“I’m a bunny dressed up like a duck!”

“And my mom is Mama Bear!”

Mama Bear was the scariest thing I could think of, especially if you’re a medical professional. And since we were trick or treating in a hospital this year I figured I was pretty intimidating.

I have better pictures than this one but I love the shark grins on these two.

We ran into Colette before we left and she gave Laelia a present filled with goodies to help her not be so bored during her long Philly stay. But the best thing of all was the great candy from Canada.  I ate most of it.

Party at Shriners with cake!

It was so much fun for Laelia to go to each hospital floor and find the pictures of ghosts on the doors that indicated which ones were trick or treat doors. She would wheel in and yell, “Trick or Treat!” It was so cute. They loaded her up with candy. One of the perks of trick or treating in the hospital is that no one expects Laelia to be fully functioning. Also no one asks those questions that make us moms cringe: Can she grab the candy? Do her arms work? Why isn’t she walking? What happened to her? etc. Going to see a bunch of strangers for candy can lead to some interesting conversations, but the hospital staff were great! They even had her reach in to get her own candy and do it several times for practice! They were patient and talked with her and we had a great time! I kinda wish I could do Halloween this way every year and just isolate her from the world. But I’d be too afraid that would lead to becoming a hermit and maybe even homeschooling. Hehe.

And her prince came!

The cute couple out for a walk.

We ended the day watching Charlotte’s Web like this.

Oh and she is doing better with her walker! She falls down a lot though. Check it out!

 

 

August 4th, 2011 – We got a Kid Walk!

August 31st, 2011 – Laelia took her first steps with knee immobilizers!

September 22nd – We got full leg braces (KAFOs)!

October 1st, 2011 — Laelia had her Walking Party!!!

Thanks so much to everyone who came to the walking party! We couldn’t have asked for a better group of people to celebrate with us. And thanks to everyone else who couldn’t be there but sent encouragement and/or duckies in the mail! We love you. You all made Saturday the best day ever! And it was so much fun!

I’m so thankful that we can do something nutty like send out an open party invitation to the Internet, and instead of slapping us, our friends and family are there to make it happen. Chelsea did the food (see below) which included duck-shaped cookies and a duck cake! Christina helped clean and pulled all the weeds out of our front yard. Lauren decorated the balloons, Adam drew some giant feet for the wall, and my dad helped by installing a ceiling fan so that the guests would not bake in our non-insulated oven living room.

Early Christmas present!

We had guests from Sacramento, Placerville, San Jose, Bakersfield, L.A. and Escondido, as well as many local friends and family! And five AMC’ers (besides Lali) showed up! And Laelia loved it! She’s talked of nothing else since! She even told me today that she knew the party was to celebrate her working hard at walking, and after her friends cheered for her it made her want to walk even more! Party win!

One of my favorite memories of the day was when Laelia walked across the finish line to get her cake! I had told her for the last three weeks that she would need to actually walk at her walking party. She didn’t really listen to me until I mentioned, “So you can get to the cake.”

But my favorite part of the day was the magical part when Laelia’s best friend, Ryan, walked! For the first time! Without assistance! In Laelia’s room! And more than one person later said, “Well, it is a walking party!”

So thanks everyone who helped us celebrate our beautiful arthrogryposis princess and her five quacks.

 

 

See y’all for the Running, Jumping and Rock Climbing Party!

So Laelia was taking a nap after a ROUGH (I’m talking crying, hitting and biting) day of PT last Thursday. I was sitting on the couch contemplating how I was a bad mother while eating ice cream when I hear Laelia call out, “I don’t want a nap!!!” Okay, she was completely out cold when I carried her limp form into the house just twenty or so minutes earlier. So I did was any good mother would do, I hid I went and checked on her. Well I eventually checked on her. By the time I got to her door she was quiet again. Thinking she had gone back to sleep (and that there was a God!) I went back into the living room to hang out with my dad and Christina. Well moments later I heard what sounded like a door opening. Sure enough that little Turkey was sitting in the hallway outside of her room with a big “I did it!” grin on her face.

And the world of napping changed forever.

Dad had installed the door apparatus while we were at OT/PT and hadn’t even shown her how to use it! She got right off her bed and figured it out on her own. Stinker.

So now I have a child on the move!

Ask and the door will be opened unto you. Her new door knob and chain!

Let there be light! Her new light pull chain.

And lastly the video demonstration. Enjoy.

 

 

 

I promise I have permission from Laelia to post this. This is what we’ve been working on in OT for the past three months. Really since her last occupational thearpist in the South MTU. So after much hard work I give you PANTS!!!

