A Windy Day

It was a cold, blustery, busy day last Saturday. We'd been out all morning. When little sister Viv went down for a nap, we had about 90 minutes to kill. I suggested flying a kite--and E jumped at the chance!



The wind was unpredictable, and with only two of us, I was nervous that the kite might pull E over, or we'd lose it. Nope. E held tight, and never fell. When the kite crashed, I'd run over and relaunch. E tried holding the kite with either hand.



Even though it was COLD COLD COLD, we were both glad to be outside.

Snow Day

We've had such a warm winter, we weren't sure if the girls would get any snow this year. We were under the threat of snow all day--and it finally arrived!

Bundled up before dinner



We gave E her crutches and let the kids loose. Our neighbors were already outside. E stormed up the hill, no sweat. HUGE CHANGE FROM LAST YEAR.



Viv, of course, moved much better outside. But she still needed her big sis to show her the ropes.



Downhill race!



With their wrists exposed and their mittens filling with snow, one last angel for each!

Basketball and Ballet

This week has been pretty impressive in terms of what I'm calling "motor planning". Elena is doing very well with accomplishing tasks that involve coordinating several limbs at once (doing different things). This is hard to put into words--but I guess it's like the mental coordination of patting your head and rubbing your tummy--you can do it, but it takes thought and coordination--and then BOOM you have it.

Like, at Jump For Heart her timing was pretty good--but landing the jump was not, so she needed help there. Still, her coordination and timing were better than they've ever been.

Here's E at PT last week:



What's great here is not only does she keep control of the ball, but she 1) doesn't fall over, 2) doesn't lose the ball, 3) stops in space--WITH the ball, 4) and shoots it without falling over AND 5) when the ball bounces back at her, she catches it and tries again. This fluidity (if I can call it that) is coming more naturally to her, and that's pretty new. Notice once she stops, she does NOT move her feet to get the ball--the impetus to move her feet to react to an object not aimed correctly at her is not there yet--but it is emerging (thanks to lots of soccer practice!).

We've had a few ballet mentor sessions. So far, i think they are going well. I'd put them in a post by themselves but my pictures/videos aren't that good. But I do have E doing a skip!

It started with her teaching her a passe move, and while it was challenging for E, it wasn't that exciting. When Ms. J used that as a building block to skip, E's eyes lit up and she asked to skip all the way to the exit. (She was pretty tired, though).



Sure, it's a skip with heavy assistance, but it's definitely a new way of moving for Elena, and she was very proud of herself--that's a total win!

With Ms. C, E learned a little more about "turn out"--which is brand new to Elena, as her lower limbs constantly sink towards the midline. E can turn out her feet a little now, and can attempt 1st-5th positions, which again--the motor planning aspect is present. She's also getting to know her feet a little better--I'm trying to have her learn the difference between pointing and flexing. We've been doing dorsiflexion drills for years, and she's decent at flexing her feet. Unfortunately, that's the only deliberate foot motion she knows. If E could point her feet on demand, it would make getting dressed MUCH easier (especially putting on pants). So far, I think she's making fantastic progress, and more importantly, seems to be doing so while enjoying herself.

Jump For Heart

Elena told me last week "Hey Mom--Jump for Heart is next week!"--I basically said "mmm-hmm", figuring it would blow over. I know what Jump for Heart is. It's a fitness initiative with jump ropes. JUMP ROPES.

Over the weekend, E mentioned it again...only, stronger.

"Hey Mom! Jump for Heart is next week."

"Yeah, okay."

"I'M DOING IT."

WELL. I guess it's time I started listening, then.

She's going to do it? DO WHAT? Jump rope? I know the kids had been practicing, and I know she'd done some running around the gym. I also know that Elena cannot currently jump rope--not like other kids, and my bet was, not like anything resembling jumping rope. Still, if she's planning on participating, I wanted to be supportive.

She told me her plan was to time it right to run under the rope. She was very excited about it. She even told Theresa at therapy, who asked if she had planned on jumping. A little while later, E decided to change her mind--she wanted to JUMP rope, not run under it. So we tried a few different things at therapy, hoping one of them would work.

Jumping rope is challenging for the most able of us--for E, it's just not very natural. I imagine it's like trying to jump rope in ski boots. Balance and coordination notwithstanding, E doesn't have a "spring" in her step, and without it, it's harder to keep time. Still, I wanted Elena to feel successful. I told her, and her teachers, that I would be there in case they needed me as a facilitator for E for the Jump for Heart Day. That was today.

Elena was VERY excited that I was going to be there. She was excited to show me her "Run Under".



Later on, I asked her if she was interested in trying to jump. She was intimidated, but very trusting. We tried two facilitators, a fourth-grader and one of her PE teachers.



She came to me, b/c the act of holding her arms to help her jump was uncomfortable. So, I asked her if she would prefer to hold my hands.

TA-DOW!



E was so proud of herself! I knew she'd do it--but I'm not sure she did. She certainly never expected the rope to come around again to jump over it. Some day, she will. ;)

HUGE thanks to Ms. Tee and Mr. Flint, and as always, to Ms. M (her aide) for all their help, and to E's school environment and her classmates for all their support!

Growth

Well, still trying to catch up with life, here. Between school, therapy, Daisy scouts, traveling, soccer, ballet, friends--oh, and the work/home/life juggle, I've barely had any time or energy to update.

E is growing. Currently, she six years old (closing in on seven), about 35 pounds and 41(?) inches tall with her shoes on (she's a 5th percentile girl). She'd graduating to a new pair of Kiddiegaits (coming soon) and she's ecstatic about her new shoes--they're extra lightweight, and are black with pink accents. This is a big change, as she's had the exact same model for three years. She's happy about having new choices.

She's also graduating to a new pair of crutches. These are Easy Walks--she'll get the same model, only one size up.

I don't have to tell some of you that spasticity and growth spurts don't mix.

I dug out her knee immobilizers (from 2 years ago)--she wasn't excited, but tolerates them (a little)


But you know what? I feel like this hasn't been that bad. Elena is very mobile, and has a pretty good attitude most of the time when it comes to stretching or trying something new. We still struggle with the same old stuff--standing tall, putting her heels down, trying not to crouch--but in all honesty--for all the changes going on (physical as well as social and academic), things are going very well. I can say this was not the case in previous years. Either we're doing a good job of keeping on top of things, and/or SDR (?)/lengthening procedures (?) have really made all the difference when it comes to growth and spasticity.

Here's E at PT last week--great walking outside! Stopping is still a huge issue, but with any luck, we'll get there!