Laelia Sky

I wrote this last week for a mom who has a six-month old with the same condition as Laelia.  She was worried that because her child barely moved her arms, that this would mean a future of having to do everything for her daughter–brushing her teeth, helping her go potty, everything.  After writing this I decided to share an edited version (the Laelia section) of it with everyone.  So if your child has arthrogryposis or amyoplasia and you’re worried they’ll never do anything with their arms, then be encouraged!  These kids are rock stars!

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My daughter was born with barely any arm muscle too. We did (and still do) daily stretches and weight bearing and activities to get her to move her arms, but it just didn’t seem to help her move. We found out later that she was born without biceps too.  And I was so worried when she was six months old that I’d be doing everything for her.  I mean, she barely EVER moved.  If we saw a flinch we got excited.  Well here I’ll show you; just copy and past the following links to see.

Laelia 3 months-6 months

http://www.youtube.com/watch?v=5qNMkk4iQ6c&NR=1 <– Laelia couldn’t move her arms either
http://www.youtube.com/watch?v=i50exmwoxCI <–first time she ever significantly lifted her right arm

http://www.youtube.com/watch?v=X-Xtw2EjcbE <–her left

http://www.youtube.com/watch?v=-wRlZmYWIdI <–first time she ever moved her right arm at all

http://www.youtube.com/watch?v=LFSJiR5oZs8 <–first time she ever moved her right shoulder to reach

http://www.youtube.com/watch?v=vRjE5EAvXHA <–her left

http://www.youtube.com/watch?v=ulXMBpGcmSQ <–reaching across her chest with her right arm

Okay these videos look downright depressing, right? Look familiar at all? And you can see just how little she moved. But these kids adapt.

1 year later
http://www.youtube.com/watch?v=rGAJPO6QMcA <–Lali lifts both arms her own way

http://www.youtube.com/watch?v=ZYNwHp2q … re=related <–first time she ever feeds herself

http://www.youtube.com/watch?v=KuMxDjz5 … re=related <–turning pages of her toy

http://www.youtube.com/watch?v=HqkzCTPxdA0&NR=1 <–yeah, my kid can play ball

http://www.youtube.com/watch?v=OEHhlUTbSqA <–I invented this and now she can reach things at eye level

http://www.youtube.com/watch?v=Cn0zSvoTr_U <–this video doesn’t show that she got her own arm up on the table too

Laelia at 2 years old
http://www.youtube.com/watch?v=ykztWbAlpfw <–working a caster cart (the poor man’s wheelchair)

http://www.youtube.com/watch?v=C2iuECF2 … re=related <–driving a car!!!

Or more like the Stroll-with-a-two-year-old-in-pouring-rain for Literacy.

She is singing, “Go Laelia! Laelia walking! Yay Laelia!”

The cup holders on her stroller are filled with water. :-/

It was five miles of non-stop rain after every weather report said it wouldn’t rain. We took turns holding an umbrella over Lali’s breakfast so she could eat something as we went. Had to stop several times for different Laelia-related things, and we started in the back of the race due to the stroller so let’s just say we didn’t win. :)  I did one diaper check, but thankful we didn’t have to change her in the downpour.

They closed down Hwy 163 so we could walk on it.

Our shoes were completely soaked: squish squish squish.

For the first three miles Lali yelled, “Rain!! Laelia’s rain!” and was having a great time. Every time we passed a mile marker the event people would cheer Lali on like she was a rock star, and she ate it up! But around mile 4 she was just sick of being wet and cold. She started to say, “Laelia soggy bottom,” over and over–even on the bus ride home. It was awful cute. And her bottom was awful soggy from rain water.

We got home and rung out our clothes. I put them in the dryer and put the little girl in her bath until she warmed up. Then we got pajamas, ice cream from McDonald’s, blankets and cuddles galore.

As for the race, we finished 2020 of 2114. We were beat by a couple of blind people, a guy with bow legs, an 89 year old man and SEVERAL small children. But I only actually saw seven or so people behind us so I’m wondering if some of the people we “beat” were the people we saw abandoning the race because they were in short sleeves and shorts and soaked.

But we did it! Hooray!

Yawning

I have this picture on my desktop at work.

