Tuesday, December 27, 2011

New Year's Goals: 2011 Review

2011 was a fun, exciting blur of a year. I have to say, I'm looking forward to 2012. Last year was extremely busy, with lots of Mom Solo (with the hubby in school or away on business), lots of bursts of activities. Overall it was a very good and successful year...and a very tiring one.

I think it was energy well spent--but I need to re-energize. Recuperate? I'm not exactly sure how to do that, but I'm going to try. I'm still thinking of goals for 2012 though.

First, a Review of Past Goals:

--E will be able to carry items at home--specifically, food to the dinner table. CHECK. She can bring non-breakables to the table, and helps clear (plastic) plates/trays. She still spills often, but it's a work in progress.

--E will make some progress getting out of the bathtub. CHECK. Elena can get out of the small bathtub by herself (with supervision). Unfortunately, now we bathe the girls together in a different bathtub that has a higher side.

--E will be able to put her own AFOs on, with supervision. HALF CHECK. Elena can get her surestep inserts on, but not the kiddiegait and shoe part. She can get her regular sneakers on (her shoes she wears without AFOs).

--E will successfully navigate a step without assistance, and without crutches. CHECK! She went up and down a free-standing step at PT, and she can go up and down steps with only one hand on the banister and the other free. Steps are still a challenge, but we're getting there.

--E will be able to put on, take off, and carry a backpack. CHECK!

--I want Elena to make some progress navigating our entire yard. CHECK! She can get outside the back, down the steps, across the grass and to the playset without her crutches and without supervision. She can also navigate around the entire house, steps and grass, with her crutches.

--Elena will be able to get in and out of the pool (using pool steps, a handrail, her swim vest, and anti-slip pool shoes) without scraping her knees and feet. BIG FAT CHECK!

--Elena will answer questions regarding her disability when asked by peers. CHECK. Sometimes I can see she doesn't mind. Other times, she really does, and sometimes, she shuts them down.

--Elena will be able to step side-to-side. Sort-of check.

--Elena will be able to move backwards independently in some fashion. CHECK. She can walk backwards ~10 steps or so without her crutches. She moves about 1-2 feet.

*1. E will walk TO and FROM the bus by herself on a school day. As of yesterday? CHECK!!!
*2. Elena will RUN. And be able to STOP, without a handhold, and without crutches. You mean...Like THIS?

*3. Elena will pivot on one foot (or two feet, simultaneously). Nope.
*4. E will try a jump shot--with a ball, and land without falling down. Untested.
*5. E will attend a dance class without a facilitator. CHECK! She did a yoga class for 5-7 year-olds last month, without a facilitator. I had spoken to the instructor beforehand, and she said that E modified some of the poses but she did GREAT.

--E WILL JUMP ROPE. Half-Check. She sort of did, with Jimmy at the Gym.
--E WILL TAKE A SHOWER--STANDING. She did, but we had a handle in the shower and I helped wash her. Half-check?
--E WILL ROLLER (OR ICE) SKATE. Check--She did ice skate (with heavy assistance) at the Gaylord Hotel!

And me?

1. Get in better shape. Nope. I'll try again this year.
2. Learn how to use Skype. Does Google Video count? I'm going to say yes.
3. Make a Yoga With E short video. This was a big failure. It just took too long, and I couldn't get E to commit.
4. Cook more at home--ideally, with the kids helping me. Check!
5. Vivian Time. Check!

And now, for 2012!

Christmas 2011 Recap

What a great holiday! It was wonderful to have family over, the kids loved having everyone around, and enjoyed their presents. The food was wonderful, the company was great, and things went relatively smoothly.

Preparing for it, though...I was a seriously stressed-out mess. I would have enjoyed it much, much more if I just relaxed more often! I need to work on that.

I organized a picture session with Chris Earle Photography this year. I couldn't put up any of these pictures until after the holiday, since we gave them out for gifts. Here are a few of my favorites. The big difference between this and our other photo sessions? Elena could be the one standing in the picture. (I only have one shown here, b/c it's hard to time the girls' smiles just right!)

