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!!!

Laelia can now stand on her knees!!!

This is her biggest accomplishment to date! Doctors said she wouldn’t be able to do this! (Some said it straight out and others had it in a list of things she likely wouldn’t do.) We only recently started weight bearing on her knees, and now she can do it! For about ten second straight! She’s our miracle! But that’s not all she can do.

Laelia “standing” and saying to the mirror, “I do it!”

Even though she’s not weight bearing as she goes, she knows instinctively to lift one leg and then the other!

And lastly, Lali feeding herself!!! Yay? Um… :-/

Laelia playing Wii (Click on the picture for the video.)

Playing Night Night with Daddy

Signing Blues Clues with Mommy

Laelia trying to figure out how to open the nail polish.

Laelia and Mommy get home pedicures.

Charley got a phone call at work last Thursday from Laelia’s school teacher asking, “Has Laelia ever done this before?” Then he got an email with a video attachment taken from Laelia’s teacher’s phone. It was this one of Lali riding a bulldozer toy at recess.

This is the first time she has moved one of these under her own power! Ever! Usually one of the other kids push her while her feet drag behind her. So it was very exciting to see! I think all this weight bearing on her legs is making them stronger!!!!!!!!

So we went out and bought her some real shoes to put over her AFOs (Ankle Foot Orthotics). They should provide some traction. But the added benefit is that they make me happy. I love seeing Lali in real shoes. These are her first pair of real shoes. Before we had some special shoes that were made specifically to fit over AFOs, but they didn’t carry those in Lali’s size at Payless when we went in. I was about to give up when a nice gentleman measured her AFOs and brought us a box of shoes that fit over the AFOs perfectly! And of course the stripe was pink! Lali kept saying, “I like it!” (Referring to her shoes.) So cute! Now she asks for, “Shoes please. On please! Off please! On please!” All day long.

“See my shoes!”

The AFOs are hiden underneath.

Adding them to the pile.

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

She wakes me up from naps with her mad guitar skills.

She pretends to be asleep.

She talks to her boyfriend on her new play phone.

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 Thanksgiving came with early Christmas presents! Grandpa (my dad) made her a baby wheelchair (caster cart with wheels) and a crawling helper (carpet square with wheels).

(Click on the photo above for the video.)

Check out the personalized plate!

It comes with a pole you can attach and help her along. So when the dog would sit at the door begging for a walk, so would Laelia.

She doesn’t quite have the hang of this one, but we’re still trying.

Here’s some other photos of our Thanksgiving. I didn’t get my camera out much this trip only because I was distracted by all the fun! Laelia spent lots of time with the doggy. They love each other. She’s said nothing but, “Where’s doggy?” since we got home.

Laelia got a plastic baby from the GCBC nursery that we forgot to return. I know, stealing from church, straight to hell, right? :) Sooooooo, maybe mail it back? Maybe once she falls out of love with it? Maybe mail the church $20 and a thank you note?

Laelia rocking and shushing her baby. (Click on the picture above for a video.)

Laelia doing baby’s stretches.

Laelia’s “helping” the girls play cards.

Laelia “helping” Uncle Daniel with his iPhone.

And Laelia “helping” her daddy play the DS. She is yelling, “Look! Guy!”

Physical Therapy

This is the year for mobility! We’re working hard to see Laelia sit up, stand and scoot before she turns three! We found out at our last trip to the PT that her body is still not in the position for standing. That’s what the surgery was for so we’re bummed as you can imagine. But she is much straighter! We have some new hip stretches for her (that she hates) and some new weight bearing positions for her (that she hates more), so we’re hoping all this hard work will pay off before next October. If not, then we’ll see if another surgery can’t do the trick. I’m pretty optimistic though.

It’s weird, sometimes she can’t do something that I would think she could do, like get out of a kneeling position on the couch, and then other times she does something I didn’t think she could do, like scoot across the living room!

Here’s the video of the scooting!

We found out some interesting things this week and I’m not sure what to make of them. Apparently how her hair all seems to come from that whorl in the back and then sweep to the side (she doesn’t have a straight part like me) is due to her arthrogryposis and the position her skull was in while in the womb. Also her labia didn’t fully form since her legs were so wide spread in the womb. It probably won’t affect anything, but who knows. Just random things for Mommy to worry about.

Anyway, one thing the surgery really helped was her feet!

This is before her bath so there’s still crusties on her feet from the casts.

Happy girl!

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Progression of the left foot:

Left foot at birth.

Left foot after minor surgery AND serial casting.

Left foot after major surgery!

Go lefty!