Peter started his junior year of high school exactly two-months after his extensive jaw reconstruction. His journey was documented by Spectrum Health Beat reporter Sue Thoms and photographer Chris Clark in this story: 'Wonder' Kid Gets a New Jaw.
The following video captures social media posts, photos, and videos taken from the day of Peter's surgery on June 13, 2017 through the first two months of his recovery..
Peter had his last major jaw surgery when he was about 3 years old. Since then we have been in a "wait until he's older" honeymoon period. He was decannulated (trach removed) after the jaw distraction surgery, but his trach stoma never closed. Every ENT we consulted over the years was reluctant to close his stoma because they knew Peter would be having more surgeries (and likely need a trach placed while under anesthesia).
So, we've been in this strange holding pattern where Peter has not had a trach tube in since he was four, but he has never had the stoma closed. Removing the tube helped Peter get healthier (an end to the recurrent pseudomonis infections), and he no longer needed oxygen while sleeping. Over the years, however, his upper airway has gradually become narrower to the point where he relies completely on the trach stoma.
When Peter started high school, we began to research his options for jaw surgery with the ultimate goal of securing an upper airway. We elected to forgo another jaw distraction and instead have a complete jaw reconstruction that includes placement of a custom designed titanium TMJ implant.
Once the decision was made, the first step toward reconstruction was orthodontia. Peter had his second round of braces put on in May of 2016. The second step was a soft-tissue graft surgery that was done in January 2017. Peter's surgeon wanted to add soft tissue around his left mandible where the titanium implant will be inserted. Tissue was taken from Peter's inner thigh.
We are now days away from the complete jaw reconstruction surgery that is scheduled to start at 7:30 a.m. on June 13, 2017. This surgery will take 8-9 hours and involve craniofacial/plastic surgeons, ENT, neurosurgery, and many other staff. Peter will have his jaw wired shut for two weeks.
This is the longest and most complex surgery Peter has had, and we have been talking about it for nearly his entire life-- we just never knew what form it would take or when and where it would be. It seems surreal to finally be within days of this event, and I can't even begin to explain the emotions I am feeling. I will miss his handsome face, but I know how excited Peter is to see the changes.
We've were fortunate to tour the facility making Peter's custom implant while we were in California last February. We learned about the design and manufacturing process, which helped Peter feel comfortable about the surgery. They have also generously shared Peter's 3D images and implant design as it's progressed. It is comforting to know the people behind the design and engineering and how much they care about their patients.
Peter & Dede Touring TMJ Concepts in Ventura, CA
If you wish to follow Peter's #29th surgery, we will be posting updates on our social media pages (links above) as well as updating this blog periodically. To show your support, post on our social media pages with #PetesBand in the comments.
Having a pet is giving your child a friend who
loves them unconditionally, a friend who silently listens to all of their
troubles, a friend who cuddles next to them when they are sick, and a friend
that does not care in the least what they look like.
We have three picture book recommendations that will make great gifts for Easter Baskets, graduations, and other special occasions. Each of these recommendations is Mom approved by Dede, Teenager with a Difference approved by Peter (16), and SuperSibling/Middle-Schooler approved by Jacob (12). Happy gift giving!
We're All Wonders is a beautiful new picture book written and illustrated by R.J. Palacio, the same author of Wonder who inspired the #ChooseKind movement. This book already has a prominent spot on our coffee table because we love the message and illustrations so much! It's a timeless masterpiece that we think will become a mainstay in all early education classrooms. The story is a simple yet powerful reminder that everyone is different and kindness is important. Great gift for any age!
The Courage to be Kind by Jenny Levin & Rena Rosen is a new picture book full of advice for parents and teachers. It's written to be read aloud and encourages open and honest discussions about how we should be kind to everyone. There are photos and information about several conditions including Autism, Tourettes, Dwarfism, and Apert Syndrome.
