A Life Less Ordinary

Playdates: The Change-Up

2012-01-24T17:46:00.000-08:00

Just a quick post: Elena has had three playdates in the past week! That's a RECORD!

Playing with friends has always been awkward...people have come to our door asking Elena to play ONE TIME (but what a great one time!!) in her life (so far). Since last summer, we've been out more often, as E's endurance and outdoor balance have improved. Slowly, play invites have been coming in...this week's been busier than usual.

It's LOVELY. It's WONDERFUL. Elena is in HEAVEN. We're all so proud of her, and happy for her and her friends.

You know, just doing normal kid stuff. WEEEEE!

West City Soccer: Family Night

2012-01-21T16:57:00.000-08:00

I asked several times previously about soccer programs for kids--Elena did one several years ago with the YMCA. She did well, but she was just starting to walk on grass with her crutches. She was very slow, and managed to get to the next activity just as everyone was finishing. E was proud of herself, though. We opted to try to work on her outside skills before trying again.

I called the local soccer league and asked if they would be open to the idea of E on the soccer pitch. They were EXTREMELY hesitant, but did not say no. Even though they didn't say it, I felt like it would have been a disaster, one that I'd have to fight for E every step of the way. I just wasn't ready for that. I rarely shy away from peer activities--but groups sports isn't something in which I can engineer success for Elena. I feel like I want Elena to be successful in gross motor activities so she can want to do more of them. A scrimmage between lots of semi-competitive kids, who run fast, kick hard, and tussle around doesn't seem like a wise place for a pint-sized kid who gets tangled in her crutches when trying to walk ALONE.

Some friends of ours told us about a family soccer program--their kids LOVED IT. I had talked to Coach West before--but the timing was terrible--outside, a school night, and would end after Elena's bedtime. The timing was all wrong.

This season, the timing is RIGHT. It's a Friday night, it's indoors, and the gym is literally a five minute drive from our house. I was still worried that it would be a bad fit--but it was the best fit we were going to have. I had played soccer with West (against his team, anyway) and he has seen Elena before. We've talked on the phone several times, months apart, regarding whether or not it was a good idea for E. West ALWAYS said it was. I wasn't sure if he would resonate with Elena--or kids--b/c on the field, he could be pretty intense.

We've been three (four?) weeks now.

WEST CITY SOCCER ROCKS!

Family night is just that--the entire family, including younger siblings and parents, all do drills together. It's not competitive; it's a workout; it's cooperative. The other kids ARE WONDERFUL to Elena, which is always a relief for me. There are about 4 other kids her age, and most of them have younger siblings and parent(s) that attend. Elena might be the only one who uses crutches, but she's not the only one who falls, or who has difficulty dribbling a ball or trying to do a drill. The other families are wonderfully inclusive, their children are curious and warm to us, and everyone enjoys themselves. The exercises ARE FANTASTIC--and are things I'd never have considered.

Elena's just another kid out there. Seriously, the first night, I almost cried when one of the other 5-7 year-olds picked E as his partner. They had to follow each other with a ball--something neither of them was particularly good at, but they BOTH challenged EACH OTHER, which was something I didn't think would happen.

West and Lily's drills are confidence building and challenging. They are fantastic for kids, for novices, and for experienced players too. I will make a list of them for another post.

Tonight, at the end of the session, we had our first scrimmage. My worst fear regarding E and soccer skills was tested.

First, the adults played--the rule was NO TALKING and no kicking the ball in the air. Then West picked some kids (the older ones, of which E is one) to come out and play with the adults. ALL the kids got touches--INCLUDING E (I WAS SO EXCITED!)--and no one fell. One of the last plays, E stopped a pass and then it got stuck between her legs. The kids all went for it--but were gentle not to push her, or kick her crutches. They eventually kicked the ball out from her--but NO ONE got hurt, and EVERYONE had a BLAST. It was the antithesis of everything I thought E's first scrimmage would be like. It was GREAT!

Thanks Coach West and Coach Lily--we'll see you next week!

Baby, it's Cold Outside

2012-01-15T20:00:00.000-08:00

Well, it looks like winter is catching up with us!

Like lots of kids with spasticity issues, it's harder for Elena to move in the cold. Her body gets stiffer, and if she layers up in bulky clothes, it's harder for her to move too. Elena can wear gloves, but she can't get them on correctly by herself--not yet, anyway.

We had some convertible mittens--fingerless gloves, with a "mitten" top that can go over them--but Elena needed the mitten off to zip up her coat, and by the time her hands were in her crutches, she couldn't get the mitten top on. So, she'd just wear them with her fingers bare, getting cold the whole time. I ended up buying some knit gloves instead, as I figured her hands would be warmer that way. Still, not the best solution.

The issue is, most kids are fine in those regular gloves--if their hands get cold, they can pop them in their pockets to warm them up. Not Elena--she needs her hands on her crutches.

It's Mother of Invention time!

Introducing: Crutch Mittens 1.0

I don't really have a pattern; I ended up "winging it" and Grandma helped with her sewing machine. Basically, I used a 9" salad plate as a pattern for the mitten, cutting some off the top to make it even for the cuff. We left a 1.5" (ish) hole for the crutch handle to go through. The cuff is made of a little thicker fleece than the pocket, so it will "stand up" better. There is a tie to secure it to the crutch.

Here's the mitten as it goes on the handle:

And then the tie:

Voila! Happy Warm Hands!

My original plan was to have the mittens hang from the crutches (off the handles) when E was indoors. That won't work, as they are too bulky if they are off the handles. So, when E is indoors, the Crutch Mittens have to be removed and put with her coat. This means that currently Elena will need assistance getting the mittens on and off the crutches, b/c she can't tie them on the side (the ties are a little short--and even if they weren't, I don't think she can tie them right now. I might have to switch to velcro). So, this version isn't perfect--but E LOVES the fact that her hands are warm!

An Eye Update

2012-01-10T16:56:00.000-08:00

We just had our yearly ("big") checkup with Dr. P, Elena's pediatric opthamologist. WE LOVE DR. P. I cannot stress that enough--he is the epitome of a gracious, respectful, patient, knowledgeable, conscientious--all around EXCELLENT doctor.

For those of you who don't know (or started following us late), E had congenital strabismus; her first eye surgery was around 8 months (I forgot exactly) of age, with a doctor in-town. After her follow-up, I switched doctors to Dr. P. She has had two subsequent surgeries (her official diagnosis is (infant) esotropia), with the hope that she would use both eyes together, and hopefully, with depth perception.

Today is a great day!

After a 3-hr appointment, it's official: Elena has excellent vision (with corrective lenses). In the past, the prognosis was that Elena had two healthy eyes that may or may not be able to work together. Today, the word is that Elena not only has two healthy eyes (she does have a corrective prescription for astigmatism), but these two eyes DO work together, AND she has depth perception.

The biggest issue is her eyes do NOT work together all the time; when she is sick, or tired, it's obvious that her eyes drift. One more than the other (I forgot which), but they both do it. I can't imagine what that must be like...just tired? or headache-y? When she is wearing her glasses, and she is alert and healthy, her eyes look fine and move together.

All I care about, at this moment, is that 1) she is healthy and 2) reading is not uncomfortable for her. Since she read her book the whole way up to Dr. P's office, I assume that is not an issue.

Driving 3 hours out of your way (each way), spending the night away from home, pretty much sucks. Seeing a doctor that "gets" your kid? WORTH EVERY MINUTE.

Year 2012 Goals

2012-01-04T17:41:00.000-08:00

Happy New Year!

It's time to think of some new goals. I wanted to be more eloquent, but it's late.

In no particular order, for Elena:

1. Carry a regular umbrella, with or without crutches. Elena has an umbrella hat, that she uses when she wants to walk in rain with crutches. She loves it--but it's not super convenient to get it on her head.

2. Elena will go up and down steps (that have a banister or handrail) with only one hand holding it, one hand free, without supervision, regularly alternating right and left feet, at a good pace. When she wants to go up/down steps quickly, she scoots down on her rear and crawls up. She and I have talked about this a lot. When she gets better at standing up to go up/down steps regularly, she can get her ears pierced!

3. Elena will take a group swim class and/or swim without floatation devices in the neighborhood pool.

4. Elena will get in the bath, wash herself and her hair, get out of the bathtub, dry herself off with a towel, and put on her own pajamas. She can do most of these things in part, but has never done them sequentially on her own.

5. Elena will play mini golf, with one or both hands, either with or without crutches.

6. Elena will make her own breakfast. We'll have to put something she can reach.

7. Elena will dress herself in time for school.

8. Elena will spend the night at a friend's house with NO meltdown.

9. Elena will point and flex her feet on demand.

10. Elena will do some of her own stretches herself before bed, instead of us moving her body to do all her stretches.

Crazy goals for E?

*1. E will twirl.
*2. E will walk a dog, without falling while holding the leash.
*3. E will bike up a hill.
*4. E will ride a wave in on a float.
*5. E will catch and throw a frisbee.

And goals for me:

1. Find a way to relax. I'm not sure how to do this.
2. Stay up after the kids go to bed. After such challenging days (especially when Elena is melting down, or not going to bed well) , I've literally been tapped out. I hope to make this time "me time", at least most nights.
3. Get E on the bike more often. Myself, too--I have mine on a trainer in the garage ready to go.
4. Do some rides/runs/multisports races around town. Some of them our whole family can do together.
5. Find an artistic outlet. I do science for a living, I juggle the family life, I'm a chronic multitasker. I need a right-brained activity that helps me unwind.

New Year's Goals: 2011 Review

2011-12-27T17:09:00.000-08:00

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 CATCH A FRISBEE. Untested.
--E WILL WALK A DOG--THAT PULLS THE LEASH. Untested.
--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 HIT A PITCHED (NOT TEE'D) BALL WITH A BAT, AND ROUND THE BASES. Check! Did it at PT!
--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

2011-12-27T17:06:00.000-08:00

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. ;)

Nutcracker Bold

2011-12-22T10:46:00.001-08:00

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!

A Family Break before the Holiday

2011-12-20T19:13:00.000-08:00

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.

Let's Dance

2011-12-12T17:37:00.000-08:00

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...

Let's Get It Started, December!

2011-12-08T17:40:00.000-08:00

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!!

2011-12-08T11:47:00.000-08:00

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...

Swimming "Graduation"

2011-11-28T18:29:00.000-08:00

I managed to get Elena an intensive aquatherapy session. 2x week for approximately 8 weeks. My intention was to prepare Elena to handle a group swim lesson. I'm not sure if she is ready for that--but she is definitely ready for private lessons, should that be a better bridge to a group swim lesson!

10 hops in the water: apparently, this is a milestone for independence in the water.

E uses buoys to swim. Her kick is very good here, better than when her hands are free.

Elena guides herself through a small hoop under water!

Independent swimming! WOW!!! She is using foot fins here. She doesn't have the best kick (she kicks like she is crawling)--but with the fins, it is enough force for her to move through the water. WOW!!

Miscellaneous Recap

2011-11-06T09:06:00.000-08:00

I'm more than a little behind, but here's a recap.

Parent-Teacher Conference at school
I love E's teacher. He really tries to promote a sense of community in the classroom, and at the same time, allowing the children to be autonomous--at least, part of the time. This is difficult for Elena sometimes. Besides talking about what a great kid E is, e talked about how E relies on her aide, when both of us think she could do certain things herself. E's aide is FANTASTIC--but we wondered how far behind, if any, E would be if the aide just happened to be unavailable. This is an important test, since Elena will most likely not have an aide next year. I also learned (just recently) that we'll be redistricted to a different school next year. Ugh. Anyway, back to the meeting--E is very bright. At present, I have no worries about her academics. We have had some problems with teasing, and I brought it up. The teacher happens to be frustrated, with one child in particular, regarding teasing (not just directed to Elena, but she is an easy target). Not shortly after our meeting, there was a meeting with the principal, E, and the bullying student. That was a bit of a surprise to me--I didn't think they needed an official intervention. BUT, I applaud everyone for taking my concerns seriously. I didn't want to single Elena out. But, if it stops the teasing, or sets an example to show that behavior won't be tolerated, that's fine by me.

A Matter of Time
This sort of ties in to E and the school aide/independence thing. In essence, we don't carry Elena any more. We try to get her to do things herself. She can fully dress and undress herself (occasionally she gets caught up on socks, and we put her braces and shoes on) but it takes a LONG TIME. So, we dress her on school mornings. On four occasions, I have carried her from her bedroom, down the steps, on the way to the breakfast table. On EVERY one of those occasions, we've been 10 minutes early for the bus. That means it takes Elena 10 minutes to get out of her bed, and slide on her rear down the steps. 10 minutes--and that's for ONE of the many things we expect her to do herself before school. As you can imagine, our school mornings are regimented--as to when E needs to get up, be downstairs, finish her breakfast, etc. or else we will not be ready when the bus arrives. Early summer, I timed Elena doing various activities, and decided it took Elena on average 6 times longer to do any gross motor activity (and some other activities--she's a slow eater, for example). 10 minutes is longer than that (to get down the steps)--but that's b/c she's just waking up and her motivation is zero to get out of bed. STILL. Until this improves (and I believe it will, at least some) it's a struggle to help E get more independent, and have time to enjoy things. Everyone says "it's a balance", or something like that. I KNOW. I get tired of hearing/thinking that.

E plays with the Tee Ball set Viv got for her birthday (pretty awesome! We should have bought this months ago!)

Some PT videos

Dancing to Don Quixote

Camp Holiday Trails Family Day 2011

2011-11-06T09:04:00.000-08:00

It's that time of year! We were excited to return to Camp Holiday Trails for (Special Needs) Family Day. CHT is a camp for kids--all kids, especially those with special health needs (and their families). The staff is WONDERFUL, inclusive, encouraging, energetic--it's a great environment. I love the fact that they are never phased by E's motor challenges, and they are always prepared to include her in every activity.

We came last year, but Vivian was too young to enjoy certain activities. This year, she did almost everything Elena did. As usual, E was not jealous, and cheered for her sister. I want Vivian to excel in what she does best, even if it means she does it better than her older sister--such as running, or playing tag, or hitting a baseball. It's tricky to encourage the actions of one child, when those actions accentuate the disability of another child. It's a learning process for all of us.

At camp, this isn't really an issue--everyone cheers for everyone, and it's fantastic. Nothing is competitive. Elena even had some friends there, including one from school, who rides her bus! (ADD PIC POST-PERMISSION)

After introduction and breakfast snack, our first destination was the rock wall. Our favorite counselor Stephen was there! E remembered him from last year the minute I asked her if she wanted to go to CHT Day.

Viv getting ready

Now, she's not so sure. She ended up going up 1/3 of the way, and then telling me she was done.

On belay? Belay ON! On rock? ROCK ON!

Elena trusts Stephen

Proud Climber

After climbing, we played lawn games. The grass isn't even, so that's a challenge--but E did great, and never fell! We played Train Wreck and a few other games. Viv wasn't too interested, so I had to keep her occupied for a lot of the lawn time. E was in very capable hands, and had great fun.

Painting Pumpkins after snack

After lunch, Viv went home for a nap (she was d-o-n-e!) and E and I went down to the fish pond. E's never been on a canoe. She was only a little nervous--mainly b/c she didn't like the fit of the life jacket. Don't we all remember how awful that felt around your neck when we were little?

