Saturday, March 31, 2012

Flower Power

We heard from our friends the Teasters that there was a Tulip Festival just north of town. Today was a great day, and it was our only opportunity this weekend.

The Tulip Farm was small, but it was very beautiful.

So Pretty

Picking a bouquet

After picking, Viv goes exploring

"Tiptoe"-running through the tulips



Sunday, March 25, 2012

Wheelin' Weekend

Here is E's wheelchair. When I took it out of the car to take a picture of it, I thought, you know what? It's pretty cute. I call it Little Red.

Little Red even fits in the car, without taking it apart. I took this and the Convaid up to DC (I have both on "permanent loan"). Jason was flying back into town that day, so we decided to make a run for the Cherry Blossom Festival in DC with the kids and my parents.

I packed the Convaid and the wheelchair b/c I figured the kids would be in each of them. I know that they are both designed for Elena, but I wasn't about to bring a third item for Vivian. I was curious to see if Elena preferred one or the other, and how they operated in a "field trip" situation. I figured Vivian would just ride in what ever E didn't. I didn't even have time to put E in either one before the car was packed, so I assumed both would fit okay. We left for Grandma and Grandpa's house, right after soccer.

Coach West showing E how to kick with her instep

Saturday morning I tried E in both chairs; the Convaid was really too small for Elena, which was a surprise. Little Red was a perfect fit. When I saw her in know, I wasn't even sad. She seemed happy it just fit her. She wanted to wheel it. I thought...well, I guess our new normal will just have to accommodate Little Red. So, we packed everything in the car, DC bound. My father had warned us that walking--for the able bodied-was extremely slow-going due to crowds, and parking during the Cherry Blossom Festival was extremely scarce, even for the handicap spots. So we decided to all ride the Metro, chairs and all.

E is helping to buy FareCards

Waiting for the Train--(Vivian keeps on saying "METRO!!!" in all of these pictures)

Boy did they love the ride!!!

The Metro really wasn't all that crowded; the forecast was for sporadic showers, so maybe that kept the big crowds away--not to mention peak season had just ended (it came much earlier than anticipated). I wanted to try for a picture, even if it was just of a few trees. We arrived at the Smithsonian Metro station when I learned my first lesson: just because some modifications are wheelchair accessible DOES NOT mean they are wheelchair friendly. For instance:

There are elevators in the Metro. If you want to wait 20-30 minutes to go up one floor. One guy didn't, and tried to go up the escalator in his chair--he'd obviously done this before, but this particular time something when wrong (and he wasn't buckled in--which was probably a good idea in this case)--his chair went backwards while he was holding the handrails, and Jason left me with the kids (both strapped in their chairs) to save him AND his chair. Scared the crap out of me. If he had fallen down, strapped to that chair (instead of just falling out and riding the escalator on his back) he could have SERIOUSLY been hurt.

There are paved walks on the National Mall. They are paved cobblestone--which means they are annoyingly bumpy. And there is a small strip of paved stone amid a lot of loose pebbles (which are the same color). Guess where everyone wants to walk? On the paved cobblestone. Some of them move for a wheelchair, but not many.

I saw a tour group on Segways. THAT SEEMS PERFECT. It's fast, upright, maneuverable, and you can park it and walk if that's an option for you. There is a family in the next town over who owns a tour company for all-terrain Segways (or, they used to)--their son has CP (more affected than Elena) and (note to self) I plan on talking to them.

Cherry Blossoms!

It didn't just sporadically rain shower-IT RAINED. Almost constantly. And it GOT COLD. Elena kept trying to wheel (or pretend to, she's not good at it) b/c of the novelty--and ruined her sweatshirt in minutes with the wet mud from the wheels. How does any manual chair user keep their clothes clean?

I had the kids hold umbrellas--which they both liked--but IF you were trying to manually push a chair yourself, and it started raining, that's not an option.

We ducked in a cafe 1) b/c it was lunchtime and 2) to get out of the rain. It was crowded. Very difficult to maneuver two chairs through. We did get a table, and the kids both ate in their chairs. E got out to use the bathroom--which was also crowded, and I could just imagine how difficult it would be to get her chair in there.

We went to a museum--there was a WAY long line, in the rain, to get in the building (as everyone had to get into security). The line happened to go from the front entrance down four rows of steps, and around the building. My dad got in line, and we waited for him to get to us after he made it past the steps.

Not many people gave us nasty looks--but seriously, how else are we supposed to wait in line down steps?

Even though the exhibit we wanted to see was under construction, the girls were still very well behaved. The metro ride home was still fun for both kids, and then we drove home (both kids passed out in the car).

Overall, a pretty successful trial day, I thought. Both Elena and Vivian preferred the wheelchair to the Convaid. Little Red proves a smooth ride, with the possibility of independence.

And then we got home.

All throughout that evening, through today (the next day), Elena expected us to help her. Hold her hand, carry her (!), help her, bring things to her--when up until three days ago, she did all of these things herself without question. I have read about learned helplessness, but I never imagined it to manifest this quickly. It could be that she was tired, or had really tight muscles from all that sitting (Metro, wheelchair, car rides) but frankly, I was SHOCKED at how much help she wanted. That is not okay.

But I'm not trying to read too much into this. We're back home, back to our real life--a life in which Little Red is relegated to Field Trip Status. So, we'll see how things go. Despite the weather, this weekend has been EXTREMELY educational, to say the least.

