Friday, November 23, 2012

Halloween recap (overdue)

Well, I lost track of time and then had a hard time locating my camera--but here it is! Rather than influence the kids' costumes this year, I gave them "free choice". Vivian had a hard time deciding between Spider-Man and a Cheeseburger. Finally she chose Spider-man. As soon as Elena heard that, she decided to be Dr. Octopus (from the 1960s cartoons).

The Inspiration
The Duo

We had a busy Halloween day planned...we were going to a neighborhood party immediately when Jason and I got home from work. It was very cold, but we figured we'd be back home to layer clothing under costumes and then trick-or-treating.

 Well...SURPRISE! We found out on arrival that the party was outside. Still, the kids had a great time running around, getting excited about candy, and seeing neighborhood friends. Then, E and Viv decided to go trick or treating with some friends--starting from the party (at the neighborhood clubhouse). This meant that I left Jason with the car and walked home, since I figured he would do a loop with the kids and then drive back.

SURPRISE AGAIN. I was stunned as Jason kept texting me--the kids were going strong, Elena was doing all the walking, and she had decided to trick-or-treat all the way home. THIS IS A HUGE DEAL. Our neighborhood is extremely hilly, and does not have streetlights or sidewalks. It was cold, the kids were not dressed very warmly, and I'm not even sure Jason had a flashlight (because our original plan was to come home first). Last year, Elena went to maybe 12 houses. It was very cold last year also, and we had agreed she could stay out as long as she was not expecting to get carried. This year, she doubled that, at least. She probably walked about a mile (counting to and from houses along the street), was cold, and ended the night up our hilly street, including going up our front steps, by herself. I was AMAZED! She was happy, very proud of herself, as she and Vivian rung our doorbell to surprise me with their last Trick-or-Treat of the night!

Tuesday, November 20, 2012

Holiday Card Exchange 2012!

***Repost*** (If you've already responded, details will be coming the following week!)

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.

Saturday, November 10, 2012

My Very Busy Vivian

Dear Vivian,

HAPPY FOURTH BIRTHDAY TO YOU, my little ball of entropy!

For your 4th birthday party, you chose the theme "Busytown" (Richard Scarry's Busytown).  We invited your friends and classmates (you are in preschool now!!) and everyone had a great time with the vehicles Mommy made, and playing in our little busy "town".  Thanks to Grandma and Grandpa for helping, and taking so many great pictures! (It was hard for me to choose just a few...)

Viv driving the Apple car

Stop Apple!

E's Lowly hat

Viv fills up J's ride

E in the convertible

Z in the Pickle car

E speeds down the road
E in the convertible

Z peering through the Apple car

A and Viv find the leaf pile

Happy Bday Girl

A and J

J drives the Banana car

S working the local store

E scooted all by herself

Viv convertible

Z liked to talk and drive

Too young to drive

E works the "gas pump"

M liked the animal noses

O bikes

M in the Delivery Truck

S drives the Tow Truck

Z in the Race Car

"Moms at the shop"

The Busy Birthday in action!

 Thanks to all our friends who came to celebrate Viv's birthday with us!  We had such a great time!

We celebrated with a little cupcake on your actual birthday.  Your birthday wish was that Mommy and Daddy would always be there to take care of you.  OF COURSE.  :)

Making her wish

Vivian, you are such a bright girl who lights up our lives.  You're inquisitive, mischievous, creative, imaginative, and funny.  You love your big sister with all your heart.

We love you to pieces,

Mommy, Daddy, and Elena

Tuesday, November 6, 2012

A Short Vacation

Well, long story short--we had to postpone a highly anticipated trip to Disney.  So, Jason and I decided to take the kids on a little short vacation just two hours away.  We took them to the Great Wolf Lodge!
Neither parent really knew what to expect except for a water park.  What we didn't expect was the child-centricity of the resort.  Elena and Vivian LOVED the size of it, the look of the lobby--and apparently tons of other families did too, b/c it was PACKED with kids.

There was a LOT to do at the Lodge--but we started with the water park.  Water always makes me very nervous, because neither E nor Vivian can independently swim without a life vest.  Couple that with a very large park and plenty of kids that are pushing/leaning/crowding certain areas--you get a very vigilant mother.  I would have taken lots of pictures/videos, but my camera wouldn't stay dry.

E and Viv started in the toddler area, which was cute and relatively calm.  My heart soars when I see Vivian here; she is so adventurous, proud of herself, and I marvel at how easily she gets around.  Elena is having a great time, but asks for my hands to climb the steps to the little slide.  Since we're all sort of cold, I oblige.  She goes down the slide sitting up very nicely, and quickly rights herself in the water once off the slide.  She doesn't pop up and walk/swim to do it again, although she'd like to--the act of exiting the slide into the pool of running water seems a bit much for her to process while putting her feet down, so it's slow going to do it again.  Both kids are loving it, and we're all happy.

