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!

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.

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.

At PT the other day they strapped Lali up to a giant suspension machine and moved her hovering self across the room while she kicked out her little feet to keep them from dragging. She eventually got a rhythm going: right left right left. She looked in the mirror as she went by and exclaimed with so much pride, “Laelia walking!” I couldn’t help but tear up. “You’re doing it! You’re walking! Look at you!” She grinned her head off.

Didn’t have my camera on me.

I would give almost anything to see her walk one day.  Her doctor, well all three of the orthopedic doctors, said she flat out won’t walk–not enough muscle.  So we wait on technology. Come on engineers! Make me some legs! How hard could it be. (That’s a dare by the way.) (Don’t make me make the chicken sounds.)

PT and OT went really well. Laelia’s teacher from school, Dawn, came over to learn what therapies we do with Lali. By the way, I don’t know how to express how grateful I am for school! I learned that they are working on making adaptions so Lali can join in on snack time. They are already thinking ahead to how they can help Lali move on her own out to recess. And I heard about some of Lali’s friends at school who like to imitate her movements. There are typical (the word we use instead of “normal”) kids in the class so Lali has physical models for movement. But Lali is influencing them! I know another baby friend, Christopher, who did the same thing when they were spending time together. It’s pure flattery from these little kids, but I know it’s not from the older ones. I’m not looking forward to the day when Lali gets teased in big kid school. But for now I’ll not worry on it overmuch.

Taking the kiddo to a well-deserved Disneyland adventure this Saturday.  I have requested almost all of my records for the Seattle clinic in March.  Got some good advice from Jill, our OT, on questions to ask the specialists there.  Bought my flights.  Planning a trip to the Space Needle. It’s gonna be good!

It’s been such an up and down week that I don’t even know where to begin. I think my feelings must be tied up with this goofy Southern California weather: one minute the sky goes black and we get heavy rain and 80 mph winds, then the next minute the sun is shining bright as can be. (And the drivers down here behave exactly the same way in either situation. :-/)

One of the very positive “Up” moments happened yesterday. We received a gift from dear friends that solidified our decision to go up to the arthrogryposis clinic at Seattle Children’s!!!!  We called up the clinic to discover that ALL of the doctors we wanted to see were still available!  This will be our first time at an arthrogryposis clinic because we don’t have anything like that around here! (Well, it’s pretty rare everywhere really.) We did piggy-back on a muscular dystrophy clinic when Lali was little, but amyoplasia and muscular dystrophy are very different. And it was the muscular dystrophy clinic that had us get the muscle biopsy that showed inconclusive results since arthrogryposis, the kind Lali has, does not have any genetic markers or known causes. Maybe the arthrogryposis clinic would never have had us get the biopsy. I think I’ve decided not to think about it too much.

Part of the excitement of this clinic is the chance to see Dr. Judith Hall. She is the expert on amyoplasia and a bit of a celebrity in arthrogryposis circles. She is seeing Laelia March 31st!  Eeeeeeeeeeeeeeee!! We are also seeing Dr. Song and Dr. Hanel for Laelia’s orthopedic second opinions, and just in time for her next surgery evals! I just spent a few hours today trying to get several, six to be specific, different records to forward to the clinic. We needed her newborn records from her pediatrician, OT records, PT records, surgery records from her orthopedic surgeon, orthopedic records from two other orthopedic doctors and the biopsy records from her neurologist.  That is a ton of paperwork and apparently medical professionals have decided that copies of their work should cost me 25 cents A PAGE!  Blarg!  Then my boss walked up to my desk with paperwork that showed my time off request for those dates was approved! I described this whole process to some friends today as part of a crazy and frustrating and fulfilling day!

The other exciting part of this trip is that Laelia and I (Mommy) are going with a friend and her son! I love friends! So fun times ahead. In fact, I have a lot to be grateful for since without this friend I would have never heard of this clinic.

And I’ve decided that this trip totally outshines the “down”s of my week. But one thing I did want to put out there, for those of you who are in the know, is a plea for prayer for my extended family. Whatever the outcome, hard times are ahead for my cousin, well, cousins really. They are in the middle of a heartbreaking situation, and just have to trust they are being carried through it.

Well Laelia is demanding, “Rain please!” So this is my cue to grab her and run out into the storm while she laughs and wiggles. Then we come in soaking wet… which is only fun for one of us. *sigh*

For those of you who joined me in praying that Laelia would sit up (unassisted) before the New Year, you’ve probably already read my New Years Eve Eve (Dec. 30th) post and accompanying videos of how far away that goal is. What you missed were the hours of practice, the weights we bought to strap to her leg to give her leverage, and the tears as I had to give up the idea that Lali was going to do it by my time limit, if at all. New Years Eve we went camping and left Lali with Grandma Deb to get spoiled rotten. Unfortunately I got a stomach bug and we had to cut camping short and come back New Years Day. After Charley dropped me off at home, he went to retrieve Lali from Escondido. About an hour and a half later he was back and Lali was back in my arms. (Her hair looking so much better than how we sent her, thank you Kathy. :))

Charley sat at the foot of the couch where I was sprawled out clutching my stomach. He had tears in his eyes and I started to think, Uh oh, what happened? But I could tell he was processing it as he said, “God answered your prayer.”

Apparently (and if they had known this was a big deal at the time they would have taken a video or something) she sat up using the help of a block-shaped bean bag chair. And when Charley (who didn’t at first realize what they were saying) started to ask a few more questions about it, it turns out it happened New Years Eve–before New Years Day like I had specifically been praying about!

So, you know, cool!

I often don’t have a lot of faith. And I lose the faith I do have if it’s not on my time schedule. But my resolution this year is to have more faith. And let God do what he wants to do in my angel’s life on his own time schedule. It’s hard because that seems SO slow to me. She can’t crawl or stand or kneel or walk, etc. and she’s two years and three months old already. Her physical disabilities seem worse than they are in other kids with her condition too. (Not the arthrogryposis, but the muscle loss.)  But I trust that God will continue to make himself look good by answering our prayers on Lali’s behalf. Thanks for throwing me a bone here, God.

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: