Ellie's Footsteps

The Girl's Got Moves!

2011-05-02T06:54:00.000-07:00

Oh, I'm so sorry for neglecting this blog! We are all doing very well....in fact, here's a look into how awesome Ellie's doing!

She performed in her first dance recital yesterday and she was BRILLIANT! Just look at her!

Vancouver, Take 2

2011-03-01T16:36:00.000-08:00

Ellie and I went on a little adventure last week! Or, at least, I tried to make it SEEM like a fun and exciting adventure….because not everyone would consider 6 doctor and therapist appointments in 2 days something to cheer about. But, if MOMMY makes it sound thrilling, then it MUST be, right? Yup. Uh huh.

Little Miss Jelly B’Ellie and I flew our way to Vancouver for a few days because we had 2 jam-packed days of SDR follow-up appointments. Again, can you believe it’s already been (over!) a year since her surgery? Crazy.

I was a bit nervous, travelling as a single parent, but thanks to all your prayers and love, it worked out fine. I have come to the conclusion that there are many, many good people in this world. Without their help, this trip would have been much tougher. So, the next time you see a frazzled mom trying to carry a 48-pound 5-year-old while attempting to unfold a stroller AND a walker, help her out. Just like so many strangers did for me!

On Day 1, we had 4 appointments:

*Radiology. Ellie needed x-rays of her hips. Thankfully, she does really well with x-rays. Because she has ‘em quite often. In fact, she thinks it’s pretty funny when mommy has to wear the “weird coat”.

WALKING her way over to the radiology department...

My life was made so much easier by BC Children's Hospital and all their waiting-room toys!

*Occupational Therapy. A few days before Ellie’s surgery last year, the OT conducted a test of Ellie’s fine motor skills. She then administered the same test last week, to see if there was any improvement. Ellie had a great time with this test because it involved her favorite things: markers, stickers and finger puppets! Unfortunately, I didn’t get the results back from the OT. However, I know that Ellie’s has improved greatly in this area, which is especially encouraging for school. There is LOTS of fine motor work required at school!

I think her head is going to explode: An ELMO finger puppet?! Too much happiness!

Ellie could color all day...

*Physical Therapy. Again, last year, before the surgery, the PT conducted a test to see where Ellie was at with her gross motor skills (walking, sitting, standing, etc). This test is a bit more laborious (ie: not nearly as fun) and LONG. It was one-and-a-half hours of intense testing, and Ellie was SPENT by the end of it! BUT, the PT compared some notes from last year and there was marked improvement across the board! He was especially impressed with her adductor muscles (thighs). Those were the tightest pre-SDR, and now they’re so much looser. That, of course, results in easier walking.

Waiting not-as-patiently-as-it-may-appear-in-this-picture for the therapist...

*Dr. Steinbok. It warmed my hear to see Dr. Steinbok again. He is SUCH a good and caring doctor. He was very impressed with Ellie’s progress. I asked him if Ellie was “where he thought she would be at this point post-op” and he said, “yes!” and added that she was probably doing BETTER than what he had hoped for. It was all very encouraging!

Emailing the Grandmas to tell them about her day...

And then emailing Daddy....that's my girl!

On Day 2, we had “only” 2 appointments:

*Dr. Beauchamp. He is the orthopedic surgeon. This was the appointment I was dreading and anticipating most. When we were researching Ellie’s candidacy for SDR, several doctors and therapists suggested that we do hip surgery BEFORE the rhizotomy. Ellie’s hips did not look good. In fact, the right hip was 60% out of the socket. The tight muscles in Ellie’s adductors were pulling her hips out of place. Dr. Beauchamp thought we should go ahead with the SDR first, and then see if that would make a difference in her hips. He thought that her hip might possibly move back into the socket a LITTLE bit, but our real hope was that it didn’t pull out further. At 60%, we could probably hold off on hip surgery for a few more years.

Well….when Dr. Beauchamp saw Ellie’s new hip x-ray, his jaw about dropped. Ellie’s right hip is now less than 40% out of the socket!! This is miraculous improvement! I cried. I was so nervous that he’d recommend hip surgery, and the thought alone made me want to puke. But, no! Dr. Beauchamp said that he’d never seen such marked improvement and suggested there was possibility for further alignment. Thank You Jesus! And thank you to everyone who prayed so hard with us! Of course, Ellie and her team of therapists and conductors have worked SO HARD this year, and it’s amazing to see the results. Thank you to each and everyone of you!

*Gait Lab. I was almost walking on air when we got down to the gait lab, after our appointment with Dr. Beauchamp. Last year, the therapists at the gait lab videoed Ellie walking and through that footage, they were able to measure how each muscle was working. So, they wanted a NEW tape of the Ellie’s NEW gait. They, too, were very impressed with the changes. It was wonderful to see!

Sooo happy to be done with all the appointments and on her way HOME!

And, then, it was time for Ellie and I to jet back home. We were VERY happy to see Richard and his strong arms at the airport!

So, in a nutshell, all the news was VERY GOOD! We will continue to work hard, of course. The doctors and therapists expect to see continued improvement for the next few years…and beyond!

One Year Later

2011-02-03T09:36:00.000-08:00

It’s been an entire year since Ellie’s Selective Dorsal Rhizotomy surgery! Can you believe it? Neither can I!

I thought that this anniversary called for a look back at some of the surgery results we’ve witnessed. Of course, it’s always hard to discern if the feat came as a result of the surgery, the therapy afterward, Ellie’s growth, or a mix of all three. I think that the reduction in spasticity (a direct and immediate result of the SDR) was a catalyst for most of Ellie’s physical progress this year.

What Little Miss Sunshine has accomplished in the past 12 months:

*Ellie can now sit crossed-legged for 20 + minutes at a time. She still needs some assistance to get her legs into this position, but once in place, she can sit beautifully. Before the SDR, her thigh muscles were so tight that it was impossible (and painful) to sit crossed-legged. Of course, it's such a blessing that Ellie’s now able to do this, because kindergarteners spend a lot of time on the floor, listening to stories, in this position!

*Ellie doesn’t need to use her AFOs to walk flat-footed anymore. Ellie’s ankles have always (surprisingly) had a decent range of motion, but we noticed an even further improvement after the SDR. All of her doctors and therapists say that she only needs to wear her AFOs when she sleeps. Ellie plants her feet flat while walking (unless she’s really tired), which is wonderful!

*Ellie hardly ever crosses (scissors) her legs while walking anymore! This was a huge hindrance to further progress before the SDR. The spasticity in her hips and legs would pull her legs across one another and she would constantly scissor as she walked. But, we noticed a MARKED improvement in this as soon as she started walking again after the surgery. While some of her spasticity has returned (Dr. Steinbok predicted this would happen), she rarely scissors anymore (we only notice it when she’s tired or when she’s really excited and tries to “run”).

*Ellie can sit independently on her potty seat. Believe it or not, this is a HUGE milestone! Everyone would rather “do their business” in private, and now, after helping her onto her seat, we can leave Ellie alone in the bathroom. We were unable to do this before SDR, because the spasticity in her legs would cause her to extend, and she would fall off the seat if not holding onto our hands.

*Ellie is a master in her walker! This is a skill that was aided by the SDR, but honed through therapy and rehab. She amazes me almost daily, with how she’s able to navigate around tight spots or turns. Her stamina has also grown tremendously this year (again, probably as a result of both the surgery AND intensive therapy). She gets mad at us when we keep asking her if she’s “tired and wants to ride in her stroller”!

*Ellie has started walking independently with her canes. This is a VERY slow process, but the fact that she’s taking ANY independent steps with her canes is a testament to her hard work and determination! My hope is that by 2nd grade, she will be using her canes at school. Wouldn’t that be fantastic?!

*Ellie’s balance has really improved and she’s now able to reach for things with only one hand on her walker. This is a major milestone, too, as it gives her another level of independence. She can shake people’s hands now, while standing in her walker! A little politician in the making (a girl after my own heart!).

Of course, Ellie has progressed in so many other areas of her life (speech, hand dexterity, emotional maturity, etc), but these are the ones that I think are most related to the SDR surgery.

Several people have asked me if we’re happy with the results and if the surgery was worth it.

“Yes!”

Admittedly, in my heart I was hoping that Ellie would be walking everywhere with canes by now, but she’s accomplished SO MUCH in the past year, that I don’t want anyone to think that I’m one bit disappointed in my Superstar. She is AMAZING!

And, this is only year ONE! Here’s to another amazing Year TWO!

All I Want for Christmas...

2011-01-19T18:18:00.000-08:00

Look what happened to (not so) Little Miss Ellie over Christmas vacation!

Yup, she was visited by both Santa AND the Tooth Fairy!

At first, Ellie was very nervous about the Tooth Fairy's visit.

"Is she going to wake me up?" "What does she look like?" "How will she get in the house?" "What kind of car does she drive?"

And on and on and on...

But, when she woke up in the morning, she was very excited and exclaimed, "The Tooth Fairy looked just like Daddy!" HA!

'Course, it's bitter sweet for me. My baby's growing up!

Shovelling in a Winter Wonderland

2011-01-07T13:40:00.000-08:00

We're trying to make the best out of winter, but I sure do miss me some Florida right about now!

Merry Christmas!

2010-12-24T09:24:00.000-08:00

And the Craziness Begins...

2010-12-19T19:04:00.000-08:00

Well, here we are, in the throws of another Christmas season. Two pageants and one family gathering down! It's been a lot of fun, but it will also be nice to spend some quiet time as our little family. And, by "quiet" time, I mean watching football and playing Tinkerbell Bingo, of course.

Ellie started off the holiday craziness with her Kindergarten Christmas program. She, of course, was precious. Nervous and a tad overwhelmed, but precious nonetheless :-).

On her way to the gym for her big elementary school debut!

Getting in on the actions! We decided it would be best for Ellie to sit in her chair while on stage, because she can't use her hands very well when using her walker. And, as you can see in this picture, she really needed to have her hands free!

Away in a Manger...

Next on the agenda was our first family party. And when I say party, I mean PAR-TAY! Ellie has so much fun with her little cousins, and we have fun watching her. And, you know, we're kind of in love with our family. They are the definition of support and unconditional love. Cheesy, but true.

All of the (2nd) cousins together (aka: GONG SHOW)...

Waiting (not so) patiently for the gift-opening to begin...

There we go!

And, today, Ellie rocked it up at church during her Sunday School Pageant. I was SO PROUD of her! She said her verse! Did you get that? Ellie said her verse!! She's had it memorized for a while, but she always clams up in front of people. But, after a super-enthusiastic pre-program pep talk from her mom, Ellie was a super star verse-sayer! Unfortunately, we didn't get it on video, but here's some still photos of church this morning:

Waiting for the class of 5-year olds to do their thang....

She said it, she said it!

How pickin' precious are these two?! Cousin Zach came out to cheer Ellie on. I take full credit for the matching outfits. I couldn't help myself.

More cute matchy-ness

Awwww....You think Grandma will make a copy of this for her fridge? That's a no-brainer!

From our busy Christmas house to yours...MERRY week-before Christmas!

I Could Have Danced All Night...

2010-11-30T20:20:00.000-08:00

Here's MY fair lady, dancing the Saturday morning away!

Ellie is loving her little dance class. Was there any doubt? I am loving her loving it. And I am loving on my sweet, sweet cousins; one who is her dance instructor and the other who is her dance helper. We are so blessed to have such Ellie-adoring family.

Forgive the quality of some of these pictures. In my defense, I had to shoot most of them from behind a glass window. And, you know, librarian-types are terrible photographers.

Getting her ballet slippers on in the foyer...

Goody, goody gumdrops! Class is starting!

Joining her ballerina friends...

Intently listening to the instructions (and secretly hoping that a song from The Little Mermaid will be played :-)...

Time for the tap shoes!

Sitting in the circle, while everyone gets a chance to perform a 3-second "tap solo"...

~~Fred Astaire~~ Ellie's turn!

