Getting started...Card Exchange 2012!

If you're new to this blog, I organize a card exchange every year for Elena (aiming for a late December delivery)--she LOVES mail, and the exchange is a great way to remind E there are other kids out there like her.  Kids who wear braces, or wear glasses, use crutches/wheelchair/other devices, who have siblings, friends, go to school, etc. etc.--kids who might be different.

The typical card exchange involves a little letter telling E something about yourself, or your child (they can write part/all of the letter, or send a drawing or something) and a photo of you, your family, your child, or favorite pet, etc.  To get a letter in mail from this exchange is a great experience--to know that someone out there--a stranger--connects with you, values you and your story--it's simply fantastic. 

I certainly hope that everyone who has taken part in the exchange previously has enjoyed their letters--occasionally one is late, which is why I'm starting this early--IF you are a overseas follower of The Doodle, we'll need to get started on letters (I learned the hard way they can take a while!).  

If you are interested in a card exchange, 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 DON'T WORRY, 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.  And, maybe E's sister Vivian, b/c sometimes she likes to write letters too. 

*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.

Biking Weekend

Just a quick note--I took the girls out on a "bike ride" this weekend.

We've done this before, but this is the first time I've taken both kids out 1) where both kids were interested in pedaling a bike and 2) Elena's feet were NOT strapped to the pedals.  At PT, she's been working a bit (using the bike in this video) trying to put her feet down and back onto the pedals.  Theresa has also tipped the bike to try to encourage Elena to put her foot down to stop a fall.  E does it, but slowly--still this is all very good progress.

Today was the first time ever E's been on a bike outdoors without her feet strapped in, and the first time doing any kind of incline.  This one is very slight, but for Elena, it's definitely a challenge and I'm so very proud of her!

I also notice how Elena encourages Vivian--what a great big sis!  Up until this video, I couldn't get Vivian interested in actually pedaling a bike!

It's obvious to me that Elena needs a bigger bike frame.  Our PT says that kids with CP like Elena feel more comfortable on a bike where their legs stay more bent--but I think E's grown so much that this size bike is just too tiny.  She has been on larger bikes (just sitting on them, stationary) and I have to admit the fall from one of those bikes seems a bit daunting.  Elena has already fallen while riding a bike (twice, I believe), with her feet strapped in--and got right back up each time (with assistance).  It's our hope that with enough practice, E will learn when to keep her feet on the pedals and when to take them off to prevent a fall.  So far we are off to a slow--but very promising start!

Kayaking Weekend

Last weekend we went to visit our friends, the Andersons.  They invited us to go kayaking!  

Avery and Elena

I'll admit, I was very nervous.  Josephine wasn't worried; she said Avery took right to it, and she thought E would too.  While there are lots of similarities between Avery and Elena, sitting up straight with straight legs out in front--"long sit"--isn't something Elena does well.  I was concerned about 1) tipping out of the kayak--E can right herself in the water with a swim vest, but it might not be as automatic in cold lake water, 2) E's posture resulting in an unsuccessful kayak experience.  I still "engineer success" when I can for Elena, as I strongly believe it is one of the reasons she is excited to try new things.  

The car ride wasn't that bad; the girls read lots of books, and were ready to play with the Andersons when we got there.  All the kids played well together, ate some lunch, and then we went to a park--to "test out" the kayak.

The body of water was a small riverbed (creekbed?), and on that day, the water was maybe 1.5 feet deep.  Avery went first, while Elena and Vivian studied what she did.

The kayak had a "seat back" for back support.  Here is Elena, trying the kayak with a swim vest, her shoes/braces on, and the seat back.

Paddling isn't easy

With this combination, Elena was frustrated.  The seat back was in the way of her elbows when she tried to paddle, as was her swim vest.  Ditching the swim vest really wasn't an option, but we decided to try it in the creek b/c the danger was minimal, and we wanted to see what would happen with her paddling ability.

No vest, with seat back and shoes/braces

When we removed her vest, she still had issues with the seat back.  In this configuration, she couldn't manage to sit up and try paddling without resting against the back support.  So, we removed it--and her shoes/braces.

There she goes!

It's still a challenge for her to sit comfortably in the kayak while paddling--the tone in her legs makes it hard for them to be at rest--but this combination (no shoes/braces, no seat back) seemed to give her the best results.

Bonus Vivian!

Viv's a natural!

Then we were off to the Lake!

Viv and Brogan, buddies on the dock

The Kayak Team (one adult, one child) and the Paddleboat Team (one adult, up to 4 kids) ventured out onto the gorgeous lake.  Avery and Josephine went kayaking first, and I took the kids on the paddleboat while little Oliver stayed with Gabe on the dock.  E even helped propel the paddleboat!

One BIG feature of the Kayak Team was the tow line; the child kayak was tethered to the adult kayak by a thin cord.  This played a HUGE part in our success--the kids got to do the paddling, but ended up staying close to the parents and got the feel of moving around the lake.

Avery and Viv ready for paddleboating

E's ready to try it!

Gabe and Elena

What a view

Mom and Viv

Mom and Viv

Paddlin'

E and G circle the Paddleboat Crew--Ahoy!

Spectacular

It was a PERFECT day to be outside--and I'd have never have tried this on my own.  It was a fantastic experience for all of us--patient instruction, quiet water, beautiful weather, lovely scenery--an amazingly successful adventure!

After we finished up at the lake, we all stopped for dinner at a great local restaurant.  The kids get along  so beautifully...I wish we lived closer (it's a bit of a drive for a day trip).  

Thank you so much Andersons, we had such a great time!  

A DC Playdate

A few weeks back we made a whirlwind trip to DC to visit some friends.  Krista wrote me a message telling me she was closer to our area, and if I'd be interested in meeting her family--especially Hannah, one of her twin daughters who just happens to have CP.  We decided to meet at the Natural History Museum.

