Thursday, April 30, 2015

#ThankfulThursday - Morgan Meck's Match Play Invitational

Thank you for supporting CCA!

If you'd like to host a golf tournament for CCA, contact the office. Your support helps children with facial differences get the quality medical care they need by offering financial assistance to families who must travel to obtain care.

Wednesday, April 29, 2015

#ClickwithCompassion: TED Talk

This week, we're examining how we can prevent bullying and make the world a kinder place. Today on the blog we are featuring a TED Talk released this spring, when Monica Lewinsky reentered the public sphere with a new campaign #ClickwithCompassion. Her story, now infamous, is also a powerful examination of the culture we've created. Her critique of the "Price of Shame" is a way to reframe the conversation on shame, differences, bullying, and kindness. Her advice is to consume media responsibly and #ClickwithCompassion - your choices are your voice and your voice can overwhelm the bullies.

Tuesday, April 28, 2015

#ChooseKind Wonder Kits are an SEL Tool for Schools

One of CCA's main programs is to promote the #ChooseKind message in schools across the US. CCA families, teachers, guidance counselors, and school districts are bringing #ChooseKind Wonder Kits into their classrooms to help all students develop empathy for one another, accept each other's differences, and create healthy friendships. RJ Palacio's best-selling novel Wonder is an excellent tool for starting the conversation in your school or club. 

In addition to CCA's #ChooseKind Wonder Kits, CCA maintains a list of other resources for educators and parents to utilize. CCA also participates in the larger, national conversation about bullying prevention in schools and online. One method to make schools a safer, kinder place for students is teaching Social & Emotional Learning in the classroom using a variety of resources.

Social & Emotional Learning is defined by CASEL as:
Social and emotional learning (SEL) is the process through which children and adults acquire and effectively apply the knowledge, attitudes and skills necessary to understand and manage emotions, set and achieve positive goals, feel and show empathy for others, establish and maintain positive relationships, and make responsible decisions. SEL programming is based on the understanding that the best learning emerges in the context of supportive relationships that make learning challenging, engaging and meaningful. 
Social and emotional skills are critical to being a good student, citizen and worker; and many risky behaviors (e.g., drug use, violence, bullying and dropping out) can be prevented or reduced when multiyear, integrated efforts are used to develop students' social and emotional skills. This is best done through effective classroom instruction; student engagement in positive activities in and out of the classroom; and broad parent and community involvement in program planning, implementation and evaluation. 
Effective SEL programming begins in preschool and continues through high school.
To learn more about SEL, watch this video from Chicago Public Schools on their successful implementation of SEL and how tools like CCA's #ChooseKind Wonder Kits can reduce bullying in schools by modeling empathy and kindness to students. 
CCA strongly believes that our #ChooseKind Wonder kits are an excellent example of SEL and we are seeking to sponsor more classrooms with these kits. Why is Wonder so powerful? Well, as one Marcus Garvey Elementary School teacher said, "It's a lot of stories about feelings." And CCA believes that Wonder poignantly illustrates the feelings of living with a craniofacial difference. 

If you would like to help bring Wonder to your school, please visit CCA's Bring Wonder to Your School webpage and contact the office. Let's help students across the nation not only #ChooseKind, but also develop lifelong skills to lead fulfilling lives. 

Monday, April 27, 2015

Standing Up to Cyberbullying

CCA wants to make the world a kinder place.
One way we accomplish that mission is to prevent and end bullying, in schools and online.
Unfortunately, many of our CCA Alums & Adults are familiar with bullying tactics and have been bullied by classmates, peers, and even adults. Today's post is a personal account of how CCA Adult Frederick Seitz handled a bullying situation. 
Stay tuned this week for informative, inspiring posts about living life beyond bullying. 
Together, we'll #EndCyberBullying through education, empathy, assertiveness, kindness, and courage.

Be Ruthless to #EndCyberBullying
by Frederick Seitz 

Little over four years ago, in the September of 2010, I bought my first car -- a 1999 Jeep Wrangler Sport. I saved up a lot of money from my birthdays, holidays, and special occasions over pretty much all my life up to that time. I was in my senior year of high school at the time. I was thrilled to show it off to my friends, classmates, and family. Little did I realize that only a week later, I would become a victim of cyber bullying on Facebook.

