Archive for May, 2014

Arm Surgery Results! (rotational humeral osteotomies)

Saturday, May 31st, 2014

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).

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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?

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

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

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Cooking…

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Writing…

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Pushing a stroller…

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Pushing a wheelchair…

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Holding a basket…

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Holding a hand…

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Even holding a magic wand!

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

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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.

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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.)

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

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“Okay, go!”

And she got out of surgery looking like this:

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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…

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Casts.

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Bored.

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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!

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LOOK AT THOSE ARMS!!!

And that affected her ability to…

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Hold Fuzzy Bear…

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Color her Scarman coloring book

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Play a game of cards…

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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:

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And walked out like this:

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hard conversation about grooming

Saturday, May 31st, 2014

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Avoid this guy! Hehe. :)

(Actually that’s me dressed up as my male coworker for Halloween. I won $50.)

(Which leads me to my point…)

I’ve been encouraged to post this publicly since it’s so very important.

This morning was hard. This morning my husband and I sat down over breakfast to explain some family rules to my sweet trusting six year old.

Rule #1: We don’t accept gifts from grown up men unless they get Mommy and Daddy’s permission first or are giving stuff out to everybody. (Like when her wonderful teacher, Mr. P, gives out books to everyone in class.)

Rule #2: We don’t keep secrets from mom or dad.

These are the rules for our six year old. They will be refined and redefined as Laelia gets older.

What brought this about was that Laelia started receiving gifts and attention from a bus monitor. Let me be clear: I truly believe he was just being nice to her; and I don’t think there’s any ill intent on his part whatsoever.

But now she will not accept any gifts from him and we practiced explaining why to him.

Because grooming happens when wonderful, kind people want something from us. Because people you know are way more likely to harm children than strangers. And there’s no reason to give my daughter more attention because she has a disability.

In fact if we teach kids with disabilities to expect focused attention from adults for no reason other than that they are “special” then they won’t be discerning when the wrong kind of person wants to give them that attention.

She asked questions and hubby and I provided answers. No, it’s not okay for someone to touch your body if it makes you uncomfortable EVEN IF they are helping you into your wheelchair or something else you need. Speak up! No, it’s not okay for someone to get too close EVEN IF it’s part of their job in physical therapy or occupational therapy. Tell them when to back off and the good ones will! You have control over your body, even over the parts you can’t move yourself. Your body should be respected at all times. Period.

The conversation went well, and we’ve honestly never had an issue with any of the wonderful adults in Laelia’s life. Laelia is a great self advocate. Also she knows if someone gets mad about our family rules then that’s wrong. A good person will understand.

In one of the most informative blog posts I’ve read on this subject, Checklist Mommy offers the following advice. I couldn’t say it better so I’m just copying and pasting her words here:

“Stop telling your kids not to talk to strangers. They might need to talk to a stranger one day. Instead, teach them which sorts of strangers are safe. You know who’s safe? A mom with kids. Period. Your kid gets separated from you at the mall? Tell her to flag down the first mom with kids she sees.” [quoting a child safety educator on NPR here]

  • It is unlikely your kid is going to be abused by a weirdo at the park (huge sigh of relief).
  • That said, if there is a weirdo at the park, he’s not going to fit the “stranger” model — so stop teaching your kid about strangers! He’s going to come up to your kid and introduce himself. Voila! He ain’t a stranger anymore.
  • Teach your kids about TRICKY PEOPLE, instead. TRICKY PEOPLE are grown-ups who ASK KIDS FOR HELP (no adult needs to ask a kid for help) or TELLS KIDS TO KEEP A SECRET FROM THEIR PARENTS (including, IT’S OKAY TO COME OVER HERE BEHIND THIS TREE WITHOUT ASKING MOM FIRST. Not asking Mom is tantamount to KEEPING A SECRET.)
  • Teach your kids not to DO ANYTHING, or GO ANYWHERE, with ANY ADULTS AT ALL, unless they can ask for your permission first.