Before our Canoe fishing excursion

The fish weren't biting.

After that, we went to the art studio for a little while, and then we said our goodbyes. The staff asked me about sending E to camp next summer. Jason and I have been wanting to send E to camp--we even paid for a spot at a different camp (2 years ago), only to arrive to see unmanageable terrain (and no refunds). If I had known about CHT then, I wouldn't have hesitated. We'll be back for sure!

3rd Annual Holiday Card Exchange--Post #2

2011-11-01T07:32:00.000-07:00

If you're new to this blog, I organize a card exchange every year for Elena (aiming for a late December delivery date)--she LOVES mail! More importantly, the exchange has been a great way to remind Elena that there are other kids out there like her--kids who wear braces, or wear glasses, use crutches (or other devices), who have siblings, friends, go to school, etc. etc. The best part about it was I didn't say anything when she first saw your picture. But I could just SEE Elena's face recognize she was not alone in her struggle with CP. That is invaluable. It's been fantastic.

If you are interested, please email me (cpmom2009 AT yahoo DOT com) with the following information:

Your name (and/or child's name), child's age, diagnosis, favorite thing(s), siblings, etc.
You address (in full, including country)
How long mail will take to arrive from Virginia, United States (if you know) (particularly important for overseas mail)
What holidays you celebrate, if any, near the end of this year
Primary language--If English is not your primary language, we'll try anyway!

I will not share your email information OR addresses with anyone without your permission. This exchange is between E and you.

If you've already emailed me with your intent to exchange, expect me to reply to you this week!

*NOTE: This is NOT a gift exchange. Sometimes people send little things, which is very nice--but never expected. We'd most appreciate a card, a message (or a drawing/doodle/coloring if writing is difficult), and a picture of your child. We typically send a card with a message (Elena writes some or all of it) and a picture.

Halloween 2011

2011-10-31T18:24:00.000-07:00

Penguins on parade!

At the Children's Hospital Halloween party at KCRC

Getting ready to Trick-or-Treat around the neighborhood!

We live on a big hill, where most of the driveways are steep or have many steps. We encourage and expect Elena to do most of the walking--when she's too tired to go on, we head home. She did get carried--but only between three houses (out of twelve, I think). Some of the houses were scary--Elena was very brave, and never fell. She walked A LOT!

I saw a lot of kids running around and trick-or-treating together. My heart felt a little heavy...Elena doesn't keep up with her peers well in a situation like this. But what made my night? When those same groups of kids--running, laughing, chasing each other--noticed Elena, and cheered her name, and made a beeline right for her. They would give her a hug, and say how great it was to see her, and they would talk about costumes. Elena knew all of them--most of the kids were from her school, and I haven't met a lot of them. I was teary...I want to put that memory in a bottle and save it. What great kids.

We went home, and both E and Viv got to choose one piece of candy to eat. It was a late night, and a school night--but the sugar high was worth it.

Vivian's 3rrrrd Birthday

2011-10-30T17:29:00.000-07:00

Happy Birthday to my little ball of Entropy, Vivian! We all love you SO SO MUCH--or, as you say, "love you whole bunch THREE TIMES". It is a joy, pleasure, and honor for us to have you in our lives. Three years--feels like just yesterday.

She's been into Pirates...so we had a Pirate Birthday Party! ARRGH!

We had friends, pizza, pirate ships, pirate hats, pirate...moustaches?

A Puzzle Treasure Hunt! The kids helped put together a map, leading to the ultimate treasure of Birthday Cupcakes!
The map

The kids paraded together as they went on the treasure hunt. Some things are different, obviously, when E moves in a group. She is guarded when it comes to how she interacts in a large, moving group. E tends to hang back--mainly b/c she doesn't want to get knocked over and hurt. This is good news, I think...she does succeed in what the group does, just more slowly. Both E and Viv were knocked over in a stampede once they found the X that marked the spot--BUT--they were up and running after that. Overall, the kids are very conscious of E's differences and are very accepting--but I guess some considerations are forgotten in the heat of the moment. Reality checks sometimes suck--but I can only hope that everyone had a good time at the party.

V on break after the hunt

After that, yard playtime

The Girls Love Soccer!

Viv got spooked by the neighbor's Halloween decorations

Viv is SO BIG! THREE!

E and uncle Andy

I love this picture

Thank you to all our family and friends for helping us enjoy ringing in Viv's third year!

Pumpkin Patch 2011

2011-10-24T16:55:00.001-07:00

Another GREAT year at Belvedere Plantation!

We go to this pumpkin patch every year. There are TONS of stuff for kids to do and see--this year, we didn't get to see it all. Vivian did not sleep well the night before (bad luck, I guess) and she was pretty cranky around naptime.

Elena LOVES this place. She walked A LOT this year, too! We brought our wagon (which needs to be replaced...any suggestions out there?) for the kids, and Vivian probably ended up spending more time in it than Elena--that was a HUGE surprise. E used her crutches most of the time, and her endurance was pretty good.

The first person we saw? The Pumpkin Princess! Vivian gasped "WOW! A REAL Princess!" so we had to get a picture.

Our first stop: The Kiddie Bouncer

Overall, this was a good experience. I did see a few sad expressions on Elena's face...kids on this bouncer move SO EASILY, even the very young ones, which did not escape her. But that was okay. We all had a good time, even if I was the only mom on that thing.

Barrel Train

Elena cheering Viv down the little slide tunnel (E did this too--she had to climb up a big haystack)

Always the Best Part: The Zipline

On our way

I see such improvement year-to-year in how E moves--this is really noticeable on the zipline. She did almost everything herself--up the steps (we were there with her b/c some steps did not have a handrail), launching herself on the zipline (she did need a push to get all the way across, but so did many other kids), and we were there when she let go of the zipline handle. She was SO proud of herself! We were too.

My first time letting E go alone

E launches, with Viv in the background (she needed help, which was a big deal to E)

There she goes again!

Viv loved feeding the goats

The girls are 3 and 2.5 Pumpkins Tall this year!

Sunflowers

Corn Maze (actually, it's sorrel)

This was tougher than we thought...it didn't help that Jason went in the exit to the maze. We (mostly Jason--gotta hand it to him, he did a great job) had to do all the hints backwards, and I asked if there were any overpasses (built-up bridges with steps, since we had the wagon) and one employee said "no, not if you do it right." Well, three employees helped us hoist over the wagon near the end. The girls thought it was very exciting.

Family Slide

Pumpkin Hunting

E had a hard time with the vines around the pumpkins again this year. It's SO easy to trip! Still we all found great pumpkins, and had a great time. Vivian was done after finding a pumpkin, which is evident in this last picture.

Next year, we are so totally going to do the tractor go-karts (like a bicycle, but E is a little small) and the ropeswings (we didn't go in the barn this year--we were so busy we forgot!)!

Aquatic PT

2011-10-17T09:26:00.000-07:00

(Oh my goodness I just read this...all this rambling will be fixed once I can put a few coherent thoughts together. Wow I'm spent!)

Elena is super excited to have Aquatic PT! We are in a 2x/week program for 12 weeks. I pursued this because I didn't feel like Elena was ready for swim lessons. This past summer, we were able to get E independent in the water with her swim vest (the summer definitely did not start out this way--even while wearing her swim vest, it took a while for E to be able to right herself).

We considered group swim lessons...but the pool is still a very dangerous place for Elena, mainly b/c of the edge. Obviously, standing and walking along the edge is dangerous for her--but also entering the water from a seated position along the edge, b/c frequently she just *barely* clears it--if she enters "toothpick-style", her head misses the edge of the pool by a sliver. At this moment, I think she would need more attention than is offered in a group lesson, and I wasn't ready for private lessons, as I figured she might need a different sort of swimming introduction than they typically offer (not to mention the cost).

I LOVE E's swim lessons with Emily, one of her old PTs (from her post-SDR days). The therapy pool depth ranges from 2 feet to 4 feet. They warm up walking/running in the 2ft end, and have Elena try to stop on her own in the water (great practice, as E has trouble doing this anyway). Then they'll try to have E put her head under the water (she LOVES this, especially since we got her some goggles that fit!) and retrieve items off the pool entrance steps. The object here is two-fold; one, for her to be comfortable with her head under the water, and two, to try to keep her feet under her (core strength, limb coordination). If her feet float up (which they do often), she can stay under the water to pick up the item. Emily expects this lesson to be learned pretty quickly.

Staying Grounded

Emily also wants Elena to learn to swim with her head in or under the water. There are many reasons for this, but the biggest two are being confident in the water and saving her energy for swimming. Heads are heavy, so it will fatigue her (and the rest of us) if she tries to swim too long with her head out of the water. Note, that at present, her legs move like they are crawling. It is the expectation that her leg movement will lengthen as she is more comfortable moving in the water, with the hope that she'll be able to "kick from the hip" eventually. The good news here is her arms look great--the are much farther away from her body than they used to be!

Swimming

When E looks underwater, she ends up arching her back to place her head under the water. She also tends to stop moving her arms and legs. Emily is encouraging E to keep moving while looking underwater. To pick her head up, she has to "push" her arms down into the water--she is doing a GREAT job with this, and her fingers are staying together better (we call them "fish hands") rather than being far apart, which makes it easier for her to bring her head up.

Looking underwater

E also wears little swim fins on her feet. This isn't really to help her swim (well, not yet, anyway). Mostly it is to make her aware of her feet, and to work on raising her knees and flexing her ankles to move and stand. Great dorsiflexion work!

I was worried she would be too tired to do ANYTHING after a full day of school and a swim lesson. After our second lesson, Elena not only was walking around the house barefoot (great confidence!) but she also went down the entire flight of steps after her bath--barefoot, with no assistance, using only one hand on the banister. That almost never happens, and certainly never at nighttime! Her energy is decent, her movements look great, and she is enjoying herself. YES!

A note regarding Setbacks

2011-10-10T12:55:00.000-07:00

I wrote about E's setbacks a few posts ago. Well, her Feldenkrais practitioner Mr. Keith had a few words for me. Since writing that post, Elena has been more active, and her gait is looking better. Maybe with more exercise (different exercise), she's looser? I don't know. When we see setbacks, I'm sure fatigue has a lot to do with it, as does general growing pains (physical, social, academical, etc.) and I'm sure I could use more patience to deal with my kids. (Don't we all?)

Keith put this very eloquently--he acts similarly to how he writes. Maybe you all can identify with my frustrations, and glean some pearls of wisdom from his letter too.

It does not surprise me if her gait has lost some grace. And I think there may be several factors at play.

1) She may be sitting in a chair more for longer periods of time, which is a flexed hip and knee situation. That has a tendency to limit even more the ability to straighten up. It happens to everybody, but matters more when there is a slowness of the nervous system's ability to tell the muscles to relax and lengthen. In working with Elena it was always remarkable how the tone (in her feet especially) would be very general and high. After a few minutes of gentle movement and some attention to them, they became more lively and differentiated in their responsiveness.
It is not just a matter of lengthening the tissues, as in stretching, but of keeping the nervous system actively "listening" to what is going on there. The longer the shoes are on without a break, and the longer she sits not needing to feel and regulate the actions of her legs, the more they lose some finesse. Again, that happens with all of us, but the effects are exaggerated and take more concerted attention to recover from in a situation like Elena's.

2) She may be growing in her bones, and the muscles and connective tissue tend to lag behind the bone growth and adapt to it, so there can be periods of exaggeration of the shortness. Once again, the remedy for this is activity that (gently, in my opinion) moves her through the ranges, repeatedly, and with attention to what is happening, not forcing. Infants spend a lot of time paying attention to themselves… its their full time job. Kids moving out into the world start shifting that learning attention outward. For a kid in Elena's position, she needs this continuous exploration of herself more than other kids her age, because the basic physical learning that normally happens earlier is an on-going project for her. She definitely can continue to learn better control and finesse in her feet, legs, pelvis and low back to improve her gait, but it just doesn't happen as fast. The basic learning and adapting ability is there, but it is as if both the incoming sensation signals, and the outgoing motor control signals are muted. So it takes more time. Beyond that, it takes helping her to stay in a situation which she can experience things multiple times. Infants do that naturally, because they are exploring within the limits that they have… When they can't yet roll over, they are exploring all the things that lead to being able to roll over. Elena has passed by some of the basics for walking, because she could, and because her intelligence and maturity outpaced her physical learning. The games we play together in the Feldenkrais sessions get her to explore those fundamentals over and over and over again, so her nervous system can make sense out of what is happening through those distorted signals.

It is great to hear she likes the water. With the right kind of guidance, and given the skill and strength she has in her upper body, it could be an experience of grace and lightness hard to match on land in a world of balancing on the legs and falling. Those kinds of experiences build up the soul, not just the body of a young person.

One more thing about what Elena was getting this summer from the Feldenkrais sessions: acceptance. I built the activities around her abilities and her intentions. (It sounds like her teacher understands this too.) It was a place where she was pretty much queen of the roost, even though I was putting her into all sorts of situations that required her to pay attention to what she was doing, and do it over and over and over again. That's a rare combination that creates a potent learning situation.

The "holding on so tight" you mention is an example of her "passing by" the explorations that she needs to learn to be on her feet. Because she can find other ways of getting where she wants to go, and because her interests and ambitions have grown beyond working out the fundamentals like an infant or toddler does, just taking away the support is not going to lead to her getting more graceful on her feet. She needs the guidance (and a situation in which she is enjoying it) to put in the "study time" on that part of the development she missed.

3rd Annual Holiday Card Exchange--Post #1

2011-10-10T10:47:00.000-07:00

I'm sending this message out earlier this year...last year we found out the hard way that FedEx letters send overseas get caught up at Customs for over a month. (Sorry about that!)

If you're new to this blog, I organize a card exchange every year for Elena (aiming for a late December delivery date)--she LOVES mail! More importantly, the exchange has been a great way to remind Elena that there are other kids out there like her--kids who wear braces, or wear glasses, use crutches (or other devices), who have siblings, friends, go to school, etc. etc. The best part about it was I didn't say anything when she first saw your picture. But I could just SEE Elena's face recognize she was not alone in her struggle with CP. That is invaluable. It's been fantastic.

If you have exchanged cards with us in the past (and included a picture), we have you on Elena's Buddy Board in her room. She remembers who you are, and little things about you. She even said she might want to marry one of you! (YES E, YOU!! And she still wears that necklace ;)

If you are interested, please email me (cpmom2009 AT yahoo DOT com) with the following information:

Your name (and/or child's name), child's age, diagnosis, favorite thing(s), siblings, etc.
You address (in full, including country)
How long mail will take to arrive from Virginia, United States (if you know) (particularly important for overseas mail)
What holidays you celebrate, if any, near the end of this year
Primary language--If English is not your primary language, we'll try anyway!

I will not share your email information OR addresses with anyone without your permission. As of right now, this exchange is between E and you. If you are interested in a larger exchange, where your information is shared with other interested parties, please note that--if there is enough interest I'll email everyone privately (by the end of October), and we'll go from there.

*NOTE: This is NOT a gift exchange. Sometimes people send little things, which is very nice--but never expected. We'd most appreciate a card, a message (or a drawing/doodle/coloring if writing is difficult), and a picture of your child. We typically send a card with a message (Elena writes some or all of it) and a picture.