To say that she loves the sound her tap shoes make is a bit of an understatement...

When do I get to come back, Mom?

As you can see in the pictures, Ellie is fitting into her class quite nicely. She has obvious limitations and differences, but the girls have accepted her with open arms. In fact, one of her fellow ballerinas asked if she could borrow Ellie's walker for the recital. HA!

Again, I can't say enough about Ellie's dance helper. She pushes Ellie to the next level and, although Ellie's exhausted by the end of class, she is so happy.

I'll admit that it's sometimes hard for me to bring her to dance class and watch, as I so wish I could make her movements come as easily as for all the other girls in her class. Ellie's difference is marked and it hurts my heart. But, then I look at her smile and realize it's okay. And I'm proud that we're doing this for her--and so thankful for everyone who's made it possible.

She really is my ballerina princess.

Tender Tennessee Fall

2010-11-05T12:18:00.000-07:00

We went on vacation last week! It was truly glorious. We met up with Ellie's "Southern Grandpa & Grandma" and Uncle Jonathan in Gatlinburg, Tennessee. Right smack-dab in the middle of the Smoky Mountains. The absolutely gorgeous, leaves-turning-colors-for-fall Smokies. It was a wonderful time of enjoying family and soaking in the beauty of scenery that's not as flat as a Canadian Prairie pancake.

We flew down to Tennessee, and our travels were a great testament of how far Ellie's come in the last few months. She did so well with her walker in the airports. This was the first time that she went through the security screening in her walker, instead of her stroller. She was very proud of herself! When the security agents were done with her, Ellie insisted that she "pat down" Mommy and Daddy, to make sure we were safe. Tee hee!

Ellie also surprised us at the cabin. Our bedroom was downstairs and Miss Ellie decided that she could walk up the stairs by herself. Well, almost by herself. With one hand, she held onto the railing, and she put her other hand inside ours. But, she was able to get her foot up on top of each stair and pull herself up!

I know that pictures speak louder than my words (which is hard to believe, because my words can be LOUD!), so here's a bunch for you:

Everywhere you turned, there was a "fall display" just begging for picture-taking! Here's Ellie outside one of the displays at the Gatlinburg Aquarium.

When did her legs get so long? She definitely gets those genes from me. HA!

I am not a fish-lover by any means, but, like Ellie in this picture, I can appreciate weird creatures. And these guys were WEIRD. They're little water worms that poke their bodies out of the sand. A mix of gross and kinda-cool.

Sweet girl lovin' all the marine life....

Penguins!

There was "Big Game" fever all over Gatlinburg! Of course, we had to get a picture of Ellie in front of fellow Alabama Crimson Tide fans!

Can you hear it? Can you hear my precious girl saying ROOOOOOOLLLLLL TIDE ROLL?!

And now, can you hear Richie and me saying ROLL TIDE?! We took advantage of our babysitters and drove the hour down to Knoxville to take in the Alabama vs. Tennessee game. It was SO. FUN. Especially since Alabama won 41-10. Man, I could do that every Saturday...

Another photo op at the Christmas Store...

Ever wondered how Ellie plays pool? Here ya have it...

The view was breathtaking. Truly.

From our cabin's deck, you could see a quaint little church. There were several weddings taking place during the week we were there. Cute!

Ellie LOVED sitting out on the deck, breathing in the fresh mountain air....

Even more than the beautiful surroundings, Ellie loved spending time with her Southern Grandma and Grandpa. Richard's parents live down on the Tennessee/Alabama border, so we don't get to see them nearly enough. But, when we do, they certainly shower her (and us!) with love.

Throwing leaves (and, boy, were there lots to choose from...)!

Picking out homemade taffy to bring back and give to all her kindergarten buddies!

Only in Tennessee do you find rocking chairs at the airport. It helped make our six-hour delay a little more tolerable (ack!)....

If you ever have a chance to get to the Smokies in fall, I highly recommend it. We had so much fun and the colorful leaves were amazing. And, Ellie just keeps getting easier and more fun to travel with! A great time was had by all!

Happy Halloween!

2010-10-31T17:52:00.000-07:00

...from my sweet little Candy-Girl!

Ellie had a Costume Carnival at her school on Friday and she went dressed as a Green M&M. Precious, of course!

Even better than the Costume Carnival was the fact that she could work with Play-Doh at her desk. This girl keeps the Play-Doh factory in business, I tell ya...

The down-side to Ellie's costume was that she couldn't wear her super-cool M&M gloves when using her walker. They're just too bulky and made it nearly impossible for her to hold on to the handles. BUT, she could proudly don them when in her stroller!

Ellie's special Halloween version of her "deer in the headlights" look :-). She's sitting here with her beloved EA (Educational Assistant). My Texas-born girl was especially impressed with her EA's cowgirl costume. See, a perfect match they are!

I hope you all had a safe and happy Halloween...just like we did!

Shameless Plug

2010-10-17T18:07:00.001-07:00

I'm not even going to try to pretend this is anything but a selfish request. Y'all are too smart to see through me if I try :-).

If you're on Facebook, can you PLEASE, PLEASE, PRETTY PLEASE click on this link and "like" Ellie's picture? Because I want a $500 gift card. There, I said it. It has nothing to do with Ellie (goodness knows that the LAST thing she wants to do is appease me again by trying on more clothes), and everything to do with my, "I love dressing my little girl up!" mommy-heart.

"Like" the photo here. You'll have to first "like" Kelly's Kids, in order to "like" the picture. So confusing, I know!

THANKS!

And for those of you who aren't on Facebook (really? Are "those people" still out there?!), here's the photo. The contest requires that the cutie-patoodie subject dress up in their Halloween costume, which must include one item from their 2010 collection. Ellie's precious little monogrammed tights are the item.

Just imagine her in many more cute outfits.... :-) :-) :-)

School Update

2010-10-12T18:13:00.000-07:00

Sorry for taking so long to post an update. September was SO busy. Yikes. Sometimes I wonder how I survive it every year. But, here it is, October, and we’re all still alive and kicking!

We’re also nicely situated in the Land of Schedule and Order. It took a few (bumpy) weeks to get here, but finally, we’ve got a nice routine goin’ and things are settling down. Said routine includes:

*School

*Dance lessons

*Conductive Education and physical therapy

I only have time to elaborate on one of these three activities today (I’ll write about the other two in a few days…hopefully!):

School!

Oh, friends. Thank you all for your thoughts and prayers and words of encouragement over the past couple of months of transition. School is going fabulously for Ellie. I couldn’t have imagined it would be so great, in fact. Ellie has a one-on-one aide and she adores her. God shined down when He chose this particular EA (Educational Assistant) for Ellie, because they are a perfect match.

Ellie is thriving socially, and making all sorts of cute friends. She participates in every element of kindergarten. Even gym!

I happened to be the “Parent Helper” one afternoon and was able to witness Ellie in gym action. It was precious! She was right in there, kicking her ball. Ellie’s new-found love is “duck-duck-goose”. She lurves playing it with her classmates, especially since her EA will zip her around the circle in her stroller, once Ellie’s picked the “goose”.

As part of my afternoon at school, I read Ellie’s class a story about a boy with cerebral palsy. The boy also used a walker and a wheelchair. I used it as a segway into a “Q&A” time with the kids. I asked the gang if anyone had questions about cerebral palsy or why Ellie used a walker. It ended up being quite hilarious and confirmed the fact that I would be a terrible elementary school teacher…because I’d end up laughing ALL.THE.TIME.

The conversation went something like this:

Kid #1: “Why does Ellie have a basket on her walker?”

Me: “Because she can’t use her hands when she’s in her walker, so that helps her to carry things.”

Kid #2: “Why is her basket pink?”

Me: “Because she’s a girl and she likes pink.”

Kid #3: “I have a Barbie who has a pink dress.”

Teacher: “What is cerebral palsy?”

Me: “Good question! Ellie was REALLY little when she was born and her lungs weren’t quite ready to breathe air. They had to use a machine to help Ellie breathe when she was born. When she wasn’t able to breathe, it hurt her brain. Now, Ellie’s brain doesn’t always send the right messages to her muscles, which means it’s hard for her to walk.”

Kid #4: “My grandpa smoked a lot and his lungs turned black and he died.”

Me: “Um. Wow. That has nothing to do with Ellie’s story, but thanks for sharing.”

Kid #5: “My grandpa’s in jail because he had a gun and wasn’t supposed to.”

And, that effectively ended the little chit-chat.

Not only was the exchange funny, it was also heart-warming because it made me realize that while the kids knew Ellie was “special”, they didn’t really care. To them, she’s just Ellie. I love that.

Ellie is recognizing her letters and numbers, which is also encouraging. We’re still figuring out the best way to compensate for her vision “issues” (though she hasn’t been officially diagnosed, I suspect she has Cortical Vision Impairment, or CVI; a visual processing disorder that would be a direct result of her brain injury). But, she’s really improving in all academic areas, which is fantastic.

So, all in all, my girl is definitely cool enough for school!

Too Cool For School

2010-09-13T20:05:00.000-07:00

Wait a sec! I can't use that phrase anymore, can I? Nope. Because my baby *is* cool enough for school now!

Here she is, in all her sweetness, on her first day of school.

Wowzers. I can't believe this day is already here. She's just a baby! She was born yesterday!

The verdict is still out on how Ellie's doing in kindergarten, since she's only attended one day, and I happened to be with her the entire time. She goes solo tomorrow, so we'll see. I am hopeful. I am fearful. I am overwhelmed.

I do know this: we will do whatever it takes to give Ellie every possible opportunity for scholastic success. Because, as I was telling her kindergarten teacher, our hearts bleed with that desire for her. I can hardly wait for Ellie to read....because in books, you can live in an imaginary world, filled with loose muscles and dancing feet.

Whatever it takes, Ellie.

Dancing Queen

2010-09-04T18:26:00.000-07:00

Young and Sweet, that's for sure.

My amazing cousin, Stephanie, is a dance teacher at a local studio. When I approached her with the idea of Ellie taking lessons this year, she jumped on that ballet bandwagon and arranged everything for us. Ellie is so excited. And my heart swells with happiness at the thought of my baby tip-toeing around with all the other little girls.

Ellie's first dance class starts next week. Don't worry, there will be many pictures to follow!

And, for those who are wondering, the little Missy hasn't yet started school. Her first day of kindergarten is on Friday. We met her teacher this week and couldn't be more thrilled. Ellie walked into the classroom and immediately asked, "Where are the books?" That's my girl! Showin' off for the teacher even before the school year has begun!

I'll try to update more often as Ellie rocks her way through these new adventures and her mom tries to remember to breathe!

Grad '10

2010-08-18T18:05:00.000-07:00

Not every kid gets to graduate from camp EACH summer! It's just another reason why Ellie is so very special. As promised, here are some pictures of that ceremonial day...

Waiting for the show to get on the road...

How am *I* the mother of a boy-crazy 5-year-old?! Here she is, flirting with yet another boy. Good grief. We're gonna have to lock that girl up!

Cheering on her sweet buddies as they receive their diplomas.

Now it's Ellie's turn! Here come the pretty purple/pink canes!

We tried to pump Ellie up for DAYS before the graduation ceremony, telling her how AWESOME and AMAZING and COOL and FANTASTIC it would be if she walked with her canes by herself on her way to get her "special paper" from Gemma (one of the conductors). I was so nervous when I saw her stand up in her canes, gettin' ready to head to the center of the room!

...And she did GREAT!

Her conductor, Anne, watched closely as Ellie slowly walked solo with her canes...

There it is. The very special paper. The "Pidoma", as Ellie would say!

Oooh, brave girl, taking her hand off her cane to shake Gemma's hand!

Showin' it off!

And the very best part of the day is getting to see Grandma, who came bearing a whole bunch of graduation gifts!

It was truly an amazing month and Ellie once again surprised us with her determination and spirit. It makes me dream about what she's going to accomplish next summer!

Onto August...

2010-08-10T09:17:00.000-07:00

Hi friends!