A female classmate wrote a Facebook post that didn't mention me by name directly but described attributes that people knew were only related to one person: ME. I don't remember her exact words but the post mocked my disabilities including my craniofacial difference, my deafness, and even my religious beliefs. It was clear to me that she was extremely ignorant of my true abilities and of the fact that deaf people can really do anything EXCEPT physically hear sounds. She mocked my ability to drive and went far to question why I even have a driver’s license.

Unfortunately for her and lucky for me, her post backfired completely on her.

Soon, dozens of comments from my classmates posted, all rallying behind me as they called her out for cyberbullying me. I remember reading the comments and I was surprised at how many people were defending me. That time was one of the times I learned who my real friends and allies were. The next morning after I learned of this harassing post, I brought a printed-out hardcopy of it to the principal’s office. It wasn't long before the word went around most of my other classmates about this disturbing incident. Shortly after this, I confronted this female classmate face-to-face and told her that I knew what she wrote about me.

What happened next proved what I suspected to be true: she claimed that she thought my deafness and my craniofacial difference would impair my ability to drive.

Honestly, her excuses enraged me. How could she - how could anyone - believe this about me?
However, I used this event as an opportunity to set the record straight in front of my peers and to understand what motivated her actions.

I was proud of my ability to save money from hard work and a generous family, which I am fortunate to have, and I was insulted that she would publicly belittle me and assail my abilities, when I am clearly thriving in this world.

Whatever motivated her actions: envy, insecurity, or anger, I knew that her issues did not have to become mine. Responding to cyberbullying takes courage and empathy, assertiveness and ruthlessness.

To respond with ruthlessness means:
Do not show them that you're afraid, ever.

That's how bullies control you: fear. But beyond your fear, realize that two common reasons people bully are out of ignorance and for control. You can correct the ignorance through empathy and education and you can remain in control of the situation by choosing to be courageous and assertive. 
Rely on the people who come to your defense, too, for they are your true friends and allies. Remember that.

Sunday, April 26, 2015

Forgive Your Bullies, and Forgive Yourself Too

Our second post in our #EndBullying series is a reblog from The Washington Post's Kiley Bense.

Bense takes a look at the tendency for the bullied to become bullies or participate in bullying, even while they are victims themselves. The complexity of this issue makes it hard to recommend specific courses of action because the solutions truly lie in all of us understanding ourselves better so we can respond effectively to each situation and model assertive behavior.

Below are excerpts from Bense's article, but you have to read the whole post ... and see the photos.

As a kid, I was bullied. But I bullied, too. Does that make me a victim or an aggressor?
by Kiley Bense

As a child, I’d been a fearless know-it-all. In my teen years, I sank into myself. I became defensive and prickly, slinging sarcasm and insults to fend off teasing. Insecurity chewed away my confidence. I began to expect that any interaction with a peer was doomed to end in humiliation.


More than the tales we tell about others, the stories we tell about ourselves are only half-truths. Sometimes we’re trying to protect ourselves; sometimes we discard memories (purposefully or not) that don’t fit the person we’ve become or would like to be. But there are always traces of editing and rearranging, the fingerprints of time and interpretation.


I can’t deny that there’s pleasure in feeling fellowship with a group bonded against a common enemy, however opaque your reasons for that aggression may be. The fact is that human beings relish a witch hunt. We love a mob scene. We can’t wait to lob our frustrations at figureheads.

Most kids, like most people, aren’t ringleaders; they’re just swept up in the clamor and pull of the crowd. They are afraid that if they protest they will become the target instead. Middle schools, full of the vulnerable and shame-faced, are ruled by this fear, and so once was I.


The world isn’t neatly divided into bullies and the bullied; all victims conceal sins, and all villains carry sorrows and scars. You won’t be able to avoid being both, though you don’t have to be both in equal measure. You aren’t defined by the gap-toothed oddball that you used to be, no more than the classmates who tattooed those words on your brain space are defined by the rude face they turned on you.

Forgive your bullies, and you forgive yourself, too.