I love that Lauren takes pictures and posts them for me to see while at work! The school bus drops Lali off with Lauren and Ryan on Mondays and Thursdays to spend a couple hours there while Mommy finishes up her work day. When I do arrive, Lali loves to scoot from Lauren’s front door all the way to the driveway to get in the car.

Other fun times with Lauren include:

Swings!

Dress Up!

This is an old one, but look at that hair! She won’t let Mama near her hair! Ha!

I love you, Lauren!!! See you later today!

Disclaimer: No make up, hair’s not brushed and bad angle!!!

We had a great time at Disneyland last Saturday. Laelia was able to enjoy it more and remember what she had experienced better. The last time we took her to Disneyland she was a cute little baby blob, but now she is a little person who could request rides and snacks and point out things to us.

We went with Charley’s family who we hadn’t seen in a while. It was a ridiculously good time and Lali got lots of grandparent time. Lali now says, “Grandma” for all grandmas, “Grandpa” for Charley’s dad and “Peepa” still for my dad. Go figure. (I have no clue where she got “Peepa” from and didn’t even know she could actually say “Grandpa” until this trip.)

Our first ride of the day was Pirates. Bad move. Lali had enjoyed this ride when she was too little to be scared by it, but now it was different. When the ride first got dark she requested, “Lights please.” I knew we were in trouble then. Pirates is a solid 15 minute ride! Right before the first drop with the talking skull, Lali started to shake out of fear. This led to her clinging to me, burrowing into my side and flinging her arm into my lap. I held her tightly which stopped the shaking, and continued to hold her close throughout the ride. I told Charley later that I now understand why guys take girls to scary movies. I enjoyed it. :) I had to peal her off of me when the ride ended. She came out of it with a sense of accomplishment I think. She kept saying with satisfaction, “Bye bye boat!” That said, when Charley suggested Haunted Mansion next, his sister, mom and I–all three–almost clobbered him. :) 

The ride she loved the most was the Fantasy Land Carousel. I wouldn’t have guessed this one. Everyone who has tried to put her on one of those animal figures at the park should know that she hates it. First she gets scared and won’t cooperate, and then she throws a huge stink until all the other moms start giving you looks. Well, she started out very quiet, but she loved it! It was the only ride she told me, “No no no!” when I tried to remove her. Followed by, “Horsey please. Please!!! Laelia want horsey! See horsey!” Followed by the cutest pouts ever. Next time we’re doing that one at least six times in a row.

Her other favorite ride (pretty sure it’s on par with the carousel) would have to be the Enchanted Tiki Room. She still remembers it fondly. If you ask her what’s in the Tiki Room she says, “Birds! Tweet tweet tweet!” And what do they do? “Sing!” And if you start to sing some of the songs, she’ll join in a beat later. So cute!

She also liked It’s a Small World. She was sitting with her grandparents who described her as wide-eyed through the first six hours or so and then more and more overwhelmed and sensory overloaded for the last couple hours. (Yes, the ride IS that long. :)) After that she took a nap in her stroller as we wandered around.

We finished out our trip in California Adventure, and I thought it was funny the rides five full-grown adults endured to please one little two-year old.

It was a good trip, and Lali was on her bestest best baby behavior.  

She has been requesting, “Dizeelan please!” ever since.

Um, so has her Daddy.

Here are some of our pictures! Most of these provided by the Grandparents.

Having just arrived, Babygirl checks the map.

This was her favorite ride.

Horsey!

Grandma kisses.

The blond girls.

Laughing at some inside joke.

She sometimes likes to throw herself backwards in your arms to make you scramble not to drop her while she laughs at your terror. Sorry Auntie Linda!

The three of us are making fun of the baby while Grandpa posses for the picture.

Excited to be at Disneyland!

Rolling that big water-covered marble in Tomorrow Land.

Eating dinner.

The whole group.

Laelia’s Picnic in the Living Room

She calls this “Rockababy.”

San Diego has had some crazy weather lately, and Laelia discovered that she LOVES rain!  She begs, “Rain please!”

Weight Bearing on Knees!

(something January has seen a lot of)

Post Workout Stretches

Laelia’s Christmas Present from her Parents!

She’s kicking it to Mama.