I'm baaack! Did ya miss me?! With a smiling heart, I can tell you that Miss Ellie sure did! I took off for 9 days to the Windy City of Chicago, sans Ellie and sans Richard. THAT is why this blog has been so neglected! I hauled 11 teeny-boppers with me, on a short term missions trip. It was un-stinkin'-believable. If you want details, let me know. It was lovely to come home to smothering kisses and repetitive reminders of, "I missed you, Mommy!"s.

Of course, this blog is about Jelly B'Ellie, so I'll refrain from spewing all of my news...

My little munchkin finished her month of intensive conductive education therapy camp at the end of July and we were once again thrilled with the results. As you saw in the previous video, she is starting to slowly (but surely!) walk solo with her canes. This is a major milestone! I have a whole bunch of "graduation" pictures to download, but you'll have to cut me some slack.

For the month of August, Ellie will be receiving her physical therapy at Children's Hospital (2-3 times per week), and LOTS of stretching and cane-practice from her resident honorary PTs (aka: Mommy, Daddy, Grandma, Steph, etc...). Lucky girl, huh?

As you wait for those grad pictures, I'll leave you with a few of Ellie and her new boyfriend. Richard is ready to sit on the front porch with his shot gun, waiting to scare Ellie's suitors (that is, if we had a front porch and if I actually allowed Richard to own a shot gun), ha!

Oh. My. Goodness. !!

2010-07-20T16:15:00.000-07:00

Look at my baby!

LOOK AT MY BABY!

LOOK AT MY BABY!

Oh my. I don't even know what to write because I am overcome. With joy. With pride. With complete adoration.

My baby is walking with canes BY HERSELF. It is unreal!

Excuse me while I go dance around the house and scream in delight...

PS: To Becky, the physical therapist who said, "You know she'll never walk...": Um, yeah. Not so much.

Camp Fun

2010-07-18T18:29:00.000-07:00

Oooh, this is so much fun! I love coming home each weekday and living out Ellie's day through pictures. My heart soars every time I see evidence of how much fun Ellie is having at her Conductive Education Camp. She just melts me.

As we can all see through the photos, it's obvious that Ellie's conductors and therapists go to great lengths to ensure her "therapy" is fun. And while I am thankful for that, I am even more grateful that Ellie is so very tenacious and strong. She fights through it every day. She takes just.one.more.step. every day. She works so very hard. Every day.

I am head-over-heels in love.

Working hard on fine motor tasks. Ellie lurves her some puzzles! It takes a lot of dexterity to put the pieces together.

Having fun in the Sesame Street playhouse (yes, I said SESAME STREET...Ellie's in heaven!) with her sweet friend.

Going down the slide all by herself! Whoosh!

Dr. Jelly B'Ellie.

Now that her mama has to rush out of the center in order to be at work on time, Ellie is always the first one of the kids to arrive at camp. She zips her way down the hall, straight into the classroom, where she waits for all her friends. Precious!

Remember playing with the parachute in the playground at recess? Well, who said that our "special kids" can't do the exact same thing?! FUN!

Brilliant!

2010-07-12T19:37:00.000-07:00

The title of this post refers to ME, of course!

Or, perhaps I'm the opposite of brilliant, since it's taken me so long to figure this out. Ha!

This morning, a light bulb flashed (read: flickered) in my head and I thought, "Hey, I should give my camera to Ellie's aide and ask her to snap some 'cute shots' during the camp day!" And, whaddayaknow, it worked out great.

These are the sweet pictures that greeted me upon my return home from work today:

Looks like Little Miss Ellie had a pretty awesome day! We are so grateful that Ellie's conductors and therapists turn "learning how to use your body" into something so fun. I am constantly overwhelmed when I think about Ellie's "team" and how much they continuously do for our baby.

And a special cyber high-five to Ellie's aide! Thanks for these fantastic pictures! Hopefully they'll keep comin' and I can share them with Ellie's Cheerleaders (ie: YOU)....

PS: Yes, I mentioned the "w" word. Work. Today was my first day back to the grind. Real life has fully returned. Good thing I loved every minute of it (minus the alarm clock, of course)!

4th of July

2010-07-06T07:10:00.000-07:00

In this house, we are all about dual citizenship! So, I thought it'd be a good idea to post a couple of pictures of Ellie in her 4th of July attire, so as not to give Canada an unfair advantage. Here she is, on her patriotic way to church on July 4th:

She's one cute little firecracker, isn't she?!

O Canada and Oh, Camp!

2010-07-02T07:42:00.000-07:00

Happy birthday, Canada!

Ellie was a little confused yesterday when we started singing the "Happy Birthday Song" to Canada. She said, "No, only PEOPLE have birthdays!" It was a perfect opportunity for me, her political scientist mom, to give Ellie a little civics/history/geography lesson!

Showing off her Canada Day t-shirt (is it unreal-cute or what?!)

'Course, continuing her life theme, there was no rest for Miss Jelly B'Ellie on Canada's Birthday...The little Canuck had a fun, hard-working day at The Movement Centre, where she's attending summer "camp" for the month of July. The good thing is that Ellie LURVES it there! We had today off (in order to make a long weekend out of the Canada Day holiday) and she was upset that she wasn't able to see her friends. I'm so thankful for that! It tears up my mama heart to force Ellie into therapy. Thank goodness for people like her conductors and therapists and helpers who have devoted their lives to making hard work FUN!

Working hard, walking with her canes while at camp. (Sorry the picture quality is suspect, but I tried to sneak a shot without Ellie seeing me...)

Spending Canada Day at camp!

Our goals for camp this year are:

*Ellie will be able to get into and out of her walker all by herself.
*Ellie will be able to get on and off the potty by herself or with no lifting from her care-giver.
*Ellie will be able to use scissors with some accuracy.
*Ellie will be able to use utensils in a "less messy" way while eating.

The theme for all these goals, of course, is "kindergarten readiness" (gulp)! My hope is that Ellie's school aide will be able to get through the afternoon without lifting her AT ALL. Obviously, the less lifting the aide does, the less lifting I'LL have to do at home too! Our ultimate goal is for Ellie to be as independent as possible, which means that she'll have to learn how to use her body to do these simple "life tasks" on her own. I truly believe it's an attainable goal; especially since ELLIE desires independence for herself too.

I'll keep you posted as to the status of these goals....hopefully, along with lots of PICTURES!

Stayin' Alive

2010-06-28T19:16:00.000-07:00

Yes, we're still alive!

Yes, I still plan on updating this blog!

Yes, we're doing fine!

Yes, there are less than 10 weeks till college football kick-off (oops, did that one not fit?)!

I apologize for leaving you hanging for three weeks. We've been busy, settling back into "Canada Life". Since we were gone for nearly half-a-year, we had a LOT of doctor's appointments to make up. In the past 3 weeks, we've been to Children's Hospital 8 times. Gulp. This journey is not for the faint of heart, that's for sure.

Thankfully, all of Ellie's medical appointments have gone well. Most of them were simple follow-ups. Our local neurosurgeon was very impressed with her tone and new abilities, post SDR. I was so thankful that we "just" had to drive to our local Children's Hospital to see him, instead of fly out to Vancouver for a six-month follow up to Dr. Steinbok!

Of course, there is also no rest for the therapy-weary either. The day after Ellie and Richie flew home, she started back at her local Conductive Education center. Precious, hard-working girl!

Sometimes we have to get creative when doing Ellie's stretches, in an attempt to keep her still and "loose". Here, she's "calling" Daddy to tell him that she (and mommy) would like supper ready when she gets home from therapy. :-)

Catching up with our fabulous physical therapist. Ellie was thrilled to see her again!

She was supposed to begin her intensive camp (6 hours/day, 5 days per week) today, but little Missy is sick. It's a bummer, but, really, we've been so blessed with health over the past 6 months that I can hardly complain about a low-grade fever and stuffy nose. Hopefully she'll be joining her boyfriends at the center tomorrow.

We've also been setting things up for Ellie to enter SCHOOL in fall. How on earth did my baby get to be school-age? I just blinked and all of a sudden she was five! I'll post about that a little later. There are many emotions that go into school registration. I'm sure that's true for moms of typical kids, but I think it's compounded when your sweet soon-to-be-Kindergartener has special needs. I am trying to take it in stride; trying to breathe; trying to trust. I know that Ellie will absolutely love being in school and that the kids will quickly grow to look past her "different-ness". But, I'd be lying if I said that I wasn't scared. This isn't the way I envisioned it. This isn't what I wanted for my precious baby. But, Ellie has taught me to rise above the visions and wants, and embrace the blessing of what IS.

(See, I told you that kindergarten is emotional!)

So, overall, we're ALL GOOD. I'll try to make sure this blog stays the same way!

Home

2010-06-08T19:33:00.001-07:00

We made it!

The drive was long, and the van was PACKED, but everything went really well on the road. Gotta love those audio books...

It's like a bad scene from "Where's ~~Waldo~~ Ellie?"

Home.

I think we're still trying to mesh our heads and hearts with geography, but, with each reunion and unpacked box, life feels more settled. When driving home from therapy today, Ellie asked, "Are we going back to our Florida house or Canada house?" We're all reconfiguring our compasses.

Speaking of therapy...Ellie has been having a grand ole time, showing off all those new skills for her therapists and conductors! And I'VE been having a great time hearing the "oooh"s and "awww"s. Perhaps our therapists are indulgent, but it's still heartwarming.

We are adding things to the "return or get rid of pile"! Specialized toilet seat (she can sit on the potty solo now!). First Kaye Walker (she's grown out of it!). Fisher Price booster seat (no booster seats needed anymore!). All things that we were using before the surgery....but not now! Whoop!

This past week of transition and travel has been exhausting for all of us, so I'll leave you with this brief update and try to mimic Ellie:

Love y'all!

Toodaloo

2010-05-28T05:32:00.000-07:00

Goodbye Orlando. You have been good to us....thanks, in part, to the toll roads, which, while robbing us dry, allowed us to bypass any significant rush hour traffic when leaving the therapy center at 5:30 every weekday. City life, sans traffic, is my best!

Goodbye Conductive Education Center of Orlando. You have been beyond good to us. Words simply cannot express how we have fallen in love with so many people who grace your hallways every day. The people who have loved on Ellie to the point of tears. The people who have believed in Ellie from the moment she slowly walked through the door. The people who have work tirelessly to ensure that other Ellies can receive the same sort of treatment and education. The people that Ellie has asked about first thing every morning: "Which kids are going to be there today?" "Who's going to be my helper?" The people who have dropped their kids off to "work hard" with Ellie for 3 hours and, in turn, have become sweet new friends to me. Mmm. It's a wonderful place and we will miss it dearly.

Goodbye palm trees. And warm winters. And hot summers. And the weird, mystery fruit tree in our back yard. I have enjoyed you every day. I have also enjoyed the team of gardeners that weekly tend to you. Nothing is better than taking in the beauty of yardwork performed by other people.

Goodbye swimming pool. Oh, how we will miss you! My previous bathing suit lasted 4+ years (though it probably should have retired by year 3). Now, I'm looking to replace my swimsuit of 6 months! We have had a LOT of fun in the water this winter and spring.

Goodbye beach. Thank you for providing Ellie with hours of sand castle-building and salt water-tasting fun. (Thank you, also, to the inventor of the portable vaccuum cleaner. That sand gets EVERYWHERE!)

Goodbye Einstein Brothers Bagels. Sniff, sniff.

Goodbye Caroline. Actually, I really mean BYE, Caroline. While you are a cute 10-year-old neighbor, I could have done without the noise of your pink Barbie car at 7am on Saturday mornings. But, Ellie is fond of you and I'll miss her asking, "Is Caroline looking at us?" every time we pull into the garage.

There are, of course, many other "little" things that my heart will miss about Orlando, about Florida, about the South, and about the States. Our time down here has been blessed. We are so thankful.

We look onward and upward (literally) as we start our long journey home. See ya next Sunday from the other side!