Check out the full article here:

Saturday, April 25, 2015

5 Things Not to Say about Someone's Weight

CCA wants to make the world a kinder place.
One way we accomplish that mission is to prevent and end bullying, teasing, and hurtful remarks, in social spaces and online. Unfortunately, many of our CCA Alums & Adults are familiar with bullying tactics and have been targeted by classmates, peers, and even adults. To help fight back against bullying, CCA is running a series of personal posts about how our Alums & Adults have handled bullying and teasing situations. Plus, we'll be posting resources from experts about how to promote safe and supportive relationships. Stay tuned this week for informative, inspiring posts about changing the way we react to others' comments - bullying, teasing, and even "harmless" remarks.
Some folks just have to comment on your looks every time they see you.
Maybe it's your face. Or your outfit. Or your smile. Or even your shoes.
Regardless of what has piqued their interest, you know they are looking because they're commenting. And while it is nice to receive a compliment, sometimes even well-meaning remarks bring up anxiety to those of us who already feel like a person on display.

Blogger Meg has experienced her share of frustrating comments, too, specifically about her weight. It can be exhausting to constantly answer others' questions, so keep Meg's tips in mind next time you - or your grandma - want to make a comment about another person's appearance. Whether you're curvy or angular, chubby or skinny, dark or light, tall or short... we're all people inhabiting the body we were born with. And we all want to be accepted for who we are, not what we look like.

5 Things NOT to Say to Someone Who's Thin
by Meg Storie

1. "You probably can eat anything you want and not gain a pound!"

No, I can't actually! I have Gastro-Esophageal Reflux Disease (GERD). Any food high in fat or with milk upsets my stomach and sometimes triggers heartburn. I don't have fast food very often; it's a treat when I do. I love my frozen yogurt sometimes. And because of GERD, I must eat early, hours before bedtime.

2. "You look like you are ten!"

Let's be honest: I do not look like I'm ten. This statement is too quick of a reaction and you should have thought before you spoke. In my early twenties, this is the "compliment" I get mostly, but even though we universally accept that everyone wants to look younger, no one wants to be infantilized. I'm a woman, not a child.

3. "How much do you weigh? You must be only X pounds!"

This is not the Fair and I didn't just give you three chances to win a prize. You wouldn’t ask an overweight person how much they weigh, so you certainly don’t ask someone who’s underweight.

4. "Do you eat?

What a silly question! I wouldn't be here if I didn't! The truth is, I love to eat. I thoroughly enjoy discovering new recipes on apps, dark chocolate, and eating David's heart healthy dinners! Eating is something I enjoy, but I have to mind my restrictions for my health.

5. “You need to put some weight on you.”

This statement assumes so much about me that is really unfair. I have been small all my life, so barring any physical changes to my body's chemistry, I'll be staying this way. For many underweight people, it is just as hard to gain weight as it is for an overweight person to lose weight.

In the end, making the world a kinder place is about shifting our communication patterns from commenting on people's looks to connecting with their spirit. There are many ways to start a conversation or compliment someone.

If you're guilty of saying some of these things out of habit, why not brainstorm a list of creative things to say instead? We came up with 5 Alternatives to get you started...
  1. Hi, Ginny! It is so great to see you! 
  2. I have missed you, Maggie! Where should we get lunch?
  3. Corbin, thanks for making it to the meeting! We're glad you're on our team.
  4. You're such an inspiration, Jake! When did you starting running 5Ks?
  5. Kelly, I have been eating way too much red meat lately. Do you know any good fish recipes you'd like to share?
Can you think of more? Share them in the comments!

Thursday, April 23, 2015

#ThankfulThursday - All the Way for CCA

Tomorrow, April 24, one of our first family fundraisers of the year kicks off: The All the Way for CCA Golf Tournament, at the Battleground Golf Course in Deer Park, Texas.

We know it takes a lot of work to put on a great golf tournament, so we thank you in advance to the golf club staff, volunteers, golfers, donors, sponsors, and friends! Your actions inspire kindness in your community and the funds you raise change children's lives!

Thank you for supporting CCA!

