Thursday, March 23, 2017
Some believe the most difficult years of our lives are during adolescence because the body and mind are changing at such a rapid pace. For those with facial differences, chronic illnesses, or other physical and mental challenges, being a teenager can be even more overwhelming. Not only are you managing your physical health, but you are doing so during a turbulent time.
Recently, I read an article by The National Autistic Society. This UK-based organization provides some great resources about how to communicate with others, how to make friends, and provides links to additional supportive websites. Though this site is geared toward those with autism, I think what has been written here is great advice for us all to review and utilize. It may be the first time, or it may serve as a nice refresher. Either way, I hope this website is useful to all the Moms, Dads, and kids out there struggling to get through the years between middle school and young adulthood.
Many thanks to Steven Johnson of http://publichealthlibrary.org/ for sending along this link to CCA.
Monday, March 20, 2017
A scout's motto is "always be prepared" and, Parents, this overview helps do just that for your and your children dealing with an upcoming surgery. The article by is broken down by age group, providing suggestions appropriate for their age. The information provided allows parents a framework from which to help them determine how to best approach the topic with their child.
DeAnn Wilson, PNP-BC of Mercy Children's Hospital prepared this excellent overview for us. We are grateful for this resource we're able to share with you. Find it here online.
Tuesday, March 14, 2017
We have some exciting news to share with you! Longtime CCA Retreat attendee and performing artists, Bianca Moon, has teamed up with Director Edward Edwards and Ed O’Neill (Modern Family, Finding Dory) to record an incredible song, aptly titled "The Wonder Song." This song is inspired not only by the book and film, but more importantly it is a love song to CCA Kids!
Bianca will be performing this song during the Dinner/Dance on Saturday, July 1st, and we need your help! We are looking for Retreat Attendees to be participants to sing and perform this song with Bianca! If you are interested, you will be sent the lyrics and a recording of the song. You will be responsible for learning the song prior to the retreat. You will also be required to attend a performance rehearsal during Retreat. The exact time may vary depending on the number of participants, but the block is planned for 11:00am-4:00pm on Friday, June 30th. (Note: This rehearsal is during the Water Mine Park off-site activity and you must be attending the 27th Annual Family Retreat & Educational Symposium.)Please contact us if you want to participate, sign up for Retreat, or have any questions at all. This is a fun and unique opportunity for our kids and sibs who enjoy music, singing, and performing!
Life has been quite a journey full of ups, downs, and crazy turns along the way. It has been filled with trials and tribulations, love and laughter, smiles and tears but I wouldn’t have wanted it any other way. I am a wife, sister, daughter, mother, friend, teacher, student, and I have Treacher Collins Syndrome.
CCA has been a part of my life since I was 3 years old. My very first activity was a meet and great with Cher at her Heart of Stone Tour in 1989, followed very soon after by activities in Washington DC to promote awareness of craniofacial disorders and advocacy for much needed insurance coverages. It was at that time when several families who spent time with Cher realized as they connected and created lifelong friendships how very important it was to make those connections for the wellbeing of both parents and children. The first CCA Retreat was born from a very private and emotional discussion in Cher’s hotel room about how great it was to finally be in a place together where our families felt safe and understood. My family participated in that very first retreat in Orlando, Florida. Char and Jill along with others have been an important part of my life ever since. We were not able to attend every retreat but when we did I always loved being with my old friends and making new ones. I met Emily Paulson, my first real friend with TCS, when I was 6 and Emily was about 18 months old. In Fort Lauderdale, I was finally reunited with Emily in person for the first time since I thought I could carry her around like my very own baby doll who looked like me! While life has gotten busy over the years, the lifelong friends and support system from CCA have never faltered.
I was born on May 20, 1986 (a little fun fact, Cher and I share the same birthday!). At four months old, I went into full respiratory and cardiac arrest at home. Doctors worked tirelessly for hours to resuscitate me. I was placed on a ventilator and doctors informed my family that they were not sure I would survive through the night and feared severe neurological damage in case of survival. Several days later I made my first trip to the OR to be trached. I know this worrisome beginning to life may sound all too familiar to those of you reading this. Since that time, I have undergone over 50 surgical procedures. Having TCS has impacted my life tremendously; however, even at a very young age I learned to use it as a positive influence. I continue to strive to grow and become an outstanding example of how someone can excel despite what would appear to be overwhelming odds.
While growing up I remained active despite constant interruptions from school due to medical complications and numerous surgical procedures. I was a curious, bright, and voracious learner. I received special education services to help support me over the years.
I danced, performed in community theatre, went to homecoming dances and proms, participated in school activities and went on to graduate in the top five percent of my high school class. Upon graduating high school, I became the recipient of a Ben Carson scholarship and was named Baltimore County’s Young Woman of the Year. I was nominated by my surgeon, Craig Dufresne, and received the American Society of Plastic Surgeons’ Johnson and Johnson Patients of Courage Award. A donation was made to CCA in honor of that award. I went to college and obtained my master’s degree in Teacher as a Leader in Autism Spectrum Disorders.