 

Here are a few videos we’ve taken in the last few weeks. Laelia is getting a lot stronger as you will see! She gets up on her knees and behind her caster cart all by herself to knee walk! She’s taking more steps with her knee immobilizers! She’s standing in her KAFOs (knee braces)! And she’s just super adorable in general.

(PS: These videos will not show up if you are signed up for the posts to be emailed to you. You must jump on Laelia’s actual website to view them. You can also try going directly to YouTube to view them, especially if you are using your phone. My user name on YouTube is recordsky. Enjoy!)

 

 

 

 

 

“To God be the glory, great things he has done!” -Fanny Crosby

Tonight my baby took her first steps.

My baby can walk!

My baby can walk!

My baby can walk!

“Nothing is impossible, the word itself says, ‘I’m possible!’” -Audrey Hepburn

Who knew that August 31st, 2011 would be the day the impossible happened! The day we’ve worked towards for years. After ten thousand efforts, a million stretches and hundreds of days in the hospital it finally happened.

I’m in awe! What an undeserved gift!

Laelia is such a gift. One that keeps on giving. A star that keeps on shining.

James 1:17 says, “Every good and perfect gift is from above, coming down from the Father of the
heavenly lights, who does not change like shifting shadows.”

Apparently I’m feeling poetic! But seriously I’m so thankful to God who does amazing things!

Here is a video of her very first steps. I am barely touching her and not helping at all! You are literally seeing her very first steps EVER. Because my husband happened to be home and grabbed the camera, you’re experiencing this with us AS IT HAPPENS!!!

 

(As you can tell, she’s thrilled with the whole process. )

And here’s another video a bit later. Note the improvement in ONE HALF HOUR of work! She will only get faster and better from here on out!

We have a long trip to Philadelphia Shriners coming up: October 23rd to November 10th. This involves intense daily outpatient physical therapy starting Monday morning (the 24th) culminating in a surgery to remove the pins in her legs on November 8th. Then with the help of heavy pain meds we take three planes back to California on November 10th.

For the first time in weeks I’m ready for this trip.

Thank you all for praying! Thank you for the phone calls! Thank you for the emails and facebook messages! Thanks for following our journey! Now let’s celebrate! You’re all invited to a walking party! We’re thinking September 24th or October 1st since the next few weeks are so busy for so many people. If you need more info about the party please email me (Alexis) at recordsky (at) gmail.

You’re part of this journey! Let’s party! Allow us to say thank you for all your prayers and support!

We’re happy. Really really happy!

 

Laelia can now knee walk!!! She took her first steps (on her knees) on 8/15/11!!!

So amazing!!!

I had doctors tell me when she was born that she would never walk. We fired them!

Now we fly to Philadelphia for the best doctor: Dr. van Bosse!!!

Laelia can knee walk!!!

They said NEVER! Ooooooooooh!! They gave up on a baby!! Grrrrrrrr! She’s going to dance on their desks one day. DANCE I SAY!

This demands a celebration so we’re going to have a party! Details pending. Everyone’s invited!

Here are four videos because I went a bit video crazy. (I’m crying in the background for some of these. Please ignore. :’))

Eeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee!!!!

 

 

Laelia likes to walk!

 

Laelia goes boom.

 

We took this one for Daddy.

 

Laelia sets a goal and then walks towards it! Love this!!!

So sometimes my daughter just amazes me. Just knocks me back! Two weeks ago it was while driving home from physical and occupational therapy. I told her that she earned three animal crackers for her good behavior. (Three because she’s three years old.) She said she earned five. (Five because her imaginary friend is five and he was good too.) We went back and forth a bit–three, five, three, five–and finally Laelia says, “How about three AND five! Then I get eight!” And I said, “No, when Mama says three… wait, did you just do math?!” The way I said it must have been funny because Laelia fell into a fit of giggles. And even though I was driving on the freeway at the time, I just had to call my husband at work to tell him.

But smarts aside (because I could go on and on), Laelia’s physical abilities are really taking off too! On Thursday (August 4th) I had the hardest day. It consisted of getting up at 5:00 a.m. to go to work, getting off work and picking Laelia up from school, doing occupational therapy with Karly, then doing physical therapy with Michele, then driving to drop off a prescription for KAFOs at Johnson Orthopedic (that I had to get redone by a California doctor since my Philadelphia doctor had originally done the script), then getting an appointment with Larry Johnson for brace measuring and discussion (casting for the brace is waiting on insurance), then racing to my doctor’s office for my lab work before they closed, then getting home and putting Laelia down for a nap and then waking her up in the middle of said nap in time for our National Seating and Mobility rep to show up. He measured Laelia for her Kid Walk in our kitchen while she cried for sleep the whole time! *whew*

I was cuddling Little Screamers on the couch when my husband got home and asked, all excited, “Where is it?!”

