So this is Laelia’s last Christmas as an only child. (Cross your fingers!) And we had a thrifty Christmas because we are saving up for her brother’s medical costs and ransom. Plus her actual Christmas present was her walking sticks she got earlier this month. But she thought it was an extravagant Christmas because, according to her, the presents cost “maybe eleven or something!” (Asked if that’s a lot she loudly answered, “It is!”)

Yes it’s a cookie. But it’s a cookie she can eat FOR BREAKFAST!

Click here for the video of her opening her stocking. It was filled with rocks painted by our friend Lauren. She played with them for FOUR hours. (Then she begged to sleep with them at night.)

Yes that’s a hammer. Her grandparents got her some geodes (yes the child loves rocks!) that you break open to see the crystals inside. So we got out our hammer, wrapped it up in tissue paper and let her open it. She was all, “It’s a hammer! Yay!” She was excited even though she had no idea what it was for. She played with it for quite a while. Ah four year olds. Then she made Mommy go outside in her slippers and break open all her geodes.

She also got some bubbles that I found when cleaning out her closet. Seriously this kid would have been thrilled with rocks from the yard and her own junk as long as it was wrapped up and she was the center of attention. I wonder if we’ll get away with this next year.

But don’t worry, grandparents and friends made up for it plenty.

Oh and Laelia said thank you without prompting for each and every gift. *Melt my heart!*

And to figure out who she’s talking about go here.

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

(Sorry for all the crying in that second video. )

Hehe, she walked right into the kitchen. Then I said, “What do you want to do in here?” And she said, “Bake a cake.”

So we did!

She walked all over the kitchen!

She practically made the entire cake herself! (It’s crunchy…)

Laelia got cake mix and frosting as a present from church this morning!

The cake came like that. *do de do*

Celebrating tonight!!!

Can you believe this?!!!!

Laelia’s first pair of high heels!

Getting ready to do the princess walk with her pediatric crutches!

She walks much better! Click here for the video!

And she stands/balances much better! Click here for the video!

So after: 1. seeing my favorite AMC’er with wedges duct taped to his shoes, 2. getting an email from someone in our AMC support group telling me she saw Laelia’s video and that I need to put a 1 cm cork or something under Lali’s heels, and 3. a random person saying, “You know with her knees bent like that it would be hard to walk,” I FINALLY gave the girlie some heels.

But if her doctor asks then we call them “orthopedic wedges.” That’s just ‘tween us girls. *wink*

Yeah that’s them together. Awwwwwwwww.

Anyway, she did really well! I mean she just started really taking a few small steps in a walker this month so these crutches are major league for her.

Getting up is hard.

She fell back on me a lot.

She doesn’t know about this.

I don’t even know what she’s doing here.

Walking rock star!!!

Here’s a long video of her doing it for the first time if I remember correctly. Here’s another shorter video of her second or third attempt. I was just thrilled with the fact that she tried them and didn’t get scared! Ever since we got her KAFOs she’s been a little afraid of heights. “Heights” being the whole three feet from her nose to the ground.  So I’m thrilled Laelia was willing to even stand up with those wobbly things. I think falling practice in PT and doing the parallel bars has really helped her overcome her fear. I went online that night after we got home and ordered her some crutches of her own. (I got some good advice to not wait on insurance like we have been.) They should arrive Thursday! I’m so excited! Early Christmas presents! And Laelia is excited too! She doesn’t treat walking like other physical therapy excercises, but revels in the independence. Her doctor (van Bosse) commented in an email after seeing her YouTube videos, “For her, learning to walk isn’t a chore, it’s a passion.”

When I asked her what color she wanted her crutches to be she was so impatient, “Green! Or pink! Or white! Just buy them!” Ryan’s were blue, do you want blue too? “Yes. Or black. Or purple!!!” How about princess purple? “Yes! Are we buying them now?”

Taking steps since August 31st, 2011!

One of my AMC mommy friends found this video online the other day. It looks like a video for occupational therapists to get an overview of arthrogryposis. That’s awesome! When I was watching it I spotted four pictures that were very familiar. They were familiar because I took them. Two are of my daughter, one has my daughter in it but it’s hard to see her, and the last one is of her AFO (and my husband’s left butt cheek). One of those pictures even shows my friend, Chelsea, doing Laelia’s hip stretches.

Google is credited for all the pictures. I guess my name is Google.

I actually love the video. I was thrilled to see my little girl in it, as well as a few of her friends. I think more videos like this should be made available. I have given permission to a few people to use my daughter’s image for OT or PT presentations. The Child Development staff at Rady Children’s Hospital knows they can take pictures now and get permission later. I can’t help it that my daughter is gorgeous (“Gorgeous” is even the nick name her Grandma calls her), and everyone wants to use her picture.

But now I do want to be clear: You must ask permission to use my daughter’s image. If it’s for OT or PT-related things, you’ll get it. If it’s for AMC awareness, you’ll get it. If it’s for something silly, you’ll get it. If it’s for a listing of beautiful children, you got it. But if it’s for bullying or supporting an agenda that’s political or religious, you won’t get it.

Okay?

