Sleeping Beauty is out of surgery!

(Hip plate removal surgery marks Laelia’s fifth surgery and she just turned four years old.)

Thank you for all your prayers and words of encouragement and well wishes and positive thoughts and everything else! This was our best surgery yet! And I’m sure all our friends and family contributed to that. My cousin, Josh, also put something on his music blog for Laelia. So sweet.

I don’t know where to start. Well I’ll just say I can’t believe we made it to the hospital by 6:30 a.m. after three hours of sleep. (Considering it was 3:30 a.m. in California.) We’ve looked better. Laelia was her usual chipper self so we gave her the stink eye a lot.

It’s a practice at Shriners Hospital for Children for the anesthesiologist to carry your child into the surgical room without her parents. In San Diego I would get into full scrubs and follow her in and help her get through the scary gas mask, etc. Here I just watch as they take off with her. So how do you get a perfect stranger to carry a child into surgery without the child freaking out?

You get them drunk. Really drunk.

There’s a medicine they give them orally that makes the kids so loopy and crazy that it provides a bit of dark comedy right before they leave. Laelia is the funniest drunkard ever. She’s goes from being scared to grinning her head off at everything. And her big head just bobs like her little neck has no power whatsoever over it’s course. Her cheeks get rosy and she starts talking nonsense too. It’s the best. Charley went to get out the video camera to record my daughter making a right fool of herself in my arms when the anesthesiologist came for her. Then it became a little heartbreaking.

Surgery went well. She was under for only about two hours. A bit of bone grew over the right plate so they had to chip it off before removing that plate. But my biggest fear was evaded: none of her bones broke! And that means this is Laelia’s first ever surgery where she did not go into casts afterwards!!!!!!!!!

She came out of her deep sleep a mess. She screamed her head off. I walked into the room with her crying and the apologetic nurse saying she hadn’t been “doing it long.” Who knows what that means. I went to her side and sang to her. She just cried loudly for a while. The nurses were asking where the pain was. Finally Laelia just shook her head. I asked her, “Are you in pain?” Laelia shook her head. “Are you just mad?” Laelia nodded and said between gasps, “Saaaaaaaaaaaaaaaaad toooooooooooo!” Poor thing hates surgery.

Reassured her pain meds were working (remember our failed epidural last surgery?), I rocked her in a rocking chair and then we transported a calmer version of Laelia to the fifth floor for recovery. She cuddled and fretted and finally fell asleep. So did her daddy.

She woke up and drank a little. A good sign. She hated her IV and would cry out saying she was in pain, but when we asked where the pain was she said her hand. Well her pain should have been in her hips where the surgery was, so I can only assume she was trying this ploy to get us to remove the IV. She would have done anything to get that out and even attempted to do it herself! Good thing they tape it down on kids!

This surgery was just so much easier than others we’ve had. She only needed extra oxygen for about ten minutes. That’s a first. We usually have that thing going by her head for days. By the end of her stays I’m usually pretty light headed from leaning in close. She also had the usual sweaty head and low temp, but that was also minimal. She developed a cough, but it wasn’t bad enough like last time to require the breathing treatments. We even decided to put her in her own clothes and it made her look and feel even better!

I remember after her last surgery clutching the Pain Management brochure they gave us and reading it over and over, searching for ideas that would help. This time we were joking about her stricken look as she told us it wasn’t funny. “It’s not nice! I had surgery!” She pouted. But she was just doing so well we couldn’t help ourselves.

By dinner time Laelia had eaten a ton and wanted her Halloween candy. No nausea this time! She was being polite to the nurses but she was bored. So they let us go home! We were suppose to stay overnight, but we happily fled back to the Ronald McDonald House. Laelia was so happy to see her mound of Halloween candy again until I assured her that she couldn’t have any until it had been a full 24 hours after surgery. It had only been twelve hours!

Now I know surgery, and I’ve experienced it quite a few times, but this was nothing, this was EASY. They even cut into scars she already had so no new scars!