We went to my work Holiday Party this year. This is important, b/c there wasn't a close parking space, it was wet and nasty out, and the lighting around the venue was very poor, not to mention the only walkways were "historical"--meaning, cobblestone, or something equally as rough. Elena made it through just fine using her crutches, with a little contact guarding up the steps. The party was GREAT--wonderful food, lots of friendly people, including kids, and a DJ! Vivian and E loved dancing--not to mention, the cookie/cheese table was in the dance room, so everyone enjoyed themselves. There is a gentleman I have seen throughout the building who I had hoped would be there; he has CP, ambulates independently, and always seems to be surrounded by women, and half the time he is speaking another language--he was there, and I was hoping to meet him. But it was a strictly man-to-man defense (1:1 parent:child) and I didn't have the chance.

We also went to a Holiday party in our neighborhood. It was LOVELY! Like a little piece of heaven...food I didn't have to cook, a bartender (!), great neighbors I got to hang out with/meet new people, and ALL THE KIDS WERE DOWNSTAIRS. Even mine. As a matter of fact, Elena came upstairs just to tell me something, and then went back down. She wasn't alone (an older kid neighbor was with her, taking care of someone's baby) but she didn't have to help E navigating the house. THAT IS A MILESTONE, folks! It might not be pretty, but Elena can get around someone else's house--including steps, different bathrooms, wearing a dress, without crutches, and not break anything or impale herself on legos/blocks/puzzle pieces all over the floor in a room crowded with kids. Merry Christmas, indeed!

Santa brought Elena a PINK chess set. She's no Kasparov or Fischer, but she enjoys the game and I know she'll improve. We got a lot of microphones this year--EVERYONE except Jason uses them constantly--we love them. Elena narrates The Nutcracker, sings, Vivian just likes to hear her own voice, I announce dinnertime or pottytime or snacktime--I now think it should be a Mom Essential Item. We also got a little mini-golf indoor setup, and both E and Viv can do it. Elena gets frustrated when the ball is close, but not in, the hole. "THAT'S GOLF." I tell her. Jason smiles.

We loved getting our Doodle Mail! Thank you to all that sent letters! I have already written some of you to tell you our cards will be late...sorry about that. It happens...even though I really hoped to get them all out on time this year. For any family reading this--SORRY we didn't get our Year In Review sent (we didn't last year...surgery got in the way) but I do plan on getting one out. Expect a Leap Year in Review. ;)

Thursday, December 22, 2011

Nutcracker Bold

Last night, Nana treated Elena and I to a live performance of The Nutcracker. This is E's first time seeing a grown-up ballet live. My only concern was the time--the only showing was at 730 pm, which is bedtime at our house.

But, it's Winter Break from school. We dressed up and hoped for the best.

We arrived just on time. The theater was sold out, and we had good seats (close to the end of the aisle if we needed to exit). Elena was TIRED. But it was certainly intoxicating--the theater was hot with people, and when the lights went down E's excitement was palpable.

The show was terrific--but it was the intermission that really surprised me.

We got up for a drink. Elena navigated the crowd well (and there were a lot of people). Everyone was very polite, with the exception of the curious stares. Once we found our seats, I saw oh-so-familiar "swinging hair" in the aisle next to me.

A girl. Just a little older that Elena.

With a gait...just like her, only a little more torso swing.

I looked at Nana. She saw it too...it's like a sort of "CP radar" or something. The little girl appeared to be with her sister and her grandparents. I so desperately wanted to talk to her. I was choked up about it.

"Do you think I can go up to them and ask about her?" I asked Nana. Elena was oblivious.

"I think so...if anyone asked me about Elena, I'd be happy to talk about her."

Emboldened but nervous, I approached the Grandmother. "Do you think I could talk to you?" I asked her with a smile, intending her to come into the aisle so not to talk over their granddaughters. Friendly but reserved, she complied.

I told her I noticed her granddaughters gait, and I was very impressed with her walking--the aisle sloped downward, and the girl was walking without any help or devices. I told her my daughter was 6, and had SDCP and uses crutches.