Our special goodbye picture with "the twins". Sweet Sophia and Ellie are so similar in personalities and abilities, it's funny! Ellie refers to Sophia as her "Florida Best Friend". I've had a great time getting to know Sophia's mom too. Here's to the "Thursday Crew"!

This was the stuff I was sending down on the elevator. Yikes. It's gonna be one full van! Pray for safety as we likely won't be able to see out the back window!

We Can Tell You How to Get, How to Get to Sesame Street...

2010-05-24T18:58:00.000-07:00

Boo!

Remember me? The bad blogger? The BUSY blogger? I'm still here! And so's Ellie!

These have been a couple of jam-packed weeks for us. We're trying to tick things off the "Things I Want To Do While In Florida" list, and with only about a week left, we've got to be diligent (ie: crazy)!

Ellie, of course, continues to thrive in her Monday-Friday therapy/conductive education routine. She's working on her strength and stamina, especially with solo cane-standing. Learning how to walk with canes is a very difficult process (as I'm sure I've mentioned before), but every (literal) step means that Ellie is one inch closer to the goal. We're so proud of her!

Last weekend, we cashed in Ellie's birthday gift from Southern Grandpa and Grandma and headed down to Tampa. We took Ellie to Busch Gardens because they have a "Sesame Street Land" on property. Ellie loves her some furry monsters! She had a "sunny day, sweepin' the clouds away"... (In fact, maybe her experience was a bit *too* sunny...we could have used some clouds to break up the 95-degree day!)

Ellie wanted to walk EVERYWHERE! We made her drink a LOT of water, cuz it was HOT!

Lovin' all the rides...

Daddy taught Ellie how to REALLY ride the "roller coaster"!

Ellie definitely wanted to keep her distance from the "in real life" characters...silly goose.

Best part of the day: SHOPPING in the (air conditioned!) Sesame Street Store!

Showing off her new cup. Her therapists have been working with on getting her to use "big girl" cups and she's doing really well with it. So, this cup goes with us to therapy every day now!

During the song-and-dance show, Elmo asked the audience to "laugh like a hyena" . Apparently, Ellie knew what that meant!

Pictoral Update

2010-05-13T19:20:00.000-07:00

("Pictoral Update", also known as "Nothing Exciting Happened This Week, So I'll Just Leave You With a Few Cute Ellie Pics" :-))

Ellie is learning how to stand up in her walker all by herself. In order to do this, she has to hold onto the back bar of the walker and pull herself up. Then, she has to turn herself 90 degrees so that she's facing forward. Here she is, trying to side-step (VERY difficult for her to do) so that she can face forward and start walking.

Practicing her fine motor skills by using utensils...

Ellie's "Florida BFF". Sweet, sweet girls!

Life's a Beach

2010-05-06T05:32:00.000-07:00

I get it now.

It all makes sense. I now understand why Southerners flock to the beach in the summer.

Up until last weekend, we had been to the coast a few times during our Florida stay, but each time, it was windy and chilly and we had sandy toe jam for days afterward. Not my idea of an amazing time.

But, that all changed last weekend. The temperature in Orlando was nearly 100 degrees (40c) on Saturday. The temperature at the beach was 80. And breezy. And the water was perfect. And Ellie thought she had died and gone to heaven.

It was truly wonderful. No doubt that we'll do it again this weekend!

Once we were all cleaned up and out of our bathing suits, Ellie kept begging and begging and begging to go walking by (and into!) the water. It was so precious. Once she got in her walker, she was OFF!

Shout Out

2010-05-04T09:54:00.000-07:00

We LOVE our church.

We MISS our church. A lot.

And, without question, we are loved back. They have cried with us. They have rejoiced with us. They have supported us; spiritually, emotionally and financially. They have prayed. And prayed. And prayed.

Last week, one of the church staff asked if I could whip up a little "update video" that could be shown in Sunday's service. There are still some non-techies out there who don't have the internet, which means they can't read the frequent blog and Facebook updates. (For shame!)

So, being the rock-star computer-savvy person I am (HA!), I put something together. And it was shown in the morning service.

Since Sunday, I have heard from so many church-friends, saying hi and thanking me for the updates. I have also heard that following the video, Ellie was prayed for and loved on, even from 1500 miles away. How amazing is that?!

So, I just wanted to send a special "We love you and miss you" to our church family back home. THANK YOU for loving our little Ellie so very much.

Make an on-line slide show at www.OneTrueMedia.com

Walking With Canes, Part III

2010-05-03T09:46:00.001-07:00

Look at her go!

It's hard to see on a video, but Ellie is moving the canes all by herself. She is not yet strong enough to balance them completely on her own, so the only thing that Joyce, her assistant, is helping her with is stabilizing the canes on the ground as Ellie brings them to the floor. What's really great is that she's now walking with her AFOs (leg braces) on. While initially it's more difficult for Ellie to walk with her braces, they really help keep her feet flat and straight (her natural tendency is to tip-toe and turn her feet inward). When we first started with canes (2 1/2 months ago), Ellie threw a fit when we put on her AFOs and asked her to walk with them! She said, "It's too hard!" And now....

Well, just look at her!

Make photo slide shows at www.OneTrueMedia.com

If I Knew You Were Comin', I'da Baked A Cake...

2010-04-28T13:52:00.000-07:00

This year, Ellie received her very first gift card as a birthday present. Or, more accurately, the first gift card that we actually let HER use! She has become a bit of a shopping diva and loves to pick out toys and clothes. Especially at Super Target. Oh, yes. We're only in the States for a few months, but I have quickly taught the girl well.

So, with Auntie Cherise's gift card in tow, Ellie and her dad perused the aisles of Super Target and she chose to buy an Easy Bake Oven. She's going to be a world-famous chef, just like her mama!

I'm sure that Ellie's occupational therapist would be happy, as there is ample opportunity for fine motor practice with the hands-on Easy Bake. (For those who are wondering if the SDR surgery resulted in fine motor improvement for Ellie, I would have to lean towards "no". She has improved in that area, but I think it's a result of age and practice. Dr. Steinbok said that we might see significant improvement in this area, but we shouldn't expect it. He only operated on the nerves which send messages to Ellie's legs, so any residual upper body effects would be a big bonus.)

What follows is a pictoral synopsis of Ellie's Easy Bake Adventures:

1. Stir up the water...

2. Add the outrageously overpriced packaged mix to the water. Stir...

3. Put the batter into the huge pan....WITHOUT eating it first!

4. After waiting (not so) patiently, listen for the Easy Bake ~~Light Bulb~~ Oven to beep, and then carefully pull your masterpiece out...

5. Show fellow Chef Extraordinaire (Mommy) the amazing cake. Hope you're hungry because we'll each get a piece at least the size of a finger nail!

The Florida Way

2010-04-27T07:07:00.000-07:00

Ellie's strength and stamina are improving at such a fast rate that it's allowing me to be (extra) "Mean Mom". Now, instead of stroller-ing her to the pool, I make her WALK there (it's approximately 1 block from the house)! It still makes me laugh to watch her zoom around in her walker, while sportin' her bathing suit. Gotta love the South!

Catching Up

2010-04-21T12:15:00.000-07:00

Well. I blinked and then it was a week later. How did *that* happen?

As usual, things have been busy. Ellie did some daddy-bonding this weekend as I flew up to Washington for a bit of a girls' weekend (it's strange to refer to DC as "up" north!). It was a FANTABULOUS break for me (though my gut is still sore from all the laughing I did with the chickas!), and a good time for Richard and Ellie to do some father-daughter activities.

'Course, Richard couldn't last an entire weekend alone with Ellie, so his parents drove down to Orlando to help out. (Just kidding....They had scheduled their visit well before I decided to go away for the weekend!) They're here till the end of the week, so the good, yet busy, times keep rollin'...

Ellie's doing sooper-dooper. I was just chit-chatting with her conductor-therapist, and she was very pleased with Ellie's new-found ability to sit (both with legs to her side and in front of her) from lying down. We've been working on this skill for YEARS now, and it's only been in the past couple of months that Ellie's gained the trunk strength to accomplish it. Whoop!

Since I don't have any new Ellie pics on my camera, and it pains me to post a photo-less entry, I'll leave you with a goodie-but-oldie. Love y'all!

April, 2006.

It's Going SWIMMINGLY...

2010-04-14T04:59:00.000-07:00

I'm not sure if this is directly related to Ellie's SDR surgery, but we've been so impressed with her ability to SWIM this year. She has always been a fish and loved the water, but it's only been in the past few months that she's really been able to navigate herself in the pool. She can kick those legs and give 'er!

And then last week, another one of my dreams came true.

Ellie swam ALONE. I was actually able to perch myself on a lawn chair and admire her aqua-beauty while on dry, warm, non-hair-wrecking land. It was pure bliss!

I think it's time to investigate some private swimming lessons for Miss Ellie when we get back home. I know that she'd love to ditch the tube and REALLY swim solo. Maybe she'll be the next great Paraolympian swimmer!

Here's another one that's just for fun, so you can hear Ellie talk a bit and breathe in a little more of her sweetness!

Give Me A "P", Give Me An "R"....!!

2010-04-12T07:59:00.000-07:00

Plenty of things to be excited about, I know, but sometimes I have to admit that I'm plagued with discouragement. At times, I sit here in front of the computer, contemplating what to post. Do you want to see yet another video of Ellie walking the same way, with the same purple canes? Do you want to behold yet another picture of Ellie squating at the wall bar during her conductive education class? Retraining the brain is a painstakingly slow process. BUT. I also know that Ellie has been improving, almost daily. I need to focus on those "little" things when camping in the valley, waiting for my hike up the mountain. So, here goes...

Rock-star Ellie continues walking with assistance in her canes, quietly building up strength each time she accomplishes the task. She lost some strength over spring break, while sick and on "therapy holidays", but I was pleasantly surprised how quickly she built her stamina back up. By the end of last week, she was back to her pre-spring break self.

Other people are struck by Ellie's awesomeness too! I love this picture, as Ellie's assistant is obviously taken with her. Sweet, sweet girl.

Gargantuan generosity. Those are words that describe YOU, our dear friends and family. Ellie has been showered with snail mail lovin' from the day we arrived in Florida. Words cannot adequately express how our hearts have soared because of these constant love-reminders. Thanks to ALL of you who have hugged us in this special way. Ellie's face lights up when she sees her name written on an envelope or package--see, you're teaching the girl to read!

Running.....her MOUTH, that is! Except, Ellie's running it in a GOOD way, ha! During one of Ellie's pre-op visits, Dr. Steinbok mentioned that he'd seen a lot of speech improvement after Rhizotomy surgery. He was cautiously optimistic that we would see similar advancements in Ellie. Well, I don't know if it's a result of the surgery or "regular" development, but Ellie's sentences are becoming more complex every day. She chatters pretty much non-stop...just like her daddy. :-)

Everywhere we go, Ellie wants to zip around with her walker. Especially when we're shopping. I think she loves the independence it gives her. She is also just starting to get brave enough to hold onto her walker with only ONE hand, while grasping something (usually a toy, in a store) with the other hand. That action requires a lot of balance and strength! She only lets go of her walker for a couple of seconds, but the mere fact that she's initiating it on her own is really fantastic. Usually Ellie is timid when it comes to "pushing her limits", but obviously the shopaholic in her overrides. (Oh, man, Richard and I are in for some trouble in the coming years, aren't we?!)

Simply Sensational. That's what Ellie is. Really. She is working SO.VERY.HARD. Every day. Sometimes I forget that every step she takes is a fight against what her body wants to do. Ellie rarely complains. She just continues to fight.

Amazing PROGRESS, I'd say!

Back to the Grind

2010-04-06T05:37:00.000-07:00

Goodbye, Spring Break. We sure enjoyed your visit! Be back soon!

My family was here over spring break and it was fabulous time. Ellie loves her little cousin and it was fun to watch them play. Of course, true to "vacation" form, we all came down with nasty colds, which dampened our fun a bit. Otherwise, we had a great time, relaxing, hanging out and taking in some of the Orlando sites.