“Where is what?” My brain was back two or three medical appointments ago and then it hit me: WE HAVE A KID WALK!

Ooooooooooooh Ahhhhhhhhhhhh

If you were wondering what Laelia was using to get around at Penny’s party (see pictures below), it was a Kid Walk! We have wanted a Kid Walk for a long time now. A lot of our friends helped us research it too. The problem was that it was $3,000. But our former physical therapist started the process of getting one approved through insurance while we were still going to the south MTU (medical therapy unit). It went like this: CCS –> Laelia’s pediatrician –> Insurance –> National Seating –> Laelia! And each step took begging, pleading, demanding and holding someone’s hand as they did their job. Or maybe I’m exaggerating. It just took a long time. But, boy! It was worth it!

The reason Laelia is adapting well to the Kid Walk is because she’s had a wheelchair for a month now. And how we got the wheelchair was a total blessing! (Stop me if you’ve heard this one.) At the beginning of August we rented a wheelchair for our trip to Kansas City. It was $30 for the whole week. Laelia loved it and it gave her so much independence!  But when the wheelchair rental guy didn’t show up to pick it up, and it had been over our week, I started to worry we’d be charged more. So I was texting and calling him daily to figure out a time for him to take the darn thing back. That Sunday we took the chair to church since we still had it. A lady commented on how well Lali maneuvered in it, and I said, “Yeah I wish we could keep it.” The lady responded, “I’ll pray specifically about this.” (And I was a little surprised by this response. I know we were at church, but most people would have just offered some sympathy!) Three hours later I was still texting the rental guy, but he couldn’t get it that day either. Finally I just asked, “How much would it cost to buy it off you and save you the trip down to San Diego?” I got a reply really fast, “$100 and it’s yours.” That was the cost of renting it for just a month! Now it’s ours forever! And Laelia has been Little Miss Independent ever since! I want to find that church lady and ask her to pray for a million dollars next.

And I know what you’re thinking: ‘But isn’t the Kid Walk just a wheelchair?’ A Kid Walk is actually a gait trainer; meaning the child is suspended in a seat, not standing on her legs like in a walker, and not sitting in a seat like in a wheelchair. It’s something in between. Her feet are on the ground and she can use them to propel her forward. After having Laelia’s wheelchair for so long, the Kid Walk wheels were a breeze for her to master. In fact we had to keep reminding her to use her feet and not her hands! But she’s doing great! And she’s upright!

We took the kid and the Kid Walk to Target for a couple hours so she could practice running into the aisles walking. Two older ladies actually thought this was one of those child leashes. It was something about the way I was holding the handle bar in the back. Laelia has a leg difference (bone length and contractures make one leg two centimeters or so longer than the other) so if I’m not holding the handle then she veers off to the left. One of the ladies actually dragged her friend back to see the child in the “harness and cage.” At first I thought she was joking, but the more I think back on it, I don’t think she was. She kept saying things like, “So this way the kid can’t get close enough to the aisles to grab stuff off them!” And, “That’s one way to keep your kid in check!” I can’t make this stuff up. Another lady started petting my daughter’s head and cooing. Laelia just said, “You’re a nice friend, but I’m just walking.” Later she told me, “That friend who was nice was walking just like me.” She said it in a confused tone of voice, like, So why was she so weird about it?!

We’re going to get a wedge attached to Laelia’s shoe next week that may help her walk straighter. That way I don’t have to hold the handle to her child-cage.

Maybe a psychologist could explain away this feeling I’m having, but it’s a great feeling. I mean, I have a child who is upright! I left her in Sunday School last week standing at a play table with other children! She stood at the little play kitchen in the corner of the room too! She “ran” into the road when I was struggling with some bags last week and I was terrified! “Don’t you know better than to run into the road?!” I asked, horrified. Then I realized that I had NEVER taught her NOT to run into the road. So after that I had a great time teaching my daughter to look both ways, not to run off without me, to stay where I can see her, to hold my hand when we’re in the street and to not run into strangers. I felt like a new parent–a parent of an ambulating child! I always wondered what this would feel like.

