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!

~~~

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!

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… :-/

Wiping off the chocolate remains of what was actually Nate’s sundae.

Laelia’s cousins (Nathan and Josh) at Nate’s goodbye dinner.

Lali (on the drive home): “Where Nate?” Me: “He had to go bye-bye.” Lali: “Bye-bye Nate.”

Two minutes later. “Where Nate? (She thinks about it.) Nate bye-bye.”

Oh and Laelia totally wants a tattoo now. (Nate is a tattoo artist.)

Me: “Laelia, do you want a tattoo?”

Laelia: “YEAH!”

Me: “Laelia, do you want hepatitis?”

Laelia: “YEAH!!”

Me (mock scolding): “What do you say?”

Laelia: “Pleeeeeeease!”

I don’t know whether or not to post this under the category of “angry” or “humor,” since it’s so infuriatingly silly it could be either.

(And I’m not quoting anyone word for word, but here’s the story recap.)

I needed Laelia’s PT, OT, Biopsy, Surgery, Newborn, Orthopedic and all her other records to go to Seattle Children’s Hospital for the Arthrogryposis Clinic.  No problem.  So I requested them on January 26th.

25 cents a page?! Fine.

Wait. Wait. Wait. Nothing.

I call my contact at Seattle Children’s. “When are your records coming?” She asks innocently. “I have to get these to the doctors ASAP!”

Blarg.

Our pediatrician is awesome, so one quick call to his office and Lety is rushing out the records that day. Yay!  The hospital records, on the other hand, were a whole other story.

Last month I called Rady Children’s Hospital’s customer service and got all the information (or so I thought) on requesting forms. They sent me to their website where I printed out the correct form, took it to Children’s Hospital personally, watched the lady scan it into their system, called to make sure it was being processed, and then forgot about it entirely, thinking it was being handled.  Nope.  Had my husband call them. They start out, “We didn’t get your form.”

“But it was scanned into the system last month.”
“There’s no record of that. You need to fill out the form and wait five to seven business days.”

So my smart husband waits through a ridiculous phone tree in order to call the lady who originally scanned it into the system (because we knew her name), and she verifies that it’s in there. He calls the Historical Records people back.

“Spoke to Maria and she sees our request in the system on this day.”
“Hold please.” (A looooooooooong time later, like over twenty minutes of total phone time.) “Okay we have it. But we can’t fax records this long.”
“Were you going to call us and let us know that?”
“We didn’t receive your records.”
“You obviously did.”

Oh no, nah ah. Tag. Mama Bear’s turn.

“Listen what is your normal processing time for a request for records?”
“Five to seven days.”
“So when something is sent to you on January 26th, and, say, it doesn’t take five to seven days, what happens then?”
“Um…”
“And even though it says NOWHERE on your website or on the form that records this big can’t get faxed, how or when do you let us know that?”
“Um… you’ll have to talk to Lisa.”
“Oh I didn’t realize I was speaking to someone who couldn’t help me.”
My foot: tap tap tap tap tap…
Lisa: “Well I can’t do anything until you fill out this whole other form anyway.”

!!!

She faxes form. I fill it out and fax it back. I hear nothing. I call back.

“I’m off work in an hour, I’ll come pick them up personally.”
“Oh no, you have to wait five to seven business days.”
“Oh, I already have. Now I want them in my hand.”
“Um, let me ask the lady who prints them out…”

(So if you didn’t catch that, the person I was speaking to before AND the person I’m speaking to now can’t help me.)

“Who? What’s her name?”
“The gal who does the printing? Oh she’s the (long title) person.” (Who apparently doesn’t own a name, poor child.)  “Oh and she says we can’t do a print job the same day of the request… so…”
“So…?”
“Um, we just can’t.”

Fine. So I got them the next day. Oh and that’s a fun story too. Had Lali with me, straight out of PT, and only when I showed up did I realize that the Historical Records people occupied one room in the surgery recovery building. We walked right past both of Laelia’s post-op rooms from previous overnight visits. Lali starts to squirm and cry in my arms saying, “No no no no…” I see the panic in her eyes and realize she associates this place with surgery.  I promise in a soothing voice over and over, “No surgery. Just a quick trip. No surgery, I promise.” We finally get to the door to pick up the records, and I have to request they be put in a big envelope or package and not just in a loose stack. Oh and are they heavy! Want a workout? Try juggling a two-year old, a diaper bag and a stack of arthrogryposis medical records!

After a semi-polite receptionist (who I swear rolled her eyes at me when I tried to explain why my daughter was upset), an hour in traffic and one quick breather later, I was flipping through the records and discovered 15 of my official records were blank pages, and about 20 other pages just had one or two lines on them–all of which I got charged 25 cents for! Grrrrr…

Long story short: We have achieved record-dom! (Yay!) …and only at the cost of my sanity and patience.

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!!!