Great. And now I feel compelled to balance out the universe by taking a random picture off the Internet and crediting Google for it.

Kitten with arthrogryposis.

Picture by Google. Duh.

Sleeping Beauty is out of surgery!

(Hip plate removal surgery marks Laelia’s fifth surgery and she just turned four years old.)

Thank you for all your prayers and words of encouragement and well wishes and positive thoughts and everything else! This was our best surgery yet! And I’m sure all our friends and family contributed to that. My cousin, Josh, also put something on his music blog for Laelia. So sweet.

I don’t know where to start. Well I’ll just say I can’t believe we made it to the hospital by 6:30 a.m. after three hours of sleep. (Considering it was 3:30 a.m. in California.) We’ve looked better. Laelia was her usual chipper self so we gave her the stink eye a lot.

It’s a practice at Shriners Hospital for Children for the anesthesiologist to carry your child into the surgical room without her parents. In San Diego I would get into full scrubs and follow her in and help her get through the scary gas mask, etc. Here I just watch as they take off with her. So how do you get a perfect stranger to carry a child into surgery without the child freaking out?

You get them drunk. Really drunk.

There’s a medicine they give them orally that makes the kids so loopy and crazy that it provides a bit of dark comedy right before they leave. Laelia is the funniest drunkard ever. She’s goes from being scared to grinning her head off at everything. And her big head just bobs like her little neck has no power whatsoever over it’s course. Her cheeks get rosy and she starts talking nonsense too. It’s the best. Charley went to get out the video camera to record my daughter making a right fool of herself in my arms when the anesthesiologist came for her. Then it became a little heartbreaking.

Surgery went well. She was under for only about two hours. A bit of bone grew over the right plate so they had to chip it off before removing that plate. But my biggest fear was evaded: none of her bones broke! And that means this is Laelia’s first ever surgery where she did not go into casts afterwards!!!!!!!!!

She came out of her deep sleep a mess. She screamed her head off. I walked into the room with her crying and the apologetic nurse saying she hadn’t been “doing it long.” Who knows what that means. I went to her side and sang to her. She just cried loudly for a while. The nurses were asking where the pain was. Finally Laelia just shook her head. I asked her, “Are you in pain?” Laelia shook her head. “Are you just mad?” Laelia nodded and said between gasps, “Saaaaaaaaaaaaaaaaad toooooooooooo!” Poor thing hates surgery.

Reassured her pain meds were working (remember our failed epidural last surgery?), I rocked her in a rocking chair and then we transported a calmer version of Laelia to the fifth floor for recovery. She cuddled and fretted and finally fell asleep. So did her daddy.

She woke up and drank a little. A good sign. She hated her IV and would cry out saying she was in pain, but when we asked where the pain was she said her hand. Well her pain should have been in her hips where the surgery was, so I can only assume she was trying this ploy to get us to remove the IV. She would have done anything to get that out and even attempted to do it herself! Good thing they tape it down on kids!

This surgery was just so much easier than others we’ve had. She only needed extra oxygen for about ten minutes. That’s a first. We usually have that thing going by her head for days. By the end of her stays I’m usually pretty light headed from leaning in close. She also had the usual sweaty head and low temp, but that was also minimal. She developed a cough, but it wasn’t bad enough like last time to require the breathing treatments. We even decided to put her in her own clothes and it made her look and feel even better!

I remember after her last surgery clutching the Pain Management brochure they gave us and reading it over and over, searching for ideas that would help. This time we were joking about her stricken look as she told us it wasn’t funny. “It’s not nice! I had surgery!” She pouted. But she was just doing so well we couldn’t help ourselves.

By dinner time Laelia had eaten a ton and wanted her Halloween candy. No nausea this time! She was being polite to the nurses but she was bored. So they let us go home! We were suppose to stay overnight, but we happily fled back to the Ronald McDonald House. Laelia was so happy to see her mound of Halloween candy again until I assured her that she couldn’t have any until it had been a full 24 hours after surgery. It had only been twelve hours!

Now I know surgery, and I’ve experienced it quite a few times, but this was nothing, this was EASY. They even cut into scars she already had so no new scars!

We visited Brysen, an AMCer who is also from California (although a good nine hour drive away from us), while we were there. He had a similar surgery to what Laelia had last year. He had lots of complications though, but seems to be doing better now. Still Laelia tried to say, “There there, it will be alright,” and make him feel better. He put up with her well. I have been loving his mom’s blog since I discovered it: http://www.mylifemydesire.blogspot.com/ (Scroll down to the bottom of the page if you want to turn off the music.)

We got back to the house and had some dinner. We ran into Jen and her family while we were there. Isabel (also an AMCer), Emma and Laelia colored pictures and Laelia even moved around in her wheelchair by herself. That caused some pain issues later, but I think the freedom was good for her. (I’m writing this post the next day and the girls are playing in the playground while I do.)

Laelia didn’t sleep much and she scared us with a low fever and some pain issues, but overall I think this went better than it could have. Her cough seems better this morning too. She just seems happier in her own bed with her own music and pillow.

Does this look like a kid who had surgery this morning???