Tuesday, September 19, 2017

Photos from #CAM2017 Dallas Picnic

This year's Dallas Picnic at Sandy Lake Amusement Park to celebrate Craniofacial Acceptance Month was a smashing success. Many family came out for a day filled with friends, carousel rides, and kindness. Here are a few snapshots from the day. Look at all those smiles!

Many thanks to all the families in Dallas for coming out and making this day special for our kids.

#ThankfulTuesday: Kimberly Majus to Play in the 10th Annual Links of Love for CCA on Sept. 29th

It is a very special #ThankfulTuesday!

Kimberly Majus is playing in our Links of Love Golf Tournament with her friend, James.
We are excited that they will be there to support CCA on the greens of Firewheel Golf Park on September 29. We hope you will join us, too.  

Here is a short piece that Kimberly wrote to share with us on the CCA Kids Blog. Thank you, Kimberly for your words and your support!  

My name is Kimberly Majus and I was diagnosed at 18 months with Cranial Metaphyseal Dysplasia. I graduated high school and was 1st runner up at my school's beauty pageant. I graduated from college with high honors, several times on the dean's list and was a member of the Phi Thea Kappa. I was married to my husband for 21 years and now a widow. Currently, I live with my best friend, James who is deaf. We bought a house together and we both work for The Home Depot. I am currently "Cashier of the Month" for the month of August, . We have two beautiful dachshunds and they are the loves of our lives. 

Don't let anyone tell you that you cannot do anything. I learned to live with my disease. It doesn't have control over me. You can succeed in anything if you set your mind and heart to do it, no matter what. Philippians 4:13"I can do all things through Christ who strengthens me."

Monday, September 18, 2017

Ask The Doctor: Bone & Gingival Graft with a Periodontist

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

Question: Our child is being referred to a Periodontist for a second bone graft and gingival graft for the upper front teeth. We have been told this is a more delicate surgery than the initial bone graft that the plastic surgeon performed 2 years ago. What kind of questions should we ask about the surgery and determining which doctor to use?

Answer: Thanks for your question. I presume from your question that your child had a cleft lip and palate and that the graft 2 years ago was to close the cleft in the alveolus or gum line. There are certainly times when re-grafting is necessary. Sometimes the first graft fails. Sometimes the graft “takes” but there is insufficient bone to allow a subsequent desired procedure, such as placement of a permanent dental implant. More often than not, the re-grafting procedure is essentially the same as the first surgery. With any bone graft surgery, it is critical that there be healthy soft tissue to cover and protect the graft as it integrates. Ideally, we want a water-tight seal around the graft. If the incision pulls apart or if there is a persistent open connection from the nose or the mouth into the space where the graft was placed, the graft is likely to become infected and fail.

Since children with craniofacial and cleft problems are more complex to manage than children without these types of diagnoses, I would first recommend that you ask your periodontist if he or she has experience in doing these types of procedures in kids with similar diagnoses. Experience and judgment matter. Secondly, I would be a little nervous about bone grafting and gingival grafting being done at the same time if the gingival grafting procedure will result in other incisions and soft tissue disruption near the site of bone grafting. Again, you want healthy soft tissue and a water-tight seal. Anything that may compromise this type of closure needs to be carefully discussed. I would spend some time talking to your periodontist about what’s involved with gingival grafting and whether it may put the bone graft at risk. Finally, once you meet with the periodontist, I would recommend you discuss the plan with your craniofacial surgeon to make sure they feel it is safe and makes sense.

Best of luck!

#CAM2017 Greatest Hits: VIDEO, My Funny Face by Shea Freeman

To celebrate Craniofacial Awareness Month we will be featuring some of the posts that received the greatest number of hits over the last year.  This one is from contributor and filmmaker, Shea Freeman. 

By Shea Freeman
My name is Shea Freeman and I was born with Crouzon Syndrome. I've attended a couple of CCA events. Most recently, I was a speaker at an event back in 2013 in Orlando. I made a documentary about my life at the request of my doctor, Mutaz Habal. Since then, I have gone on to move to Los Angeles and currently I am developing a TV pilot that is loosely based on my life with Crouzon syndrome. 

I also created a webseries called, Mr. Funny Face, which chronicles some of my experiences living with Crouzon Syndrome. It's meant to be a funny portrayal of how I handle these situations, as I pride myself on having a good sense of humor and being able to take a joke. Here is an episode about what happens when children comment, "you're weird looking" to me. I'm sure everyone can relate to what plays out in this short episode. Enjoy!

Sunday, September 17, 2017

Survey Participants Wanted For NICU Experience Study

A graduate student at California State University San Marcos is conducting a research study about families with children born with cleft lip, palate, or other craniofacial conditions that spent time in the Neonatal Intensive Care Unit. (NICU). The student would like to ask you some questions was part of a 20-30 minute survey to learn more about your families experience in the NICU. Participation is completely voluntary and the answers will be anonymous. If you are interested in helping this researcher, please contact her at austi025 [at] cougars [dot] csusm [dot] edu, or her research supervisor, Dr. Scheer-Cohen, at ascheer [at] csusm [dot] edu