I decided to bring nothing but crutches for Elena.  Last time we were in DC we opted for E's wheelchair.  This time, we decided to drive into the city (not taking the Metro) and see how long the girls lasted.  Vivian was going without a nap, so we figured both kids would get tired before too long, and they would get back in the car and head home.

Another reason I wanted E to just try her crutches was to give some inspiration for Hannah; Krista said Hannah wasn't taking to hers too much, and maybe having Elena as an example might help.

It was really fun to meet up in the museum; here we were, some adults and a pile of kids (and E and Hannah take a lot of space).  It was just wonderful to be around other adults that "get it", in terms of mobility challenges and stuff like that.  Hannah, Isabelle, and Sammy are such wonderful company!  The kids took to each other right away--it was just adorable!

The kids' favorite place was the Discovery Room!

Skulls

Budding scientist?

Isabelle and my girls

Birdwatchers

Hannah and E

We ended up breaking for lunch in the lower level cafe.  That was really interesting--mainly b/c E and Hannah have some of the same table postures.  Sometimes I get annoyed at how Elena's hands seem to be in her food, or she's not paying attention to where her hands are, or she's slumping over the table.  I understand that Elena has a low-tone trunk (part of the classic spastic diplegia package), but it was very eye-opening to see Hannah at the table.  Both girls' forearms tend to be "heavy" and rest on the table in some way.  It was actually great--it helped me better understand how low muscle tone affects the usage of upper limbs.


After that we headed to the butterfly room!  All the kids *really* wanted a butterfly to land on them!

Fascinated kids!

They are both running out of steam...but still smiling

The butterflies loved Hannah!

Tired kids (Viv tried to nap on the floor right after this)

HUGE thanks to Krista and her family (including her mom) and to Jason (and the kids) for making this a huge success!

Shameless Plug: Model Search

More posts are upcoming (things have been busy before and after the start of school) and to be honest, I'm not even sure why I'm doing this...

I entered Elena in a model search.  We buy a lot of her clothes from this company, and I thought, "Hey!  Wouldn't it be nice to see E in that catalog/online ad?"--so I did it.

If you want to cast a vote for her (you can vote 1x/day), here is the link:

http://childrensplace.promo.eprize.com/model2012/:b=safari/?entry_id=6156#gallery

I'm not posting the picture here, b/c I'm not sure if I'm allowed to--it's E waiting for the bus on her first day of 2nd grade.

The Ride

A few days ago we went to Busch Gardens with our friends, the Rs.  Jason wasn't able to go on a weekday; we were lucky that Annette could come with us.  It was our last big "hurrah" before the start of school.

I expected a hot day, and since the park is expansive, I brought our double jogger stroller.  I figured both Elena and Vivian would be get tired.  I had decided beforehand that Elena wasn't going to wear a handicap bracelet (which would let her skip to the front of the line).  We found out the hard way (last year) that the h-cap status trumps the height requirement, so she would not be allowed on certain rides, even if she was tall enough.  If I had any reservations regarding Elena's safety on a ride, of course I wouldn't let her on it--but that's just not the case.  I figured the most important thing I could do was to have Elena conserve her energy by offering her a ride for most of the day.

I was in for a pretty big surprise.

For starters, once we arrived at the park and set up the stroller, I asked if the girls wanted a ride.  Viv hopped in.  Elena didn't.

"I'll walk."

So she did.  She walked the length of over a football field, in a crowd, up long and steep hills, until she wanted a short break.  Fierce.  Then she got out again, and walked some more!  When it came to the rides, Elena is tall enough to ride the next "tier" of attractions--which, I have to admit, is pretty cool.  And E is super adventurous, too.

E's choice:  Front row seat

Vivian loved riding with the big kids!

Riding the Balloons

The Rs know there way around the park extremely well, and knew how to time things *just right* so we would have short lines and entertainment during mealtimes.  The kids LOVED the shows!

Viv (4th from left) is spellbound

Elena rode as many "grown-up rides" as she could, with me or Annette by her side.  We waited in line together, she walked through the lines herself.  We went up and down steps and ramps to wait our turn.  We went through turnstyles (that was a challenge) and found our seats.  Elena tried to stop without using people as "handles", trying to not lean on them for support (and did a fantastic job).  Elena rode kiddie rides with Vivian, and Viv waited for Elena to catch up to her on playgrounds.  Annette and I tried to keep the kids cool and hydrated--and we even got to ride a few rides, too!!  (But I don't have pictures of them!)
 

Spray Ground.  I didn't want to get wet, but Viv and E wanted to play...so there you go.

E loved this (she's right of me in the pic) (Thanks Annette for getting this picture!)

Carousel Kids

Viv loves Elmo!

Big Bird

And you know what else?  Elena never lost her form.  She never crumpled in a heap on a chair, or fell over in a large seat that was made for bigger people.  She always sat up, no matter the time of day.  She was alert and focused.

Elena used her crutches to get to different rides within a reasonable radius--and other times, she just walked there without them.  There was a kiddie roller coaster in Sesame Place that Viv could ride with me  She was SO EXCITED!!

Viv's First Roller Coaster!

Elena waited in line with her friend A.  And for the first time EVER, she rode a big kid ride with a friend--NOT a grown-up.  They waited in line together--E even got in the car by herself.  

This is a big deal

I saw the roller coaster take off--and both of them looking at each other...just two friends, on an adventure.  The most ordinary thing in the world, right?  Not for us--it was extraordinary.  And that wasn't the only ride, either, that they rode together.  I almost cried.  

What a farewell to summer vacation.  To the R family, and Annette, thank you so so very much for making this day possible for our family!