We visited Brysen, an AMCer who is also from California (although a good nine hour drive away from us), while we were there. He had a similar surgery to what Laelia had last year. He had lots of complications though, but seems to be doing better now. Still Laelia tried to say, “There there, it will be alright,” and make him feel better. He put up with her well. I have been loving his mom’s blog since I discovered it: http://www.mylifemydesire.blogspot.com/ (Scroll down to the bottom of the page if you want to turn off the music.)

We got back to the house and had some dinner. We ran into Jen and her family while we were there. Isabel (also an AMCer), Emma and Laelia colored pictures and Laelia even moved around in her wheelchair by herself. That caused some pain issues later, but I think the freedom was good for her. (I’m writing this post the next day and the girls are playing in the playground while I do.)

Laelia didn’t sleep much and she scared us with a low fever and some pain issues, but overall I think this went better than it could have. Her cough seems better this morning too. She just seems happier in her own bed with her own music and pillow.

Does this look like a kid who had surgery this morning???

Three airplanes later and Daddy finally joins us!

I got lost at the airport tonight because of the weird roads (PHILLY!!!), but we did find Daddy and then we went to meet our friends at the local diner.

Our buddies!

I had my first Philly cheese stake. Now I can say I’ve done it.

Sadie (also an AMC’er) and Laelia showed off their standing and walking skills at the diner.

Once we got home, and after my husband showered, we were finally feeling like a family again. That is until Charley showed me that he brought with him a ton of technology so I can blog! (Bye honey!) So I’ve been lost in my computer for the last couple of hours while my husband has been putting up with all of my daughter’s new discipline problems developed over the last nine days. Hehe.

But seriously we have missed Daddy. He is loved. He is appreciated.

Good news! We got a call this morning that Laelia had been bumped up to the first surgery of the day tomorrow! That’s a super great answer to prayer since my daughter is terrified of the hospital. I was so afraid that she would be a scared, shaking mess for the whole day, but now she’s first up!

We have to leave the RMDH at 6:15 a.m. to get to the hospital by 6:30. That will be difficult since we never got used to Philly time and have been sleeping in until 11:00 a.m. every morning and calling it 8:00.

In other good news, Laelia is not sick! No coughing, sniffling or sneezing! That’s a miracle since so many illnesses have been floating around.

Tomorrow is surgery! Finally! I see a light at the end of the tunnel!

Update: It’s now midnight. Laelia is not sleepy. Kill me now.

Updateness: Midnight has come and gone and that cheese stake is not sitting well. Maybe some Canadian candy will help…

Another update: It’s official. We’re not going to get much sleep tonight.

“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!

RMDH Play Area on the third floor.

Bed time story with Daddy long distance.

Watching rented movies all day long. Aka, chillaxin’.

The Walsh kids grew up on us!

Dessert!

“Unpacking.”

SNOW!

Our first snowman! He’s pathetic because we didn’t have gloves and he was COLD!

Children’s Museum

Friends Allison and Ian!

Baby Megan also has AMC!

TRAINS!

I spy with my little eye a bowling pin!

Crazy driver!

Falling asleep in my unpacked suitcase.

City Hall!

I took Laelia to downtown today because I am crazy and like to get lost in cities whose roads make no sense and are rarely marked with road signs!

We actually saw guys putting  up a road sign. Great! Now do that TO EVERY ROAD!

I called my husband (who I had warned before hand that we were going exploring and when we’d probably be calling him saying we were lost) and he was in a meeting! He said he’d call back in ten minutes! Ten minutes! I almost ended up in New Jersey in those ten minutes!!! So I called Chelsea and she helped me find City Hall again down one-way roads and back alleys. She saved my life. Did I mention I get lost every time I drive in Philly? And that Philly sucks? Oh I have? Countless times? Okay well then. We did get to see Independence Hall and the Liberty Bell finally.

Laelia stopped to see the birdies.

The birdies were digging little holes in the ground.

Looking up.

“She’s saying hi.” (Um, Lali, that’s a boy.) “But she has a ponytail!”

“Guys I can’t see!”

Me: “Here’s the most important room in American history!” Laelia: “Okay.”

Aren’t we cute?

Here it is!

