Sunday, July 31, 2016

Media Sunday: Emily Paulson, From Patient To Nurse

Photo Credit:

Life comes full circle as former patient and CCA alum, Emily Paulson, works as a nurse at the very same hospital where she was treated when she was born. She works on the neurology floor easing patients'  pain, taking vitals, and comforting them with her excellent bedside manner. 

On this Media Sunday, let us salute Emily for that she has overcome, all that she is, and all that she is meant to be. Keep being our 'Rock Star,' Emily. 

Saturday, July 30, 2016

Ask the Doctor: Why do you leave distraction device on so long?

CCA posts a monthly blog series called, "Ask the Doctor." You can submit your questions to Annie Reeves ([email protected]) and we will ask Dr. Earl Gage of Kids' Plastic Surgery in St. Louis to answer them. Thanks Dr. Gage for helping spread information and resources for our cranio families!

Ask the Doctor

Earl Gage, MD, Kids Plastic Surgery, MercyChildren’s Hospital
Ask The Doctor
Earl Gage, MD
Kids Plastic Surgery, Mercy Children’s Hospital – St Louis, MO

Question: My five year son had his frontal advancement procedure done one month ago. The doctor told us that it would take about two months for the halo to complete the process. Last week the doctor then made the decision to remove the halo because some of the hardware had loosened, a cord was damaged and one of the sites was getting infected.  He said the advancement was already done anyway. My question is if the halo completes its job when it doesn't need turning anymore why do they leave it on for such of long time?

Answer:  Distraction osteogenesis involves cutting a bone and then slowly lengthening the bone by applying a constant steady force. In order to understand the phases of distraction and why we leave the halo on even after the work of moving the bone is done, it helps to first understand what happens when a bone is broken and needs to heal.

When a bone is fractured, the body begins the healing process by stimulating cartilage and bone producing cells at both ends of the fracture to begin laying down new hyaline cartilage and woven bone in an effort to bridge the fracture gap. This new tissue spanning the fracture is called a callus and is relatively soft. Once the gap is bridged, the callus tissue is eventually replaced with stronger lamellar bone. Additional biologic changes and modifications of the bone occur until complete healing is accomplished. During the process of fracture healing, it is necessary to have good blood supply, good nutrition, good alignment of the fracture edges and good bone immobilization. Fracture healing often takes 4-6 weeks or longer.

Beginning in the early 1900’s some physicians realized that bone could be lengthened applying tension to the bone while in the callus phase of healing. If you lengthen the bone at just the right rate, you can continue to lengthen the bone at the callus while new bone is being formed just behind the callus.  In essence you stay just ahead of where the bone is becoming solid and stretch the soft stuff.

Once you have achieved your bone-lengthening goal, you then stop applying the lengthening force to the bone and instead try to provide stability and immobilization of the fracture so that bone healing catches up and the bone becomes strong. 

The reason, therefore, that there is a period of time after you are done turning the screws is to provide stability to the bones while the bone healing “catches up” and makes the bone solid and strong. This is called the consolidation phase of distraction and may take 4-6 weeks to allow full healing to occur. If the distractor is removed too early, while the bone is still healing and relatively soft, then there is a risk that you could lose some of your gains or that the fracture may not heal appropriately. 

Although we all want to have the distractor in place through consolidation, there are times when the distractor mechanism needs to be removed early. Reasons for early removal can include infection, malfunction or accidental dislodgement. Depending on when this occurs in the process of distraction and consolidation, the surgeon then has to make a judgment whether the bone is sufficiently solid to allow removal or if something else needs to be done to provide stability while the fracture continues to heal. A decision to put a new halo on is a decision based on risks and benefits of another surgery. From what you describe, it sounds as though your surgeon felt that things would be sufficiently stable to allow early removal.

I hope this helps answer your question, and I hope your son recovers well from his surgery.

Friday, July 29, 2016

Pokemon Go Safety Tips for Parents

Today's guest post is from Amy K. WilliamsAmy K. Williams is mother of two and a former social worker, specializing in teen behavioral issues. Parenting is her passion and she is especially involved in spreading the word about positive parenting techniques.

Pokemon Go Safety Tips for Parents 

There’s something strange in our neighborhoods, and it isn’t resurgence of The Ghostbusters. Within the last few weeks, the Pokemon Go craze has skyrocketed in popularity around the world. Suddenly, adults, teenagers, children, and even toddlers are trying to collect Pokemon using mobile phones and devices. While this game is a great way to get people outdoors and interacting with others, this app can expose our younger ones to some hidden dangers.

Overnight, our children began clammering to go outside walking, begging to take the dog for just another walk, and roaming groups of people started searching our neighborhoods in droves on a quest to hunt down virtual creatures. As our children head to the streets, far too often they forget basic safety skills important for their well being. Thankfully, there are a few guidelines we can implement to empower our kids to safely play Pokemon Go.

12 Essential Tips For Safely Playing Pokemon Go

  • Download the game and play as a family. If you can’t beat them, join them. This app has a lot of potential for families to get outside and bonding over the quest to catch as many Pokemon as possible. Get in on the action and take advantage of these new opportunities for valuable family time for all ages.