Then we tried the bigger kid slides.  There is a huge climbing structure--mostly made of rope "rooms" and tunnels, with a few steps to separate sections.  Definitely NOT handicap-friendly.  We try it anyway--we are all very slow, and the rope hurts all of our feet except Vivian's.  Lots of kids pass us, and we are the only parents trying to go up this way--which means that there either must be another way up, or no other parents here have to escort their children on this slide.  We finally make it to the top--only one rider at a time.  I go first, and wait for Vivian.  She comes down BEAMING and immediately screams "AGAIN!" when I help her out of the slide.  E comes down next, twisting and turning, sitting up very well the whole way down--until she meets the "pool" part at the bottom of the slide, which surprises her and she flattens out, getting a faceful/mouthful of water.  I help her out, she is scared, and coughing, and doesn't want to try again.  I don't blame her, she seemed quite unhappily surprised at the ending of what was otherwise a great adventure.  We head to the lazy river.

Elena loves the lazy river.  She gets to swim, ride the current, try to avoid falling buckets of water and just is thoroughly enjoying herself.  I have to be vigilant, as lots of kids in rafts simply do not notice that their inflatables can come together and push E's little head under water or smush her face between the plastic--so I spend a lot of time pushing them away.  Lots of parents are doing this; kids on the rafts are oblivious.  E and Viv also love the wave pool.

The second day we did a lot of the same, but with two exceptions; we took E and Viv (separately) on the two-person big slide (on rafts) and it was a huge success, and Vivian had to leave early b/c she needed a nap.  So Jason and E stayed--for two and a half more hours.  That's a LONG time for E to be swimming!  Her love of the park was great--but the combination of her wearing her swim vest and the crotch strap made for some pretty serious chafing on her thighs.  No more pool for a while!

There is a challenge at the Lodge called MagicQuest; it's basically a scavenger hunt type game, where you have a magic wand with a memory chip.  You "find" things on your magic wand and activate movement around the hotel with a proximity sensor in your wand.  Basically, the kids carry and wave their wands around and stuff happens--magically!--and THEY LOVED IT.  It was a lot more fun that I expected--E had to walk around a lot (which she did) and Vivian even enjoyed it (it is aimed at reading-aged kids and above).  Elena typically walked with one crutch and held her magic wand with the other hand.  She got LOTS of stares and questions.  One young girl was so nice, polite, and just didn't get why Elena used her sticks even after we tried to answer her questions.  And then we got the "what's wrong with her" as we entered a crowded elevator of older kids--Jason and I answered in unison "NOTHING" and then Elena piped in that these were her crutches and she uses them to get around.  The girls that asked seemed satisfied, and ended up being quite nice.  My guess is most of these kids haven't ever seen (or noticed) anyone wearing AFOs, or using crutches, etc.  We notice that stuff all the time.

The kids also tried bowling for the first time!  They had 5-lb bowling balls and bumpers on the lanes.  Elena was tired, so she asked for help, which we gave her part of the time--she DID do it herself, though!  Very proud of both girls for hitting those pins!

Overall, my impressions of the Great Wolf Lodge are positive.  My big negative critique is the cost...the only thing "included" as a guest is water park access (everything else costs additional).  My huge positive review is the water park, especially the lifeguards.  They are EVERYWHERE, and they appeared very alert and responsible--it was quite impressive.

The best part of the trip was being together as a family, just the four of us.  Elena and Vivian got along beautifully; they both slept in the sofa bed together, and it was wonderful to witness the relationship between these two girls.  I'm such a lucky wife and mother.

Friday, November 2, 2012


Well, it seems like I'm out of my emotional rut.  WHEW.

In a nutshell, I've had to come to terms that I need to have a near-complete shift in my way of thinking all things Elena.  Basically, I've viewed E's movement patterns in terms of achieving her most "normal" gait/balance/posture/stance possible through her daily life--including planning what types of therapies/surgeries/equipment we need to make progress possible.  At this point, we're more-or-less in a holding pattern, or plateau.  And that feeling is new to me.   It doesn't mean I won't try to challenge Elena or help her learn to use her body better--it means that I need to live more in the now instead of the future.   Appreciate now, and realize that this probably isn't the best she'll ever move--but it might be, and we need to show Elena that this is okay.

This is okay.  It's just a pretty big mental shift.

The good news is that Elena really likes to get 'in the mix'--with her classmates, with her family, outdoors, you name it.  She's outgoing and adventurous, which makes giving her new motor challenges easy.  Our Fall Bucket List gives us all some inspiration!

Here are some of the things we've checked off our list lately!

Leaf Pile!

Leaf Fight!

Leaf Attack!

Determination:  Washington Park Edition