So here are some videos of Laelia walking in her Kid Walk. She’s getting better all the time and I’m sure I’ll post more videos.

Penny helping!

David helping!

Just feet!

My favorite memory at the AMC conference. Scroll down to read about it.

I have finally uploaded all of our pictures! Thanks again so much for those who supported our trip out!

(Please don’t miss the words/links in pink, which, if you click on them, will take you to some really cute videos!)

On July 6th we packed up and headed out to Kansas City for the 6th Annual AMC Conference!

 

GROUP PHOTOS

The whole gang.

All these people are chasing me!!!

Front of the line (the perks of arriving late to things)

 

DONATIONS

Laelia’s old AFOs/KAFOs/Dennis-Brown AFOs that we donated to orphans at the conference.

I was hunting for Laelia’s Dr. van Bosse Fan Club hair bow (that I couldn’t find last second) when I ran into ANOTHER pair of AFOs to donate!

We completely filled the donation box! (And still have two pairs of AFOs at home!)

Was my daughter ever this tiny?!!

 

SEEING RYAN AGAIN

(I think she missed him.)

Wrestling!

Screaming for fun!

Just click here to get a sample.

We put them to bed like this…

…and would find them in the morning like this! (They’re still sleeping.)

And they would talk to each other late into the night. It was so cute! To quote Ryan’s mom, “My favorite was, Laelia: ‘Ryan, you have to stop talking soon, it’s bedtime.’ Ryan: ‘Ok’ ….silence for 10 seconds…. Laelia: ‘Ryan, do you want to still talk to me?’”

We ended up watching Dumbo every night. It was fitting since Dumbo had a physical difference and people treated him differently. (Did you know Dumbo’s real name was Jumbo Jr? And those mean elephants changed it just because he looked different?! I think I pulled too many deep things out of this movie due to the sleep deprivation.)

Checking out the wheels on the bed. (Knee therapy!)

Here’s a video of them sword fighting.

And then there were the Oreos that made them crazy…

And here’s a video of us catching Lightening Bugs (aka Fire Flies), which both Laelia and I had never seen before. Kiersten calls this video the Watching Alexis Turn Six Years Old video.

 

WHEELCHAIR RACES AND CRASHES!

 

Click here to see Wheelchair Tag.

Fun, open, flat places to wheel around!

 

My amended name tag after Laelia got a reputation for crashing into people. Instead of saying, “Sorry!” over and over I just started flashing the name tag.

 

SPEAKING OF CRASHES

 

Laelia took this picture. Pretty good, eh? This is my bloody lip after Laelia jumped (for the first time in the pool!) right into my face. I was so proud. (And in pain.) We left the pool with Laelia in tears because she couldn’t stay, and me holding a hotel towel up to my face. We were a sight.

 

TOO MUCH EXCITEMENT!!!

The workshops were… um… so exciting! But not for three year olds.

Taking her out of the workshop to play and watch a magic show… also… so exciting?

Click for video.

Waiting for the elevator back up to our room… it was just an exciting trip is all I can say.

 

OUR MAIN SPEAKER!

 

Ward and Scarman (a doll with all of Ward’s surgical scars on him)

Ward had the kids make their own scar dolls. All those lines on the doll represent scars Laelia has. (All lower body so far, thank the Lord!) They even have matching orange shirts!

Ward loved the kids!

He and Ileana took off with the kids. Yay! Free babysitting!

 

PAINTING!

 

Theresa is Laelia’s favorite “movie star” who paints with her mouth instead of her hands. Theresa (or Auntie Reesa) has arthrogryposis too! Laelia has been waiting so so so patiently to learn how to paint with her mouth for Theresa.

Click here for the video.

 

Laelia also got her face painted! Here she is in line. My camera broke so I didn’t get the butterfly on her face. But it was cute! And of course, Chris, the artist, also painted with his mouth! Laelia stayed really still, so whatever magic juice this guy was using, I want some!

 

BREAK DANCING!

Thanks for the tutu, Kiersten! It as perfect for… break dancing?

Laelia confidently scooted out into a group of boys and then Luca “Lazy Legs” Patuelli, from So You Think You Can Dance, started directing her moves.

You can’t miss this video!!! Kiersten took it, but it was the second time Luca showed her some moves so it was not as spontaneous as the first one.

In fact, here’s a better, more official video done by the AMC documentary gal. Laelia is 4.23 minutes in. It’s short.

