Monday, October 31, 2011

Halloween 2011

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.

Sunday, October 30, 2011

Vivian's 3rrrrd Birthday

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 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


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!

Monday, October 24, 2011

Pumpkin Patch 2011

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 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!


Corn Maze (actually, it's sorrel)

This was tougher than we 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!)!

Monday, October 17, 2011

Aquatic PT

(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!


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!

Monday, October 10, 2011

A note regarding Setbacks

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

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.

Sunday, October 9, 2011

Another Car Bomb

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."


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

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.