Sunday, May 26, 2019

Microtia, Atresia, and Van Gogh

Tian has microtia and atresia of his right ear.  This just means that his right ear never developed fully in utero.

Just after adopting the boys, I wrote "Fixing Our Boys."   (That ASLized video is timeless! Still worth a watch, if you've not seen it.)

This boy has had crooked haircuts for years because
he wants to keep his right ear mostly covered up.
(And because I'm a lousy barber.)
Tian is nearing age 10 and we've had many discussions about his ear.  When he was little, he could not have cared less about the appearance of his ear, but some time in 3rd grade, he started wanting to keep his ear covered because he was getting unwanted attention over it.

Selfishly, I adore his ear.  I've reminded him that his ear helped us identify him in photos and even a video we got of him before we met him in person.  I remember watching that video over 100 times, pausing it at 5 seconds when I could see his right ear.  That's when I knew for sure that it was him.  (It's difficult to identify someone in a video when you've ever only seen still photos of them. Now that he's been my son for 8 years, it's hard to remember not knowing for sure that was him!)

When we first let him know that after he turns 10, we would look into a prosthetic ear, his immediate question was, "Can we make it really big so I have one regular ear and one huge ear?"  <insert laughter>  Umm, the point is to make it so you have two nearly-identical ears, but I get how that would be fun at parties.

Tian is just funny.  Anyone we come across lets us know that.  When we were recently at Dell Children's after he injured his hand, as each new medical professional entered the room, Tian would ask, "Are you here to torture me?"  After the nurse explained how they would medicate him, then pop his joint back into place, she ended with, "Do you have any questions?"  He quickly asked, "What is 6,294 times 351?"

A dental hygienist said she tells a story about Tian everywhere she goes. When he was about 8 years old, she was cleaning his teeth and asked him how he was doing.  He answered, expressionless, "I'm dead inside."  She quipped back, "Ooh, I've never cleaned a zombie's teeth before!" to which he replied, "Yeah, but have you ever cleaned a Chinese boy's teeth?"  That's Tian.

Steve Jobs and Van Gogh
So it was no surprise when his class created a "living wax museum" for school, he chose to be Vincent Van Gogh.  Of course he did.  He wanted to capitalize on the gore, shock value, and humor of that choice.  He made a great Van Gogh!  He originally had a bloody-looking bandage around his head but decided instead to just push his hair back into the hat so his missing ear would be more obvious.  I loved that he didn't mind "showing off" his special ear for this event.  I was hoping his new boldness would stay with him, but after the wax museum, he went back to wanting to keep it covered up.

I love how the younger kids are watching his wax figure come to life!

Tian also loves all things science.  Rocks, bones, solar system, plants, human body. He loves it all.  He's watched multiple surgeries and even childbirth on YouTube.  So a couple of months ago, when we asked if he wanted to see what ear reconstruction surgery looked like, he absolutely did!  Just a couple of minutes into the video, (Warning! It's graphic.) he said, "Yep, I definitely DON'T ever want to do that!"  We are glad because when we looked into it, the risks seemed to far outweigh any potential benefit.  He does want a prosthetic ear.  He'd prefer to have one that slides on and stays on with glue if it will work with the bit of cartilage he has.  Just looking at this website of prosthetics people have gotten after failed reconstruction, I'm glad we ruled out surgery quickly.  

I hope someday he will just be comfortable with his ear the way it is, but I don't live in his body, so it's nice to know he has this option with the technology and materials for prosthetics getting better all the time. 


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