Ellie had a break from therapy, which was also nice. However, we noticed yesterday, upon our return to rehab, that the week off and bad cold had really stolen some of Ellie's strength. So, I anticipate that this week will be themed "Getting Back On Track". Poor Ellie!

While my family was here, we had a belated Birthday Party for Ellie. Richard is the Ace of Cakes, so he made Ellie what she requested: a Belle cake. I'll leave you with pics of both princesses. Hopefully I'll have more pics and less boring posts towards the end of the week!

Admiring her birthday cake with cousin Zach

No, really, Belle DOES taste good!

Opening presents with some "help"!

We're On Spring Break!

2010-03-30T16:05:00.001-07:00

See ya'll next week!

Standing

2010-03-23T06:17:00.000-07:00

The first step (pun intended) to Ellie walking independently with her canes is mastering the ability to stand with them. We have been working on this skill for a few weeks now. The first week, we gave her a goal of standing by herself with the canes for 10 seconds. The second week, we upped it to 20 seconds. Yesterday, Gabby pushed the limit to 50. However, Ellie was in an especially "show off" mood, so she exceeded that 50 and stood for 80 seconds! It was so long, in fact, that I couldn't get the entire thing on video. This all means that her balance and strength are improving, yay!

(And. Before you get all ugly on me about Ellie's crazy hair, please know that I DO NOT send her to class that way. They spend 1/2 an hour on the mat, doing stretches, which leaves her hair lookin' pretty ghetto. That, and I really really miss my mom and daycare provider's hair expertise!)

The Update Post

2010-03-17T07:39:00.000-07:00

It's nice to know we're loved....I think!

I have received a few polite requests to get my tushy in gear and post more frequently and in depth on this blog. Now, now friends. You all know that I am TERRIBLY busy down here. I have many events to attend and people to see. I am inundated with get-together requests by my hundreds of Florida-friends. I have chuch commitments and work commitments and social commitments.

Oh, wait a sec. That was my Canada life!

My only excuse is that sometimes I don't feel like being in front of a computer screen and I have been hosting my share of houseguests.

So, here is a literal snapshot of the things we've been up to:

*Physical Therapy

Ellie building strength in her legs by kicking the ball

Standing up only holding onto Jen's hands!

High kneeling is VERY VERY difficult for Ellie, so we practice it a lot!

*Making Easter Eggs (yes, Ellie is learning from the craft master: her mom. HA!)

Stirring the dye...

Letting the eggs dry (as mommy sighs in relief that neither skin nor clothes nor furniture were stained!)

Putting the stickers on the dried eggs...

Finished product! SOMEONE looks pretty proud of her craft!

*Getting a Hair Cut

Quite fittingly, Ellie got placed in the Princess Station!

*HAPPY BIRTHDAY, ELLIE!
For Ellie's 5th birthday, we drove down to Tampa to pick up her new leg braces at Shriner's Hospital (what a memorable birthday, huh?!). Ellie was showered with gifts from the hospital staff, bless their hearts!

Playing with some of her stash as we wait for the orthotist

Trying out her new contraption and AFOs. The elastic band around her legs is supposed to turn her feet outward (they are prone to turning in, which can cause all sorts of problems). She is also wearing her new leg braces (I'll take a close-up picture later). Needless to say, Ellie was not thrilled with all the new equipment, so we'll try introducing it in small steps.

So, there you have it! We're working that FIVE-YEAR-OLD girl of ours pretty hard!

Be Still, My Heart

2010-03-14T17:40:00.000-07:00

Ellie wanted to walk barefoot on the beach.

So she did.

Canes, Take 2

2010-03-09T05:50:00.000-08:00

As I was uploading some videos this morning, I contemplated posting this one. In fact, I was almost feeling discouraged by it. To the "untrained" eye, this is just another video of Ellie struggling to walk with her canes, I thought. I didn't want you, my beloved blog readers, to be bored by content that's seemingly similar to the movie I posted 2 weeks ago. I didn't want you to secretly say, "I don't see ANY difference between this movie and the last one..."

BUT.

Then I watched the video from 2 weeks ago (you can find it here) and realized that Ellie's improvements ARE pretty spectacular and obvious! Only 14 days ago, Gabby was having to put her foot inbetween Ellie's legs every time she took a laboured step with her cane. Otherwise, Ellie's legs would criss-cross (or, scissor). Only 2 weeks ago, our goal for Ellie was to have her walk from the middle of the classroom to the door (maybe 15 feet).

NOW...

She is walking from the classroom all the way to the snack room (75 feet or so), AND BACK! Gabby doesn't have to use her feet to keep Ellie's from scissoring. The only thing that Gabby is doing on this new video is stabilizing the canes. Ellie is doing all the moving, all the stepping, all the standing.

Sorry for doubting you, my amazing Jelly B'Ellie!

PS: I know I sound super-excited while taping this video. Of course, every time I see Ellie walk with canes, I'm pumped, but I *was* being overly dramatic (who? me?) here as an incentive to Ellie. She loves nothing more than to impress people, so I was hamming it up a bit :-).

The BIG Little Stuff

2010-03-05T05:22:00.000-08:00

I write a lot on this blog about Ellie's walking. Of course, that's "the biggie" and something that she's working very, very hard on. But, there are also a bunch of "little things" that we've noticed since the surgery and those are important too! I know that there are many parents of kids who have CP reading this blog, and they will understand how important these (not so) little things are. I am still often amazed.

Here are two more examples of how life has changed since having the SDR surgery:

As previously posted, Ellie has been able to use the regular restaurant booster seats since the surgery and it's been great! We've been leaving our Fisher Price booster in the car, instead of lugging it around with us everywhere. Well...At Disney we ate supper at a restaurant that didn't have ANY booster seats. So, we thought we'd see how Ellie did on JUST.A.CHAIR. Oh my goodness! She did it! She sat on the chair all by herself and was able to balance well enough to use her hands and eat!

Ellie's legs were so tight and stiff (spastic) before the surgery that she wasn't able to bend them enough to sit "criss-cross, applesauce". I think it's been 2 years since she's been able to cross her legs while sitting. It's unfortunate, because this is a very good position for posture and play. Well, here's Ellie yesterday, reading her book:

This position will help her hip tremendously (we're desperately hoping that her right hip will improve so that she won't be subjected to hip surgery next year). Yay!

We are lovin' all these BIG "little" improvements, that's for sure!

Incentive

2010-03-02T06:09:00.000-08:00

Well, we found something that motivated Ellie to walk longer than ever before. Unfortunately, it's a bit pricey to do every day!

Braces and Laces

2010-02-25T05:12:00.000-08:00

We took a road trip down to Tampa on Monday so that Ellie could go to the Shriner's Hospital there. We've been going to the Shriner's Hospital in Minneapolis for a couple of years now, and have really grown to appreciate the care and equipment we've been given there. We've valued the "second opinion"s we've received at Shriner's and have found that some equipment is easier to obtain through them than at home. So, it's worth the 8-hour drive every 6 months or so.

Ellie's in need of new AFOs (leg braces), and we've been putting it off till after her SDR surgery, waiting to see what her (possibly new) needs and abilities are. So, off to Tampa we went...and sure enough, they also agreed that it was time for some new braces! The entire experience was, once again, very positive and we are so grateful for this medical care, especially now that we're in living in the US for a few months.

We have to go back on Ellie's birthday to pick up the finished AFOs. Nothing spells "Happy 5th Birthday!" like a trip to the hospital to pick up new leg braces...

Molding the new AFO braces

It wouldn't be a Shriner's Hospital visit without a picture with the big Shiner-Guy at the entrance!

Other than that, Ellie keeps plugging away at her rehab. So far, this week has gone a lot better than last, so I think the little girl is getting used to being worked so hard. Sweet thing!

Here's one more picture that we found interesting. Richard was driving with Ellie and when he looked back, he saw her doing this:

For most of you, this isn't something blog-post-worthy, but for us, it DEFINITELY is! Ellie has NEVER been able to bend her knee and lift her leg onto her car seat before. Pre-surgery, her little leg was too stiff. Now, we rejoice as we have to re-tie her shoe every time we put her in the car!

You CANE Do It!

2010-02-22T05:45:00.000-08:00

Ellie "walked" with canes for the first time post-SDR last week! Of course, I use the term "walk" loosely, as it's very slow going. When zipping around in her walker, Ellie uses a lot of upper body strength to help her along. With the canes, she's unable to do that, so her upper leg weakness is really visible. BUT, we have to start somewhere, and I'm happy that she was able to take these steps only 3 weeks after surgery!

PS: Ellie has been having a little difficulty adjusting to her new, rigorous schedule. We had a few meltdowns at therapy last week. So, if you could pray for continued resiliancy and that this week would be tear-free, my mama-heart would be very grateful. Thanks!

Hard At Work

2010-02-18T04:46:00.000-08:00

Since Ellie was by herself in class on Tuesday, I was finally able to snap a few pictures! 'Course, after 10 minutes, my memory card was full, but, hey, I tried.

So, here's a glimpse into Ellie's new routine of workin' her tushy off! These pictures capture some of the standing work she does every day at her conductive education sessions. These are very difficult moves for her, so any "ooo"ing and "ahh"ing is warranted.

Ellie's ability to stand straight is one of the gross motor functions that has been most affected by the SDR surgery. She lost a lot of strength in her thighs, and those are the muscles most used during standing. So, we're working hard to pump them up! Ellie continues to amaze me with her spirit; continuing on with a task that is so difficult. That's my girl!

Ellie practicing her high kneeling. Again, this is a movement that is very difficult for her, because of her weak upper leg muscles. Of course, that means that the sweet girl gets to practice LOTS of high kneeling!

Part of our therapy is helping Ellie regain some confidence in her physical abilities. She is very uneasy about her "new legs", so little by little, we are pushing her to do things that stretch her. Here, you can see that she is very nervous about Gabby letting go of her legs and standing all by herself at the ladder. BUT, she did it!

Working on squating down, keeping that position for 30 seconds, then pulling back up to a stand on the ladder. That's definitely hard work...YOU try doing that! :-)

Lastly, here is a short video of Ellie doing some of these exercises. Gabby, her conductor/instructor is from Hungary and was running out of English songs to sing to Ellie. She asked Ellie if she wanted to hear a Hungarian song and Ellie was quite thrilled. So, I guess we can add language training to the therapy mix!

Walking With Braces

2010-02-16T06:12:00.000-08:00

Ellie is starting to walk with her braces (AFOs, or Ankle Foot Orthotics) on! We are hoping that by wearing her braces, she will keep flat-footed more often and that her scissoring (leg-crossing) will also be helped. This video is from yesterday (19 days post-SDR surgery), and this is the very first time she's walked with her braces AND sneakers on. We were very impressed! We will have to work on the her right foot turning in, but it's a good start.

One of her braces without any shoes on.

With the shoe on. Ellie normally wears a size 8.5 shoe, but in order to fit over the AFO, we had to buy a size 11 wide! You can imagine how bulky and heavy that feels on her foot. For that reason alone, we were really impressed by her ability to walk with them as well as she did!

Retail and Aquatic Therapy

2010-02-15T07:01:00.000-08:00

Ellie surprised us yesterday! She INSISTED that she wanted to walk from the parking lot into JC Penney, and from Penney's into the main mall. That's a LONG distance, even pre-surgery, and Richard and I thought she'd never make it. HA! When Ellie wants to do something, she does it. And so she walked....that entire way! Love that kid!

The reason we went to the mall in the first place was to look for runners (sneakers) to fit over her braces (AFOs) so that she can start walking with them on. We found some great shoes and I know her therapist will have her in them ASAP. Right now, it's very difficult for Ellie to walk with her braces on, but they *do* help her keep flat-footed and combat some of the scissoring (crossing) of her legs as she takes steps.

After some retail therapy at the shoe store, we opted for the aquatic version. Ellie's incision was finally healed enough that she could get into the swimming pool and she was, to say the least, PUMPED!