So Laelia charmed all the guards and park rangers by being so sweet and showing them all her card with a picture of the liberty bell and asking them if they knew what this was and then telling them she was going to see it! She talked about it non-stop. Then we finally see it and she says, “Okay…” (she’s all excited) “Go for it!”

Me: “Go for what?

Lali: “You ding it!”

Me: “Um, no we don’t.”

Lali: “You don’t ding it? Then what do you do with it?”

Me: “You look at it.”

Lali: “…..”

History is boring.

So I’m dumb. I thought my flight got in at 11:30, but really it was 8:30. I was reading the arrival time for coming home to California, not for Philly. It was still too late for the RMDH, but I was so surprised to get there early. Then I thought, “Oh right there’s a three hour time difference.” So many things wrong with that. Yeah I’m a real genius after a day of travel. So….

We got here fine. The flights were great despite the CONSTANT stream of chatter from Miss Lali. She refused to sleep and she promised me a nap that I never got. Because I’m not counting the 20 seconds of shut eye where the whole time Laelia told me how quiet she was being and then started in with the, “Mama I’m being quiet. Mama? MAMA! Can you hear me? I SAID I WAS BEING QUIET!!! MAAAAAAAMAAAAAAAAAA!!!” Then the lady in the next seat shook my arm to wake me up and said, “Your daughter wants you.” That woman does not have children apparently. Or a heart.

Laelia also refused to wear the ear buds in her ears because they didn’t feel good, but demanded to hear the cartoons. So we improvised.

We met with Doctor van Bosse and he looked her over. Once he found her. She was hiding when he walked in and it confused him for a second there. The look on his face was worth the fifteen minutes of my daughter asking me, “Is he here yet?” from under the table.

It looks like that one scene from the Wizard of Oz.

Is he here yet?

Before the hiding fun we spent twenty solid minutes dancing together. Laelia knows how to step from side to side and spin while holding my hands. We would ask random medical professionals who passed by our door how to square dance but no one knew any steps.

Dr. van Bosse told us a bit about the surgery she’s having (called hip plate removal), he made noises over her KAFOs (which everyone calls “calf-ohs” here instead of Kay-Ae-Ef-Ohs like we do, although they assure me either way is fine) and he said to start thinking about her knee surgery either next spring or summer. We then casted Laelia’s legs to make a mold to upgrade her AFOs and make her some “walking” KAFOs too. The KAFOs she has now are for stretching.

The next day we got a phone call from the orthotist who said that he was surprised our doctor thought he could do three weeks worth of work in two weeks and we had two choices: to extend our trip or to fly back when they’re ready. Neither of those is a real option. We may have to go without.

The next surgery will be on her knees like I said and will involve tendon releases behind the knees and then inserting “eight” plates into the knees to help them grow straight over time. Sounds like she’ll be walking a lot more easily after it’s all said and done!

We also may get to borrow a walker from PT! We’ve NEVER used a walker before. We’ve used a gait trainer and a Kid Walk (which is really a gait trainer with wheels), but never just gone without a seat or help of some sort. Here are three of the five we tried out.

And here’s the first walker experience!

But Laelia liked this “walker” better. (Pssst: It’s a chair!)

Laelia did the parallel bars for Kim (the inspiration for the walker) and was a perfect angel through hip stretches. Stinker. (My secret weapon for hip stretches: sitting on her.) She’s taken a total of six steps on the parallel bars before today (and she was a big pill about those steps and demanded cookies for doing it, which I had to BAKE), but for Kim she was all walk walkity walk walk. Like I said, Stinker!

She also walked using the shopping cart in the RMDH Play Room. That’s not even weighted! I was so proud!

And she’s been nothing but spoiled ever since getting to the RMDH. They gave her a free toy from the toy bin. She chose a Sleeping Beauty Barbie. It says 4 and up on the side. She proudly said, “I’m four! I’m a big girl now and I have big toys!” This made me almost cry, “MY BABY IS ALL GROWN UP!!! Waaaaaaaaaaaaaaaaaaaaahhh!!!” Then she threw a big fit after she got it so I felt secure she still needed a mommy for many years to come.