Another Car Bomb

2011-10-09T18:31:00.001-07:00

As I was taking E to her Daisy Scout meeting last week, E dropped another bomb on me.

"Yeah, so, at lunch, S made fun of me," said Elena, her voice dropping low.

My big eyes are searching for her in my rearview mirror. Why is this always happening in the car??

"Well, what did she say?" I inquired cautiously, hoping E wouldn't turn into a weeping puddle.

"She called my crutches stupid and said I was slow or something."

Okay, I'm thinking. This sounds like she's telling a story, not like her heart is bleeding. GOOD.

"Well, what did you do?"

"We didn't do anything," E shrugged. Shrugged? Shrugging is GOOD.

"Who's WE?" I asked.

"My friends at lunch. You know, C, M, and E." OKAY, I'm thinking.

"What did you all do?" I asked, after a pause.

"We ignored her," Elena said nonchalantly, inbetween bites of her snack. "And then S said something mean to C. We ignored that too."

WELL.

I thought my heart would break the first time E would tell me she was teased. Instead, it soared. I'm so proud of that girl.

I did spend a little time commending her for being brave and strong, thanking her for telling me what happened, and trying to tell her ignoring mean comments is fine--but speaking up for herself and others is okay too. Overall our driving conversation went well. This will be a good stepping stone for the (inevitable) next time.

At the Zoo

2011-10-09T17:57:00.000-07:00

A few weeks ago Jason was out of town, so I took the girls to the National Zoo with my parents. Last time we went (years ago), it rained horribly and I was still nursing Vivian. This time, it was supposed to rain also--but the rain never came, the crowd was thin, and all the animals were out!!

Riding on the little bear

Following the Elephant Trail (this was their favorite!)

I think they are looking at meerkats

Butterfly Garden

We found a wild lizard (escapee, maybe?)

My Dad got lots of great pictures of animals (does your kid have a favorite? If we have a shot of it, we'll send an e-card!). Vivian recognized many species, and really enjoyed the elephants. E liked the lions (8 older cubs!), the reptile house (she loved to find all the camouflaged animals), and the otters. While we were watching the otters, a young family approached us with their daughter as they helped her out of her strollers--"Hey, we have the same shoes!" (SureStep AFOs). Their little girl was younger than Elena, but many similarities were there. It's always nice to see parents that "get it".

One thing I don't get, though, on a trip like this--TRANSPORT. I am always wondering the best way for E to get around places. In our case, the ideal method of transport is our (used) sit-n-stand. It's our go-to option when we have both kids--Elena can't fit in the front seat, so she gets the "big girl seat" in the back. It's easy for E to get in and out of, and she can kneel or sit or stand while we move around. But what do I do when Viv is too small for the front seat? Elena is proficient in her crutches, and getting better all the time...I want them to make a sit-or-stand where BOTH seats are sit OR stand. That would be perfect for the next few years.

Our expectation is that when going to a large park (like the zoo, or amusement park) E would use her crutches--and when she gets tired, take the train or skytram or something like that. I'm not completely opposed or ruling out a wheelchair or scooter, but they're so darn BIG I'm hoping we can just stay with the small/collapsable equipment.

Therapy Sifting

2011-09-29T11:33:00.000-07:00

Well, here I am about a month into the school year. A month since we basically shut down a lot of Elena's schedule, so she could get used to the changes related to starting First Grade.

Here's what was removed from the schedule (more or less):
-Feldenkrais 2x/week
-bike ride/playground 1x/week
-art class 1x/week

Here's what was added (more or less):
-hippotherapy 1x/week (not really, but the horses get the month of August off)

Here's what changed during this period:
-E has to go to bed promptly by 815pm, up at 620am on school nights (bedtime remains the same on non school nights)
-E is in school (obviously) and has an aide to help
-E has PE 4x/week, and recess daily (not sure how much the aide helps in either of these cases)
-E got KiddieGait braces (rather than her DAFOs)--lighter, a little more flexion with the KGs
-E has learned to run (with and without her crutches)
-the focus in E's PT has been, more or less, away from CME. They have been trying some new techniques (Kinesiotaping) and evaluating her short/long terms goals (many of which are related to independent movement while wearing her braces and shoes)

Here's my big observation.

Elena's gait/stance looks WORSE.

She seems to
1) toe-in more often on the right side
2) weight bearing in standing is decidedly on the left foot
3) right knee/hip caving in more often and more pronounced, when walking or standing, especially when NOT wearing braces and shoes
4) confidence is lower when walking without a handhold (especially without shoes and braces)--immediately falls or whines about falling in the morning. In the evening she might not fall as much--but she's WAY on tiptoes

So, here I am wondering what key element(s) is (are) currently missing to account for this relatively abrupt change. My first thoughts are
1) Elena loves to go fast now. Faster movement is going to involve more spasticity--so her stance will look worse. I understand that, but it doesn't explain why her slow movements look bad.
2) I wonder if she's "coddled" at school? Meaning, if she whines, or is tired, she gets a ride or gets things brought to her rather than do it under her own power? She says her "right leg is weak" a lot now--as if that excuses her from using it. Sorry kiddo, not going to work with Mom.
3) I think E needs more CME. This is BY FAR my favorite therapy, and I've been slacking off at home and her private PT hasn't been doing much of it as late. I will devote some time to this (time to get creative so E will agree to home PT sessions!)
4) Do I need to get Feldenkrais back on the schedule? E loves the practitioner--but realistically, it's going to be HARD to get that squeezed in 2x/week.
5) Could this be related to growing?

I know a lot of you out there try to balance life and therapies--how much is too much? What kinds are important? How do you know if they are doing anything for your child? I guess the best way to figure that out is to remove it from the schedule and see what happens. So far, I'm not liking my decision to do this. Time to add one (at a time?) back in (by magically making more hours in a day??), and see if that makes a difference. Super.

Prognosis of a Faun

2011-09-26T13:27:00.000-07:00

You may remember my post about The Faun; my reaction to watching a theater performance, starring Gregg Mozgala.

Since then, Gregg and I have exchanged some messages regarding this blog, Elena, dancing, and his performance(s).

They want to make a documentary about this story. They are soliciting donations to make this happen.

If theater isn't your thing, I understand (it's not mine, either). If dancing isn't your thing, I get it. But if you are the parent of a child with a disability, this story is amazing. Ballet changed Gregg's life.

What if Gregg was your son? He reminds me so much of Elena. If his story, the Faun performance, or this documentary could help one other person, or help educators envision another outlet for our kids--wouldn't that be fantastic?

I will certainly highlight it here if the film gets the green light. And if it does, please check it out.

Are there other films/movies that I should know about? Do you have some that really resonate with you, especially if you or someone in your life is affected by CP?

Thoughts on First Grade

2011-09-26T12:43:00.000-07:00

I didn't have much apprehension about First Grade. Actually, I was looking forward to it-and Elena was too.

E's teacher this year is new to the school. He is very approachable, and seems to enjoy E in the classroom. He encourages autonomy and community within the classroom. One thing that surprised me was Mr. M's question regarding her in-school therapy time. Apparently, the PT was going to pull her out of recess. Mr. M. thought E might really like recess, and figured maybe I should weigh-in as to what E would miss while she was at PT.

I couldn't believe it.

I never thought of that before. E's been in public school for 4 years now, and this is the first time anyone asked me that.

Now, I'm not mad at the PT or teachers that E's had previously--I was so grateful that she was getting services in school, I never thought about anything else, and no one (including Elena) ever made me think that she was missing something during her therapy pull-out time.

But, things are different now. She's making friends, she's playing with others, her disability is front-and-center, and her playmates seem to be okay with it. She integrates herself in recess and P.E., and loves being active. I asked E's team (teachers, therapists, us parents, and E) what we felt was a good fit for school PT--and the decision was made that she'd miss a 1/3 of literacy time. That was a bit of a hard sell for me--Elena can read, but she still needs a lot of help. But we all agreed that she should not be pulled out of something physical to do physical therapy.

Right now, Elena still has her aide from last year, A. A still helps Elena with some things--pushing in/out her heavy tripp-trapp chair, carrying her lunch or tray in the lunchroom, occasional help in the bathroom, help on the playground and in P.E. She has an adaptive P.E. student help her once a week (they are great!). Elena still needs help on/off the SpEd bus. She gets the option to ride in her push-chair (wheelchair with small wheels) if she is very tired over a longer distance (after recess, for example).

We worked very hard over the summer for Elena to be more self-sufficient; the Summer of No Carrying paid off BIG TIME, as she can do so much more (hills, stairs, steps, etc.) and in a reasonable time frame. Over the school day, however, her endurance is not strong. I am expecting this to improve over the school year; by the end of First Grade, everyone is hoping that Elena will be fully independent (meaning no personal aide for normal school activities).

It's a big goal. But First Grade is a big year for us. I think Mr. M. is a good fit for Elena, during this physically, socially, and academically growing year.

Kinesiotaping

2011-09-26T12:07:00.000-07:00

I have some interesting pictures/footage of Elena wearing kinesiotape. If you haven't heard of it, kinesiotape is a type of skin tape used for lots of applications...in our case, to stimulate/differentiate muscles. The tape is stretchy in one direction; so, depending on the position of the body and the direction/tightness of the tape, you can promote (or discourage) movement. It's sort of like wearing a band-aid across your knuckle, along your finger--if you put on the band-aid when your finger is straight, you don't want to bend your finger.

Anyway, we've tried it a few times--over her knees (to promote taller standing/walking) and across her right hip to discourage turning in her leg from the hip socket.

For some kids, the difference is pretty dramatic. For us, that wasn't the case. While I do feel like it helps (a little? there's a lot of "hand-waving" here), there is no massive difference. Depending on the application of the tape (alcohol primer, no repositioning, good adhesion) it will stay on 1-7 days. Elena does not mind it, provided she doesn't pull on it when getting dressed (you can't rip stuck tape off--you need oil).

I am interested in trying this for a while--and I'd like to make some before/after video footage. Problem is, every time we've done kinesiotaping, she's been in her underpants or in a situation where you can't see the tape. I can say, if this shows some progress and we end up doing this on a regular basis, I'll be learning how to do this myself.

Video/Picture Recap

2011-09-14T06:10:00.001-07:00

Some new favorite videos and pictures that I'm too busy to write about...

At the Polo match

Pony Birthday Party

Tailgating at the Nationals Game

Viv loves Pepsi

Pictography

2011-09-09T09:16:00.000-07:00

Elena has been going to bed PERFECTLY since I wrote the last post. Now, last night, I thought we were headed straight for the Meltdown ("MD"). We'd been getting a lot of talking back and defiant behavior (not uncommon on a therapy day), and sure enough, Elena threw a fit when we told her it was time to get ready for bed. She typically yells, screams, and hits things (normally not people). During these fits, she will say things that make sense, like "I am NOT HAPPY WITH THIS!" and other perfectly other reasonable feelings. But, if we don't give in (which Jason and I do not), then it turns to MD central, where Elena just yells and screams--no amount of talking will calm her.

Until last night.

Jason was on "MD duty" and he tried several different ways to try to calm her/explain the situation. I was upstairs putting Vivian to bed. 40 minutes later...it was quiet downstairs--conversational even! I went downstairs cautiously, and heard Elena say "I learned my lesson" somewhere in a sentence--and we went ahead with bedtime as usual once I entered the room.

Smiles. No problems. Not even a lot of questions.

After I kissed E and left the room, I expected the screaming to start. Even so, I figured, tonight was an achievement. But--it never got loud. Elena never called for me. She just went to sleep, like the two nights previously.

"Jason--what did you DO?" I asked, needing an explanation of this miracle.

"I drew her a picture."

THIS? This stick figure-picture saved the evening?! Basically, it says (left-side column) "Daddy and Elena ready to play (game of) Life, happy" and on the right column, "Elena hits--Daddy is sad. No Life."

Stick figure drawings are now our #1 weapon against MDs. Who would have guessed that??

Bedtime Disappointment

2011-09-06T08:28:00.000-07:00

Well, here I am again.

Elena is acting out at bedtime again. I have no idea what set it off...we were doing so well over the summer. We spent the night at my parent's house one time, and E was TERRIBLE--screaming, shouting, just...awful.

Her outbursts have been sporadic since then, but seem to be approaching regularity. I am convinced it is not because of school (well, it's been happening through the summer too, anyway...whatever that means). She is seriously FINE throughout the day--happy, smiley, occasionally contrary (she's 6, after all) but when it comes to night time--as soon as she gets tucked in, she picks something to obsess about.

Is her blanket on right? (For the 5th time, YES)

Will I come and check her? (I DO THIS EVERY NIGHT, once she is asleep--I shut her door almost all the way, so she knows I've been there)

Does she have a tissue if she starts crying? (YES. I do remind her if she loses it, or needs another one, she's perfectly capable of going to the bathroom to get one herself if she thinks she needs one that badly.)

She will ask these questions in different (or same) ways at least 5 times. She KNOWS the answer, but will start screaming if we don't answer her. Then she'll say she "misses [fill in the blank]" (family, friends, a stuffed animal downstairs) or that she's "afraid of [fill in the blank]". She NEVER SAYS THESE THINGS until she is under the covers at bedtime. Then she's upset b/c she "can't fall asleep" or I "won't let her fall asleep", screaming about it for 20 minutes or more. Then she tries to switch the parent in charge.

It's almost like she needs 20 minutes of crying in order to rest.

It's INFURIATING. I am so disappointed. I am angry with her. I try not to show it, try to make bedtime as normal and unanxious as possible, but this makes my mouth and head hurt b/c I am gritting my teeth so much. Jason and I are dreading bedtime again. Elena is robbing any couple time we might have with her behavior--because once she is actually asleep, we are too drained to bother trying to talk to each other. Some nights we rebound, but normally I am completely tapped out.

So, today I'm calling back our psychologist. The one we graduated from this Spring. I told myself I wouldn't feel like a failure if I had to call back...but that's simply not true.

Earthquakes, Hurricanes, and Bears, OH MY!

2011-09-01T09:59:00.000-07:00

Last week was CRAZY.

Virginia had an earthquake (5.9 on the Richter scale)--my first experience. It was scary and fascinating. No one was hurt around here, and very little damage to buildings. Elena was scared--but kept her "brave face on", so proud of that girl! We've had several aftershocks--I'm ready to be done with quakes in general, though.

Elena started First Grade.

We had about a billion Hurricane Irene warnings--it was going to miss us, for the most part. We got some rain and some wind--again, nothing major. I feel bad for our neighbors South, and up North who got lots of wind and water. Hope you all are okay.

I had planned to attend a camping trip with some friends a long time ago. They are seasoned campers--as I've written before, I dislike camping, but I had promised Elena that I would take her and Vivian if they wanted to go. So, amid the arrival of Irene, we went. (And on the way, the car died--nice way to start the trip, no?)

Camping with a disabled 6 yr-old can have its challenges--but camping with a fiesty almost 3-yr old is HARDER. A giant bear (not kidding, HUGE!) greeted us at the campsite--I WAS PETRIFIED--but both Elena and our friends were okay with it (!!!), so we stayed (and, obviously, lived to tell the tale). It rained, as expected. We just dealt with being damp most of the time. It was actually quite pleasant while we biked, hiked, and fished the following day (we managed to do all those things inbetween buckets of rain).

Morning hot chocolate

Viv readies the line

Fishing (we even caught three fish!)