The Girl with Many Faces by Brenda Scott-Coleman was published in 2012, but we just discovered this little gem. The book gives simple advice to young children who have difficulty making friendships. We love the message that, "friends are not made by the way they look. Friends are made by smiling, sharing, caring, listening, and joining together in fun and play." The price is unfortunately high for a soft-cover picture book, but we still wanted to recommend because of it's fun advice on how to make friends.
The novelWonderby
R.J. Palacio plants the seeds of acceptance and inclusion to all who read it.
Chris Jones, a middle school teacher inCapistrano Unified
School District in
Orange County, California, recognized the positive impact this book would have
on students. She took it upon herself to develop a 6th grade curriculum using the
#ChooseKind theme in Wonder. Mrs. Jones piloted the program last year
with two schools in the district and then offered it to all 6th grades for the 2016-17 school
year.
Peter with Ladera Ranch Middle School Teacher, Chris Jones
Peter with Don Juan Avila Middle School Principal, Josh Wellison
The curriculum includes lesson
plans developed and organized by Jones as well as materials from both RandomHouse and Children’sCraniofacial Association.
She worked locally with Coto de Caza Charity Classic’s annual
fundraiser, raising enough funds to purchase a copy of Wonder for every 6th grader
in the district. CUSD is one of the
country’s largest school districts with fourteen middle schools and about 4,000
sixth graders. Nine of the fourteen
middle schools participated in the #ChooseKind curriculum.
Ladera Ranch Middle School Projects
Shorecliffs Middle School Project
In addition to hosting a
training session for all the participating teachers, Mrs. Jones invited each
school to host a #ChooseKind Wonder assembly.
My 16-year old son, Peter Dankelson, and I traveled from Illinois to
California, bringing the story to life for Capistrano students.
Aliso Viejo Middle School
1 of 3 Assemblies at Ladera Ranch Middle School
Marco Forster Middle School
Peter and our family, like all
CCA Kids, represent a true Wonder story.
Hearing from Peter gives students a better understanding of what it’s
really like to live with a facial difference, why kindness should matter to
them, and why it’s not always enough to just be “friendly.” We educate students about trachs, feeding
tubes, cochlear implants, and fake ears in a fun and educational format that
puts everyone at ease and invites questions.
We explain why these devices are needed and how they are used. Students get to hold each device, including
Peter’s prosthetic ear! By the end of
the assembly, kids are no longer thinking about Peter's facial difference but
are, instead, more interested in his favorite Star Wars movie or video
game. Making the real-life connection
reinforces Wonder’s lesson about the value of diverse friendships and how
anyone can #ChooseKind anytime, anywhere.
Vista del Mar student asks Peter is he wishes he could change how he looks
Peter Takes a Selfie with Shorecliffs 6th Graders
Peter and I were welcomed at
all the CUSD middle schools we visited during our week of appearances. Students showed us kindness with their
applause, standing ovations, and chants of ‘Peter, Peter.’ Amber, a sixth grader at Shorecliffs Middle
School, even surprised us by paying for our dinner at a local restaurant! Another student raised his hand during the Q
& A, not to ask a question, but to ask if he could shake Peter’s hand. As a Mom, it was so heartwarming to witness
how excited the students were to meet Peter, have him sign their copy of
Wonder, and want to connect with him on social media.
Peter signs books at Niguel Hills Middle School
Peter signs a Wonder-blue cast at Newhart Middle School
Niguel Hills student asks to shake Peter's hand
Ladera Ranch students give Peter a standing ovation
Marco Forster students thank Peter for the assembly
Niguel Hills students have fun taking a selfie with Peter
Carl Hankey students pledge to #ChooseKind
When coupled with a real-life
connection, students become inspired to cultivate a community of kindness in
their school. Students who are inspired
to be kind make school a safe and fun place for everyone!
Many schools nationwide participated in The Great Kindness Challenge this past week. Our family was invited to Half Day School in Lincolnshire, IL to kick off their week of activities, and we had a great time speaking with the students and sharing our message to #ChooseKind. Thanks for their donation to Children's Craniofacial Association in honor of our visit!