Our first Barbie. See the joy.

She colored a giant coloring book for Miss Susan on the fourth floor at Shriners. Miss Susan even hung her art on the wall for all to see. We also have gotten lots of different OT-inspired toys like stickers and door hangers and coloring books!

We’ve only been here a few days, but already I’m ready to be done with Philadelphia. Laelia is being well distracted though and we have friends coming to visit so that’s good. I miss my husband. Laelia keeps asking for him. Only another week and a half! We can do this!

Happy Birthday, Laelia!

Cake made by Grandma Christina.

It didn’t last long.

Laelia Sky was born at 1:27pm on October 3rd, 2007. She weighed 7lbs and 2 ounces. Her length was indeterminable, and they were unable to get a foot print for her birth certificate. She was diagnosed with arthrogryposis (amyoplasia) the next morning. I always relive those first days on her birthday.

Home from the hospital after a short extended stay.

Three weeks old with new casts.

Laelia is two months old and all four of her limbs are in casts.

Three months old and down to three casts.

First Christmas! This was right after her first tendon releases (minor surgeries). Down to two casts and two arm splints.

Laelia’s first birthday!

Laelia turns two. (We did not plan that well. She got two major surgeries two weeks apart for her birthday.)

Third birthday. (Surgery got moved to the next month so we could celebrate.)

Now my little one is four! (This year’s birthday surgery is next month.)

Okay I need to stop crying for thirty seconds so I can get through this silly birthday post. Why oh why did she have to turn four?! Part of me freaks out a little every time she gets a year older and still has not reached some gross motor goal. By her third birthday I was worried she wasn’t walking yet, and wondered if she ever would. (The walking party was so much fun!) Now at her fourth birthday I worry about potty training, bullies and if she’ll walk better. But I know that I just need to enjoy these moments with her now. I feel bad listing my fears and worries, especially when I should be celebrating, but it’s the honest truth. Birthdays are hard for me.

She’s growing up so quickly! Four years. Wow. Now I get it when people say they can’t believe how fast the time goes by. Other parents have told me that time flies by when they’re little, but when Laelia was little time just dragged by. I don’t know if that’s abnormal or not. But this last year, especially after she recovered from her osteotomies, time just flew by! Maybe because we had so much fun! We’ve had so many milestones reached and awesome conversations together this last year! She has mastered so much in the last six months alone! I kinda wish she could have stayed three forever.

Plus I’ll miss the look people have when they discover that the little girl who just quoted all those verses or did a math problem or had a whole intellectual conversation while pretending to be a kitty was only three years old.

To celebrate Laelia’s fourth birthday my car decided to have a flat tire. After that was resolved we decided to go to Home Depot to buy some soil and seeds so Laelia could watch them grow (like she’s growing) during this next year. The checkout lady gave her some free flowers because it was her birthday. It made her day!

We then ate lots of enchiladas and even more cake. I didn’t require Laelia wear her KAFOS for the required six hours of stretching on her birthday. (No tears on your birthday!) So it was a pretty relaxed day. I think we needed it. We’re leaving for Philadelphia in 19 days and her pin-removal surgery is in 29 days.

Laelia has grown up so much. She’s a young lady now–willful and spunky and strong. But when I look at her four-year old face while she’s arguing her way out of nap time, all I can see is this:

Happy birthday, my baby girl.

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!

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!)

Standing therapy while being pushed around.

“I’m Daddy.” (Chocolate mouth.)

Swimming!

“These stairs have water on them! That’s silly!”

They’re all sleeping… sure they are.

Tent (before)

Tent (after)

Princess dress for church.

Reading Fancy Nancy while wearing a Fancy Nancy dress.

She called herself Super LadyBug!

“We’re robots!”

“We. Are. Robots.”

Waiting for the school bus on the first day of school.

Waiting for over an hour. (It never came.) Squishing ants.

First day of KAFOs. It was pathetisad.

Ugly boy shoe.

Beautiful Dora shoe with room for KAFOs!

I tore out the tongues and the lining/insoles. Now they fit great!

More standing practice.

Crazy girl.