (It wasn't on my bill when I checked out. Maybe that's a typical policy for those with HC plates/placards?)

We spent Friday eve with a friend of mine and his family. My girls learned all about Lightning McQueen and race cars (he has two boys). The evening was wonderful, big thanks to the O family!!

Saturday it was off to Nauticus. We got a h-cap spot outside, and since I had both E and Vivian, I took the sit n' stand. Good thing--the museum ended up being WAY to much walking for Elena, so she rode during the long parts.

Viv outside, doing her "smile face"




INSERT SHARK PICS HERE

At the "Shark Workshop"--how they move, what their skin feels like, how big they are, and the big shark jaw!


E in the Shark Cage


How E measures up to a Great White Shark


Petting a horseshoe crab


The second big workshop was "Robotics". Basically, an overview of how submarines and other submersibles move around underwater. So, the challenge was for the Daisies (working in small groups) to create a submersible robot out of PVC pipe and three motors (taped to PVC pipe). Buoys were strapped to the structures so they would float on the surface.

Elena was EXCITED! Working in groups, problem-solving, and building together isn't easy for 5-7 year old girls. Immediately, the girls started assembling pieces individually (if they could reach some), without regard to the task at hand. With some open-ended prompting by myself and the other parents, the girls were able to work together. They shouted out ideas, construction plans, and how they expected their creation to move. I was VERY proud of E and her group! They were the only ones to have a more "freeform" shape. I think our group of girls had less input from adults/demo models, so this was entirely their creation. They were very excited that it floated, and each Daisy had the chance to drive it using the motor switches. Elena did a great job piloting her robot!





After that, some of the girls headed to the Labyrinth. It was in another building, and was a "hunt-or-Atlantis" themed maze, with legends, ocean conservation, mythology, and art throughout. It was really amazing, and the kids loved it. I only am showing a few pictures--of Elena moving around on her own (mostly running).

The Turtle Race Room


The Playground Room--E could navigate this whole structure (except the straight green slide, too fast)


Resting at the hotel--what a day!

Daisy Camping

We had a pretty busy Memorial Day Weekend! Elena's Daisy Troop had a camping day planned. Not all the girls were able (or wanted) to go--after all, they are pretty young, and it was HOT. Like, over 95 degrees HOT. To quote the troop leader: "Relentless Heat". So, maybe not the best camping weather.

And, did I mention CAMPING? The troop had decided on their activities--which included creek wading, hiking, tree climbing--not to mention all the other issues related to being outside (uneven terrain, carrying, heat, fatigue, long distances between handholds, etc). I am also NOT A FAN of camping. My husband is--so off he and E went.

Elena made sure to pack her bag herself (it's the Daisy Way). She was encouraged to carry her own backpack (which was heavy; she did, but Jason was definitely holding some of it up for her, as she was crouching pretty badly under the weight by the time they made it to the campsite). The campsite was relatively flat, but there is a big difference between flooring and grass/gravel/mulch/etc. Elena wore her sneakers (without braces) a lot of the time b/c it was simply SO HOT, her feet were soaking wet and Jason was worried about blistering her feet in her AFOs. Both Jason and I were worried Elena would "wilt" in a short amount of time in the heat. All the Daisies were expected to be friendly, helpful (everyone had a job) and supportive. Erin is an amazing troop leader, so I was hopeful things would go well...but, there were a lot of new obstacles and challenges for Elena.

E's first camping trip. Jason warned me he was NOT taking his phone. So I got zero updates. I didn't necessarily *worry*, but I did want a little information while they were gone...but I had to wait until they got home the following afternoon.


E's first words to me:

"Mom, YOU MISSED OUT!"

E and Daddy looking for firewood


Cleaning up the fire circle


Wading in the creek (wearing water shoes)


Knotting the Dishline


Dinner


Washing Dishes (they had an assembly line)


Walking Across the campground (sneakers, no braces, no crutches, no help)


Setting the breakfast table


Hiking (definitely braces and crutches; she went about 1/4 mile "the way out"; Jason gave her a ride back)


Sample walking distance--from the latrine (blue rectangle in the background) to where E is sitting--no help, sometimes no braces/crutches

Daisy Scouts

I started this post a long time ago, but never got it finished.