Hiking

Biking during a break from the rain

This week our Fantastic Nanny Annette is on a well-earned vacation, so we're piecing things together. And with Jason going overseas for school in two weeks, I'll have more than ever to juggle. C'est la vie, non?

Hello First Grade!

2011-08-24T07:01:00.000-07:00

This morning we got up a little earlier for E's first day of First Grade. I figured it would take a little longer, since there would be No Carrying. NOPE!

Elena didn't sleep great...little aftershocks before bed didn't help either. Still, after only a little whining, she got up to face the day. We had picked out a dress for school the night before. She was all ready, waiting to sound the "Bus Alert", when I realized we had 10+ minutes before the bus came. So, one crutch in hand (and the other in mine), we went down the front steps to wait and take a few pictures. Vivian was upset she wasn't going to school.

When the bus arrived, her driver was really excited to see her. And to the surprise of everyone, she went for the bus step and handrail BY HERSELF and got herself aboard! That step is huge! All our work this summer of getting into cars by herself really paid off--getting on the bus was a "piece of cake", as E likes to say. YES!!

-insert after-school comments here?

Shark Week Part II: The Beach

2011-08-09T10:34:00.001-07:00

After we checked out of the hotel, we headed for the beach. We planned on going to Grommet Island, an "accessible playground", that we heard about from our friends The Teasters.

But...it was HOT. And midday. A lot of Grommet Island was shaded, so that really helped.

Elena liked the sound board

Snow Cones

Viv "surfs"

Overall, I thought the playground was great. It was wide and flat, and lots for the kids to climb on, around, was very interactive. If it was a cooler day, I think the girls would have played on it more. As it was, they really wanted to go in the cool waves.

The beach terrain was...dissapointing. The only flat part was dry, deep sand--too hot for the girls to walk on. Once we got to the wet sand, it was packed, but sloped steeply downhill, and not much room between the packed sand and the water. I told E to try to walk--here is E's best sand walking to date!

I didn't get a chance to raise the Beach Walker. Right now, it stands as high as her loftstrand crutch handles, which I thought might be fine. NOPE. It needs to be raised 4-6 inches. I didn't have the time to do it before the trip. Even if I had, the slope of the beach would have still been a problem.

The other surprise was the strength of the waves--we had to keep a handhold on each kid at all times. Even the tiny waves knocked Vivian over, when the water was only calf-deep. Grandma and I got a workout hanging on to the kids--especially when they wanted to go "wave jumping", which translates as "sore backs for grownups". Elena did do some good standing in the water, just as the water splashed over her feet. She stood there smiling for over a minute, her knees sinking deeper toward her midline as the water washed sand away from where she stood.

I was very proud of my girls--Vivian for being good while missing her nap, and E for handling herself so well on the beach. But places like these are hard...to see other kids running, jumping, boogie boarding, swimming, their parents teaching them to stand on a surfboard...sometimes keeping my smile on is difficult b/c my heart is heavy.

Shark Weekend Part 1: Nauticus

2011-08-09T05:30:00.000-07:00

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!

C-MoR weekend

2011-08-02T05:08:00.000-07:00

This weekend, our Fantastic Nanny Annette and I took the girls to the Children's Museum of Richmond. I knew it would get crazy crowded, so we got there right when it opened. Here are some highlights.

Viv on the Dinosaur

Elena working the Apple Tree (note; she has to start walking with her right and left, respectively, in the videos below)

Going down steps in the Treehouse. She wants one hand on the railing, and one hand held; I refused to hold her hand, as the steps were relatively small. I love the way her foot is mostly straight when she goes down--that was a LONG TIME COMING!

In this vid, her hand is too high when going down the second step. She still isn't confident to move her hand to the right place each time when doing steps, up or down. She'll get there!

We broke for lunch, and came back to play for a while. The place was PACKED by that time. There were a lot of kids asking Elena questions about her crutches/braces, and staring. None were mean; actually, some were quite nice. But E got tired of the questions. She stopped answering them. At one point, we were waiting for a Magic Show to start. We were sitting on the ground, waiting patiently (unlike some other kids). One very nice boy asked Elena "what happened to your legs?", in a very nice, curious tone.

"NOTHING."

WHOAH. I mean, my eyes got huge and I sat up straighter--E's tone was FINAL. That kid has a serious tone of voice!! The boy snapped right back around, almost scared to look at us. E's response was unexpected. But, in a way, I'm really proud of her, for letting people know that sometimes, it's not okay to ask questions. I was just a little shocked, that's all.

Overall, a great day, lots of great movement, and TONS of fun!!

Trail-a-bike in the Neighborhood!

2011-08-02T05:04:00.000-07:00

Here is Elena and I going for a ride. Our neighborhood is HILLY. This gives you an idea of how fast we go (sometimes). E really does help when pedaling uphill--but sometimes, I can feel her really holding on with her hands (trying to push against the handlebars as she pedals) b/c she can really jerk the bike. But, overall, I feel relatively safe riding around with her. I'll take some pictures of her pedal setup--she is strapped in well, and her only rule when on the bike (besides wearing a helmet) is to HANG ON AT ALL TIMES.

She really loves it. I certainly sweat a lot, both from the biking and anxiety with E, but we have a great time.

Eye Checkup and Playgrounds

2011-07-16T18:15:00.002-07:00

Elena just had an eye checkup. While things haven't changed a lot, we did get some news. Elena's eyes still "drift". They have since birth, despite interventions (glasses, 3 surgeries). The good news--and the original goal of her surgeries--is that she has excellent vision in both eyes. Unfortunately, they do not work together consistently, so Elena's binocular vision/depth perception is unknown.

I asked our doctor--how would I know if Elena would benefit from another procedure? How can I tell that her vision is affecting her balance? He said if Elena had consistent problems clearing steps (which she kind of does, but I think it's more of a muscle coordination thing) or rounding corners (nope) or getting food on a utensil and into her mouth (nope), grabbing toys or pencils or cups (nope) . I said I didn't think her vision was the big problem with her balance, and Dr. P agreed with me. My hope (now that E's eyes are confirmed to be healthy individually) is that she will be able to read without too much fatigue or pain from using her eyes together. So far, this hasn't seemed to be a problem.

For right now, E will keep her same prescription in her glasses. She may have another surgery to try to straighten her eyes--but the gains from this potential procedure would most likely be minimal optically, and more for cosmetic reasons.

After our appointment, I took the girls to a well-loved playground. I've filmed E here before. It's covered in small pebbles, and the wooden play structure has lots of holes, large steps, and ladders to climb on. I've had to guard Elena very closely in the past. E is taller and stronger now--but also just better able to use her body. Look at her go!!

Here come the KiddieGaits

2011-07-12T12:01:00.000-07:00

Elena got a new pair of braces!

These are called KiddieGaits. They are new to us. Our orthotist thinks they will be great for Elena, b/c they are supposed to encourage a few things that her regular DAFOs do not:

1. Pressure is on the shin, encouraging a straight-leg posture (rather than a crouch, which is a problem for E)
2. While still a rigid brace, there is a little room for movement of the foot (a small amount of dorsiflexion, plantarflexion, inversion and eversion of the foot hopefully means a stronger ankle for Elena)
3. This brace is COOLER--not suffocating plastic
4. Elena can wear short socks!! (check out these pompoms!)

These are also in 'standard sizes', meaning that they are not custom-made. I assume this means they are cheaper to manufacture, and are more easily transferable/reusable for another child.

VID--FIRST WALK

Elena's reaction to them were that they felt "different" but she liked them. The weird feeling she got was due to the pressure on the shin. She did say immediately that they were cooler to wear (it was nearly 100 degrees outside). I noticed two things right away:

1. While her legs are definitely straighter, instead of crouching, she "bends over" at the waist slightly. My guess is this is b/c her hip flexors are tight? I figure with more experience in these braces, this will be less noticeable.

2. She stands more obviously on her dominant (left) leg, and positions herself with her right leg behind her (straight leg, but with only the right toe resting on the ground). We've seen this many a time with the DAFOs, but her weight-bearing preference is very apparent. I also think this will get better, but we'll have to work on it A LOT (weight bearing on the right). She can do it, but it's not her natural stance.

Peach Picking

2011-07-12T12:00:00.000-07:00

Grandma and Grandpa came to visit--so we went Peach Picking at an orchard close by.

They had a ladder; both Elena and Vivian scaled up to pick peaches. Vivian, mainly, wanted to run around and kept asking me if she could eat one (they were pretty rock solid). I finally told her she could. She ate into a baseball of a peach, and LOVED IT.

Viv running--man, I never get tired of seeing this.

Wagon ride!

Summertime at the pool, with some independence

2011-07-05T19:21:00.000-07:00

It was a gorgeous day today, so we all went to the pool! I brought a camera this time, to try to capture some of Elena's progress at the water's edge.

She can get into the pool by herself! Another Goal reached!

When it comes to getting out of the pool, though, Elena is very hesistant to take the last step onto the deck (and off the handrail). That's pretty understandable, given the lack of support, a cold, shivering body, stepping up, and hard concrete. But I'm sure we'll get there.

I called early in the summer about swim lessons. Ideally, I'd love Elena to take group lessons, b/c she loves peers and learns well from other kids as an example. Unfortunately, there are very few instructors here that are comfortable with E in their group class, as she is very unsafe around the pool (meaning, little confidence she can ambulate to the edge, stop, sit, etc) and they don't typically allow floatation devices during lessons (of course). I was a little disappointed, but not offended. This summer we're going to focus on fun, friends, and familiarity with the pool, and I'm going to look into private lessons at the indoor warm water pool later in the year.

Fourth of July Weekend at Lake Louisa

2011-07-04T18:52:00.000-07:00

Happy 4th!

We started off our long weekend with an invite to a family friend's lake house. I wasn't sure what to expect...there was supposed to be games (all on the beach), swimming, heat, sun, boating?, and hopefully Vivian taking a nap so we could enjoy the lake for a whole day.

We had a great time. It was a (relatively) relaxing time for Jason and I, which we rarely have.

Elena and Vivian both took part in a few games--but there were lots of (able-bodied) kids, and the games mainly were race/speed oriented. In one game, the coordinator was gracious enough to include E in the 5-yr old category (there were only a total of three kids) in a dress-up race. Elena needed help, and she hadn't gotten dressed (everyone had some help with the grass skirts) by the time everyone had finished. But you know what? When she was walking (no braces, swim shoes, and holding Jason's hand) EVERYONE was cheering and clapping. And we were all proud. And E got a medal, which she was very happy about. No one at the event knew us, and everyone was very supportive, including all the kids.

We played and swam on the beach, which the kids loved and I did not (I do not particularly like swimming in lakes). They found snails and we made sandcastles.

We ate a great lunch, and both Vivian and Elena (and Jason and Grandpa) took naps. Then we went on a BOAT. Vivian was SO EXCITED!! But not about the lifejackets...

E loved going FAST!

Viv preferred cruising in the front

Captain Jerry taking us on a cruise

Elena "chillin' out"

My girls before/at dinner: they helped shuck corn, and were excited to "eat on the couch" (b/c that's not allowed at home)

The day was lovely. Thank you so much to our hosts, Jerry and Arlene. Our whole family loved the adventure, the lounge time, the food, and the hospitality!

Trail-a-bike

2011-06-30T19:50:00.001-07:00

I've been thinking how I can get E on a bike around our neighborhood. As I mentioned before, we live in a very hilly area, and taking E on a bike ride is not trivial--it either involves a car ride to a remote (flat) site, or a lot of pushing/awkward bending over on my part.

I saw a trail-a-bike/tag-along bike in an advertisement. My first thought was, "that's perfect! E could practice pedaling, and learn to bike with me until she's strong enough to do it on her own!" and my second thought was "does that seat have enough support? Does she need a seat belt? How will I work that into the seat? What if she gets tired and forgets to hang on?" I don't want to realize she needs help until I'm dragging her on the ground behind me (b/c her feet will have to be strapped to the pedals).

Well, I called a couple of bike shops and asked if we could test-ride one. I insisted we needed to go outside, with turns (not just sitting on it), and a few bumps. I brought our helmets and some velcro cable ties to keep E's feet in the pedals (they didn't work that well...I have a few ideas for the next run).

Here's our first try-sorry for the shakiness, our sales guy was a little jerky in the camera movements:

What you can't hear is me asking Elena "Are you okay? Do you feel safe? Are you secure?" and Elena is humming, and then answers me "THIS IS AWESOME!"

SOLD.

It's Happening

2011-06-30T18:21:00.000-07:00

I took off work early to take Elena to test out a new bike (more on that later). I insisted that we needed to be able to try it out in the store, or behind the store--b/c we had concerns (related to E's CP) that the bike might not be a good fit.

On the way to the store--in the f'ing car--E asks me, sincerely,

"Will I always have cerebral palsy?"

My eyes get REAL BIG.

"Is this something you want to talk about right now?"

"YES."

"I'd rather talk about this next to you, not in the front seat."

I'm thinking, please please please NOT NOW. Let me look at you and give you that look that I love you and things will be fine. But she kept on pressuring me. Look--I don't lie to Elena. When she asks if shots/surgery hurts, I say yes. Better to be honest so she believes me when the time is truly important.

I sighed. "Well Elena...the answer is yes. But you are learning more every day--"

"WHY CAN'T IT BE SOMETHING I HAVE FOR A LITTLE WHILE AND THEN GET BETTER?! WHY DO I HAVE TO HAVE IT ALL THE TIME?"

She is WAILING, Sobbing! I can barely drive the car. I'm thinking, I need to PULL OVER RIGHT NOW and help her get it together. But I don't know what to say. She is carrying on, I can't even understand her words, but she is seriously upset about this-and I'm pretty sure she doesn't quite understand the whole situation. I'm holding back tears, feeling like I'm unraveling, and thinking I have GOT TO PULL IT TOGETHER.

I get to a parking spot by the bike shop. E has calmed down some. It's super hot outside. I get her out of the seat, and hold her in the driver's seat with me.

"Elena, are you alright?"

"Yeah. It's hard sometimes."

My heart hurts. How do I do this???

"I will help you do whatever it is you want to do. This is just one little part of you, and I love the whole you--everyone does. I'm sorry if I upset you."

"It is upsetting--" she is talking so low and weak now, talking into my shirt.

"I'm sorry I upset you. I never want to make you sad," as I hug her tightly and hold her hair, "But I can't change this." GULP. BREATHE. "I can help you, and you learn new things every day. I love you always, in all ways. You do know that, right?"

"I know," as she buries her face in my chest. We stay there for a few seconds.

"How about that bike?" I ask.

"Well, I better wipe off this wet face then."

We both laugh. And pick up the pieces of ourselves, while shedding off a little of that everything-will-be-okay facade, that I think both of us harbor a little bit each day. Even though the weight is excruciating, and the reality of her disability "awakening" very raw--and real--now, I'd rather chip at her veil of normalcy than have it slapped in her face later. This year is going to be difficult sometimes. I just hope I say the right things.

Water Safety (Mom Panic)

2011-06-29T11:42:00.000-07:00

I think it's a well-known fact in my family that I plan for the worst-case scenario...and sometimes, I do get fixated on it. Overall I think I do an okay job at balancing risk and Real Life, regarding Elena. But water has me spooked.