See how I said ANY ADULTS AT ALL? That’s because:

  • It’s far more likely your kid is going to be abused by someone they have a relationship with, because most cases of abuse follow long periods of grooming — both of the kid and his or her family.
  • Bad guys groom you and your kids to gauge whether or not you’re paying attention to what they’re doing, and/or to lure you into dropping your guard. Don’t. Kids who bad guys think are flying under their parents’ radars, or kids who seem a little insecure or disconnected from their parents, are the kids who are most at risk.

SO:

  • Be suspicious of gifts that adults in positions of authority give your kids. There’s no reason your son should be coming back from Bar Mitzvah study with a cool new keychain or baseball hat.
  • Be suspicious of teachers who tell you your kid is so special they want to offer him more one-on-one time, or special outings. That teacher who says your kid is into Monet, he wants to take him to a museum next weekend? Say thanks, and take your kid to go see the exhibit yourself.
  • You know that weird adult cousin of yours who’s always out in the yard with the kids, never in the kitchen drinking with the grown-ups? Keep an eye on your kids when he’s around.
  • Oh, and that soccer coach who keeps offering to babysit for free, so you can get some time to yourself? NO ONE WANTS TO BABYSIT YOUR KIDS JUST TO BE NICE.

faith healing (because again?! people!)

Friday, May 30th, 2014

Trigger warning: Sarcasm, faith healing, more sarcasm

*ahem*

There’s a reason we don’t pray for someone’s amputated leg to regrow. Even those with the gift of healing usually draw the line there. I have never seen a group of amputees line up outside a faith healing tent and come out with arms and legs. I’ve known three faith healers (family friend, friend of friend, family member) and all three have never even offered to regrow people’s limbs. (Rude!) We humans reason (correctly) that there’s a natural order to things. Could God regrow limbs? Sure. So why don’t we regrow them through faith? Because we are not lizards (yet).

So why do people insist that God can regrow my daughter’s muscles that she literally does not have? Literally! The anterior horn cells in lots of places were disrupted during fetal development and those body parts did. not. form. And (I’m sad I have to even make this point *sigh*) that fact does not change just because you can’t see it!! (Science!)

If I was born without a liver or foot or brain could prayer create one out of thin air for me? Does God bend the laws of physics in that way any other time? (Imagine playing Monopoly and then the creator of Monopoly is all, “Randomly all properties will now be used as tarot cards. Oh you have Park Place? That means you’ll be unlucky in love. But hey you’re winning! How? No clue!”) Because that’s what you’re saying. Just realize that. That right there. You’re saying that!

If you pray, pray normal things. (Talking to unfathomable cosmic creator of all things with your mind = normal!) Okay, like I pray she works hard in physical therapy and that her goals are worked toward with patience and with grace. I pray she learns how to navigate the world with the incredible body she does have! (Because she’s different, not tragic.) I pray for wisdom for us as we make medical decisions on her behalf. I pray for technology to catch up to need. (But I’ve given up on insurance catching up to need a long time ago.) I pray for her to have this light that shines in the dark spots of our culture. I pray she grows up to help the poor and fight injustice. And today I prayed for the poor unaware bully who got her lip! (Note to bullies, don’t call my daughter “bossy.” It somehow gives her cosmic authority to take charge of the correction of your mistake, known to you as “bossing you more.”)

Heck I can’t tell you what to pray, go nuts! Pray she grows wings! Because wings!!!!

Just, I don’t know, please see arthrogryposis logically and don’t get stinking mad at us or God when the laws of physics don’t go topsy turvy at your prayer missives. My kids will do amazing things and “prove doctors wrong” but it will likely happen within the realm of reality and follow the rules of the universe.

PS: My son is also missing muscle, but not as notably so he has received considerably less offers of miraculous healings. Don’t worry, he’s not feeling left out. Unless you start offering my family faith healings *and* cookies. Which is only polite.

PPS: But but but! What about Jesus and the dude’s ear or part of St. Augustine’s leg or stories like that? Most faith traditions have miracles or healings that held some purpose. I think we could *at least* agree these are exceptions to the rule.  And I am referring to modern, has-access-to-Internet faith healers in this post.

PPPS: Chocolate chip cookies with chunks of brownies in them. No store bought crap.