Monday, April 28, 2014

Media Monday: Christian Gets a new Smile

Today's Media Monday post is from On the Pulse, Seattle Children's Hospital's blog. We love this story of Christian's successful smile surgery! Happy Birthday, Christian!  CCA thanks Chryst'l at Seattle Children's for sharing this post with us!

Christian smiling at soccer practice right before his birthday.
Christian at soccer practice before his birthday.
Christian Roberts was as excited for his 12th birthday as any child would be. But this April marked a very special occasion. It was the first time he could express that excitement with a smile.
Twelve years ago, Christian was born deaf and with bilateral facial paralysis due to a rare genetic anomaly called CHARGE Syndrome. For his entire life, the happy, playful Dallas boy who loved video games and LEGO bricks couldn’t move his facial muscles to smile. Christian wanted nothing more than to better communicate with his family, and with others who don’t know sign language.

Christian gets a new smile
Last year, Christian came to the Seattle Children’s Hospital Craniofacial Center to get a new smile. In June 2013 Christian’s surgeon, Craig Birgfeld, MD, removed a small muscle in Christian’s chest. He connected one end of this muscle to Christian’s cheekbone, and the other end to the corner of his mouth, to form one half of a smile.
Christian with Dr. Birgfeld at Seattle Children’s before his second surgery.
Christian with Dr. Birgfeld at Seattle Children’s before his second surgery.
“It’s not a simple procedure,” Birgfeld says. “We spend a lot of time figuring out exactly where to place the muscle so that when it pulls, it makes a smile.”
Shortly after his first surgery, Christian’s facial muscles moved for the first time.
“I heard Christian running into my room laughing louder than I had ever heard,” his mother Molly recalls on Dallas Moms Blog. “He was signing, ‘Look, mom, my smile woke up!’ I proceeded to scream with joy and held my little guy tight, with tears running down my face. That tiny bit of movement was so long awaited and touched the depths of my heart beyond explanation. We were on cloud nine for weeks.”

Christian showing off his smile at his birthday party.
Christian showing off his smile at his birthday party.
The family returned to Seattle in December for the second surgery, when Birgfeld performed the procedure on the other side of Christian’s face. Then the family waited in suspense for the answer to the big question: would Christian get a smile for his birthday?
After months of progress, Christian is now able to produce a fully formed smile — just in time for his 12th birthday.

Wednesday, April 23, 2014

What to Expect: Eye Exam

Today we have a guest post from Meg Storie about her recent trip to the eye doctor!

Meg was born and raised in Columbus, OH. She lives with her husband, David, and their codependent cat. Meg enjoys reading the paper, traveling and doing mundane tasks. She has been part of the CCA family since her first retreat in Indianapolis. Meg was born with Treacher Collins Syndrome (Meg says, "Think of clipped ears on Peeps!") and serves as a provider for children on the autism spectrum and caregiver to the elderly. Meg says, "My happiness is handful of Reese cups, a walk, lots of water and a sense of humor daily!"

image source
It has been over twenty years since my last eye exam. I had small harmless eye checks at the DMV and in the nurse’s office in grade school, but never a thorough one from a medical doctor. I scheduled mine when I scheduled my husband’s annual eye exam. My advice is to schedule your appointment to get your eyes dilated on a cloudy day! Unfortunately, the day I went, it was really sunny.

The technician welcomed and introduced me to five machines. She was patient and walked me through each step as I was tested with each machine. The machines take pictures of the front and back of the eye, shine a light in your eye to check for any blurriness, asses your vision, and also check your ability to focus on an object. I was wondering why I was staring at a little picture of a farm... Too bad it didn't have a pig to go with it! Then, came the glaucoma test... I didn't care for the air puff and the poking, but it is mostly painless. 

Then, I met with the ophthalmologist and had opportunity to share my concerns. I have sensitivity to the sun and my left eye constantly waters. I also told her that I get migraines. She said I have no eyesight issues and that I didn't need glasses. My problems didn't seem to concern her, but she told me she going to read up on Treacher Collins Syndrome before my next visit.  She also suggested an eye drop or eyelid surgery to reduce the watery eye, going forward.

After the exam, David shopped for his new pair of glasses while I went next door to Panera Bread to get a smoothie. By the time we left, my eyes and head were somewhat back to normal to drive home, but I would also recommend walking home if you can. I doubled up my shades and walked out knowing my preventive eye health was taken care of, but we might need to borrow couple Pilot dogs for next time we get our eyes dilated!

Friday, April 18, 2014

Thursday, April 17, 2014

Book Review: Stephen

Today we have a book recommendation from blogger Stephen! Check it out and put it on your summer reading list! 
A book I would highly recommend is Creativity: The Psychology of Discovery and Invention, by Mihaly Csikszentmihalyi.

What especially attracted my attention is the section on what the concept of "difference" is.

The author explains that if you substitute the word "not" for difference, then it helps define what difference is and how it applies to our lives.

Here's an example:  
Four (4) people share the same LIKE for Pizza and one does NOT.  The one who does NOT would be called "different" by the other 4.  The 4 might inquire as to why this person does NOT like Pizza.  BUT, by the answers given and the conversation between individuals, even the people who like Pizza might find out more about themselves which would deepen their own experience in enjoying Pizza (and understanding those who don't).

So if you list the NOTs, then it describes the difference:
Not the same age.
Not from the same school.
Not working.
Not exercising.
Not riding the bus.

By overtly clarifying what is different, the focus can shift on to what is the same about the people in the group. 

For more informative thought exercises, check out the book: Creativity: The Psychology of Discovery and Invention by Mihaly Csikszentmihalyi 

Monday, April 14, 2014

Media Monday: Adam Pearson

Today's Media Monday article features Adam Pearson, an actor with NF, in the new movie starting Scarlett Johansson, Under The Skin. Check out the full article here.

 Photograph: Richard Saker for the Observer
Two excerpts:

"One of the main reasons for taking the role was because it was so moving and honest," says Pearson over a lunch of fish and chips in a south London cafe. "For me, the film is about what the world looks like without knowledge and without prejudice. It's about seeing the world through alien eyes, I guess."

More importantly, Under the Skin gave Pearson an opportunity to challenge what he sees as the stigma surrounding representations of disfigurement on screen. "There's a lot of fear around the unknown. If I can try to be as normal as possible and show there's nothing to fear – either on film or day to day, going round the corner to go shopping for milk – then the more people see it in wider society, the less stigma there is. If I just sit at home and mope, hugging the dog and crying, nothing's going to change."

He points out that facial imperfections are often used as shorthand for evil in films, whether it be Blofeld's eye scar in James Bond or the villain in Disney's recent adaptation of The Lone Ranger, whose face was severely scarred and who was given what appeared to be a cleft palate in makeup. "It's always used very lazily," explains Pearson. "In an ideal world, actors with conditions would play the characters with these same conditions, but that's a way off. Instead, film-makers tend to get a generic, 'normal' actor and use prosthetics. If they'd got Adam Sandler and blacked him up to play Nelson Mandela, there would have been an uproar ... but with scars and stuff, it seems like people are cool with that."

Source: "How Scarlett Johansson helped me challenge disfigurement stigma" by Elizabeth Day

Tuesday, April 8, 2014

April is Poetry Month

April is National Poetry Month! 

What's your favorite poem? 
Celebrate poetry month by leaving your favorite poem in the comments!

I love this one by Shel Siverstein, because it reminds me to be myself at all times... 
that's how we will meet the kind of people we want and need in our lives.