And Then It Was the Weekend!

2010-02-13T18:00:00.000-08:00

Time for another update!

Ellie continues to gain strength at a good rate, yay! Richard and I think that she is very close to being at her pre-surgery walking levels already. Today she zipped around in the stores at the outlet mall (God Bless America :-)), and actually protested when we offered her a ride in the stroller. Obviously, she's feeling more comfortable in her walker too!

We had a really good end to our therapy week. On Thursday, we spent 1.5 hours with our new physical therapist, Jessie. She was awesome! Ellie loved her, as she used lots of cool toys to "mask" the fact that Ellie was actually doing therapy. She gave me lots of good tips, exercises and stretches to do with Ellie at home. On Friday, Ellie had another 3-hour session at the conductive education center. They worked her HARD! She protested a bit, but powered through. Ellie was able to do things that I've never seen her do! She was able to squat down, with feet flat, and touch the floor with her hands while doing it! I wish I had a picture (hopefully on Tuesday, when she's alone in the class). From the squating position, she was able to stand up, using a ladder that was attached at the wall. That movement requires a LOT of strength, especially in the thigh muscles, so I was really impressed at Ellie's ability to do it.

We have also noticed a considerable difference in our ability to dress Ellie and help her with toileting. Because her legs are so easy to move around now, she is able to help us with putting her pants on. She is also able to use the potty much easier (imagine sitting on the toilet without being able to separate your legs...it's not fun, for the child OR the caregiver). We are thrilled by this! So is Ellie, as she's able to expand her realm of independence.

So, we enter this weekend with happy hearts! I know that all three of us welcome a couple days off. We have lots of exploring to do, of course!

We miss you LOTS. I was a little homesick yesterday when I was forced to watch the Olympics via the American feed. It's almost surreal to think that we were in Vancouver a couple of weeks ago, under very different circumstances. BUT, we know that you are loving, praying and encouraging from afar and that buoys us forward! THANK YOU again.

Have a great weekend!

Of course, I'll leave you with some new pictures! Ellie and I ventured out to Downtown Disney (the free Disney "park", filled with shops and restaurants and BEAUTIFUL walkways) after therapy one day, and here are some photos of our mini-adventure:

These are a few pictures I took especially to showcase Ellie's new ability to sit on a restaurant booster seat. WHOO HOO! For 3 years now, we have carried with us our Fisher Price booster seat (with a belt strap and a hard back, adding more security for Ellie) everywhere we've gone. Since the surgery, Ellie has been able to bend her knees perfectly and sit balanced on a "regular" booster seat. I can't even express how awesome this!

So happy to be sitting balanced on a restaurant booster seat!

At this point, she was getting annoyed that I was taking pictures of her sitting tall, so she started with the funny faces as she said, "cheese!". Stinker.

The "free Disney" places only have the princess statues, not the real-life versions, but Ellie was excited nonetheless.

Some nice tourist offered to take our picture together!

Two pink princesses...

Work It!

2010-02-10T16:57:00.000-08:00

Survive the first day of intensive therapy: check!

Ellie did it! Today she had her first full, 3-hour conductive education class at the Conductive Education Center of Orlando (CECO). I was worried that she might protest with some tears when I left the classroom, but she was so distracted by her new friends that she didn't even notice me leave! There were 3 other kids in her class today and Ellie was very interested in getting to know them :-).

I was able to take small peeks into the classroom every once and a while and I observed Ellie working HARD! The first hour consisted of massage and stretching. The second hour included walking, and other "locomotion" activities and the third hour concentrated on standing and sitting. That's a lot of physical activity! I was very impressed with her conductor/instructor, as she seemed very knowledgable and kind. Ellie really seems to like her, which is a definite plus.

For a first day, I thought Ellie did super-great! She was tired and grumpy on the ride home, but she needs to get back into her physical routine. I'd be grumpy too :-). I am confident that every day will be a little bit better and that she's going to accomplish awesome things at this place!

I'm sorry that I don't have pictures for y'all. I had to sign a 500-page legal document, promising I wouldn't take photos of the class, as to infringe on another kid's privacy. Ellie is the only child in class one day per week, so maybe I'll take that time to do some camera-snapping. Until then, forgive me!

12 Days Post-Op

2010-02-08T16:11:00.001-08:00

Video of Ellie walking in her walker today, 12 days after her surgery. Go, Ellie, go!

Staying Put

2010-02-08T16:09:00.000-08:00

We're all in Florida. Safe. Settled. Warm. Happy. It's a very good feeling!

Thank you for your thoughts and prayers during our travels. Richard and my dad did not kill each other and apparantly even had a decent time during their 35-hour drive. Ellie made a few friends on our Orlando-bound flight, which made the time zoom by. Everything went even better than anticipated, yay!

Unfortunately, I don't have a myriad of other details for you today. We were *supposed* to have our first physical therapy session this morning, but our new therapist was sick. So, we made it a "home therapy" day and spent some time walking and doing extra stretching. Ellie is regaining her strength quickly! Today she walked nearly a block, without any assistance, in her walker. Whoop! She was definitely tired after that, but the fact that her legs aren't collapsing as much is a feat (or "feet"? :-))! She isn't quite at pre-surgery levels with her walker, but it's coming fast.

Tomorrow we have our first conductive education session. I'm excited! I'm also preparing my heart for some Ellie-tears. It may take her a few days to get to know and love the new instructor and kids in her class. There's no doubt that she will adjust quickly, but probably not immediately. You can pray about that if you feel inclined :-).

Love you all! Special cyber hugs to all our Canadian loved ones who are freezing, tee hee!

(Here are some pictures of Ellie walking this afternoon and getting her feet wet in the pool. She can't swim for another week, as per the doctor's instructions...so feet-wetting it is!)

Packing, Stretching and Regaining Strength, Oh My!

2010-02-04T11:40:00.000-08:00

Wow, y'all know how to stroke my cyber ego! Thanks for all the comments and requests for frequent updates! I feel as though our daily routine is a bit of a bore, but I'm always happy to "talk" a lot, tee hee!

Unfortunately, our physical therapy sessions were cancelled this week, as our therapist was in a car accident. It's not life-threatening, but she will be unable to work for a couple of months. We feel awful for her.

BUT. This is a temporary therapy reprieve for Ellie, as I just confirmed that she is set to start with her Orlando therapist on Monday morning! We will see her every day next week. Ellie is regaining more strength, so I am confident that she is ready to start her intensive therapy in a few days.

Jelly B'Ellie continues to do some walking in her walker every day. It's fun to see her get used to the way her legs work now. We still need to hold onto her pants-waist, as she will, every once and a while, collapse unannounced. I am getting pretty confident with doing her 3x daily stretches too. I'm still sometimes struck by the irony of me, the liberal arts lover & biology-hater, becoming a make-shift physical therapist!

Richie is en route to Florida. Pray for safety and good weather. And that my dad won't take him out of the will after this LONG, LONG road trip :-).

Sorry no pics today. I'm busy packing and cleaning and getting ready for our trek down to Orlando. We haven't quite made it out of our PJ's today!

Thanks again for your continued support, interest, love and especially prayers. I'll keep updating, I promise!

Home Sweet Home

2010-02-02T15:01:00.000-08:00

We're home! For a few days, at least. These couple of weeks are a bit of a whirlwind for our little family!

The flight home went very well and Ellie had no problem sitting up the entire time. Since being released from the hospital, she has only been on over-the-counter Tylenol and has been managing the pain just fine. I am SO GLAD that part of this journey is over because it was the toughest on my mama-heart.

Ellie has been surprising us with how she's been able to move around since being home. She is AMAZING, if I say so myself! The doctor had said that it would take 4 to 6 weeks after the surgery for Ellie to be back walking in her walker. Well, scrap that, because the girl walked up and down the hallway at home today! It was so cool to see how she was trying to figure out how to work her legs, now that they feel and work so different. I can't WAIT to see what's ahead for her!

Richard and my dad leave for their southern trek tomorrow. They are driving down to Florida. Ellie and I fly down on Sunday. I will probably update this blog less frequently now that the surgery week is over. Unless, of course, you say otherwise. I am eager to please :-).

This Is The Day That The Lord Has Made...

2010-01-31T11:41:00.000-08:00

Wow, what a difference a day, a bowel movement and a good night's sleep can make! :-)

Ellie asked to play on the floor this morning, so we cautiously decided to let her. Wow! She sat up, started crawling around and was completely happy and pain free. It truly feels like a miracle because just yesterday, she was nauseas, weak and very sore.

We DEFINITELY noticed a difference in how she moved around. She has never been able to crawl with one leg moving separately of the other (she "bunny hopped" with both legs moving at the same time), and now she did, without any effort! While sitting, it's now easy for her to put her legs under her bum. Before, her legs would be too tight to move them that way. It's fun to see! Of course, in some ways, her movement is more difficult now, because her legs are weaker and she's going to have to strengthen some of the muscles that have never been used before. Her balance is unsteady, too, as she's learning how to coordinate her new body. THAT is why we have all that intensive rehab ahead of us...

We have happy hearts! Enjoy your Sundays, as we will ours. Tomorrow, we go HOME!

Bustin' Out

2010-01-30T17:06:00.000-08:00

...of the hospital!

We have officially been discharged from the hospital and are hanging out at our hotel suite. While it's very exciting, it's also a tad nerve-wracking because Ellie is still quite sore and immobile. She did pretty good in the car, sitting in her car seat, so we're optimistic about the big flight home on Monday.

Ellie DID have a bit of a "moment" when we got back to the hotel suite. I think she was under the impression that by going back to the "Vancouver House", her body would also return to the way it was before the surgery. She wanted to sit up on the floor and play with her toys as she'd done before. We let her lie down on the bed, but when she tried to sit up, she realized that not only did it hurt, she wasn't able to do it. Bless her heart. Her body is working so differently now, and I think she's sometimes overwhelmed and obviously frustrated. Pray that she will continue to be a trooper and that Richard and I figure out creative ways to keep her happy while she's completely immobile.

Phase one of this journey, the surgery and hospital stay, is OVER. Thank the Lord!!

Stand Up Tall

2010-01-29T16:37:00.000-08:00

Sitting up straight in a low-back chair for the first time. Ellie's balance and trunk control isn't what it used to be, so she was very unsure of herself at first. But, she conquered through and as she got more distracted with her puzzle, was able to sit up better and better.

She stands! The therapists made Ellie some leg braces that go from her feet all the way up to her thighs. This gives her legs extra support, as they are very weak right now. She did MUCH better than I thought she would at standing! She was thrilled to look out the window (understandably, since we have a beeooteeful mountain view)!

She'll kill me for posting this picture when she's older, but it's a good view of her back and you can see some of the leg braces too. She has two tiny incisions on her back, and they are healing really well. Getting up to go to the bathroom is pretty difficult right now, so we decided to revert back to diapers for a bit...hopefully not for too long!

TGIF--The BC Children's Hospital Version

2010-01-29T13:08:00.000-08:00

Night #3: Done. Mostly successful! Ellie was restless during the evening, but eventually fell asleep for a good 8 hours. She had some pain and nausea issues first thing this morning, but they've been resolved with oral meds (and all the puke landed on Grandma, as a good-bye present, ha!). Ellie is completely off IV meds and fluids now, which is a very good sign.

Richard and I spent the morning in the mountains, while Grandma stayed with Ellie at the hospital. During that time, Ellie had another physical therapy session and she was able to sit up on a chair all by herself for a few minutes. Also, she spent about 45 minutes upright in Grandma's lap, so that's a really great sign. This afternoon, they will try standing. Right now, I can't imagine how she would have the strength for that, but we'll see.

During Dr. Steinbok's morning check-in, he made mention of the possibility of being discharged TOMORROW. The thought makes me excited and scared in the same breath! It would obviously be so wonderful to be out of the hospital, but Ellie is still so weak and sore that it makes me nervous to think of transporting her, etc. Hopefully she'll gain more strength in the next 24 hours and we'll be able to spend the night in the hotel suite, sans beeping machines, IV pumps and vital-sign checks!