  • Play in groups. There is safety in numbers and having a friend or two along will provide a small safety net. Partnering with friends can reduce the likelihood that they will be targeted by criminals, pedophiles, or more. Plus, it is more fun and challenging!

  • Play during daylight. This game is a wonderful way to explore the neighborhood, but parents should consider limiting their children’s walking or biking after dark. This will eliminate a variety of safety concerns and provide your child some down time.

  • Inform kids how to be aware of their surroundings. Many accidents are happening, because our children are watching their screens instead of where they are walking or they are playing in undesirable areas that harbor unforeseen dangers. Teach children to avoid stopping in the middle of the street, encourage them to stop walking before looking at their screens, and always play in public areas.

  • Have them tell you their plans and routes. Depending on a child’s age, they may be heading out to the local gym or Poke stop without you. Stay in the know by asking for an itinerary or places they plan on walking and make sure they check in every now and then to keep you informed.

  • Set boundaries. Younger children and tweens might be tempted to roam out of the neighborhood on their hunts. Take a few minutes and designate a clear perimeter of the areas they are allowed to explore.

  • Wear bright colors or reflective clothing. A child’s increased mobility and walking habits are good things, but they need to increase their pedestrian safety by being more visible to drivers.

  • Set the game to vibrate when a Pokemon is nearby. This will allow a child to pay attention to their surroundings, but they can carry their phones in their pockets or hands. They will still be able to participate without missing a chance to snatch a new critter and know where they are walking.

  • Limit “in app” purchases. This game is highly addictive, fueling the temptation to buy additional products to enhance the experience. Depending on a child’s age, avoid linking a payment method to their phone or help them set a budget. While spending money doesn’t affect a child’s safety, it can affect your wallet.

  • Don’t drive and hunt. Stress the importance of putting down devices while driving and not impeding traffic. If needed, take turns being the designated driver or pullover and walk. It might also be a wise idea to remind young drivers to be on the lookout for distracted pedestrians or other drivers.

  • Keep a portable battery charger on hand. The interactive nature of this app can cause devices to drain power fast, resulting in a dead battery leaving no way to get in touch with us. Purchase a small battery charger to keep in a child’s pocket or bag in case of an emergency or an extended bout of Poke hunting.

  • Stress good manners. Encourage children to be polite, stay on sidewalks, and be respectful of other people’s property. A little etiquette can keep children from encountering angry homeowners or extreme players.

How do you teach your kids to safely “catch them all” while playing Pokemon Go?

Wednesday, July 27, 2016

Thomas Family Spotlight

“I choose to be unstoppable. I am bigger than my concerns and worries. The strength of others inspires me daily. I focus on my goals and trust my intuition. I live a courageous life.” 

It is fair to say as a family, the Thomas’ have abided by this quote. Sullivan started high school in September 2015 and is doing better than anyone had imagined. He participates in an after technical theater program, and has made several friends who are also in the program. Sullivan has done an awesome job balancing grades and high school activities. Just like any other freshman boy in high school, Sullivan spends plenty of time playing video games on his play station. 

Jonas, the youngest of the siblings recently got a Go-Pro camera. He enjoys making up “Parkour” routines and recording them. 

Jonas also loves spending time with his friends at the local library where they play MineCraft. Jonas had his yearly winter sing school concert; he did a phenomenal job! He also recently cut about five inches off of his hair! 

Hannah has recently graduated early from high school and is working fulltime as a nanny for a local family. She finished up coaching Special Olympics bowling and is now coaching Special Olympics snowshoeing. This summer, she plans on attending a school trip to an orphanage in Guatemala for the second year in a row. Once she returns from her trip she will began her eleven month journey with AmeriCorps-City Year; where she will be teaching in an urban school. 

As for their parents Amy and Maylan, are doing pretty good as well. Amy has recently started the first all-inclusive technical theater program in the United States. The program is called Team Awesome and focuses on allowing children who have special needs to learn how to build sets for plays, work in the lighting and sound booths and most importantly, it allows them to feel a part of something bigger. Maylan recently completed the showings of the musical American Idiot. He put in lots of  hours to complete the first ever high school version of the musical in Wisconsin. It is clear to say that everyone in the Thomas household is doing better than ever. 

Thank you Thomas family for sharing your update with the rest of the CCA Family. We are so excited for your busy year. 

Thursday, July 7, 2016

Thankful Thursday: Life Expressions by Jill

We are so grateful to the dynamic duo, Angela & Jill, who came together to raise $1000 for CCA Kids!

It's fundraisers like this one that represent a FULL FAMILY SCHOLARSHIP to our Annual Family Retreat and Educational Symposium. Through these women and their friends' generosity, we can send another family to Retreat. Thank you so much, Ladies... it looks like it was a blast!

Here's a note from CCA Mom, Angela:

On June 27th and 29th, family and friends gathered with me in an effort to raise money for the Children's Craniofacial Association. My friend, Jill Gerne Allevato who is affiliated with the Life Expressions by Jill Allevato - Independant Consultant, generously donated 15% of each product purchased. This was my 3rd fundraiser and I am proud to say that we raised $1,000 to CCA! Thank you to everyone who was a part of this. 

Thank you, 
Angela Wojtyniak