Tuesday, March 31, 2015

#surgeryproblems: Rachel

This week, we're featuring stories about surgery on the blog ... with a twist! Check back all week for tips, insights, and personal stories about surgery. 

Today's post is from Rachel Lance, offering her perspective as Shierry's mom. 

For awhile after Shierry's palate repair, I was pretty focused on how awful it was. But with some distance, I've been able to remember the ridiculous things. The most wonderful/annoying thing about Shierry is that even when she's in pain and exhausted, she's still herself, she still needs to be busy and have fun. 

When you're stuck on a liquid diet and bound to an IV drip, it's difficult to get what you want. But not impossible. 

After a day in which she consumed no calories and rejected a therapy dog, right around shift change, Shierry decided to put on a show. 

She had let just enough water droplets cross her lips for the nurses to be convinced that she would survive without the IV for awhile. Once untethered, she had a grand time pushing the IV stand all around the room. I was so tired, I though I'd fall over, and here was my beautiful, silly girl waltzing with a pole. 

She then decided that we were too boring for her and she crawled to the door hoping to find a better audience. The nurses' station was located right outside the door to Shierry's room. She'd dramatically push the door open, yell "HI!!!" at the top of her lungs to the gathered nurses and techs, and then just as quickly slam the door shut. Then they all started to leave to start their rounds, which Shierry found pretty unacceptable. She abandoned the door game in favor of suddenly darting out into the middle of the hallway at full crawling speed. I'd apologize to whoever was having to step over her and haul her back into the room. She'd break out again. And again and again. It was a pretty uneventful night on the floor, so the nurses weren't, or at least didn't seem to be, too put out by this. They began to expect to see her bounding around and would just laugh and say "oh, hello there, Shierry." 

Eventually, we could tell she was slowing down. But, she refused to get into bed, she so wanted to keep having fun. Instead, she just planked right there on the tile floor, right in the middle of the doorway. Resting, but still a part of the action. 

Check out more posts by Rachel here and here

Monday, March 30, 2015

#surgeryproblems: Meg

Surgery can be a scary thing. Our cranio kids go through multiple surgeries at all stages of their lives and each procedure comes with a certain amount of anxiety and apprehension.

Fortunately, our warriors know that a little humor goes a long way in improving the situation for everyone: the patient, the family, the nurses, the surgeons, and even pets!

So this week, we're featuring stories about surgery on the blog ... with a twist! 

Check back each day for humorous tips, insights, and personal stories about going under the knife. Tweet us your stories and advice using #surgeryproblems

Today's post is from Meg Storie. 

Oops, I meant...
Shortly before I was diagnosed with GERD in 2010, I was in the hospital due to stomach and chest pain. I went through all kinds of tests. I told my friends and family through email from a public computer in the hospital lobby that it might be an "oyster." I didn't realize until it was too late. I meant to type ulcer.

Furry Friends Make it Better
After I got home from the hospital, my husband encouraged me to walk around by asking if I wanted to go see the stray kittens in our neighborhood. "I really like the two color head one." I said. And that is how Rags came in the house to become my pet.

Check out another post from Meg here.

Thursday, March 26, 2015

#ThankfulThursday - Dell Doubles Donations

This #ThankfulThursday, CCA is thankful for the Dell Double the Donation employee giving program that matches employees' donations to CCA. Thank you for doubling the impact of generous employees, like Eric Berglund. Together, we serve more families affected by facial differences, including financial assistance for quality medical care!

Check to see if your employer matches donations here. If they don't, you can ask them to!
If you're interested in matching your employees' donations, contact Jill at the CCA office.

Thursday, March 19, 2015

#ThankfulThursday - Tony Stewart Foundation

Children's Craniofacial Association is thankful for "Smoke!" 
The Tony Stewart Foundation has awarded CCA Kids a "Grant Accelerator Charity" 
Pace Lap Grant of $7,500 

Thank you for choosing kind and supporting CCA! 

Monday, March 16, 2015

#MediaMonday - Scott meets The Rock

Check out one of our CCA Families making news outside the Jimmy Kimmel show...
The Guzzos, Scott, Aaron, and Paula, got to meet Dwayne "The Rock" Johnson last week. 
The photos are featured on Just Jared and Page Six

Way to go, Guzzos!
Thank you for spreading the #ChooseKind message!

Thursday, March 12, 2015

#ThankfulThursday - TMPAA Charities

This Thursday, CCA thanks @TMPAA Charities for supporting our 
Wonder "Choose Kind" Initiative with grant funds.

Join us on Twitter and tweet what you're grateful for every Thursday!

