Once upon a time there was a little girl named Laelia who was born with internally rotated arms due to amyoplasia, one of the many types of arthrogryposis multiplex congenita (AMC).

It meant her little arms faced the wrong way. Go ahead and try it! Stand with your arms hanging at your sides. Notice how your palms face your body?

Now turn your arms around until your palms face away from your body.

Now imagine living life stuck like that. It would affect your…

Cooking…

Writing…

Pushing a stroller…

Pushing a wheelchair…

Holding a basket…

Holding a hand…

Even holding a magic wand!

This is what Laelia’s arms just did as they hung at her sides.

On February 12th we had surgery in Philadelphia at Shriners Hospital for Children to remove hardware in Laelia’s legs and do some releases in her thighs. (Our lower limb doctor is the amazing Dr. van Bosse!) We realized we hadn’t seen an “arm doctor” in a while since Laelia was so functional. We asked if we could see Dr. Z (Zlotolow). He agreed to see us last minute before he left for the day since we flew there from California. (People from some foreign countries fly less of a distance to come here.) He showed us how Laelia’s arms were rotated. Duh, we know, that’s why we do all those stretches! Then he showed us how surgically rotating her arms would make her more functional.

So we discussed what the surgery would mean for Laelia and if she was cool with it.

She had some different ideas for this surgery. She wanted something to make muscles go into her arms.

Laelia’s vision

We explained that this would not do that, that she didn’t qualify for surgery that could do that since she’s missing the nerve endings and enough healthy muscle for a transfer. Well, at least where medical science stands now. But this would rotate her arms so she could eat lunch easier. She agreed that was something she wanted.

Six weeks after Laelia’s “last surgery for a while” we were once again traveling 3,000 miles back to Philadelphia to undergo surgery. Dr. Kozin and Dr. Zlotolow each took an arm and like synchronized swimmers they gracefully rotated them at the same time. (This was the first time they had EVER done both arms at the same time; and only because we were a special case.)

“You take that one; I’ll take this one.”

“Okay, go!”

And she got out of surgery looking like this:

This picture marked the first time in Laelia’s entire life that she had arms facing the right direction. *getting emotional here* And instead of actively forcing them into this position she was unconscious. Unconscious! I’d never seen her arms like this while she was asleep before!

(They could have rotated them even more, but then she wouldn’t have been able to reach her bottom to use the potty independently. She’s 100% independent in the bathroom now, depending on the outfit. ;))

Four weeks of casts later…

Casts.

Bored.

Hi, casts still.

Then…

Back we flew to Philadelphia! (Making it TWO trips to Philadelphia we hadn’t budgeted for. :))

And casts finally came off!

LOOK AT THOSE ARMS!!!

And that affected her ability to…

Hold Fuzzy Bear…

Color her Scarman coloring book…

Play a game of cards…

 

And even fold her hands together!

Funny story: Charles and I were complementing Laelia’s new arms while she sat there and beamed. Finally we looked at her for her response and without missing a beat she put her fingers together (a feat that’s new since surgery) and said in the most perfect Mr. Burns voice, “Excellent.”

We died laughing.

Oh and her IEP (Individual Education Plan, required for special needs kids to go to school) happened around six weeks after surgery and her adaptive PE teacher, occupational therapist, physical therapist, the school principal, her teacher and aides all spoke about how she can write better, feed herself better, hold things better, etc. She had missed a lot of school for this, but she came back a totally new girl with different abilities! And they were amazed!

So to recap: We walked into the hospital like this:

  

And walked out like this:

This entry was posted on Saturday, May 31st, 2014 at 2:17 pm and is filed under little girl, medical science. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.