"The pretty pink ones? She's so beautiful!" the grandmother said. We had a lively conversation. Her granddaughter J had a rhizotomy at 4 yrs too. She started with a walker, and had crutches, and one day told her Dad "I'm a walker" and decided she didn't want them any more. HOW AWESOME IS THAT? J has a wheelchair for "long distances". I didn't have time to ask what a long distance to J meant. She introduced me to her granddaughters. J smiled at me. She seemed to be happy--happy to meet a stranger who was proud of her, and I think happy to be an example for a younger girl. She looked at E (a few rows back, nearly sleeping with her eyes open on Nana's lap) and saw her crutches, and seemed to be proud (which she should be!). Her sister was quite nice also, and engaging.

Overall, a fun, exciting (and late!) evening, complete with a great intermission. Bravo!

Tuesday, December 20, 2011

A Family Break before the Holiday

I had planned a Family Holiday, before Christmas...months before, actually. I never realized how much I/we needed a break. Jason is in school (while working full-time), and I'm working and trying to keep the rest going (cooking, cleaning, therapy appointments, E's school/Daisy troop stuff, Christmas prep, etc.)--WHICH, by the way, I could NOT do (well) without our Fantastic Nanny Annette.

We went to Christmas on the Potomac. We drove up on a Sunday early afternoon--and both girls were ANGELS in the car, including Vivian (!).

The Hotel lobby had a little village in it! With trees and everything!

And a fountain that had a light show!

We went to the ICE show--where the entire (extremely frigid 5 degrees) room is full of ice sculptures. It is outside of the hotel. We bundled the girls up tight in their snow clothes. I asked if there were any mobility options through the hotel--the ICE "bubble" was a walk--not far for the able bodied--but I wondered about E, all bundled up in fleece and snow gear. They offered a wheelchair.

It was the first time I considered using one (not counting post-SDR in the hospital). I asked Elena if she wanted one. It is cumbersome for her to walk in her crutches all bundled up, and I didn't want her to run out of energy for the ICE display. I also happened to read a bunch of posts on one of my newsgroups regarding "learned helplessness", so my brain was on overload regarding Elena and her 0.1 mile trek to the ICE bubble. She didn't seem excited to use the chair. After Grandpa told her she'd "get a ride" so she could "have lots of energy" to explore the ICE show, she agreed.

IT WAS SO SMOOTH AND FAST. Inwardly I was very emotional...guilty, disappointed, confused. Once we got inside, we found out that we had some time before entering the cold room, so we bundled up for nothing. We watched a video about the making of ICE, and Vivian was a whiny puddle b/c she wanted to go inside.

Pre-ICE family picture

Everyone had to wear giant parkas, no matter what was underneath. Thank goodness we had on all our warm gear--b/c even with the addition of the parkas, we were cold!

E in front of one of the sculptures--she insisted on walking everywhere on her own, by the way.

They had a huge giant ice slide (no pics), that both girls liked but it was hard and cold, so we didn't stay there long.

After we exited the cold room, the girls got to ice skate!

There was a woman (in the video above) who saw E having difficulty on the ice, and she came over to give us some pointers. First, I was very defensive (Viv and I were far away) b/c I didn't think she realized that E was going to have a harder time on skates than some other kids. But after I got within earshot, I realized that her advice was actually just perfect for any skater. E went around the rink about three times; her last one (shown here) was her best one. At first, she really couldn't get her feet under her body, but she slowly improved, and the woman's tips were excellent (think about taking tiny shuffling footsteps; if your feet drift far apart, try to slowly step them back together; a helper, like J or I, should hold the child's elbow rather than a hand or torso). I spoke to her afterwards and told her about E's CP. She was SHOCKED, apparently. Overall, both kids loved the experience!

There was even a little train!

We enjoyed wonderful food, a fountain and light show in the Atrium (it was huge!), and the glass elevators were a huge hit. The girls were so well behaved at dinner I couldn't believe it. At one meal, we walked to a restaurant .3 miles away from the hotel. After dinner, we walked a little further to explore. Vivian didn't last long, but E and I hung around.

National Harbor Tree

The way back was uphill. Elena kept a good pace, never complained, never fell, and just kept on going. She walked over .75 miles that eve.

Gaylord Decorated "Forest"

It was a Family Holiday where I got to realize how so many things have changed. Changes I am so grateful for. The biggest change is Elena's going to bed/sleeping habits have been reformed so well, she goes to bed easily now, and she was perfect on our little Holiday. Vivian is so vocal and observant--it's hilarious. They (can) play together so well, it's wonderful to see. E is adventurous, both with her palate and her physical activities, and is very independent most of the time. I got to spend time with the kids AND Jason, which is rare, b/c most of the time we're tag-teaming work and family responsibilities and we don't get much time together. It was beautiful. My parents were there, which was also lovely, as it gave us some support so we could just enjoy the kids instead of wondering where the other parent was when the girls went in two opposite directions. It was a break from our normal life, and also let me enjoy how all our hard work has paid off.

Fingers crossed it just keeps getting better.

Monday, December 12, 2011

Let's Dance

I got an email about the winter community class schedule. Since Elena's in school (and has some other activities), this typically means scheduling stuff for Vivian.

Vivian has been CRAZY for The Nutcracker this year. As in, she knows (almost) the entire ballet (Baryshnikov version, anyway). Out of sheer circumstance, she got the opportunity to dance around (starting off with other little kids) a studio last week while the teacher cleaned up.

Viv stayed there nearly 20 minutes after everyone else had left, dancing by herself.

Oh boy. I better find her a dance class.

What about Elena?

Elena is 6. When we start new activities, with new people, there are so many questions. I rarely shy away from questions, but Elena is in a stage where her disability seems to be more front-and-center than usual, and I want her to enjoy herself rather than be a distraction to the class and a giant elephant in the room. It's a new concept to me...I am typically very open about Elena's disability--it's not a secret, but it's not the most defining thing about her. I guess right now, I see her as more fragile than normal. Not in a seriously fragile way, but in a 'needing a confidence boost' sort of way. Constantly explaining her disability to others is not confidence-inspiring.

Part of it is that I can see her watching her little sister. Vivian is three, and constantly jumps, runs, and kicks. Elena sees that. Vivian is always yelling "Hey Mom, look what I can do!" as she does some sort of jump. Seeing Vivian's pride in me acknowledging her achievements is both heart-warming and heart-breaking, because somewhere I KNOW Elena wants to do the same things, and it's just different. It doesn't come naturally to her.

Let me be clear: I will not keep Vivian from trying activities (dance, tumbling, soccer, etc.) that will highlight her motor capabilities. I know that would not be fair to Vivian. But I want Elena to also enjoy physical activity, sports, dance, and everything else.

Well, I don't have an answer. But I did have an idea.

Elena also loves dance. So I emailed a dance (ballet) club in our college town, to see if I could find a 'dance mentor" for Elena. More of a one-on-one dance "class", where the emphasis would be on fun and movement. I directed them to this blog, so they could learn more about Elena. And you know what? In under 30 minutes, I got two messages from dancers who would LOVE to work with my girl.

It's ON!

To be continued...

Thursday, December 8, 2011

Let's Get It Started, December!

We LOVE this time of year! We're ALL about it! First weekend, makin' cookies with Grandma and Grandpa!

Community Breakfast with Santa!

Elena played lots of games--all of which she stood herself, or used her crutches. She held her own in the crowd and amongst her peers. Great job E!

Both girls enjoyed crafts, and Viv announces to me that someone special has arrived!

Girls with Santa! E wished for another soccer ball and a chess set. Viv asked for a Nutcracker Dolly (please). So cute!

We've had LOTS of people--neighbors, friends, and family, over to watch the Nutcracker with us. We do a little something different every day, whether it's a Christmas craft, or writing a letter, or putting up a small decoration, or taking a special bath.

It's the most wonderful time of the year.

Run, Little Pigs, Run!!

I stopped by E's school today. This is just a little clip from P.E. class. Look how fast she is now!!

More posts soon. Uploading has taken forever, and I'm SO BEHIND on everything these days...