But I would love if anyone had that first video when she scooted right into the middle of things and he started telling her how to cross her arms and give a tough guy face and go on her side and lift her legs… stuff she won’t do in physical therapy but she’ll do when break dancing!

 

OUR FRIENDS!

 

Our Ryan (future husband)

Ronan (lower left)

Sadie and her mom, Jessi

Gracie

Ileana

Ward aka Scarman (Melanie, yes she definitely is not buying whatever he’s selling!)

Tracey

Parker! And Sean.

Mik

Elliot and Abby

Paint-covered Elliot and Rob chasing Laelia

They got her!

Bar flies… I mean FRIENDS!

Angie, Sean, Melanie, Ileana and Maria!

And believe it or not, my camera broke on this trip. OR THERE WOULD BE EVEN MORE PICTURES!!! (Thanks to everyone who let me borrow their pictures.)

One of the biggest things I took away from the convention was feeling “normal.” My child wasn’t stared at. Her scooting was normal. Her wheelchair was normal. I started to see kids without clubbed hands and contractures in the airport on our way home as the different ones.  I watched my daughter blossom. She isn’t normally very active (physically) and has no close, local friends with special needs. But at the conference she was in her element. And constantly on the move! She had wheelchair races, she crashed into her friends’ wheelchairs (and into the occasional person… and hotel bar server), she got into trouble for rolling in front of the Talent Show stage (“Where is your mother?”), she laughed her head off and painted and wrestled and scooted and practiced standing all the time for fun. She even started jumping in the pool for the first time, surrounded by other kids with AMC. She gave me a bloody lip doing it too!

But one of my favorite memories is when Laelia scooted her way into a break dance circle. My bull-headed child scooted right into the middle of those tough boys in her little pretty pink tutu. Luca “Lazy Legs” Patuelli didn’t miss a beat and immediately started giving her instructions–”spin around, now put your arms out like this, now go on your side, now cross your arms and give me a tough-guy face.” She followed his every instruction. I think she felt comfortable doing this because she wouldn’t be the “disabled one.” I just realized while writing this that no one made us feel weird for being different. Luca (and the rest of the people there) didn’t ask me, “Can your daughter lift her arms? Is it safe for her to participate? Should you be doing this? Is she okay?” Ugh! Like Laelia is some brain-dead handicapped pity party! These people just ”got it.” I think it’s important to attend conference because it’s “home.” Because you can be normal here when you can’t be normal around any other group. I went there for medical advice and therapy tricks and came away with so much more. It’s one thing to attend a splinting workshop (which I did), and another thing to talk to some moms afterwards who show you how their splints work, and share skin break-down horror stories and show you what gains their child has made so you see the whole picture. Especially when those moms know what you’re going through and can pronounce your daughter’s condition! It was also nice to see the AMC adults and realize that they are everyday folk who are personable and well-adjusted. Such a relief. And I also met a few people who didn’t start walking until they were 4, 5, 9, etc. That made me relax about Laelia’s upcoming fourth birthday and the fact that we’ve not taken a step yet. (Unless you count this one in our room with Ryan’s borrowed walking sticks and him cheering her on in the background. “Go Yayeeah!”)

I’ve been able to make new connections and strengthen old ones because of this conference. I need those connections and that support to survive this journey.

 

Here’s Laelia’s preschool class on graduation day!

My kid is the only fair child in the only wheelchair. No one asks, “Which one is your child?” No one. :)

Lining up!

Finding her place.

Singing the songs.

 

Getting her certificate for completing her first year of preschool!

Laelia attempts to escape from the group picture. Good catch Miss Wilson!

I just liked this one because Laelia and Miss Wilson have the same facial expression in this picture.

Yesterday I asked her how she liked the ceremony and she said (and I quote), “Honey, pleeeeeease.” Really?! Ha!

Today we went to the zoo to celebrate!

Okay fine we went to the zoo because we heard Elliot and her parents would be there and we thought we could weasel in on their vacation.

The girls!

Baby hippo!

Snakes!

Ducks!

Orangutan!

The orangutan council is called to order.

Scooting with the hippo.

 

Fish!

 

In other news, when we got home from the zoo we checked in on Joel’s account, and he has *gasp* $877.15!!!!!!!!!!!! I’m starting to think maybe we can get him to $2,000 by Monday for that $500 bonus. I’m trying to not get my hopes up. I just so want this little guy to have a family of his own! Joel deserves to go to the zoo with his Mommy! Remember every dollar donated to his account is still matched dollar for dollar from an anonymous donor! For a limited time only!! Tax deductible! Go here to donate! Thank you!