Elena has been in Daisy Scouts for a few months now. We are friends with the Troop Leader and her family, so I knew Elena would have a great time. It's a 30 minute drive during the weekday, which is a tall order--especially when there are troops right in our neighborhood. But I just knew it would be a good fit for E.

Not only did I have faith in the leader--she is inventive, and a lifelong scout, and knows all about Elena--but E had already met several other troop members, so I felt like her disability wouldn't be so strange in a group of young girls who had spent time with her before. The co-leader also just happens to be a neurosurgery nurse (and works with the doc that did E's SDR surgery). HUGE plus there!

The first meeting, I waited outside with a few other parents. I wanted to show the leaders how to put on/take off E's AFOs in case she needed to have them adjusted, and I figured I'd do this after all the other Daisies were out of the room. I didn't want E's disability to be highlighted any more than it had to be. Naturally, after everyone had left and I started to the AFO show--all the other Daisies poured back in, and crowded around Elena (who was lying on the floor) and the questions filled the space around us--

"Is she hurt?"
"What's wrong with her?"
"What are those?"
"Is that why she can't walk?"
"Is she retarded?"
"Does she have Down Syndrome?"
"Does she have to wear them all the time?"
"Can I get what she has?"

At first, I started to answer the questions. I mean, the girls aren't bad or mean--they are curious, as Elena is obviously different in some ways. But after the questions kept coming, it was like my perfect worse-case Daisy scenerio came to life. E's eyes bugged out, she was scared, she didn't understand what was so wrong with her...I just about cried in the car. I decided to save it for the psychologist. I felt like I failed to protect Elena from a bad situation, even though I had tried my best--the AFO display wasn't meant to be a Daisy group event. It was everything I didn't want.

But, E was fine, and never thought twice about it. Well, that's not exactly true...for a while there, she would be sad about not being able to "run like them" or she even asked "why can't she move like them". I looked at her, steeled myself for "the talk" and asked her if she wanted to have that conversation. She looked at me--then dropped her head, and mumbled, "no, Mom". I don't know what she thinks I would say--but I know that she knows it won't fix the way she moves, or change her reality.

Since then, though, Daisies has been pretty great. The majority of the time, our neighbor takes Elena with her daughter (who is also in E's kindergarten class) so I don't have to leave work early (which is WONDERFUL, as I already cut out nearly 4x/week for E appointments). E loves riding with them in the car, and always has lots to talk about after the meetings. E is proud of what she does in Daisies. The leaders really have a great attitude--nothing like my experience in Girl Scouts as a kid, which was almost entirely negative (I was bored to death at meetings, although I did like the uniform and the cookies).

There have been some anxiety provoking situations, though...like when they all cooked food for the Soup Kitchen, and Elena was the only one in a special chair (we brought her Tripp-Trapp chair from home) and the only one who hadn't used a knife before. You know what? She did GREAT. Or the time they went on a nature walk, and E had never walked a trail--I sent her with her Beach Walker, and she RAN. She lagged behind, but she LOVED IT. It's everything I want her to have--challenges, successes, and problem solving in a peer setting--while she has fun and builds confidence. I feel like a walking Daisies commercial.

And here's the kicker. I don't know many of the Daisy parents--mostly b/c I'm not there to take her all the time, but also b/c my memory is shot by the time 5pm rolls around. But I did see one Daisy Dad one day. I noticed--almost immediately--that he walked funny. That his knees--you know--caved in some. Like Elena.

Our eyes met, and I walked into the room to get E to take her home. He didn't know me. Elena used her crutches to cross the hall to use the bathroom--yelling the whole way for me NOT to come in, b/c she didn't NEED my help. So I waited outside.

The Dad looked at me.

"Is that your daughter?"
"Yup."
"She...reminds me of me, when I was younger."
I smiled. "I thought she might. Well, I hope you remind me of her when she's older." (His gait looks pretty fantastic.)

He said he though E was doing great. Hey--don't get me wrong--I'm a proud mom. But here I got to feel proud around someone who "gets it". Someone who knows how much of our lives revolve around therapy and building independent skills that come so naturally to other kids.

I drove home happy. How cool is THAT?! Small world--a Daisy Dad in our troop that has CP!