Monday, March 9, 2015

Paint a #BluePinky to End Bullying

During the month of March, CCA encourages our friends and followers to snap a picture of your nails painted with a blue pinky. We'll share the best every Monday on Twitter and Facebook for ‪#‎ManiMonday‬.
The blue pinky campaign is sponsored by Secret and their goal is to end bullying. We support this mission! Jump on board by posting your photos of blue pinkies... let's show them how diverse our hands and hearts are!
Make sure you tag Children's Craniofacial Association in your pictures so that we can share them!

Happy painting!

Tuesday, March 3, 2015

Today is #giveRARE

Today is #giveRARE day. 

Thank you for spreading awareness and kindness all week long in recognition of #RareDisease. 

Now until midnight, Let's show the world just how strong the CCA community is:
If all of our Facebook fans donated just $10, in the Give Rare competition tomorrow, we would raise $50,000 in one day!  We would also most likely win first place and another $10,000 or more!  You can also ask 10 friends to donate $20 and we would blow this thing out of the water.  Here is the link to our page where you can donate tomorrow: www.giverare.razoo.com/CCAkids
Thank you!

Monday, March 2, 2015

Paving the Way to a Kinder World

Today's video is from Kerry Lynch and her adorable daughter, Mary Cate. This dynamic duo is trekking across Chicago to visit schools and spread the #ChooseKind message.

Living with a rare disease, like Apert Syndrome, encompasses many feelings and one of the most positive urges being different evokes is the desire to make the world a better place. The Lynch family is sharing their story and in so doing, they are teaching Mary Cate that she has a powerful voice to advocate for herself and others. Plus, by reaching out to schools, they are reminding kids from all walks of life that kindness is a choice that we can all choose to make the world a happier, more livable place for all of us.

We love the work they are doing to spread awareness and inspire kindness.

WGN recently featured their efforts in a video segment and we believe it will get you pumped up for tomorrow, #giveRARE Day! Please remember to share this link and encourage your friends, family, and social media following to donate. Let's get more kids to Retreat in 2015!!!

You can read more about the Lynch family by clicking these links!
WGN's "Embracing others' differences - and choosing kindness"
Mary Cate's Story
My Mary Cate's FB
Apert Owl

Sunday, March 1, 2015

The Road

This week, leading up to #giveRARE Day on March 3, we are featuring stories of folks living with a rare disease. Today's inspiring post is from Frederick Seitz. Come back daily until Tuesday for real life stories of people who individually may be rare, but are creating a strong community together. 

In 1992 just hours after I came into this world, the doctors left my parents with the same message every time they gave them an update on my progress. There was very little chance I would make it through to the next morning. The doctors questioned the quality of life I would have if I survived. Little did they know a lifetime journey had already begun. 

Ever since I was a kid, I knew I was different from everyone else. I have had my share of experiencing bullying and teasing during grade school many years ago. Along with that, people would stare at me in public and schoolchildren would either run away from me on playgrounds or just stare, not knowing how to react to someone their own age who looked uniquely different. It took a while to get used to as a kid and I developed a strong mind before most of my peers because I knew that when I got older, my parents wouldn’t be everywhere with me. I have also experienced discrimination within the education system especially in grade school. I was finally placed into my hometown district after 4th grade and everything changed past that point. 

Around the time I went into my teenage years, I learned to simply not care what people thought of me and I focused on overcoming great adversity. Some of that included the surgeries throughout my life, some intense and some modest, and dealing with people who got in my way of building my own path to success. Luckily, there were good people along my journey who helped me in ways I couldn’t possibly repay them. They’re the reason where I am today.

From that point when I was placed into my home district, my academic success accelerated rapidly well into high school and college. I built many friendships and significant connections. My life transformed because I took control of my own destiny when I was only 10 years old. It wasn’t clear at first but looking back, I know why I did not leave this world. I am living on borrowed time for a purpose. I don’t know what your spiritual belief is but I know it is God’s will for me to be the master of my own journey, my own destiny. Life is a road and the destination is only up to whose road it is. I do not believe there is such a thing as fate. You cannot control what obstacles you will face but you can prepare if you can see them soon enough. It is your steering wheel. No matter how impossible it seems, there is always a detour. Absolutely no one except yourself can stop you. There is always a way so go find it. A perfect example to resonate this idea is this quotation from one of my role models, Steve Jobs:

“Your time is limited, so don’t waste it living someone else’s life. Don’t be trapped by dogma – which is living with the results of other people’s thinking. Don’t let the noise of others’ opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition. They somehow already know what you truly want to become. Everything else is secondary.”

That really sums it all up. 

Living with Goldenhar Syndrome does make me rare because it is a rare condition but the force of determination my soul contains is more unique and unprecedented. That is what set me apart from the others. My body is a physical vessel that’s just different from most people. I am still here and looking forward to what’s coming next on the road.