(Pre-warning - Brode's CT scan snapshots are featured below, may be awkward for those who don't look at body parts like some of us every day - yes, I forget that it is not normal for some people to hang out with cadavers and x-rays. Also, another warning - it's long!)
I have mixed feelings about cranio. I second guessed this post many times. I don't want to dwell on the situation, condition, term, and past, but it has brought us right here and played a large part in our entire family's life.
I say this with caution, but we're 98% out in the clear. Our craniosynostosis journey is in the maintenance phase, but every day other kids and families (roughly 1 in every 2000) are starting their cranio journey. I have often written about Brode and his experiences and battles with the doctors, hospitals, and surgeries but I haven't described the condition or the level of awareness that is currently growing.
Jorge Posada is the catcher for the New York Yankees. His first child, Jorge Luis, with his wife Laura Posada was diagnosed with craniosynostosis in 2000. After eight surgeries Jorge Luis is a confident little boy with the same scar as all of our fellow cranio kids. The Posada's have written their story, together with their family, fellow baseball players, and doctors and published "The Beauty of Love". I finished the book in a day and a half this week and although I loved it, it was extremely hard to read as it pulls greatly on the heart strings. All of the words narrated by Jorge and Laura are so real and defining to the exact moments we have sat through.
It was intriguing to read the Posada's family narrative and find our story weaved within theirs. These quotes define the exact emotions we had when we got the first diagnosis:
"the mysterious illness would be an ever-shifting phenomenon, one that would elicit much anguish and little relief."
"our son's well-being became our unspoken mission, fueled by what became our unshakable determination to stay positive."
PRE-OP CT SCAN - June 2009 - The head Brode was born with and provided the diagnosis.
We moved into surgery, the crucial defining moments of how this disease would progress. Laura describes it perfectly:
"The life of my son was now in the hands of those individuals and their team of nurses, a gaggle or strangers whom I had no choice but to trust."
We knew our surgical team, but met handfuls upon handfuls of doctors and nurses the day of surgery that we knew nothing about and would provide care.
After surgery - recovery:
"the doctors and nurses came out and told us that the surgery had gone well, buy nobody really explained what that meant. They were reserved and matter-of-fact in their explanation, making it all still feel so incredibly vague." I remember Matt and I walking out of the consultation room looking at each other asking how the doctor could be that calm and brush off the entire explanation when we were freaking out!
Recovery continued:
"It is the cruelest of punishments to have to see one's child this way, a traumatic image that has the power to haunt."
"He heard her voice, you saw this genuine little start to form on his face. That exact moment that he heard the sound of his mother's voice, he knew that everything was going to be okay. He was so strong. I remember thinking that if this kid can survive thing, anything is possible."
POST-OP CT SCAN 1 - September 2009 - Brode's remodeled head. Replaced forehead and 5 plates to hold bones steady and promote bone growth: 
At this point we worked together with doctors to watch for changes and take precautions for scar care until the following surgery. Jorge said about Laura: "It was as if she now considered herself an active participant on our son's medical team, and she took it upon herself to tend to him like a true professional." Yes, I have papers, files, and notebooks full of all the paper work, notes, and questions we asked when first meeting. The doctor takes out his, I take out mine. I also very much became Nurse Malorie when 10 days of scar care each time three times a day brought out the gloves, antibiotic, peroxide and Q-tips!
We waited for one year:
"Our experience ultimately taught us that the biggest challenge facing craniosynostosis is the need to create a sense of urgency." One of the most talked about topics on cranio support websites is the torment that waiting brings, but sometimes it's for the better. Healing takes time.
POST-OP/PRE-OP CT SCAN 2 - June 2010 - We were able to see all the new bone Brode developed closing soft spots. This CT served as the model for surgery numer 2 where they took out the plates and filled in the remaining holes (very large one on his right, not visible).
Although there were many parts of the book that brought back horrifying memories, I also particularily like this one, "even in that dark vortex of bad memories, there were some very special moments." The second surgery ecspecially, we had laughs. Although we were sitting in ICU after being awake for 24 hours Matt and I sat with Brode as he screamed to put his shoes on and go for a walk because he loved those shoes so dearly. We knew he was still there even if swollen. This video is from the first surgery:
There were multiple moments that he would show his personality, like recognizing Grandpa's mustache, that gave us all smiles!
"part of dealing with an illness such as craniosynostosis is to learn how to embrace the uncertainty that it comes with and simultaneously do our best under such indefinite conditions."
We hope to complete a CT scan June 2011 to see if all the bone has healed and filled where the plates were. If not, we're back to uncertainty.
The Jorge Posada Foundation was created with many goals in mind including awareness, assistance, and mentoring. Through fundraisers, brochures, and education to new doctors and families the foundation spreads awareness and the ability to recognize cranio. Laura pointed out in the book that we empasize particular conditions that everyone is aware, like down syndrome, of during pregnancy when a condition such as cranio is just as common but extremely unknown. Early recognition is essential and many people, even doctors, cannot recognize it. Brode has been viewed by every pediatrician in our local office where they have each taken time to examine it if they have not seen it before so they are aware. An assistance program is another aspect of the foundation. Many cranio kids need multiple surgeries that can be assessed at six figure costs each. Families are often shut out by insurance companies due to the belief that is a cosmetic surgery by a plastic surgeon, but they are clearly failing to see the life threatening issues that can come along with the disease. Lastly, the foundation offers a mentors program - and what do you know, I am one of them!! Families who have been through cranio from all over the country are joined together in this mentor program waiting for families to assist. Newly diagnosed families are able to contact the foundation where they will be matched with a mentoring family in the same area, with the same doctor/hospital, with the same type of cranio (there are several), or if something specific about the situation like a childs age is present they can be paired based on those conditions. Through the program information, advice, and support is spread and encouraged!!
There are also several websites that offer support, two being cappskids.org and craniokids.com. Definitions and descriptions provide information to everyone interested, forums are maintained for families to discuss current situations and ask questions as well as develop friendships through something we all have in common. Both sites promote awareness through clothing, hats, headbands, and specifically cappskids provides free "Proud Cranio Family" blankets to children on surgery days!
I thought having Brode would create who I am today, and although it has changed me, cranio has had just as extensive of a change. Sitting in the ICU, it is difficult to grasp where you are spending summer vacation as a 20 and 21 year old. Laura said "I remember there was a very sick little baby in the next room whom we would see every day with his mother. I never found out what was wrong with the child but it was evidently serious, and I felt a sense of compassion towards the mother who, like me, was trying to survive emotionally under such traumatic conditions." Our summers in the ICU were joined with children with cardiac conditions, near drownings, lawn-mower accidents, burn victims, and shooting victims. Seeing children in harsh conditions breaks your heart, but passing the parents in the hallway all day every day created a silent relationship we still wonder about today. Every appointment we go back, driving past the ICU windows we always say out loud "I wonder where they all are and how they're doing."
Jorge started: "In this journey we discovered a love so pure and real, a love that had nothing to do with our egos and everything to do with our family. Just like that sense of 'what matters' was turned on it's head, an unexpected paradigm shift that ultimately brought us endless transformation." Endless couldn't be more correct. Responsibility, generosity, and dedication have all been exemplified with all of us as we deal with a serious issue and develop a compassion for Children's Hospital and everyone involved with it.
I'll finish with one of the strongest quotes the Posada's feature in the book:
Start by doing what's necessary; then do what's possible; and suddenly you're doing the impossbile.
-St. Francis of Assisi
We had a wonderful Easter! On a day that the 2 year old could potentilly have a million breakdowns for his basket, in church, too many people around, too much candy, and wanting more eggs.... we seemed to avert them all!