Fall hazards (and head/other bodily injury) aside, the pool can be a dangerous place for us. All of Elena's peers (that we know) can swim. I believe E will be able to swim one day--she does love the water. She is proud that she can swim in her swim vest. She swims doggie-paddle style, with me reminder her about "fish hands" (closed fingers) from time to time. She moves her legs as if she's crawling, more or less. Mostly I just let her swim the way she wants.

Last week she saw a friend's dad throwing her friend in the water--sort of a little toss-up, and the little girl was laughing. Elena wanted to try it. I tossed her a little--seriously, maybe a foot away from me, lifting her waist out of the water--enough of her body was out so that when I let go, she went completely under the water. Elena LOVES putting her face in the water, that isn't an issue.

But when her whole body went underwater, she froze (toothpick-style), and waited (while breathing in water) for the swim vest to bring her to the surface. When she was up, she gasped and choked, was very scared, and finally started moving her limbs as I grabbed her. It never occurred to her to swim or make motions with her limbs to get out from underwater, despite knowing she wasn't breathing air.

It didn't take long, probably not even a few seconds. But the fact that she was barely underwater, and had this problem, makes me extremely scared. What if someone throws her, like a normal kid, and she goes under FURTHER? What if she falls in the pool? Don't typically developing kids have the instinct to wrangle their arms underwater if they're in trouble (even if they can't swim)?

Elena is a smart cookie, so I think we can teach her this. Maybe this was a rookie mistake? Do all kids do this? Needless to say I had nightmares about E going underwater (all dreams ended okay, or else I'd still be a wreck). We're supposed to go on a boat this weekend. NOW--E's swim vest in NOT a life vest (which E WILL be wearing on the boat)--still, I will have an iron grip on my kids.

Anyone care to weigh in on this??

PT Recap: Same stuff, with progress

2011-06-22T07:33:00.003-07:00

Here's some new vids of E at PT:

Obstacle Course: E needs to take small, controlled steps and then go uphill.

Obstacle Course: Down steps (going for step-through), and slalom.

Moving Backwards: Real progress here!

Walking on Mats/Stop: Controlled stepping over uneven surfaces and co-contraction to stop.

Even Hips: We're trying to get Elena to equalize her hip stance when standing or walking. Here she needs to lift up the hip/leg that isn't on the platform.

Stepping Backwards: Using a ball helps stabilize E, but also helps her realize to stand up tall while moving backwards (otherwise the ball is left behind).

Ambitious Summer: Here we go

2011-06-22T07:33:00.001-07:00

Our "Ambitious Summer" plan involves a lot of things--therapy, more independence, activity, social interaction, and one huge one--FREE WEEKENDS, to do family time, or travel, or NOTHING. This is a big deal, b/c up until now, Elena's only free day was Sunday, and that was mainly spent getting ready for the school week.

E still has therapy 4x/week (2x Feldenkrais, 1x PT, 1x Hippotherapy). We try to make it to the neighborhood pool 1x week (typically with friends), and E has library time and community time (local happenings, like the Whole Foods Kids Club or library concerts/shows) and park playtime. We have our Fantastic Nanny Annette, as well as our facilitator S, and another helping hand or two (more on that later) to get the kids out and about and crazy fun.

Last weekend was Father's Day: Elena's present was to make dinner. I was going to do a separate post about it, but I forgot, so I'm just going to post a few pics here.

Taking the Order at "Elena's Cafe" (menu was included)

Chef at Work (she did the most of the cutting, spreading, and all the assembly)

We tried to let her carry the tray, but E's not quite up to that task yet, so she got some delivery help from Viv and I.

Dinner Smooches for the Best Dad!

Thursday we went to the pool (Dinner at the Pool night). Both girls were so excited about the pool! I tried to see if Elena could get in the pool by herself. I strategically placed two deck chairs as hand holds, and with me close by, she walked from our table to the rail, and holding on with both hands, she went down the steps into the pool BY HERSELF! She swam a ton (she looked tired!) in her swim vest. When it was time to get out, she was unsuccessful getting out by herself. She needed assistance due to fatigue, weight of the water, shivering from being cold, or any combination of those and she exited holding my hand to a chair (and warm towel) right by the pool. A+!

This weekend we had friends over for dinner and movie (Finding Nemo), and Saturday we went to the Splayground with another friend--and saw TONS of other people there! The Splayground had lots of kids--but with the Beach Walker, E had a great time. The other kids were curious, the other parents loved it and asked questions, and everyone had a great time.

(I will have to raise (raze?) the Beach Walker, as it needs to be a little taller. I'm working a new version in my head--one that comes apart in two pieces, to both better fit in the car and to be easier to "size up". Hopefully that will be done by the end of the summer.)

Sunday we went for a bike ride in our neighborhood (HILLS EVERYWHERE) in E's Pink Cruiser trike. I don't have any pictures, b/c downhill it was me running after her (and slowing her down the hills by holding the seat back), and pushing her uphill (ONLY if she was also pedaling--no free rides here!). We went to feed the geese--both kids loved it, and it was a nice short ride before it got too hot. My major observations are that Elena can really engage that trike--even on the hills, although she's not strong enough to do them herself right now. I also taught her how to operate the hand brake. The tension on it is very high, and her little hand can just barely span the handlebar and the brake, nevermind having the strength to actually squeeze it. She did do it once, but at the expense of losing control of the bike (Mom at the ready, so no worries). (I do have to work out a different pedal arrangement (same shown in the link)--this one is cumbersome and she needs more support on the right side.) E was VERY proud of herself--and, more importantly for me, this trip didn't involve packing bikes in a car. We'll be doing this a lot this summer, I think. I'm also contemplating this kind of a arrangement...

The Summer of No Carrying

2011-06-11T17:17:00.000-07:00

I have several Ambitious Summer plans...one of them is to stop carrying Elena. In all honesty, we do it often, in certain situations--steps and stairs being the most common ones. We live in a three story house, and the steps outside do not have a handrail.

During the school year, we have been in a rush, and Elena is NOT a morning person. We would have had to wake her up a minimum of 30 minutes early to attempt to have her do all her step/stair transitions herself. Quite simply, that was not a good option.

Well, since we don't have to rush to get to a bus anymore--now's the time. The Summer of No Carrying means when the people involve Jason or myself, Elena will NOT be carried AT ALL (ideally other caregivers will do the same, but I'm not going to insist on that). No matter how tired she is, no matter the weather, no matter the footwear--Elena will move her own feet to get from point A to point B. She can hold hands, use crutches, use rails, etc. but she must move her own feet (or scoot, or crawl, depending on the situation). I typically bank in an extra 30 minutes for "getting out of the house" time, if E is going to do all the transitions herself.

I sort of sprung this on her yesterday. We had talked about it before, but in the rush of kindergarten "graduation", she forgot that being a First Grader meant we instituted the No Carrying Act. Today (day after the last day of school) was our first day.

She went down the steps in the morning herself--scooted down on her bottom (which is fine) to play before the rest of us got downstairs. We went out for a morning activity, and she held one hand and used one crutch to go down the steps outside. When coming home, she opted to go through the basement as the steps have a handrail, and opted for the other hand held. We had a flash thunderstorm before Feldenkrais today, and again she opted to go through the basement, one hand held and then got to the car herself (flat concrete). One hand held and one crutch used as we crossed the street. Same thing on the way home. Going to bed, there was some whining about how she didn't like the No Carrying Situation (I have always carried her up the stairs to bed) but she didn't complain long, and we just went up for bedtime.

I noticed immediately that after just one day, her weight transfer going up the stairs has improved--she leans forward more and pushes more with her legs (rather than pulling herself up with her arms). Practice makes perfect, no?

It'll be a challenge for Elena, both mentally and physically to adjust to this. I LOVE IT. It is MUCH easier on me to hold her hand than to carry her--she's not necessarily heavy, but she is long and her tone makes it awkward to comfortably hold her weight when doing stairs.

Wee Walk 2011

2011-06-04T10:57:00.001-07:00

We try to make the annual UVA Walk for Kids (Children's Hospital Fundraiser) every year. There are always tons of great volunteers for this great cause, and they are really encouraging. Last year, E did the 1/4 mile Wee Walk for the first time EVER. It took her a long time (45 minutes), from start to finish; she was not at all proficient with her crutches, and it was really hot. This year Elena was excited to "run her "marathon" to help babies", as she called it.

We got there a little early, so we played some games--I carried E so she wouldn't get too tired before her big walk.

Beach Ball

Soccer

Then we went back to the shade for some water, and a Team Doodle cheer!

Mommy, Viv and E from Team Doodle

We started off strong. Our goal was to "keep moving", trying not to stop. We did have a few very brief stops along the way, mainly for sips of water.

Viv took off a few times

Almost halfway

Finishing Strong!

Awesome job E!! Not only did she finish her Wee Walk with a personal best time OF 13 MINUTES(!!), but she also had energy for a bounce house afterwards--and managed to run a few steps, several times--and jump afterwards (once) in just her socks!

If you're in C'ville, check for E on the news tonight!
-by popular demand, here is the TV spot--she's just in it at the end.

Daisy Camping

2011-05-31T17:37:00.000-07:00

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

Busch Gardens

2011-05-23T18:00:00.000-07:00

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

Festhausian

E and Viv doing the Polka

White Baronesses

Bumper Cars (E got it!!)

Kites

Strawberry Picking

2011-05-22T18:14:00.001-07:00

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!

Overcoming Barriers (OCB)

2011-05-16T06:19:00.000-07:00

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!!

6 YEARS OLD

2011-05-02T04:13:00.001-07:00

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

EXHAUSTED!!
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!

Upright Bike

2011-04-17T18:23:00.001-07:00

Our PT Theresa let us borrow her daughter's bike with training wheels. We've tried it a few times at therapy--it was a little challenging at first.

But--after raising the seat, and adding a few velcro straps to the pedals--VOILA!

SHE LOVED IT!! The bike frame is a little too small for her. No matter--E was very proud of herself, biking solo through the puddles (we've had tons of rain lately) and up "hills' and over "cracks", and over a bridge (this trail is pretty flat overall). She still gets frustrated if she gets stuck; she sometimes forgets the mantra of "up and around" with the pedaling motion, and once she almost tipped over, despite the stability the training wheels provide. We tend to guard her closely, to give her a teeny push if needed--to ensure a successful ride. We'll definitely be doing this again!

Picture Recap

2011-04-16T16:49:00.001-07:00

We've had a lot going on these days. In no particular order, here are some highlights!

Posing for Grandpa

$0.05 cent cone day!

Viv refused to sit still for the picture

Decorating an Easter Bag before the Hunt

Hunting (we're slow; E uses one crutch to walk; she picks up eggs with the other hand

Got to hold a real bunny

Bunny face

The Faun

2011-04-11T17:47:00.001-07:00

I had the pleasure last weekend of attending a play. Now, let me be honest...when I get a break, or a chance to unwind, typically I want popcorn/bubblegum/gossip rags/sleep/mindless Netflix/sports--the last thing I want to do is deep thinking.

I read an article about Gregg Mozgala last year (or maybe later than that, I can't remember). He's an actor/writer/performer, and he has cerebral palsy like Elena. The article was, in essence, how Gregg's physical control of his body--gait, balance--was transformed by a ballet instructor who mentored him. Naturally, I immediately tried to find his contact information so I could write him about his experience, and see if he had any pearls of wisdom for me. No luck.

Through the Facebook grapevine, a few weeks ago I saw that he had a new website up--complete with upcoming performances. And one was in Northern Virginia--close enough to make the drive. I bought two tickets.

Diagnosis of a Faun

(I'm really tired here...hope i don't mess this recap up too badly)

Created by Tamar Rogoff, this piece investigates healing through science and art. Set (more or less) in present day, the play begins in the forest home of the Faun. A Ballerina enters the forest, capturing the Faun's attention--but during her dance, she falls and tears her tendon. The rest of the piece is set in and around a hospital, with doctors trying to heal the Ballerina. The Faun is also studied by the doctors as an example of how modern medicine would address his alignment/gait. The actors explore the juxtaposition between reality/fantasy, doctor/patient, human/beast, love/loss, empathy of looking at the whole person/stoicism of treating an acute injury. Or, something like that.

There are four players in this piece; Gregg stands out for many reasons--wearing only a loincloth, and being the only mythical creature being two obvious ones. Maybe the other theatergoers were watching the actors equally--but my focus was on Gregg and his movements. He started the play on a rock structure, at least three feet off the ground, with staggered rock steps leading up to the uneven platform. He moved all around the space; running, jumping, leaping, starting, stopping, getting up from the floor and back down again, forwards, backwards. His gait is imperfect; he has an obvious CP gait. His knees buckle in slightly; he appears to have tibial and femoral anteversion, like E. Several times during the piece I see his legs pulsing, either from fatigue or clonus. He can put both feet flat on the floor--but it seems that he has to think to do it--every time. He stands frequently with his weight on one leg, flat; the other, toes curled under, dragging slightly behind. So familiar.

I also saw a man. A grown man, independent and brave; a powerful, masculine, sexy, talented, strong man. A man, who went through the aches, pains, failures, successes, and mistakes that every person goes through while becoming a dancer. An individual who had to develop trust with a partner. Just...a guy, a performer, an artist, who happens to have CP.

My father and I got the opportunity to talk to him after the show. I hoped that we would...I wasn't really sure what to say, but it related to how he was able to move like he did. To me, he never stopped moving like a guy who had CP; but he moved wonderfully, and in a way that I hope and pray E will one day. He mentioned that growing up, all this therapists, teachers, doctors--everyone--was trying to get him to move like other people. And, why not; that's the best way to move for proper body alignment--and that was his only example. All the focus was therapy, exercise, repetition, try harder, relax, etc. He said the big breakthrough for him (in the beginning of his dance training, he said just thinking about stepping made him fall "all the time--ALL THE TIME") was putting the focus on the chest, the midline, the breath. He studied Alexander Technique, Yoga (I think), and through dance--found a way to better connect with how he moved his body. I said that sounded like a very mature concept--which he agreed.

While I'm not going to stop E's normal therapy schedule--PT, CME, sports, dance, {insert what she wants to do here}, this concept sounds a lot like Feldenkrais and Yoga. Focus, flexibility, strength, from the breath, from the core.

Don't ask me how you get an almost 6-yr old to absorb all that...but it's something I'll try to foster as E gets older, as best I can.

Thanks to Tamar and the cast and crew for a fantastic, intimate show. And although you've probably heard this many times before--Gregg, you are a fantastic inspiration. Thank you.

A Feldenkrais Update

2011-04-03T18:10:00.001-07:00

We did a little bit of Feldenkrais last year. Then there was a big break--partially because we were busy, partially because it's expensive, and partially because I wasn't sure if it was worth it. I thought our practitioner "Mr. Keith" was good, but I wasn't sure if that's where we should spend our time and money.

We decided to revisit Feldenkrais right before and right after E's lengthening surgery last November.

And we're still doing it.

WE'RE COMMITTED.

It's not like some magic switch...but I feel like our "regular" PT (a mix of CME and traditional PT) and Feldenkrais, post-lengthening, really have come together in this "perfect storm", where E's some sort of super sponge and new things are happening all the time. We do F'krais 2x/week (Mondays and Saturdays). Elena loves her time with Mr. Keith. And while she doesn't come out of each session magically running around as if she didn't have CP--we see changes. So does Keith.