If you'd like to host a family fundraiser for CCA, contact the office. All families who raise $5000 or more for CCA are eligible for a hotel scholarship to the 2016 CCA Family Retreat & Educational Symposium

Monday, April 20, 2015

Flying High Now - Molly's Story

Today on the blog, we have a repost from the University of Chicago Medicine's Comer Children's Hospital. Trish Lawson generously shared her daughter's story with us. We know you'll be inspired by little Molly's surgical journey. To see more photos of Molly, check out the story on the Comer Children's Hospital blog!

Pediatric Team Remedies Pierre Robin Sequence Enabling Molly Lawson to Breathe, Eat and Thrive

Molly Lawson weighed a healthy 8 pounds, 5 ounces when she was born on October 2, 2012. But in her first week of life, she lost an alarming two pounds because of a rare birth defect that left her unable to easily breathe or swallow.

Just after Molly’s birth to John and Trish Lawson of Hobart, Ind., doctors at nearby Franciscan St. Anthony Hospital in Crown Point, diagnosed her with Pierre Robin sequence. This congenital condition is characterized by a cleft palate as well as an underdeveloped jaw that pushes the tongue toward the back of the throat, where it can obstruct the airway. Neonatologists at St. Anthony’s recommended the couple bring Molly to experts at the University of Chicago Medicine Comer Children’s Hospital.

Plastic and reconstructive surgeon Russell Reid, MD, PhD, and pediatrician Darrel Waggoner, MD, met with the Lawsons when they arrived at the medical center. Reid and Waggoner lead a multidisciplinary cleft lip and cleft palate clinic that assesses and treats about 20 children with mild to severe Pierre Robin sequence each year.

“Molly was in respiratory distress and struggling to eat,” Waggoner said. “She was expending all of her calories for breathing, so nothing was left for growth.” The medical duo told the worried parents it wasn’t safe for them to bring their daughter home.

The Best Thing for Molly
Until recently, most patients with Molly’s condition underwent a tracheostomy, a surgical procedure that creates an opening in the neck into the trachea, or windpipe, to access the airway. A tube, or “trach,” stayed in place until the child’s jaw developed enough to allow an adequate airway. This could take several years, required a high level of care by the parents, and was not always successful.

“In Molly’s case, we could offer her an implanted device that would advance her lower jaw,” Reid said. Called a mandibular distraction, the surgical method involves cutting the jaw on both sides and securing an internal device, or distractor, to the bones with tiny plates and screws. Small rods attached to the device exit through the skin. A tool inserted into the rods is then turned one to two millimeters each day, increasing the distance between the fractured bones. The bone naturally regenerates as part of the healing process and fills in the gaps. When the distraction process is complete -- usually in about two weeks -- the jaw has been brought forward and the tongue no longer blocks the airway.

Trish recalled her thoughts while listening to Reid and Waggoner explain the complex process. “I couldn’t believe the description of the surgery,” she said. ”But the doctors gave us peace of mind and all the insight and information we needed to move ahead. We understood that this option would save her life. As hard as it was to imagine, we knew it was the best thing for Molly.”

Activating the Medical Team
As Molly was being admitted to the Neonatology Intensive Care Unit (NICU) at Comer Children’s Hospital, Waggoner and Reid were calling on pediatric sleep specialist Hari Bandla, MD, and pediatric otolaryngologist Fuad Baroody, MD, to consult on her case and assist in a full evaluation before surgery.

Within 48 hours, Bandla performed a sleep study on Molly to gauge the number of times her breathing paused (apnea) and to test her oxygen levels. Results showed an index of 39 apnea events per hour and oxygen saturation as low as 51 percent.
“These numbers demonstrated the severity of Molly’s breathing problems,” Bandla said, “and gave us a baseline for measuring success after distraction.”

Using a scope, Baroody examined her airway and evaluated the distance between her tongue and the back of her throat. “It was clear that bringing her lower jaw forward would improve her situation,” he said.

These assessments gave Reid the critical information needed to cement the decision to perform surgery.

Getting Strong Now
After regaining weight during five days in the NICU, Molly was healthy enough to undergo the mandibular distraction surgery. On October 25, Reid implanted the device as Baroody worked alongside to ensure that Molly’s airway was secure and clear throughout the four-hour procedure.
“Communication from the operating room was great,” Trish said. “We had updates every half hour and the doctors assured us that everything was going as planned.”