My mom flies home tonight, so pray that Richard and I will be able to handle all the Ellie-care ourselves. Yikes, it's like we're new parents again! Maybe we need another baby shower? :-)

Glimpses

2010-01-29T06:56:00.001-08:00

...of the "old" Ellie!

Sitting Up: Take One

2010-01-28T16:11:00.000-08:00

The therapist first started by stretching Ellie's legs. Richard and I were astonished at how easily they moved! Normally, we would have to pry her legs apart to separate them because her muscles were so tight. Kinda cool to see!

We VERY GENTLY got Ellie onto Daddy's lap (we were all a little anxious about moving her, but we were able to get her there without *too* much pain). She was quite happy to be on Daddy's lap (we're still not at the "smiling" stage yet...hopefully tomorrow).

The therapist tried to get Ellie to kick her legs up. She was able to do it a little bit, but it definitely takes a lot of effort. It's very obvious as to why we need so much rehab after this surgery...

After we were done with stretching, we took Ellie on her first stroll. Getting her into the stroller was a bit tricky, but Richard was able to do it. As you can tell from the picture, she was very exhausted by the time we got her into the stroller and was still groggy as we hadn't yet stopped the morphine. She was not in the mood for smiling.

This picture definitely reflects her mood after being in her stroller for about 15 min. She was DONE! And TIRED! Sweet thing.

Sweet Dreams

2010-01-28T08:28:00.000-08:00

Night #2: Done. With sleeping success! Praise the Lord!

Richard stayed the night with Ellie and he said that she slept straight from 6pm till 7am, only getting up for about an hour to watch some Sesame Street. You have no idea how wonderful that is! She needed to sleep so badly and the pain is completely under control (when asked if her back hurts, Ellie now responds with, "No, and quit asking all the time!" Ha!).

Today the main mission is to wean her off the morphine. She is still on a decent dose (along with a few other drugs that they're also going to try to wean). As long as the pain doesn't return in the absence of morphine, it will be awesome to get her off that stuff. She is still so groggy and I'm REALLY missing the chatty, happy Ellie.

The physical therapist will be by later this morning and she will probably try to sit Ellie up on the edge of the bed. I am hoping and praying that this will be successful because Ellie is itchin' to sit up and doing so will be a great first step towards recovery (and discharge...can't wait for that! This "hospital hotel" stuff is getting a bit old :-)).

We are optimistic. It looks like the worst is over and we were all able to power through (though I may need some counseling after the night I spent with her yesterday....good thing it's provided free for me at work, tee hee!). Pray for continued healing, that Ellie will be able to get off the morphine and other strong drugs, that she will tolerate sitting up and that Richard, my mom and I will have the wisdom to advocate and care for her as needed.

WE LOVE YOU GUYS!

PS: Sorry for not posting pictures. Ellie decided that her "toy of choice" yesterday would be Daddy's Camera. So, the batteries are completely dead and I have to wait for them to charge!

11:00 AM Pacific Time

2010-01-27T11:12:00.000-08:00

Just a quick update to Chrystie's last post, as she's (hopefully) sleeping now while the rest of us are at the hospital. Ellie is better now it seems, they've started changing over drugs to switch away from the one(s) that are likely to have been making her nauseous; so the hope is that the new meds both keep the pain under control and allow her to keep drinks/food down. She's been much better pain-wise this morning as well, there haven't been any crying spells, and she keeps wanting to 1) watch TV, 2) have a story read to her or 3) pretend to sleep (because that little girl loves to fight *actually* sleeping).

So thinks look to be definitely better than the last post, and one of us will keeps things updated as we go!

-Richard

Poor Babe

2010-01-27T09:47:00.000-08:00

I hesitate to post this because so many of you love Ellie and will find it difficult to read these words and be unable to help her in any way...except, of course, to pray.

Don't worry, THERE IS NO CONCERN FOR HER LIFE.

There is, however, heartache for her pain levels.

Yesterday evening at around 9pm, Ellie started having back spasms. Those are painful in and of themselves, but imagine that your spine has just been cut open and you're having them. AWFUL.

This is not an uncommon side effect of the SDR surgery. The pain is usually managed through morphine and other narcotics. Medications that we now know wreck havoc on our little Ellie's tummy. They have tried a bunch of pain meds, but none seems to be working as well as I (or the doctors) would like. Ellie was pretty much up all night and the spasms were excruciating. It was, without hesitation, the most difficult night of my life, watching my sweet baby girl in constant pain.

They are still trying different drug options. The spasms seem to have weakened, but it's hard to tell. Ellie is still in a considerable amount of pain and it's so very hard to watch.

Since I have not slept since 5:30 yesterday morning, I am now at the hotel suite, ready to get some sleep. I just wanted to update you all and beseech you to continue with your prayers. Until Ellie's pain is managed, she won't be doing any sort of recovery today.

6:30pm (Pacific Time)

2010-01-26T18:41:00.001-08:00

What would we do without the internet, eh?! It is awesome that we get to keep so many people informed, in one swoop of the keyboard! I just left the hospital. Richie is there with Ellie, and I am going to try to catch some zzz's before heading back for the night shift. Ellie STILL hasn't slept, which is frustrating for all of us. BUT, on the positive side, she is super-drugged up now and seems to be pretty much pain free. AND, she ate almost all of her supper! And, friends, we were able to move her legs around a bit and it was UNBELIEVABLE. They are loose and so easy to move!!!!!!

So, pray for SLEEP tonight, for all four of us out here in Vancouver. PRAISE THE LORD today is over and the surgery is done and it all went okay!

3:00 (Pacific Time)

2010-01-26T15:17:00.000-08:00

Ellie is in her own room. I wish I could finish that sentence by saying "resting comfortably", but we don't have that down yet. She is quite drugged up, but fairly lucid. She refuses to sleep and wants to sit up, which she can't. She has to lie flat for at least 24 hours. So, pray that sweet Ellie will succumb to her exhaustion and sleep. Pray also that her pain will be fully managed (it's pretty good, but every time she moves, she gets quite upset, which is pretty hard on the mama-heart).

12:45 Pacific Time

2010-01-26T12:47:00.001-08:00

Managed to get internet, so quick update: Ellie's done with surgery, everything went fine, no complications. Now we're waiting for them to get her to the recovery room so one of us can see her, we'll keep updating when we can!

-Richard

9:30am (Pacific Time)

2010-01-26T09:39:00.000-08:00

Ellie is in surgery RIGHT NOW.

I am just so overwhelmed by all the emails and messages that I just read. This girl is COVERED with prayer and support and love. It's simply amazing.

Everything went smoothly this morning. We made it to the hospital at 6:30, and Ellie didn't once ask to eat or drink, which made our jobs a lot easier. She was quite nervous, especially when they made her wear the hospital gown, but she was easily pacified through books and picture-taking. That little girl is such a trooper.

Thankfully, I was able to accompany Ellie into the OR. There, the nurses put in her IV line, and my little fighter didn't cry once! We were telling each other Sesame Street stories and she was actually laughing at my ugly yellow gown and funny mesh hat. Then, they put the mask over her mouth and nose and she peacefully drifted to sleep. She was never without a familiar face or loving arms the entire time. My heart was warmed.

Now we wait. Dr. Steinbok expects to be out of the OR around 1pm (Vancouver time). He said that it might be longer, and not to worry. I will try to update again once Ellie's in recovery.

We are going to try to rest and calm our hearts as we leave our little girl in God's amazing hands.

Keep praying!

Twas the Night Before...

2010-01-25T20:06:00.000-08:00

Tomorrow is the big day. I can't believe it. I imagine that sleep will be hard to come by for many of us tonight. I also know that there are many people, including myself, who wish they could switch places with Ellie tomorrow. Pray for peace and strength.

We spent the entire day today at the hospital, at pre-admission clinics. It was such a long day, but also really informative. Ellie powered through (per usual) and did really well. I was so thankful to have my mom there with me, to play with Ellie while I spoke with doctor after doctor after doctor. She's also a retired ER nurse, so I relied on her medical expertise a time or two. I am beyond blessed to call her Mom.

Ellie needs to be at the hospital at 6:30 tomorrow morning. Her surgery is scheduled to begin at 7:45. It should take 4-5 hours. Hopefully we will be in an area with internet access so that Richard or I can keep all of our prayer warriors and supporters in the loop.

We expect that Ellie will be "out of it" for at least 24 hours after surgery, as they drug her up with pain meds. Thankfully, we can be with her as soon as she wakes up from the surgery, all the way till the end of our hospital stay. I'm selfishly hoping and praying for a private room!

Pray hard tomorrow. I have full confidence in all our doctors, especially our neurosurgeon, but I am still pleading with God to fill that operating room with angels. Who knows, maybe Ellie will see a few! Wouldn't that be cool?!

We love you all and feel your support. We can't thank you enough.

Till tomorrow, from the Hospital Hotel...

(PS: It was such a busy day that I completely forgot to take any pictures! Sorry!)

(PPS: Richard's here! Thank you, Dad, for braving the blizzard and getting him to the airport on time!)

Sunday Night

2010-01-24T21:10:00.000-08:00

We made it through the weekend!

Ellie, my mom and I had three days of "down time" and we used it to explore Vancouver and surrounding areas. We toured lots of Olympic sights, drove up to the mountains, and did some shopping. Of course, we were trying to distract ourselves from the REAL reason we're here. I think we did a decent job!

Sweet Ellie has been in fabulous spirits, which is a definite answer to prayer. We talk about going to the "hospital hotel" every once and a while, and as long as we reassure her that she won't be alone, she's okay with the idea.

We'll spend most of our day at the hospital tomorrow, taking part in pre-admission clinics. I'm anticipating that Ellie will have to be poked and prodded, so please pray that the veins in her little arms are easy to find. The afternoon will be spent with the physical and occupational therapists. They will conduct more tests on Ellie's legs, so that Dr. Steinbok knows which muscle's nerves to cut on her spinal cord. (Yikes, just writing it makes me nervous!)

Richard is also scheduled to arrive tomorrow in the early evening. Hopefully the nasty Manitoba weather won't delay his flight, because we're all ready for another set of physical and emotional hands to join us!

I'll leave you with a few pictures from the weekend. I'll make sure to update tomorrow. TWO DAYS!!

Let the Appointments Begin...

2010-01-22T07:48:00.000-08:00

Oh, friends. What a great day we had yesterday! Your thoughts and prayers were with us as we spent the day visiting doctors and therapists at BC Children's Hospital. It warms my heart, just thinking about it.

We started the day off with an appointment with the x-ray machine and orthopedic doctor. After Ellie's hips "said cheese" to the x-ray camera, the doctor read the films and relayed his findings onto us. He was impressed that Ellie's hips, although still unaligned, had not regressed in the past year. He then went on to say that there was a possibility that with the rhizotomy (spine) surgery on Tuesday, Ellie's hips may return back to "normal" on their own, eliminating the need for further operations. Oh, pray this will be so! The thought of hip surgery in another couple of years is enough to make cry.

Then, we went on to see the neurosurgeon, Dr. Steinbok. He'll be performing Ellie's surgery on Tuesday. Once again, he was just wonderful. I have complete faith in his knowledge and hands. He continues to believe that Ellie's life will be changed by this surgery and that she's a perfect candidate for the rhizotomy. We asked a bunch of questions, of course, and he patiently answered every one of them. I was encouraged by his prediction that Ellie would be at pre-surgery walking levels within 4-6 week post-op. THEN, after that, the fun REALLY starts, as we see how much farther she'll go!

At the end of our appointment with Dr. Steinbok, he asked ELLIE if she had any questions for him. She was shy and kept saying, "Um, Um, Um..." But, with a little prompting, she ended up asking him, "Is it okay if you fix my legs?" PRECIOUS GIRL.

We will find out more about "surgery day" timetable on Monday, when we return to the hospital for more pre-op appointments.