If you're not sure what a F'krais session looks like, Keith prepared these videos. It's great commentary, and every time I see something like this...I'm reminded of a little girl, who could barely stay in a sitting position, and who stood literally on her (right) ankle--instead of the bottom of her foot.

Ball Toss

Standing

As always, thanks Mr. Keith!

SIX

2011-04-01T13:35:00.000-07:00

Well Doodle Readers, the day is coming...

Elena will be 6 years old on April 30th! My little 3 lb, 5 oz preemie is turning into a little 32 lb 38" (ish) 6-year old! (YES E is TINY TINY.)

If you want to send E a card, SHE LOVES MAIL and is a great little reader (we can't spell between us parents either, b/c she can figure out what we're saying). If you'd like to send E a birthday card, or birthday drawing, or a picture, she would LOVE IT.

Contact me at

cpmom2009 AT yahoo DOT com

for mailing info. As always, thanks for reading!

Out Of Breath

2011-03-22T09:41:00.000-07:00

I'll elaborate later. E now loves to

RUN

and is enamored with

JUMPING ROPE (even though she's not too good at it yet)

more text later (cause I'm at work!)

The Ski Doodle

2011-02-28T04:29:00.001-08:00

This past weekend we all went to Massanutten in Harrisonburg, VA. Elena went adaptive skiing--this was a new experience for all of us, as none of us were really sure what to expect.

E had been super excited all week--to the point of exhausting herself. She'd also been sick all last week, so her energy/patience/stamina were down...I was a little worried about our trip. But--everyone had a GREAT time!

Snow girls

Waiting for Skis/boots

We were referred to this resort b/c the ski instructor was the husband of one of our "subsitute" PTs. Mr. Mark was AWESOME! He was very encouraging to Elena, and she immediately took to him.

E and Mr. Mark on the way to the lift

Mr. Mark helped Elena ski, having her be as independent (and successful) as possible. She would stand up as best she could--Mark having her bear weight as long as she was in control of her body. E is a "four-track" skier; she has "outriggers", which are like lofstrand crutches with runners on the bottom--and a pick on the back (as a brake) in addition to her skis. She also had something called a "trombone" on her skis--a bracket attachment to allow her skis to slide, but preventing them from coming too far apart or crossing over one another. Note she can stand up on skis when stationary. She also skied independently (under close supervision) for a few feet (less than 10 feet, I think) which was really fantastic (I didn't get to see it; it was on the flat part at the top of the hill).

E made it to the bottom of the bunny hill!

On the lift to the bigger hill! I thought she would be scared of the lift...it is kind of monstrous. She loved it. She said she wasn't scared at all!

E goes down the bigger hill. This is a long video--taken about halfway through the hill, where she nearly fell over. It's a pretty long ride!

E went down 3-4 times on Saturday. Mr. Mark said that was pretty age-appropriate, regardless of ability. We all went to the condo, ate lunch, and napped. E was worn out.

The next day was the Independence Cup--a Race Day for anyone who had completed an adaptive skiing program. We just happened to be lucky with our choice of weekend; Elena was very excited to race! It was wonderful to see the other skiers--some in wheelchairs, some were blind skiers; we even saw some familiar faces from our therapy center. Elena was the youngest skier at The Cup; she was also the smallest. Undaunted, she was psyched and loved the encouraging crowd!

As a bonus--Mr. Mark brought little skis for Vivian, whose only desire was to go on the ski lift with the big kids. While that was a no-go, she did get to wear her skis and was VERY proud of herself!

Just Like Sissy

Getting ready for the race!

Here is one of E's timed runs--they are moving pretty darn fast! Check out E's grin at the end--she is LOVING IT!

At the end of E's races, Viv was out of patience--so we headed home before the awards ceremony. We were sad to miss it. Mr. Mark said he had a medal for Elena--E is so proud of herself! I'll get a picture and post it.

Overall, a great weekend--a wonderful resort, a great occasion, and amazing instruction and staff. We'll definitely be back!

Week(s) in Review

2011-02-16T19:51:00.000-08:00

I am running out of energy these days...not sure why, but I am just tapped out at night. Things are going well--better than well, they're great! I'm just tired...so without much text, here's what's been going on lately (in no particular order).

Uncle Andy around for the weekend--and he brought his music set up. The kids had loads of fun singing and being musicians.

PT updates! E goes up a step BY HERSELF!

Bicycle "Sit Ups"--her first time quickly "physically problem solving"

Kindergarten Winter Concert: E stood up most of the time! She did GREAT!

E at mommy's work--better than ever, with cones

And she even helped me pick them up!

And Vivian looks up to E more than ever. PICS HERE

Psych Graduation

2011-02-10T17:37:00.000-08:00

The Handy Family has Left the (Psych) building!

We graduated! We've been seeing a (student) psychologist since about August 2010, specifically about Elena's nighttime issues (which aren't a problem now, by the way). We have come a long, long way.

Here's the recap.

Sometime between Elena starting to talk (2.5 years) and 4 years of age, she started freaking out at bedtime. I don't know what caused it--but it didn't take long before it was hours of straight-up screaming before bedtime, and an average of 2 hours screaming during the night. IT. WAS. AWFUL. Jason and I fought about what was going on--he thought it was due to brain damage, and may need medication; he wanted a sleep specialist. I thought it was a parenting problem--but we didn't know what we were doing wrong, and didn't know how to fix it. E's pediatrician (and other main docs) agreed with me. I didn't want to medicate Elena. After one last very very bad night, where just about all of us were crying, losing our minds, I called professionals the next day. Eight of them, hoping just one would call me back.

Two did. I chose the UVA school of education, where we'd be seeing a student psychologist and be observed by an invisible team via camera. I chose them for two reasons--one, they were cheap; two, they were close to work. We saw them weekly, or once every two weeks. Sometimes it was all of us; sometimes it was just a parent+Elena, and then sometimes just me.

We saw results, literally, after one month. I couldn't believe it. We had spent close to two years dreading every nightfall.

What took me so long? I mean, I accept--and seek--a LOT of help raising my kids. I guess a lot of that help revolved around things I wasn't trained for--like physical therapy, modern medicine, sign language, nursing, orthoses, assistive devices, etc. But for some reason, getting help with "the basics of parenting"--putting your child to bed--took forever. I felt like I was admitting I was a failure.

Well, in case my experience can help any of you, here's what I've learned. Keep in mind that during this nighttime troublefest/rehabilitation, Elena had 2 rounds of Botox, three surgeries (eyes, SDR, and PERCS), countless hours of therapy, public school, and birth of a sibling. In no particular order, here is what helped us:

1. If you have a family problem, try to make a family solution. Have a Family Meeting, where you all address the problem, and everyone has input to create a Family Plan. You stick to the plan, and refer to it often.

2. Elena's a smart girl; I need to ask her opinion on family matters.

3. Elena is a big sister and I should treat her like one. I was trying to include her in family activities, but in doing so, I wasn't making special "Elena time". We have "Big Girl Time" after Vivian goes to bed; it makes E feel special, and differentiates the two kids.

4. Having a third party (psychologist) really took the pressure off us parents. It made us all listen to someone else; if E had a problem with the plan, it was with the plan or the psychologist, NOT ME.

5. We used the Ferber Method. We tried this before, and failed miserably. Here's what we did--starting this regimen during the middle of the night wake-ups (this was all part of our family plan):
--if E wakes up, we walk in and ask what's going on. If she's not sick/needing to use the bathroom/(insert good reason for being up here), we tell her our comfort phrase "I love you. I know you can do this, I know you can go back to sleep." LEAVE. Don't tell them you'll be back.
--wait 3 minutes. If she's crying, repeat.
--wait 5 minutes. If she's crying, repeat.
--wait 10 minutes. If she's crying, repeat.
--repeat every 10 minutes until she's asleep.

Some nights, E would crawl out of bed repeatedly (she can't get back in). I'd calmly carry her back to bed, and say the phrase, and keep going.

Literally, this never took more than 40 minutes. After dealing with screaming/tantrums literally for hours EVERY NIGHT for two years, 40 minutes was NOTHING. It didn't take long until the night wakings stopped; then we tackled the actual going to bed part in the same way.

Today, I put her in bed, tuck her in, say goodnight and leave. I get ready for bed myself, and by the time I come back to read her a book, she's asleep.

I am really proud of us. Elena is proud of herself, and of me. Karen and UVA Curry School--I can't thank you enough.

Kindergarten, in a perfect package

2011-02-07T19:08:00.001-08:00

I used to have serious anxiety regarding Elena's public schooling. I was a wreck before she started Bright Stars, a public pre-K program; at the time E was only 3 years old, and I felt like that was too much for such a young child. The teacher was well-recommended, but they had never had a physically challenged child like E. It was PHENOMENAL.

The following year, a pre-K program popped up in our home district. I felt like it was important for E to be around peers that might possibly be in her future classes; but, the teacher was new, the school terrain was more challenging. E did GREAT.

I worried about kindergarten, with the ever-widening gross motor gap and the budding self-awareness of E's differences--and things are literally about as perfect as they can get. Despite what amounted to a head-on collision with the Special Needs Coordinator at E's kindergarten IEP, E's public school experience has literally been a dream-come-true.

Elena's impairment is strictly physical. Since the IEP is based on educational need, technically her disability does not mean she has an issue with learning or mastering the current curriculum. In the beginning (first year of pre-K) E had a pretty significant speech impediment/delay, she automatically qualified for special ed services (placement in pre-K, Speech Therapy and Physical Therapy during every school week). The speech delay was the qualifier for her placement. That speech delay resolved itself in nearly 5 months after she started school.

So, our key words for the following year(s) were 1: ACCESS to the curriculum, and 2: SAFE inclusion with her peers, all while fostering independence and social engagement. I was worried about E's ability to socialize with her peer group--prior to school, interaction with other children was minimal due to her physical limitations. She spent most of her time with her family, her doctors, and her therapists. Turns out E's a little social butterfly--her teachers have told me point-blank "do NOT worry about Elena's social skills", with a smile.

Elena has qualified for physical therapy services in school based on the goal of safe access/inclusion to her educational environment. Realistic goals, which she needs or needed help/training, such as: taking off her jacket and hanging up her bookbag; getting in and out of a seated position; PE class; getting to and from the bathroom; carrying school supplies; getting to classes in different rooms in a timely manner; navigating the playground; navigating the lunchroom. In kindergarten, there is one (part-time?) aide, the teacher, and 20 kids. If Elena falls, or is late, or has issues with a given activity, she'd be a major disruption to the normal class. And she used to fall often (post-PERCS, she's moves much better). E's IEP team decided in the beginning of the kindergarten year that it would be the best solution if E were to have her own full-time aide.

I was floored. Seriously? I was worried that the aide might prevent E from typical interaction with her peers--but that was actually just the opposite. Angela used to be a special needs teacher and practices "non-attachment"--which basically means even though she's there for E, she's just about invisible. She is AMAZING. E's access and inclusion is more than I ever hoped for, and that's due to her aide, her PT for pushing the idea of her aide, and her teacher(s) and her STUDENT PEERS.

The other kids are really great. I've been told teasing comes any day now; kindergarten, maybe a little sooner or later. E hasn't come home (yet) crying about what someone said or did to her. As a parent of a special needs kid, I guess that reality is more of a "when" than an "if". But her classmates are extremely wonderful. This whole mix has been incredible.

I know E's physical disability doesn't impair her ability to learn. So, technically, I guess that they could yank all her services at any time. I'm so grateful and thankful for what we've received. Apparently, once you have an IEP, your child qualifies for services for the next two years. Not sure what those services will be--in an ideal world, E would be eventually weaned off all special services as she grows more independent.

Here's what I do know: our public school experience has been amazingly positive. Elena's teachers have welcomed her with open arms, and her peers treat her like everyone else. We have been granted services every year E's been in school so far (3 years), including the Adaptive Physical Education (APE) program. All her educators want to include her as much as possible, and we are all working together to have Elena be as included and independent as possible.

It really takes a village...and mine is seriously awesome.

Sister Walk

2011-01-31T18:22:00.000-08:00

This was Elena's idea! She wanted to hold hands with Viv as they left Mr. Keith's office (they LOOOOOOVE him!).

This is the first time I've seen Elena walking and holding hands with anyone that wasn't an adult--or with an adult involved. I almost cried.

So proud of these two!

Mom Solo

2011-01-27T18:04:00.000-08:00

Jason is gone for close to three weeks, out of the country for work. We all miss him terribly. When he's here, he's gone a lot of the time, as he's in night school until 2012--so, basically, it's The Mommy Show a lot of the time.

With him gone, it's been tougher than usual. Don't get me wrong--I have help. Friends, occasionally my parents, and of course our Fantastic Nanny Annette. But I am more tired than usual--E's appointment schedule, my appointment schedule, my work, and other stuff is *ahem* a challenge right now.

But look...it's all worth it. We made this video last night to send to Daddy.

Yup. Those are my girls. Both in bunny slippers, and bare feet. YUP. BOTH OF THEM!!

Jimmy at the Gym: Obstacle Courses

2011-01-27T17:47:00.000-08:00

Well, it's winter here. That means that for practical reasons, Jimmy Time can't be outside. (For those of you who don't know, Jimmy is a student at JMU who has mentored Elena for the past 3-4 months. WE LOVE HIM. Most of their work has been to build confidence while moving/playing outside.) It's cold out now, and bundling E up makes her movements cumbersome--not to mention the colder weather worsens her spasticity.

So I approached our gym (which, I have no time to go to myself these days) and asked them if I could have space inside. I need a big, open space, where E doesn't have a handhold. They were happy to oblige. Jimmy, as her aide, gets in the door for free (granted, only to work with E--but big ups to ACAC gym!). We also have all the gym equipment at our disposal.

So, we've been putting together obstacle courses to see what she could do. We've been doing this for 3 weeks now, and E is AWESOME. I don't have videos of everything, and they are pretty long. It takes E about 3-6 minutes to complete each course. Typically, I make up a story, and have E go through courses to make it through the story. For instance: E is on a quest to Save The Baby. She has to make 5 baby saves (earning a tattoo after each save), and if after she completes them, she is the Queen of the Gym and gets to wear her crown (the one from YOU, MELISSA!).

Here's one vid. Highlights are: successful step-overs, side-stepping, wide-stepping, getting up from the floor, attempt at a crab walk, etc. etc. Other videos have successful jumping, attempts at step-ups/step-downs, cone weaving, etc.

E gets better at this every week. Building confidence, having fun, using practical movement. It's great. And last week, E was sweating!! Guess when that's happened before? NEVER!

The Year of Thinking Dangerously

2011-01-16T05:14:00.001-08:00

Remember when I wrote my New Year's Goals? Well, apparently, that wasn't aggressive enough. I am "gettin' served", as E liked to say. She's all over the place--I even "caught" her walking from the bathroom at Daisy Scouts CARRYING both of her crutches in ONE HAND as she walked with huge steps into the meeting room--because she "didn't feel like wearing them".

It helps that I made the 2011 goals, b/c now I've been trying them to see where we are. Well...she can carry heavy ceramic plates (no food on them yet) now and keep them upright. She can lift her foot entirely out of the bathtub (while I hold her other hand-I've never tried that before). She goes up the indoor steps with me close, but has only needed me to catch her twice. She moved backwards AND sideways without falling over the weekend.