Molly recovered in the NICU where the medical staff turned the distractors twice each day, an uncomfortable, but not painful process for the infant. By the time she went home two weeks later, her jaw had advanced 2 centimeters, or close to an inch. The follow-up sleep study, done 12 days after surgery, measured only 2.5 apnea events per hour and 90 percent oxygen saturation.

“Her breathing and feeding improved right away and the parents could see the difference in her appearance,” said Reid, who performed three additional surgeries on Molly over 15 months, one to remove the distractors and two to correct her cleft palate.

Trish says while it was heartbreaking for the family to watch their baby wheeled into surgery each time, it was amazing so see how quickly she would bounce back. “It was the scariest situation we have ever been in, but also the most rewarding,” she said.

Today, John and Trish describe Molly as happy, thriving and sassy. The little girl continues to gain weight and is reaching all of her developmental milestones.

Still, Molly’s medical team will follow her for years to come. “We’ll monitor her for breathing, speech, swallowing, hearing and dental issues,” Reid said. “We want to be sure she is always functional as well as happy and healthy.”

Thursday, April 16, 2015

#ThankfulThursday - itriforgood

Children's Craniofacial Association is thankful for Katie & Kyle Caniglia and the awesome fundraising opportunity they created through ITRIFORGOOD.ORG, an online fundraising tool that delivers 100% of funds raised by athletes to their charities of choice! ITRIFORGOOD's mission is "to make any endurance event a fundraising opportunity for your favorite non-profit organization."

Wow ... what a cool mission!

If you enjoy physical fitness and endurance racing, you can register ANY race as an ITRIFORGOOD race and raise money for your favorite cause... like CCA! Check out how you can become an inspiring fundraiser here:

We love what ITRIFORGOOD is doing and all of the passionate athletes raising money for good causes!

The next athlete competing for CCA is Amy Stone... check out her page and stay tuned for an interview with Amy coming soon on our blog!

Thursday, April 9, 2015

#ThankfulThursday - Exhib-it!

This #ThankfulThursday, CCA is thankful to EXHIB-IT! for choosing CCA 
as the Nonprofit Spotlight for the month of April. This special promotion on their website 
and the upcoming fundraiser at Olo Yogurt next month make a huge difference 
in the lives of our CCA Kids by encouraging awareness and acceptance.
Together, we are spreading the #ChooseKind message 
and helping our cranio kids live full and exciting lives.

Special Albuquerque Fundraiser: May 20, 2015
Josiah Torres, of EXHIB-IT!, will be hosting a special profit-share day sponsored by Olo Yogurt, all day on Wednesday, May 20th.  Stop by any time, during regular hours, on May 20th and a percentage going to CCA!  Come alone, bring a friend or a group, and experience the 
“Best Frozen Dessert” – 2013, 2012 & 2011 winner of Best of Burque Restaurants, Alibi
For more information call (408-771-6437), or email Josiah at

Friday, April 3, 2015

#surgeryproblems - Training Surgeons in Africa

Today we wrap up our #surgeryproblems series on the blog. Our Friday feature is a repost from Seattle Children's about PACT (Partners in African Cleft Training), their cleft surgery training program in Africa. We thought this post was a great way to close out our week on surgery because not only is this an amazing, world-changing program, but it's also a reminder that as scary and difficult as surgery can be, it's also an amazing opportunity for our children to be able to receive quality medical care and move forward after a craniofacial diagnosis.

The first thing Dr. Michael Cunningham noticed was the crowding. Hundreds of African mothers and their young children, pressed shoulder to shoulder in a time-worn hospital’s hallway, waiting patiently for hours — if not days — to receive cleft lip and palate care for their child. It was then when he fully understood the importance of his goals in Africa and how much work lay ahead.

Cunningham, who is medical director of Seattle Children’s Craniofacial Center, and the Center’s surgical director Dr. Richard Hopper, had traveled to Africa as part of a specialized cleft training program they co-founded in 2007 now called Partners in African Cleft Training (PACT).