We went to a wonderful physical therapy appointment last Monday night. Well a wonderful OT appointment too, but PT was exciting.  Lali is always better about therapy with the therapist than she is at home with the frustrated Mama! :)  But her new ball is super fun for therapy; she loves bouncing on it and hanging off it.  I’m always impressed with how many things a PT can figure out to do with a giant ball.  It also looks like Lali is getting a bit stronger.  And we don’t even realize that there’s any difference (which is depressing) until we meet with our PT and she notices (which is exciting)! :)  It’s encouraged me to be better about Lali’s weight bearing exercises and hip stretches for sure.

The numbers:

So Lali is 30 degrees from zero (straight) on her right knee and hip and 20 degrees from zero on her left knee and hip.  It’s better than a lot of kids with her condition, but having those contractures are keeping her from being able to use a stander, among other things.  However, we are going to double our leg stretching efforts and see if we can’t get that closer to 15 degrees on both sides.  Or even if we can just get her closer and put a platform shoe on her right foot and…  I dunno.  Of course we have not seen much gain in range of motion in her knees for a long time so maybe she’s hit her limit and needs more surgery.  I’ve researched the knee surgery it requires (a zig-zag Z scar on the back of both knees) and am hoping we can avoid it.  Hip surgery is also something we’re working on avoiding, but it’s looking more and more necessary.  Pray we can stretch out her hips in the next four months!

Even though she’s not quite straight enough, her PT is going to call some vendors and see about different modified standers for her.  (A stander is just a big contraption that straps you into a standing position to put weight through your legs. See picture below.)  So it would be really exciting if she’s able to use one!  The last time she tried to use one, her legs were too bent and her hips were too abducted so it didn’t work at all. Gave us a cool picture though.

Baby Cool.

Our PT is also going to start looking into electronic wheelchairs for Lali. She said she’s thinking Lali will need one by the time she’s three years old. Insurance companies are generally not crazy about replacing them more than five years apart so we may have to get something big that she grows into.  So by the time she starts kindergarten she’ll hopefully be mobile!  It’s fun to consider!

Speaking of kindergarten and the future in general, I’ve been kinda worried about it.  Because she has no mental disabilities (Yay!), Lali will be kicked out of all programs, like her Early Head Start school, at age three (Boo!).  Then we’ll have to find a program that will take her AND change diapers.  (None exist.)  Then we have to hope to figure something out (in the way of taking care of her potty needs) before kindergarten.  I’ll check with the American Disability Act people and see what exactly is covered by the concept of equal access.  I’m sure it will work out, but I worry.  I let worry get the best of me yesterday, and I’m determined not to repeat that today.  Back to focusing on her great PT experience Monday! Yay!

Laelia is so stinkin’ smart! She anticipates the next word in a song or story. She is learning her colors and even though it’s really hard for her, I will catch her saying, “White white white. White sock white sock…” Like she’s trying to remember the color white!

She also has such an imagination! Her duckies have to kiss every time we’re in the bath now. She has a Mama duckie and a Baby duckie who go down the “slide” (the bump in her sit-up bathtub). She made a bread stick “broom” and “beep beep” across the table at Olive Garden along the imaginary road. And she feeds her baby doll, stretches her, gives her milk, sneaks her cookies and takes care of her every whim.

So her achievements these last months definitely outweigh any delays in gross motor skills. Sitting up by herself is not looking like it will happen this year like I’d hoped. I was holding out for a Christmas miracle, but it didn’t happen. Lali gets sitting up practice every day now. I’ve also given her a ton of cookies as motivation… making her somewhat of a cookie monster. But she still seems so close and so far away. It’s that initial hurdle of having enough arm strength to get her far enough up to go the rest of the way that’s the issue. Well here’s for goals for next year! Oh and here’s her progression in videos:

Laelia’s Christmas started out a snuggly one.

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Full of feet and toes and lots of fun.

We found out Daddy’s shoes weigh a ton!

Staying up late ’till decorating was done.

Demanding our presents until we won!

Yes our Christmas was a wonderful one.

A doll for Lali was a great treat!

Seeing Poway lights was really neat!

Learning to share was an immense feat!

Roll my ball and then repeat!

Christmas Day with loved ones, who can beat?