We then spent the afternoon at the Gait Lab. This is where they test to see which muscles are being used when Ellie walks. It wasn't as exciting as we thought it would be, as they said that Ellie's gait pattern is obvious from appearance, so they didn't have to do any "electrode testing". So, they just did some measuring, stretching, and made a video of her walking across the room.

After all of that, sweet Ellie was TIRED! But, she was such a trooper. Gotta love that girl.

So, now we sit here in balmy Vancouver, twiddling our thumbs for the next 3 days. We don't have any appointments till Monday. We're more than open to suggestions for stuff to do! We can't take Ellie to smaller, indoor spaces, for fear of the germs, so we'll try to be outside a lot. If I'm brave enough, maybe we'll venture out into the mountains. This prairie-girl driver is a little nervous about that!

THANK YOU again for loving us so much. We heard so many encouraging words during our appointments yesterday, that I've really become EXCITED for this surgery. I truly believe it will be a life-changer for our baby.

Snacking makes waiting for the doctor so much easier!

Stretching and measuring Ellie's legs. And, no, she's not in just her underwear! They asked us to bring her bathing suit bottoms for the appointment so they could see her legs better.

Stretching Ellie's legs and measuring the angles.

The Gait Lab video taped Ellie walking across the room a few times. They will analyze the footage and determine which muscles are being used when she walks.

We're Here!

2010-01-20T21:26:00.000-08:00

We made it, we're in Vancouver!

God shined down and it was really amazing, as far as travel-days go. Now, we're tired. THANK YOU for your encouragement and love! All the messages have warmed our hearts more than you will ever know. Even though we don't know anyone in this big city, it feels like we're surrounded by loved ones because you have travelled here with us.

You are loved!

(Some "fun in the Calgary airport on our layover" pics for your enjoyment....)

Leaving on a Jet Plane

2010-01-19T19:26:00.000-08:00

Tomorrow's the big day...when we REALLY get these surgery wheels turnin'! Ellie, my mom, and I leave for Vancouver at 1pm. Wow!

Richard just finished giving me a "how to download pictures from the camera" lesson, so hopefully I will do this blog justice and post lots of updates and pictures for all of you Ellie fans!

Speaking of pictures, here are a few from the past few days. On Friday, we spent the afternoon at our local Children's Hospital, with our beloved physical therapist. She performed the Gross Motor Function Measure test on Ellie. It was a lengthy and tiresome test, but Ellie powered through. Our therapist wanted to test Ellie BEFORE the surgery so that when she re-tests in July, we will be astonished with Ellie's improvement in all 86 of the tested areas! The following are some pictures of Ellie doing her best to accomplish each test task:

Trying with all her might to maintain sitting position with her legs straight...she did it for the required 10 seconds, whoot!

Reaching for Abby Cadabby (if she only knew it was a therapy task, not just "playing around"!)

Sitting up from lying down on her back; something that's very difficult for her to do...what a trooper!

Taking a bit of a break before attempting the next task...

More sitting...

And now to standing!

Just for happy measure, I'll leave you with a picture of Ellie enjoying a bee-ooo-tee-ful Canadian winter day, out in the snow:

"See ya" from Vancouver!

The Sunshine State

2010-01-16T08:13:00.000-08:00

"Why are you going to Florida after Ellie's surgery?"

This is a question I've been asked several times, and I seldom feel as if I have the time to provide a decent answer. So, here goes...

Ellie will be attending classes at the Conductive Education Center of Orlando, four hours at a time, five days per week. She will also be seen by a private physical therapist and occupational therapist (starting at 3 times per week, but then decreasing to once per week as we ramp up the Conductive Education classes).

The obvious next question is, "What in the world is conductive education?"

In a nutshell, CE (Conductive Ed) is a life-changer. Ellie started attending CE classes at The Movement Centre as soon as we moved back to Canada, when she wasn't yet 2 years old. On Tuesday and Thursday mornings, Ellie gets to hang out with her boyfriends (she's the only girl in class!) and Conductors (the teacher/therapist), while she learns how to reach her very highest physical and cognitive potential. Each child has a one-on-one assistant, helping them with the different tasks--stretching, rolling over, sitting up, manipulating objects (toys), dressing, eating, walking (with canes!), sitting, and a hundred other activities. CE is different from traditional physical therapy because it focuses also on daily living tasks and education. I'll steal the synopsis from the Orlando center's home page:

Conductive Education is an intensive, multi-disciplinary approach to education for children with motor disabilities; it combines educational lesson plans with physical activities. In our program, children with cerebral palsy repeat tasks and movements on a daily basis, allowing their brains to find alternative paths to create desired movements like sitting, standing, walking and self feeding. Conductive Education is based on the theory that the central nervous system in children with motor disabilities has the capacity to form new neural connections, despite neurological damage. Conductive Education has the potential to help a child with motor disabilities achieve new movements and greater independence.

I can hardly speak of our local Conductor without tearing up and getting all mushy. We love her and she has not only helped Ellie, but has been a rock for Richard and me. She constantly reminds me that Ellie's potential is endless and gently encourages us to push Ellie to the next level. She (and our "traditional" physical therapist--another person we adore) suggested we look into a CE program for Ellie's rehab. The staff at The Movement Centre recommended Orlando, and, from there, everything seemed to fall into place perfectly.

While our local Conductor and physical therapist would love to be a part of Ellie's post-op rehab this winter and spring, they are unable to provide the frequency of appointments we need. Because of staffing and funding limitations, we would only be able to attend sessions twice per week. That's not enough. It's the rehab that's going to maximize the benefits of Ellie's surgery, so we want her to get as much of it as possible.

So, off to Florida we go! Richard already telecommutes, so he can work from anywhere. Regardless of rehab location, I had to take a 6-month leave of absence from my job in order to care for and chauffeur Ellie. So, it was the perfect opportunity to "go for it" and head down south for some major rehab. Our local CE center offers "Summer Camp" (5 sessions per week, 4-5 hours per day) in July and August, so as soon as we get back home from Florida, we'll continue the rigorous schedule at home. That should bring us to the 6-month post-op mark, when therapy frequency can decrease (just in time for Kindergarten, oh my!).

And, there you have it. A "simple" long-winded, Chrystie-answer to your question!

(Here are a couple of pictures of Ellie at The Movement Centre. I'd post more, but it's really difficult to find pictures of "just Ellie", as her CE is done in a group setting. I don't want to overstep any privacy boundaries!)

Ellie's on Facebook!

2010-01-14T08:03:00.000-08:00

Many of you have tried to sway me into providing Ellie-updates via Facebook, so you will be happy to know that I've succumbed and set up a group for her. I've made it open to everyone, so the more the merrier. If you haven't received an invitation, you can search for the group entitled "Ellie's Cheerleaders!"

The lengthy and pictoral updates will be made on this blog, though, so keep it here for all the nitty gritty details.

Thanks again for all your lovin' and encouragement!

Ellie's Story

2010-01-13T19:34:00.000-08:00

It was raining the day Ellie was born. Warm rain. The kind of rain that makes you want to stick your tongue out and catch a drop of heavenly goodness.

The overcast skies spilled over into my hospital room at Las Colinas Medical Center in Irving, Texas. While I was so relieved to know that my pregnancy would soon be over, and the nausea, swelling, and discomfort would come to an end, I was scared. I knew that Ellie was coming early. Too early. 33 weeks was not enough time in the oven. Yet, we knew that March 15, 2005 would be her birthday because my waters had broken and I had to deliver within 24 hours.

At 6:15pm, Ellie was born. The room was quiet. Eerily quiet. I had spent the last half-hour hollering with each push, and then, within a second, there was silence. My focus shifted entirely to the grey, limp baby at the other end of the room. I could hardly see her, because the bassinette was surrounded by doctors and nurses, working furiously in the silence. They wheeled her out. I thought she had died.

A while later, the neonatologist came into the room...with good news. Ellie was alive! I remember his words, describing her as "very sick", but she was ALIVE. She wasn't breathing on her own so they had to intubate her. However, the prognosis was good. The doctor said her chances at a full and happy life were very high.

Ellie spent 28 days in the NICU (Neonatal Intensive Care Unit). When we brought her home on that glorious day, we waved goodbye to the hospital for what we thought was the last time.

Looking back, I now realize there were many early signs that Ellie had sustained a brain injury during her first few days of life. She was terribly colicky, and for much longer than "the books" described (we didn't sleep for 6 months). She was relatively happy in her Jolly Jumper and Exersaucer, but she never put weight on her legs while in them. Her eyes were crossed from the time we brought her home from the hospital. Ellie didn't roll over until she was 7 months old.

I expressed my concern to our pediatrician and he dismissed her delays as being "preemie issues". He was convinced that she would catch up. At 9 months old, Ellie had surgery on her eyes for strabismus (crossing). The ophthalmologist asked if she had cerebral palsy. I retorted with, "Of course not!" And then I slapped him. (Just kidding.)

It got me thinking. Ellie was 10 months old and was still unable to sit up without support. We were receiving at-home physical therapy (for those "preemie issues") and our therapist suggested we see a neurologist. When Ellie was 11 months old, they put her under for an MRI.

On March 14, 2006, the day before Ellie turned one, we received the MRI results from the neurologist. Ellie was diagnosed with Periventricular Leukomalacia (PVL), a brain injury most often associated with premature birth. It's an injury that affects the white matter in her brain. The white matter sends messages from the brain to the muscles. The messages that Ellie's brain sends to her legs (and, to a lesser degree, her arms and hands), are jumbled up. This manifests itself as constantly tight muscles (spasticity). As a result of the PVL, the neurologist diagnosed Ellie with cerebral palsy.

Of course, our lives changed that day. Our dreams were instantly revised. Our love for sweet Ellie only intensified. And God held our hands throughout.

Ellie is a miracle...not only because she lives, but because she conquers EVERY DAY. She has worked a hundred times harder than a typical child to hit these milestones, but she's done it!

Sat up without support: 12 months
Pulled to a stand: 16 months
Took a step with a walker: 26 months
Went from lying down to sitting up, without any help: 21 months
Speaks in sentences: 30 months
Walked in walker down the block, by herself: 38 months
Walked with 2 canes (with some help): 4 years, 2 months

We have spent many, many hours in therapy. Ellie receives physical therapy, occupational therapy and speech therapy. She is usually in some sort of therapy session 3-4 times per week. That is her normal.

When Ellie was 3 years old, some of her doctors and therapists started mentioning and suggesting that we research her candidacy for Selective Dorsal Rhizotomy, a type of spine surgery. It took a year for us to obtain all the information and opinions from 3 different neurosurgeons. We decided that this would be a great option for our little girl. We opted to have the surgery done by Dr. Paul Steinbok, at BC Children's Hospital in Vancouver. Dr. Steinbok has performed hundreds of these surgeries and the results have been spectacular. He has also practiced with the leading SDR surgeon, Dr. Park (St. Louis Children's Hospital), and performs the same, less-invasive type of surgery. While we would have loved to have seen Dr. Park, the best in the world, we have been so impressed by Dr. Steinbok, and having the surgery done in Canada will save us nearly $50,000.

Ellie's SDR is scheduled for January 26, 2010. Gulp. We will fly to Vancouver on January 20th, in order to attend pre-op appointments. If all goes according to plan, Ellie will be discharged on January 31st, and we will fly home on February 1st.

One of the most difficult aspects of the SDR surgery is the post-op rehab required. Ellie will have to undergo intensive physical therapy for 2 years after the operation. For six months after surgery, she will be required to attend physical therapy sessions 5 days per week. The intensity drops from there. While this is a huge undertaking, it's the physical therapy that will generate the results we so desire for our precious little Jelly B'Ellie. We plan on spending February-June in Orlando, Florida, so that Ellie can attend intensive therapy classes (5 days per week for 4 hours each session).

God continues to calm our fears and hug our souls as we embark on the next step (literally!) of this journey. Thank you all for loving us, for praying for us, and for showering goodness onto Ellie. We are so blessed.

The journey's just begun...