Unlike mission-based medical programs that focus on treating as many cases as possible in short, fixed periods of time before returning home, Cunningham and Hopper sought to create a sustainable environment in which African health professionals became completely self-sufficient in treating cleft cases.
Dr. Richard Hopper (left) and Dr. Michael Cunningham (third in from the left) with surgeons in Africa during a PACT Program visit.
Building a Sustainable Program
The two men and their team have spent eight years developing unique programs that are designed to equip African health professionals in Ghana, Ethiopia and Nigeria with surgical techniques, nurse anesthetist training, speech language therapy and feeding techniques.

Hopper said that while mission-based programs are of great value, working alongside and training African surgeons has proven successful thus far in terms of creating a lasting impact. To treat five children per day for one week is one thing, Hopper says. To treat five children per day for one week — while simultaneously training four African physicians who can use and pass that information on to their colleagues — that’s how real progress can continue long after he and Cunningham return to Seattle.

“The trainees bring an incredible energy, enthusiasm and a desire to learn. They’ll learn a new technique and say to a colleague, ‘Hey, I have to show you what I just learned.’ Now you have another person doing something they couldn’t do before,” Hopper said. “With this approach, it doesn’t take long before the number of patients treated reaches the thousands. Then you start to get on the scale of the burden of clefts in Africa.”
A nurse created an improvised pacifier from a sterile glove to soothe a baby awaiting surgery for a cleft lip at the Komfo Anokye Teaching Hospital (KATH) in Kumasi, Ghana, during a PACT Program visit.
Understanding the Environment
Hopper said that a big part of developing a successful program was being able to understand problems on a regional level. You can’t come to a solution, he said, unless you understand the environment and the challenges people have faced already.

Part of this was their decision to leave the state-of-the-art tools they have available to them at Seattle Children’s and instead face the same challenges as surgeons in Africa. There needles and sutures are bigger and operations are often lit with nothing more than a 60-watt lightbulb rather than a bright, brand new surgical lamp. Hopper said that through this experience, he learned new surgical skills as well.

“My touch, my sense of feel of tissues, of skin, of a needle passing through…it all became better,” Hopper said. “I was never challenged to learn these skills in Seattle.”

Upon their return to Seattle, Hopper said he re-examined his existing surgical toolkit and realized that, much like his African surgical counterparts, who only had four or five tools at their disposal, he seldom used more than that himself.

“I came back in Seattle and realized I had around 200 instruments on my cleft palate set,” Hopper said. “But, when I really thought about it, I realized that I only use four or five of them. Now our cleft palate and cleft lip sets in Seattle are similar to what you’ll find in Africa.”
A patient is examined during a check-up at the Cleft Clinic at Komfo Anokye Teaching Hospital (KATH) in Kumasi, Ghana.
Addressing "Brain Drain"
Another large part of building a sustainable program, Cunningham said, was to create a climate in which skilled African physicians are willing to stay in Africa rather than be lured to other parts of the world where different lifestyle opportunities or greater medical resources exist. A phenomenon commonly referred to as “brain drain.”

This is particularly common in Africa, where many surgeons, despite best intentions, are simply overwhelmed by the volume of patients and scarcity of resources at their disposal. It’s not about a situation of brain drain as much as “brain burnout.”

“They’re not just looking for more money or a bigger house. They’re looking for an environment where they can do good work,” Cunningham said. “If you can create an environment that is stimulating, engaging, energetic and fulfilling for physicians in Africa, then they’ll stay in Africa. That’s what we’re creating through PACT.”

Thanks Seattle Children's for sharing this story with us!

Thursday, April 2, 2015

#surgeryproblems - Top 5 Surgery Essentials

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. Being prepared can reduce some of the stress and make your hospital visit more comfortable. Today, Liz offers her top tips for being prepared for surgery.

Check back tomorrow for our wrap up of the #surgeryproblems series.

Top 5 Surgery Prep Tips
by Liz Cox
Preparing to go to the hospital can be stressful enough, but when it’s for your child undergoing testing or surgery, that all gets magnified a hundred times over. In our house we make lists to get ready. Lists of bags and lists for what goes in each bag. Lists of clothes, lists of medications, of electronics, snacks, and books. We have refined list making and bag packing to an art. When I was asked if I would write about the top five things to bring with you to the hospital, I knew just what to do. I consulted the stack of dog-eared legal pads containing list after list from years of vacations, grocery trips, and (of course) hospital stays.