Thursday, March 22, 2012

An Emotional Week

E went on a school field trip last week. I asked her to tell me about it when I got home from work--she was very, very tired, but managed to tell me she enjoyed the trip, and that she walked the whole time (rough terrain, historic site, lots of grass/cobblestone/steps/etc.). I was happy on both counts.

Then I got a more complete picture.

Without going into too much detail....the terrain was too hard for E. She couldn't keep up with the class, and basically arrived at the end of the talking points at each location. She didn't have a great seating arrangement at lunch, and hardly ate a thing. Her feet fell asleep and hurt on the bus ride home b/c of a different bus carseat.

At that moment, I realized that my hope--no, my expectation, that Elena would need her current mobility devices or less as she gets older--was wrong.

And while it might not be a great device for her last field trip, it's the only choice that makes common sense.

Elena needs access to a wheelchair.

So we got one.

Monday, March 12, 2012

Dance Mentor: Ms. C

FINALLY I have some decent ballet pics/vids!

Here is E at her last session with Ms. C. This was probably our most productive session--the room was HOT (I never know which studio will be available) but luckily I had a leotard in our gym bag--a beautiful gift from Ms. Sharon (ballet teacher down the hall during E's Daisy Troop meetings). Never underestimate the power of the right outfit!

Here's E and Ms. C finishing up stretches, with the emphasis on turnout:

Last stretch to grab a water break:

Using a big ball to work on pointing! Ms. C is trying to get her to point her toes to move the ball.

Working on "passes"--E is trying to get her toe to her knee

Trying to do a tendu to the wall

Bourrees--E is trying to take many tiny, tiny, steps while on her toes with nice big arms out. This is actually very good here--E took more small steps than usual, and she was a bit slower than her typical speed.

Battements--E is trying to take a large leading step with a straight leg. She has a much easier time trying this with her left foot leading--but even so, she has almost zero balance on her own when trying to move her leg this far. We also tried this with me holding her torso and Ms. C guiding her in front, which was effective. E felt more comfortable trying this move with lots of support.

We took lots of "soccer breaks", where she could kick the big yellow exercise ball between ballet moves. We invented a new word for E, "Soccerina". Hey, whatever works, right? She had good control of herself after kicking the ball (didn't fall, even though she was on her toes most of the time) and several times she came to a full stop, only in ballet shoes, feet flat after kicking with no hand holds. Yay!

And for the finale? Reverence!

Saturday, March 10, 2012

MJ Kid's Dash

Today the girls woke up a little earlier than usual, for a Saturday.

We had a RACE!

After talking it over with both girls, I enrolled them both in a local charity run. It's very popular, and there is an 8K run, a 4K walk/run, and a 1/3 mile Kid's Dash.

As always, I phoned up the people in charge and asked if we would be welcome. They couldn't WAIT for us to be there!

Elena even had A SPONSOR! How cool is that? Virginia Prosthetics, the company that provides her AFOs/KiddieGaits asked if E would run on their team! (All the other team members were adults, btw). I'm humbled...and so proud my E can represent them.

Anyway, it was a cool morning--perfect for a run. We dressed E and Viv a little warm (probably too warm, but they were pretty cold until they were done running) and put on their race numbers. I jazzed them up a bit, giving them names in sparkly foam letters! (I almost put Puss in Boots on Vivian's back, but she changed her mind.)

Part of the Virginia Prosthetics Team

The 1/3 mile race course was, essentially, a large block. It was downhill for the first segment, uphill for the next two, and finished a downward slope. I knew Elena would finish--and I figured she would also be last, which is not a new experience for her. Still, I worried that she might fall or get discouraged during the run. Prior to the start, one of the race leaders mentioned the important parts of this race: no pushing at the start, to always be safe, and to be exhibit good sportsmanship by telling others they did well and cheering others during the race.

E's last "running" event was the Wee Walk last year; 1/4 mile track, and it took her 13 minutes. I figured with this hill, and the cooler weather, at most she would take 25 minutes, even if she fell. The start and end points were the same for all participants--so, at WORST case, Elena would finish her 1/3 mile when the 8K runners were arriving. Which meant there would be plenty of people at the finish line to cheer E on--a win-win.

After the Warm-Up, heading to the Starting Line

And they're off!

E and Viv were almost immediately at the back of the pack. Vivian was a cute little runner--just going her own pace, and loving the spectacle. Jason and I were worried about E--she was going fast on the downhill, and we thought she might fall. She didn't. Rounding the corner, seeing the big uphill run, though, Jason heard Elena sigh.

"Oh wow...that's a big hill. I don't know if I can do it."

Jason only had to give her a little encouragement, and off she went. A little walking here and there, but she just kept on going. I went with Viv, as she was also alone, and kept running back to see E--both girls looked really, really great!

Vivian around the last turn

Vivian finished at about 5:30 or so--I really didn't get her time, b/c we went back to cheer for Elena.

Rounding the last curve

The Finish!

Elena finished in 7:45!!

Both girls were SO PROUD of themselves! Of course, we were too. This course was challenging and successful, the volunteers were wonderful, and so were the other runners! We even had a surprise...E's first facilitator S was back from Spring Break, so they went on a post-race coffee (and chess) date!

THANK YOU SO MUCH to the MJ8K Staff, Virginia Prosthetics, Gigi and the Arbaughs, and S. W. for your encouragement and help today!

Wednesday, March 7, 2012


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.