So, given that we're only a few weeks into January, I think my 2011 goals aren't thinking BIG enough. Or independent enough. So, I'm just going to run with this, and THINK BIG. Allow myself to think dangerously.

So, here are some additional goals for 2011:

*1. E will walk TO and FROM the bus by herself on a school day. The steps outside our house are unevenly spaced, and have no handrail. She can do these with crutches or without. This means going from outside the door, down the steps, across the driveway, and INTO the bus without help (and reverse, coming home). Currently we carry her--mostly b/c we are running late, but also b/c we have doubts regarding her safety/ability to do all the steps--and in a timely manner, especially those on the bus b/c they are so large.

*2. Elena will RUN. And be able to STOP, without a handhold, and without crutches. I don't care what it looks like.

*3. Elena will pivot on one foot (or two feet, simultaneously). Either (or both) sides. Currently she switches directions/turns by veering in a circle.

*4. E will try a jump shot--with a ball, and land without falling down.

*5. E will attend a dance class without a facilitator. While wearing her shoes and braces, she'll keep up (mostly, anyway) with the class. If she falls, she'll get up and keep going.

Ridiculously dangerous thinking? E WILL JUMP ROPE. E WILL CATCH A FRISBEE. E WILL WALK A DOG--THAT PULLS THE LEASH. E WILL TAKE A SHOWER--STANDING. E WILL HIT A PITCHED (NOT TEE'D) BALL WITH A BAT, AND ROUND THE BASES. E WILL ROLLER (OR ICE) SKATE.

Crazy, I know...but who knows, "Danger" might be her middle name this year...

Daisy Scouts

2011-01-13T17:41:00.002-08:00

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!

Year 2011 Goals

2011-01-02T20:12:00.001-08:00

Happy New Year!

I'm exhausted, so I'm going to get right to it. Here are my gross motor (and possibly "other") goals for E in 2011, in no particular order:

1. E will be able to carry items at home--specifically, food to the dinner table. I'm talking plates with food on them, and not have them tip over. This includes drinks--in open cups. I don't plan on filling anything to the brim, but I do expect her not to spill what is in her cup or on her plate the majority of the time. Right now carrying any food receptacle (with food in it) is a guaranteed mess.

2. E will make some progress getting out of the bathtub. Specifically, I am hoping that with one hand held, she will be able to lift one leg at a time over the edge of the tub. This will take lots of practice, as she'll be barefoot, cold, and on a slippery surface. My back will thank me.

3. E will be able to put her own AFOs on, with supervision. Currently she can take them off, but we haven't worked on putting them on.

4. E will successfully navigate a step without assistance, and without crutches. Currently she initiates going up and down, but her clearance of the step isn't always successful and neither is the weight transfer.

5. E will be able to put on, take off, and carry a backpack. (She may already be able to do this).

6. I want Elena to make some progress navigating our entire yard. We live on a very steep front hill (with *ahem* perilously large rocks a the bottom of said hill), a flat side yard, and we have stone steps in the backyard that lead to the garage level. She can navigate going out the back door of the house, down the deck, to the flat side yard. We haven't really tried anything else yet. Since the other steps don't have a handrail, she would have to be able to successfully do multiple steps with her crutches (she has done 3-4 at a time, but never 10+).

7. 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. By in and out, I mean sitting on the side of the pool out of the water as the start and end point. In order to not scrape her knees, I think this means she'll have to stand up using the handrail and walk up the steps.

8. Elena will answer questions regarding her disability when asked by peers. We are working on this, and so far it's actually going very well. Most questions come from kids, when I am around--and they ask me, not Elena. Right now, the most common question is "why do you use those things (crutches)?" and E says "these help me walk". Normally that suffices and everyone is smiley and satisfied.

9. Elena will be able to step side-to-side. She can do this, but it takes a lot of effort.

10. Elena will be able to move backwards independently in some fashion.

And Goals for me:

1. Get in better shape. I know this is a common New Year's goal. I am not in bad shape, but I need to be stronger. Elena is getting bigger, and I still need to carry/lift her. I plan on some "event" (nothing massive--a city 5K walk/run, for instance) once a month as a fitness goal. In the absence of a local race/event, I will drink water every day (don't laugh--I am chronically dehydrated, and I hate drinking water).

2. Learn how to use Skype. I did set up an account, so I'm part-way there!

3. Make a Yoga With E short video. Elena and I talk about it a lot.

4. Cook more at home--ideally, with the kids helping me. With Jason in school, it's The Mommy Show a lot of the time, and it's easier on our wallets and bodies if I cook more often. And healthy, home-cooked meals in the freezer is like time in a bottle, which is what every parent needs!

5. Vivian Time. Viv is getting more attention these days, which is great! I want to have a regular parent+Vivian time (normally, E gets this during Viv's nap and before Viv's bedtime).

Back to Where We Were...Only BETTER

2010-12-29T07:04:00.000-08:00

We've been doing PT in her AFOs and shoes since her casts came off on December 10th. Normally, she wears her sneakers only for CME exercises at PT--but her ortho said she'd be too weak in the ankles/calves to do that sort of exercise.

Her AFOs do give her extra stability. She is better able to stay down in her AFOs since her lengthening procedure, and she isn't "teetering" on her toes as much. She can stay standing much better, and her emerging gait pattern (in AFOs and shoes, anyway) is either flat-footed or heel-toe, as opposed to toe-heel(ish) before surgery.

And here's a new one--she's been initiating step-ups (and step-downs) without a handhold. Weight transfer without hand support has been a difficult transition, but she HAS done a step up independently--once--on a 10cm step. So, it's coming, which is very exciting!

But here's another new one--our normal "frog pose"-to-stand, which we do every night at stretches. But NOW, it's slow, controlled, and she can DO IT INDEPENDENTLY, bare-footed!! Right now, she can stand up (and stay there) about 20% of the time bare-footed, and 80% of the time when wearing her shoes and braces. Awesome.

E is more independent and stable than ever. We have started encouraging her to walk barefoot when she can, around the house. She is very hesitant to take her hands off walls, and tends to prefer leaning on objects (furniture, tables) that are low to the ground so she is often bent over while barefoot and upright. We want her to "cruise" while standing up tall; right now the only way this really happens is if I am behind her, walking on my knees, holding her hips. We are a slow pair, and Elena is just getting the idea that when walking barefoot, her standing leg should be straight/tall while her moving leg bends. But, the good news (great news, actually) is that she looks pretty good while she does it. We're a long way from cruising tall or walking barefoot independently, but this is a great start.

Christmas 2010

2010-12-26T09:34:00.001-08:00

Happy Holidays to Everyone out there!

I want to give a super big Merry Christmas to all our Doodle Letter Exchangers--love the pictures in this year's crop of mail!

This holiday season we spent celebrating all December long. Writing letters, making ornaments, tea with Mrs. Claus (Solo Mom Status, with a room full of crazy kids running around and Elena and Vivian in different directions--not my best showing), making a gingerbread house, making Christmas cookies, watching The Nutcracker (or, as Vivian calls it, The Dancing Cracker--the Baryshnikov/Kirkland video edition)--it was a wonderful month of celebration, togetherness, and creativity.

And it was a very busy time, especially regarding Elena. She had a rough patch of moving around post-op/post-casts, but overall, she was a great patient. Between that, Christmas, family, work, and home, there wasn't much time to blog.

Here's some highlights:

Visiting the Clauses (Vivian refused to sit without Nana)

Jason's Holiday Work Party--this is the best picture I got

Sledding after our first snow

E and Viv at the "after nutcracker suite" gathering with the Charlottesville Ballet

E with the Sugar Plum Fairy, The Nutcracker Prince, and Clara

Christmas Morning--E and Viv play nicely (!) together (!!) with the "Dollhouse Castle" from Santa

Viv's Flute--thanks for that loud gift, Grandma and Grandpa

Grandma and Grandpa have better pics, so I'll put them here once I get (find) them.

Walking, Interrupted

2010-12-20T11:44:00.000-08:00

I have to admit, I'm frustrated.

I figured E would have some weakness, soreness, and fatigue easier after her surgery/casts were removed. I figured it would last a while, with the worst of it over after a week or so.

I also figured after her STELLAR PT performance the same day as her cast removal, that she'd be sore.

What I didn't expect is that Elena would REFUSE TO MOVE. Refuse to stand up tall. Refuse to walk. WHY?

I figured it was mainly due to soreness that she felt the day after PT. I was nice, sympathetic, and I carried her more often. Five days later, we were barely making any progress. Is this normal? I really wish someone would have prepared me.

E is a lot more verbal/antagonistic toward moving with me than others, particularly Theresa. Still, after she's reached her limit (about ~40 minutes of PT) literally she is DONE. She'll sob, cry, hobble, literally become a cripple after an amazing 40 minutes of movement. I am very confused.

*updated 12/26; she is moving better now, but still reaches her limits before the end of a PT session. After about 30 minutes rest or so (or proper motivation, like a mini-Slurpee or something) she's moving great again. I guess this is fatigue? I'm still not sure. Technically, she's been walking for less than 2 weeks post-casts, so, maybe it's early to be frustrated?

2010 Review of New Year's Goals

2010-12-15T08:46:00.000-08:00

I wrote a post in January this year regarding what I'd love E to accomplish, in terms of motor function, sociability, and independence. Here's the review:

--E will be completely potty trained. Well, we're still on the mostly part. Mainly due to surgery weakness, at this point. Elena can walk to the bathroom, independently undress and dress (even when wearing a dress), wipe herself, flush the toilet and wash hands and exit the bathroom. I trust her to do this if the bathroom trip only involves pee; a bowel movement may require help. Currently, she gets intense supervision b/c she's still getting used to her "new legs" post-op. Overall, I consider this goal a pass.

--E will make some progress to get her clothes on herself. CHECK. E can dress and undress herself, including socks (we have to pull them all the way on, but at least she gets them on), pants, shirts, some dresses, and jackets. We don't make her to it before school b/c we're pressed for time in the morning, and dressing takes a while. She can undress more quickly than dress.

--E will be able to ambulate barefoot at the pool without scraping the tops of her feet into a bloody mess. CHECK!! We did this last Sunday, at our first pool visit post-op! She looked GREAT. She walked with one crutch and one hand. It took us 10 minutes to actually get all the way across the deck, but she did it, and her feet looked GREAT and FLAT. YAY!

--E will be able to move backwards in some way. We didn't really make progress on this one. I wasn't trying too hard. She can back up when against something, but she could do that for a while. No independent backwards movements--well, maybe a little with her crutches.

--Elena will jump, and get some air under her feet, without holding on to something. CHECK! She jumped AND landed a while back, with her braces and AFOs. Most of the time her jumping is while holding on to something, though.

--E will be able to go up and downstairs herself, with supervision. CHECK. With close supervision (not touching). We haven't worked on this lately due to her lengthening operation, but we'll get back on it once she's stronger.

--Elena will be able to hold hands with a friend and walk a little. CHECK! Last time we did this (that I remember, anyway) was at the Pumpkin Patch with our friends, The Teasters.

And, well...goals for me, not so much...

--Keep up with this blog. CHECK.
--Commit to doing CME exercises with E at home. Once a week, for a good 20+minute session with block equipment. NOPE. I did it for a while, but got lazy.
--Spend some one-on-one time with Vivian. CHECK. Not as much as I want, but, I do get to spend some time with my cute little tornado.
--Try to find some time for myself. HAH. Does soccer count? If so, then CHECK.

I've been working on next year in my head. I think it's going to be a Very Good Year.

Casts Off!

2010-12-10T19:56:00.000-08:00

E got her casts off today!

In a nutshell...the results are amazing. Fantastic. INCREDIBLE. No, she's not jumping around or doing the moonwalk--but her range of motion is pretty darn good, and she isn't as weak as I thought she would be after being in casts for three weeks.

Here's a video a half hour before casts are removed:

Waiting for the saw

Ta-Da!!

INCISIONS

After her feet were (finally) washed, the doc checked her out and then we all stood there while E walked away with her crutches (and AFOs and shoes). E's feet were DOWN. Solid. I was shocked. I think we all were, a little.

E had a PT appointment a few hours later. The doc said we should keep her AFOs on for PT for a few weeks, b/c he doesn't want too much strain on her ankles until she's a bit stronger. No prob. Theresa sort of "took stock" where E was--and wow, was she impressed. We all were!

Squat-to-stand (very little help here)--E has noticed she doesn't "teeter" as much, as her feet can stay on the ground while she stands up.

Walking

Slalom Walking (WOW!)

Walking back to the other room, at the end of PT (HEEL STRIKE!! WOOOOO!)

And then walking to the car with her crutches--HEEL STRIKE, RIGHT AND LEFT!!

I was ELATED. This was just a few hours after getting her casts off...I mean, what will she be like after months of therapy? This is like a brand new start. I feel so strongly that 2011 is OUR YEAR--as in, walking. Carrying a liquid in a cup? Moving backwards? Stepping out of the bathtub? Being able to walk (in any way) at the pool? Getting on the bus herself? Picking up and putting away toys? Hey, maybe even RUNNING. I don't want to get ahead of myself, but seriously, she looks THAT GOOD to me. Such a small change in her structure makes a GIGANTIC difference!!!

Don't worry Mom...I got this

2010-12-05T20:10:00.001-08:00

Well, E's had her casts on for over two weeks--and she's doing awesome. She hardly complains about them, even though I know they are not comfortable. She's using her crutches now, and cruising around the house (ADD VID HERE). She's also taking some independent steps across the room.

She doesn't walk with her right foot "flat"--she never has, really. But sometimes I see the "swing" of her step, where her foot is straight at the knee before she puts her foot on the ground--that's new. I'm trying not to get too excited about it, though...I know there will be weakness post-surgery/post-casting.

And she's a lot more confident every day. I had the both kids on my own a lot last week, at appointments--which was scary, as Vivian doesn't stay with me/listen very well, and E needs close supervision too. Well, I carried Viv and tried to "spot" E as we walked a good 200 feet into a building, on cobblestone, while E used her crutches, and it was freezing outside. I was worried about her; I didn't want her to fall.

"Mom, you take Vivian. I got this."

She sure did, too; she walked the whole way, certain steps (even in her casts), and never teetered. It's been like that since last Wednesday. We're also back to our bedtime routine, and even though E wants me close, she is settling in well to our successful regimen. Things are just great!

This week is huge: E has her eye appointment (we've known she needs a new prescription for months, but we couldn't get in any sooner--and the doc is worth the wait), and she gets her casts off.

Post-Op: 9 days

2010-11-27T17:42:00.000-08:00

Well, E has been making slow and steady progress. I was starting to get discouraged...E's been crawling and getting into chairs, but really up until today, she hasn't done much standing; zero walking, and no cruising. Well, today's different!

Yesterday E tried the treadmill. We spent maybe 5 minutes on it, and most of that was just trying to stand up tall.

Today, we did 20 solid minutes of walking and standing, where I was moving her legs slowly, and aiming for strikethrough with her right foot (this stride is typically very short) and it was well-tolerated. Elena was definitely gripping the handlebars tightly, and complained that "her hands hurt"--but she was also bearing weight in her feet, which was the goal. I stopped when she said she was done.

Later on that day, we went to work; E can't use her crutches yet, and we don't have a walker. Cue The Beach Walker! E even ran a little bit (on the "toes" of her casts). We got a "coffee" and then headed off to Feldenkrais.