#5 Chargers and headphones Keeping chargers and a set of ear buds on hand can make the stay a bit more tolerable for everyone. Headphones not only keep your distractions to yourself, but they can do wonders for blocking out some of the drone of the hospital.  My favorite use for headphones? They can act as a wearable “Do Not Disturb” sign for when you need a few minutes uninterrupted.  Making sure to bring chargers for your electronics can mean the difference between feeling stranded at sea or being well connected to your support network.

#4 Personal Care Bag Clean socks, deodorant and other assorted “foundations” are just a few of the necessities we stash in what has affectionately become referred to as the “Mom Bag.” Even if you can’t squeeze in a full shower, being able to splash some water on your face and freshen up a bit can do wonders for how you feel.  Think of it as a “soft reset” on your day.  The other must have items in the Mom Bag are a quality assortment snacks. Granola bars, dried fruit, and individual packages of almonds are favorites. The protein does wonders to keep you feeling full between meals and stave off the hangries.

#3 Medications It never ceases to amaze me how many questions there are surrounding medications that are clearly in your child’s chart. Bringing them with you allows staff to clearly confirm any medication, prescribers, doses or pharmacy information, and gap any coverage on long rides home. Make sure to stock it up with things for you, too! Having ibuprofen and antacids at the ready are beyond convenient, and it’s one less thing to try to track down if you need it. Double check to make sure you have any daily medication you require as well. If you aren’t taking care of yourself, you won’t be able to take very good care of your child.

#2 Favorite stuffed animal or blanket There is a small troupe of comfort items that are a deal breaker if they are left at home during a hospitalization. They consist of a floppy baby doll version of Snow White, a small Taggie square, and a crochet lap blanket.  For the last five years, these three items have been able to bring security, familiarity, and comfort to some pretty stressful situations. Baby Snow has been in more MRI’s, x-rays, and operating rooms than I can count, always with our little lady in their matching hospital ID bracelets. That doll has been able to be with Tiny in places that it was just not possible for mom or dad to go, and has been the “patient” in many exams, showing our little one that she had nothing to fear.  

#1 Notebook or Journal Questions about care don’t always come to the front of your mind when doctors are rounding or the nurse is in the room with you. Keeping a notebook in the room with you will give you a designated place to write these questions down, and the answers you receive. It’s also a great place to jot down notes about which doctors were rounding, any tests and results, medications, and any reactions your child is having. These can be so helpful to reference if/when your child has to return back to the hospital, and you can flip back and have information on things like what works best for pain management, or how long swelling lasted, etc.

We don’t always have the luxury of being able to plan and prepare for a hospitalization, but when we do, having a few key items can make a huge difference in the stay.

About the Family
Jason and Liz Cox live in Springfield, MA with their daughter, Nova. They knew relatively little about the craniofacial community until they received Nova’s diagnosis of Pfeiffer Syndrome shortly after her birth in 2009.  Jason is a former roustabout, Liz is an avid recycler and Nova is patiently waiting for the spring planting season.

#ThankfulThursday - Ben E. Keith Beverages

This #ThankfulThursday, CCA is thankful to the Ben E. Keith Company for sponsoring our 
Dallas Links of Love golf tournament each year, raising funds for Patient Financial Assistance. 
Together, we serve more families affected by facial differences!

If you'd like to sponsor or register for Links of Love, contact Jill at the CCA office.

Wednesday, April 1, 2015

#surgeryproblems - Memes

This week, we're featuring stories about surgery on the blog ... with a twist! Check back each day for a new post. 

In the spirit of April Fool's Day, the CCA Alums & Adults 
created some funny #surgeryproblems memes to share. 

Tweet with us and share your own! You can make free memes here.
Remember to keep it kind, fun, and positive.
Our goal is to flood social media with positivity and humor!

Rose Seitz got us started with a funny story from one of her son's surgeries:
Once when Freddie was in recovery and we came back to see him, the nurse said, “Wow he’s really having a nice sleep... we were calling his name and calling his name but he’s so out that he’s not responding.”  
I said, “Well that’s probably because he’s deaf!” 
- Rose Seitz, CCA Mom

and then we kept going...

And, finally... Joe Brooks, the mastermind behind the meme idea: