Tuesday, May 31, 2011

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:

E and Daddy looking for firewood

Cleaning up the fire circle

Wading in the creek (wearing water shoes)

Knotting the Dishline


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

Monday, May 23, 2011

Busch Gardens

We had the pleasure of spending a great day at Busch Gardens with some great friends. We've done this a few years in a row, and it's amazing to see how much the kids have grown and changed. We all enjoy each other's company, and the park is wonderful. Elena is much taller than last year; she's about 40" tall, when wearing her shoes and braces. She's eligible for more rides--which is great, b/c E is a real thrill-seeker (loves the Battering Ram, Grover's Alpine Express, Le Scoot Log Flume, Prince Elmo's Spire, and the Swings, to name a few).

It's not all great news, though...we had our difficulties this year, too. This weekend was one of the first real hot ones--and Elena's endurance is pretty poor. Both she and Vivian (2 yrs old) wore out very quickly in the sun and heat. We knew we'd need a stroller, and opted for the Jeep jogger double--both kids were in it A LOT. I don't know what we're going to do as Elena gets taller. She did walk plenty with her crutches, too, and without them. She spent most of her time in the Festhaus walking/dancing independently, which was really great! It's obvious in the videos how much she favors bearing weight on her left leg...guess we'll just wait and what happens with that. E also had a pretty nasty fall at dinner, smashing the back of her head on the bottom of the iron table leg (she leaned for the table, and missed)--it's been a while since our last bad fall, and this was the worst one yet (pretty big lump in the back of her head for the day). I know E is tough, but I know that one HURT. :(

We left an hour and a half before closing--longer than we expected to stay--but the last hour or so was spent looking at animals and having dessert.

Here's the highlights!

E's Purple Carousel Horse

Viv got to ride close to Elena


E and Viv doing the Polka

White Baronesses

Bumper Cars (E got it!!)


Sunday, May 22, 2011

Strawberry Picking

I was nervous about trying this...b/c I couldn't find a stool that was a good height for E to sit while she picked berries, and I though that bending over would be too hard, or she'd fall.

Shame on me.

Vivian picked a few--the majority of which went right into her mouth.

The family's haul!

E did a great job--she NEVER fell, and she even held (and walked, a little) the berry box. It went better than I could have imagined--just a fantastic day!

Monday, May 16, 2011

Overcoming Barriers (OCB)

Coach Tom brought his sports clinic program closer to home!

On Fridays, we'll be going to OCB until the end of the school year. It's a 30-minute drive...this is a little bit of a tall order, but we're making it work. I take both E and Viv. The program is for families, with the focus of helping SN kids work on sports skills in a very welcome environment. E LOVES IT.

The staff (Mr. Rich, Coach Tom, and helpers including our own Jimmy!) help the kids work on throwing, catching, kicking, picking things up, rolling, running, and stopping. There are children in wheelchairs, who are blind, who have behavioral disorders, etc. etc. and EVERYONE has a great time, EVERYONE is included, and EVERYONE is welcome. It's really wonderful. And, did I mention it's free?

Here is E working on some skills:

Last week, she wanted to ditch her crutches after using them for the first 5 minutes. She did the rest of the session--nearly 50 minutes--largely without assistance! Including standing up, getting up from falling, throwing, catching, kicking, running, etc. She did sit on my knee during one teaching moment, and held a hand here and there, and touched a wall here and there. Still--that's probably the longest E has been on her own, upright, without devices, while being super active. She was sweating, which is a relatively rare occurrence. AWESOME JOB E!!

Monday, May 2, 2011


Dear Elena,

April 30th, 2011 was your SIXTH BIRTHDAY!! I know you have been so excited about turning six. You want to do more around the house--"washing dishes" and "feeding the cat" are jobs you want to do, now that you are older. You LOVE soccer, baseball, playing catch, and all manners of dollies and PINK.

You are an amazing girl. You are a great student at school. You are finding a way for yourself, more and more on your own. Whether it's playing or working at school, being a great Daisy scout with your scoutmates, being an amazing, patient sister to Vivian, being active outside or being creative inside, you are an inspiration to your family and others.

We love you always, in all ways. HAPPY BIRTHDAY!!

E's choice this year for her Birthday Theme was "Music and Math". (We typically have a theme bday; usually this works great, and it "levels the gross motor field" b/c the kids are exposed to something new). I tried my best to serve that up...but the concept of music theory (VERY mathmatical!) is extremely complex, not to mention I'm not a musician of ANY type! So, I tried...I gave a brief (well, I hope it was brief, it was probably a little too long) discussion of What is Sound (vibration through a medium), natural frequency (like a wet finger on a wine glass--"Glass Harp") and that you can make a scale with any given note (I tried starting with C, making one octave with glass bottles containing different levels of water). Then while people had pizza and cupcakes, some short vids of non-traditional musical instruments (saw, glass harp, PVC pipe organ, and Vadrum videos of "classical percussion"). Then I had an acapella group come to the house--my favorite group from UVA when I was there as an undergradate, The Academical Village People ("AVP") to sing us a few songs. They were GREAT!! Uncle Andy also brought his instruments (guitar, amps, loop stations, keyboard, and microphone) in the playroom so between the "shows" the kids could jam, or play, or listen.

Kids listening to "the show"

Never Say Never

A Whole New World

Happy Birthday Serenade

Viv learning guitar

Playing outside after the "shows"--E falls about a minute after walking in the grass. But her friends help her up--no worries.

E playing with the soccer ball! I'm not helping her at all here!

Vivian's tribute at the "Afterparty" (family and presents)

E's summary, in song

E and Uncle Andy "faking a nap" (but it wasn't faking!)

Thank you to all our friends and family, and huge thanks to AVP and Uncle Andy for making Six a great birthday celebration!