E was pretty warmed up (and silly) by the time we got there, but she had a great time with Mr. Keith. We haven't been to F'krais for about a year. I like the way he's focusing his efforts on different parts of her body since her feet are in casts (today was mainly her obliques, I think--their recruitment for walking).

We had some friends over for dinner; all the kids played, and then we got ready for bed. Tonight is E's first night with casts, without Valium; so far, so good.

Post-Op: Day 2, 3

2010-11-22T11:50:00.000-08:00

Day 2:

E has been on Valium 2x day; one dose in the morning, one dose before bed. She has been sleeping well. This early afternoon we went on a stroller ride to investigate Santa at the Omni Hotel. E was excited! The trip lasted about 2.5 hours; E (and Vivian) started melting down before we left. Both were tired; I think E was a little sore.

E got Tylenol, then took a nap.

E can sit in almost any position, to color or play, for a long time now.

She crawled a little, and we can carry her normally now (hands below her rear instead of "cradle" carry). Passive range of motion exercises show she can easily extend her legs, nearly fully, without pain with her ankles flexed in her casts.

Day 3:

E is crawling and can get into a sitting position on a low stool by herself--this requires some weight bearing on her feet, but she's doing it on the "toes" of her casts and strong-arming the rest on a nearby surface. I can undress her for toileting by resting her feet ever so slightly on the floor while she holds on to my neck (she is holding most of her weight off the floor). E tolerated some ball exercises (small circles while she was sitting on the ball, hands either to the sides or not holding on at all). She can do her own range of motion movements (while lying down, bring knee to chest, then back down with her leg straight on the floor) but her control going "down" is poor (I hold her leg so she won't "bang it" on the ground). She can do full bridges with her pelvis, which also requires weight bearing on the heels in her casts.

We tried partial standing; she was nervous to put any weight on her right leg. She can be placed in a half-kneel position on either leg, without pain, but I haven't had her get in that position independently.

She is still sleeping in bed with me, b/c she has trouble repositioning herself during the night, but only b/c the pillow between her legs is too big for her to move. I am hesitant to put her in her own bed until I know she can get out of bed (bear weight on her feet enough to get to the ground slowly) safely. The "sleeping with a parent" issue is a big one for us, b/c we've had sleep issues for a while and *just recently* (pre-surgery) were making such excellent progress. E is very rational regarding her sleep arrangement--she knows as soon as she's more able, she'll be in her own bed. She seems to be very calm about this (we'll see what actually happens!!).

Post-Op: Day 1

2010-11-20T13:20:00.000-08:00

Day 1.

E is well rested, and all kinds of talking and laughing. She does not like her legs to be straightened. My goal was to try to have her sit in a chair and play today, and see if she could be carried more traditionally (upright, with my hands under her rear, with her arms around my neck) rather than a basket carry (her neck and back and her knees held up by my arms with her folded inbetween). Both of these were successful, although E preferred the basket (or "cradle") carry. She was also able to sit up, with her knees supported by a cushion underneath, and watch TV. We colored a lot, and she ate well. Well, a lot of popsicles, anyway.

I even got to do a "dry run bath" where I propped her on the floor, with her feet up, and pretended I was washing her--to see how much pressure I could put on her legs, to see if I could turn her hips, and test her passive range of motion. Even sore, I could tell that she could keep her legs straighter than before the surgery.

She slept all night.

Pre-Op

2010-11-20T12:35:00.000-08:00

We had a motto for today:

"Let's Do This."

E was ready. We brought her favorite buddy, Mr. Pink, with us--he was having a procedure too.

She was fine up until the anesthesiologist carried her away. She thought I might go with her to the procedure room, but that isn't customary, and it was never really talked about. I'm sure she cried, but I never heard it. My heart broke just a little when I saw my brave girl go through the double doors, but I honestly believe this is a very good decision. My nerves were okay; this procedure didn't freak me out hardly at all--SDR sure did, though. Everything after that seems to be a cakewalk. ;)

An hour and a half later, I got called in to the recovery room. I was a little surprised; I didn't expect E to be crying so much. She was in a stupor, given her sedation; I also know from previous experience, she has a hard time with feeling woozy. She whined and cried constantly that her throat hurt (intubation during surgery), and her feet hurt to move. She had prickmarks down the back of her yellow-stained legs (from percutaneous lengthening of the hamstrings), and her feet were casted in a 90 degree angle at the ankle (after traditional lengthening of the gastrocs), encased in hot pink. The nurse gave her some morphine and fentanyl; she quieted down. She also gave her an oxygen tube, which she taped to blow gently in her face (oxygen saturation drops after patients get morphine). After a minute or two, E's eyes popped open. She grabbed the tube. She finally spoke something intelligible:

"That thing is annoying."

WELL, if there was any doubt I'd see my typically E that afternoon, not anymore.

I worried how I would get her home, given her pain; she had to ride in a carseat to get home, and I had to move her several times. She never once complained. I think she just wanted to get home.

Once there, we propped her on the couch and put a pillow under her knees. She rested; we watched some movies, but mainly I gave her liquids as tolerated and rubbed her stomach. Using the bathroom was difficult, as it was a two-person job. Annette and I traded duties with the kids--one of the priorities was making sure squirmy Vivian didn't crawl all over E. I gave Elena tylenol+codeine--which she'd had trouble with in the past--and after one bout of vomiting, we gave up on it. She tolerates Valium, so she's on that every 8-10 hours as needed.

Later in the evening, she was ravenous; she hadn't eaten anything all day. After inhaling pizza (I didn't think that was a good idea, but oh well), fritos, pretzels, and a bunch of other things, she seemed more herself.

She slept all night the first night.

Overall, A LOT EASIER than I expected.

Surgery Eve

2010-11-20T12:19:00.000-08:00

E was knew the surgery was happening. Sometimes she would get a little anxious, and tell me "Mom, I don't want to do the surgery" (normally she'd say that during stretches, if she said it at all). I told her after she was all healed after surgery, stretches would be easier than they are now. "Well, then...I want to do it." Ever the practical one.

I told E we would paint her nails (a "mani-pedi") before her surgery. What I didn't tell her was I was going to take her to a REAL salon! E was tickled.

They had "a chair with a sink". She couldn't sit on the chair, so we improvised during her "foot soak".

E getting a "sugar scrub" on her legs--smelled so good!

The Toes: Hot Pink with Pink Sparkles

Now the Manicure

The Fingers: Mermaid with Gold Sparkles

Thank you so much Madison at Moxie, for the fantastic VIP treatment! Her nails look FAB! (And all the doctors and nurses noticed--immediately!)

A Day in Gym

2010-11-20T12:03:00.000-08:00

I took the afternoon off, to get some vital errands done before E's surgery the following day. One thing I really wanted to see was E in her gym class.

Her kindergarten class has PE 4 days a week. She has Adapted PE once a week (I think)-but even before being assessed for that, her gym teachers have always tried to have her involved as much as possible. E loves PE, and talks about her PE teachers almost every day.

The school PT suggested E get a gait trainer--it has been AWESOME!

E listening to the instructions for the PE game

It lets E try to stand alone, move in any direction, run, and use her arms. She fatigues easily. It's also obvious that lateral movement is not intuitive for her (moving sideways or stopping sideways)--but I can tell she LOVES having the chance to move like this.

What I most enjoyed watching was 1) how well E's aide is there when E needs her, yet she's practically invisible in terms of the kids doing the given PE activity and 2) how GREAT E's classmates are with her. They give her a wide berth, but also try to give her a chance to kick balls, throw balls, be in line...just be a NORMAL KID. It makes me tear up. Even though she's different, she's very much included. *snif*

A little anxious...Surgery is THURSDAY

2010-11-15T18:55:00.000-08:00

Elena is having a tendon lengthening procedure in three days.

We knew this was coming-- I guess with kids with SDCP, it's more of a "when" than an "if" type of situation. I understand parents' and therapists' opinions about not wanting invasive procedures done...but I feel incredibly strong that her quality of movement cannot be addressed with different types of "stretching" therapy.

SDR was a great choice for us. I still feel that way--E's spasticity has decreased tremendously. That has been a life-changer. But living with spasticity like she did for the first four years of her life made its mark--her calf muscles/achilles tendon are short, and her hamstrings as well. She has femoral and tibial inversion (CONFIRM THIS IS THE RIGHT NAME), where her bones have twisted--it's not bad enough to warrant a surgery for this right away (hopefully ever), but more proper weight-bearing will only help her structure--and should be done before age 9. She also has almost a "rocker foot", where the bones in the arch of her feet have broken down due to improper weight bearing (on the midfoot, as opposed to the heel), and this will eventually cause pain.

Elena will have percutaneous lengthening of the hamstrings (both sides, more on the right) and standard lengthening of the calf (exact location HERE) consisting of approx. 2 cm incision on each leg. She'll be casted below the knee ("walking" casts) for three weeks.

My expectations are that Elena will be able to stand up tall (after regaining her strength), hopefully with her weight evenly distributed on her feet (as opposed to her toes) and have a better foundation for balance.

We have several Feldenkrais sessions booked, to ease E into a new movement pattern during and after casting; we'll also continue her "normal" schedule as best we can (school, PT, scouts, Jimmy Time--unfortunately hippotherapy and yoga classes end this month) with a lot of holiday activity in the mix. An added PT session/week (CME) will hopefully happen early 2011.

Camp Holiday Trails

2010-11-06T19:02:00.000-07:00

Today we went to Special Needs Family Day Camp at Camp Holiday Trails. I wasn't sure what to expect...we had looked into other camps around the area over the summer, but the terrain seemed IMPOSSIBLE. I spoke to the guy in charge, and he made sure I knew that this camp would work with Elena. Camp Holiday Trails is a camp for people with special health needs--not just special needs kids. So they know.

Elena was the only kid there with a motor impairment. Well, let me rephrase...one other kid had mild CP, but he could walk and run. All the other children had some sort of behavioral issue (siblings, of which there were a few, not included). I have a hard time believing the ratio I saw today: physical disability (only):behavioral disability was 1:15 or so. The camp invites all special needs kids out for today, and most of the kids were on the autism spectrum. I have a feeling that the autism community is a tighter knit group, so that when there is an event, more of them come? I don't know. I kept thinking, "where are my crutch kids?" or wheelchair-ers...then again, when parents of kids who have gross motor difficulties hear "campground/woods/hills/hiking", they're probably thinking "NO WAY". I wish this wasn't the case.

Anyway, all the kids were pretty good. In the morning, WHEW that room was LOUD! Then the counselors rounded up the kids for art in the downstairs room--so the parents got to be ALONE, with OTHER ADULTS THAT UNDERSTOOD THEIR SITUATION. How nice! It was really great. We all got in a circle and introduced ourselves and our kids. Some parents I thought were going to cry. Others were so happy to be there, to be a strong source for others. It was fantastic, even though it was only for a short while. We also tossed around some questions to the group--what a great source of information!

E and Z playing

The kids came back, we had snack, and then ventured outside for climbing on the rock wall. YUP. A climbing wall. A great activity for building confidence and encouraging other kids--most of the kids really enjoyed it. I spoke to a rockstar of a counselor, Stephen, about the possibility of E going to "climb".

"Of course she can!" he says.

I'm not so sure...I didn't think she would be able to right herself in the harness in free space. Stephen went and got another harness--Elena was the only kid to wear a full-body harness instead of one for just the lower body/groin. She was very excited. I was nervous. I asked Stephen to go with her. He was glad to do so. Super Mike was on belay; I don't think he's really shown in the video, but he certainly got a workout today.

Stephen and Elena are "fist-pump" ready for the climb

Super Mike testing E on belay

I thought she would make it to the first rubber chicken-but she was determined to make it to the top. WHY NOT? YOU GO, DOODLE!!

After that we had lunch, and then more playtime, and then off to the horses. Unfortunately we didn't get to ride--we did do a photo scavenger hunt, which was fantastic--but Viv started melting down before they could ride. We all came home and passed out--every one of us, including me.

Halloween 2010

2010-11-01T05:28:00.000-07:00

We love Halloween--E loves to dress up, and now that Vivian has discovered the mirror, she does too. I try to incorporate E's assistive devices into her costume...but that typically means handmade costumes. Sure, they're cute, and fun...but time isn't something I have a lot of these days. I did have a lot of coffee, though, so I managed to put E's costume together over a bunch of late nights.

We were kindly offered Viv's Bee costume (Thanks Mo!). I asked E what she wanted to go with it.

"MOM. I don't want to be a beehive--THAT'S BORING." E whines.
"Okay, can you think of anything else that goes with a bee?"
"NOT A BEEKEEPER. I won't be able to see."
"Okay, anything else?"

E starts to get excited. "How about...a bigger bee. I KNOW--a bigger bee that EATS the smaller bee!"

Well, I went on youtube and looked under "insect eating bee" and found a video. I did not preview the video first--so E and I simultaneously viewed some pretty gruesome footage of a praying mantis devouring a cute, fuzzy bumblebee. {shudder}

"THAT IS IT!" says E. Ummmm.....okay, I guess. ?

Our first party was Friday night, at the Children's Hospital Boo House. I had heard about this, but never made it in previous years. We had a great time--lots of crafts and games for kids, structured so everyone could play. Free dinner, and a trick-or-treat line with lots of UVA volunteers. Very cute and fun. E and Viv had a blast! I couldn't spend that much time taking pictures, but I have a few...

On Halloween, the girls refused to BOTH be happy and looking at the camera at the same time, but I tried...

Jack-o-cuties

Then, getting ready for Trick-or-Treating! We live at the top of a cul-de-sac hill. Our goal throughout the years has been for E to do the top 5 houses by herself--or as much as possible. When she used a walker, she could only do the flat parts (not very much). Last year, we had her to the driveways as much as possible, and the sidewalks up to the house doors; we pushed her in the stroller between houses. This year, she did almost all her trick-or-treating by herself! She did get carried down three steep driveways (but walked up them), and then carried home (up the hill) when she was done. But she went to at least 10 houses, as she went down the street! By herself! She only fell 3 times, and all of those were when she tried to take a shortcut through grassy areas (instead of pavement).

My Bee Vivian

E is a hungry Praying Mantis, sizing up her prey

In pursuit of candy!

Happy Halloween!

Vivian's 2nd Birthday Party

2010-10-25T19:12:00.001-07:00

I know this blog is about Elena, but I do have another child. My little miracle Vivian, who almost was born at 28 weeks--but made it to 38, after two hospitals and several doctors threw everything they could at me. She made it. What a shock--In many ways...I'd been on the verge of giving birth for so long, that when I did go into labor, from first contraction to birth was 20 minutes...I never made it out of the house. October 30th, Viv was born in the foyer, and our Fantastic Nanny Annette just about caught her--EMS arrived right before she was actually born. It was crazy, I tell you.

Happy Birthday, my little ball of entropy. We love you to pieces.

We threw her party a week early, to try to separate it from Halloween. I made a huge castle for the kids to play in--Vivian LOVED IT. Here are Vivian's Cardboard Castle highlights--all the party kids got homemade prince/princess/etc. capes (THANKS GRANDMA & CO)!

The Castle

Birthday Princess

I start leading the Cardboard Knights

Cardboard Knights

Making a pretend Feast

Minicupcake #1

Minicupcake #2, on the run

Tired Princess