Archive for February, 2010

Another miracle!

Friday, February 26th, 2010


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… :-/


Time with family

Friday, February 26th, 2010


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!”


Records records records

Friday, February 26th, 2010

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!”


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?”
“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…”
“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. :)

Little girl having fun!

Tuesday, February 16th, 2010


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.

Little girl on the move.

Sunday, February 14th, 2010

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. :)

Rainbow Song

Monday, February 8th, 2010

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


Saturday, February 6th, 2010

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. :-D

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.




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.