Bulletin boards decorated, individualized picture schedules, lesson plans prepared … “Am I ready for this? Will my students like me? Will they ask questions about my appearance?” Those thoughts raced through my mind the first day I became a teacher. Teaching is challenging, that is just a fact. However, no challenge has paled in comparison to the unconditional love I received from my students. We all have moments of self-doubt and fear of the unknown but I am so glad it did not hold me back from fulfilling my dreams of becoming a teacher. I have been a special education teacher for eight years and the children I have taught will always have a special place in my heart.
Having been a child with special needs, seeing CCA children overcome obstacles, and teaching children with disabilities has inspired me to be a leader in the field so that I can help provide the best education for all children. In July, I took a year of leave from teaching because I was accepted to the Center for Innovation and Leadership in Special Education fellowship at Kennedy Krieger Institute in Baltimore. I am receiving intensive mentor training in the neuroscience of learning and the learner, principles of behavior change, knowledge acquisition of evidence based practice, and education law. I am also pursuing an advance degree in instructional leadership and professional development.
While I am passionate about my work, my family is truly the most important part of my life. I have been married to my middle school sweetheart for 6 years. We’ve shared quite an incredible journey together but nothing tops the proposal at the Grand Canyon, exchanging our vows in front of those we love most, and experiencing the birth of our two miracle babies. My favorite thing in the world is relaxing at home watching Zootopia for the hundredth time while holding Hudson in my lap, playing cars with Lyle, and seeing Kevin smiling back at me as he gives our dog Copper a belly rub.
I believe that my life experiences can be directly attributed to embracing my differences many years ago. At a young age, I made the decision to turn my disability into a teaching tool. I grew up within a family who was dedicated to empowering and giving hope to people with facial differences and their families through sharing our experiences for the purpose of reciprocal support.
“She made not live through the night,” they said. Here I am.
“She can’t swim with a trach,” they said. Did it...all...the...time (though for safety reasons I might not recommend it for everyone).
“She will struggle to learn to read,” they said. I struggled but it “clicked” in second grade and now I am pursuing a post-graduate education.
“You’ll find love one day,” they said. I did and it appeared when I least expected it.
Be true to yourself. Educate others and spread kindness. Most importantly, bring your hopes and dreams to fruition.
As a teacher, mother, an adult with a disability, and lover of all children’s books …
Listen to the musn’ts child,
Listen to the don’ts
Listen to the shouldn’ts
The impossible, the won’ts
Listen to the never haves
Then listen close to me –
Anything can happen, child,
Anything can be …
The famous words of Shel Silverstein.
Monday, March 13, 2017
CCA posts a monthly blog series called, "Ask the Doctor." You can submit your questions to Annie Reeves (firstname.lastname@example.org) 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, Mercy Children’s Hospital – St Louis, MO
Question: We had surgery October 25 for saggital craniosynostosis. He had an 8x4 section removed along with relief cuts on the side. At our six week check up I mentioned and the doctor confirmed that his entire skull had regrown already. We are on our second helmet to try and shape the head but it is 10mm longer (footballish) than before surgery.
I love our craniofacial surgeon but wonder if a second opinion is necessary? It seems awfully fast for the bone to regrow and I'm worried we should be looking at, or preparing for, another surgery.
Answer: Thanks for your question. I presume that your baby had endoscopic assisted suture removal where a limited section of bone was removed through small incisions. Endoscopic assisted surgery is gaining acceptance as a good technique for treating craniosynostosis because if offers smaller scars, shorter surgery times, shorter hospital stays and less risk of needing blood transfusion. In experienced hands, the outcomes in sagittal synostosis are also quite good with normalization of skull shape in most cases. In order for the surgery to work well in correcting the head shape, it is important to remove a wide enough section of bone and release the fused suture completely. It is also critical, in my opinion, that parents are compliant with molding helmet therapy after the surgery and that teams use an experienced orthotist to make the helmet and monitor for proper fit. While I am aware that helmets are not used in some places in conjunction with endoscopic assisted suture release, I believe the best results are achieved when a helmet is used in conjunction with surgery. Parents should anticipate that their baby will need the helmet until approximately 1 year of age. The helmet should be worn 23 hours a day.
The fact that your baby’s cranial bone seems to have re-grown quickly is not surprising. In fact, this is normal. If the head shape is not correcting or is worsening, this can be the result of not having had enough bone removed, incomplete release of the suture or a molding helmet that is not fitting properly or not being worn as instructed. These are things to check and discuss with your team. Although it is rare to need a second surgery, sometimes repeat surgery is recommended due to inadequate correction of the head shape. When deemed necessary, any repeat surgery would likely be done as a traditional, open surgery. It is never wrong to seek a second opinion if you have concerns. Most surgeons will be OK with this. It is always OK to be a strong advocate for your baby.