Nothing to Update

I wish I had something exciting to update on... but I don't.

Things have been pretty quiet, we're just enjoying our time together.

I finished up my last interim class (I had 2) last week, I've got this week off, and classes start back up on Monday the 31st. I've also been in and out of work when my schedule allows.

Our weekends haven't been any more exciting. We've been going to Matt's hockey games now that they are home again. Brode was a bit hesitant about them at the beginning of the season, but after the entire month of December off (all away games) we started going again and he has loved them. Last week he has his coat, hat, and mittens on 20 minutes before we needed to leave and he was demanding us to get off the couch and get ready to go. Personally I think he likes going because, Grandpa, Grandma, and Grandma Beth all go so he gets a lot of attention and they also get him skittles, popcorn, and chuck-a-bones.

Saturday night at the game Brode got a poster with all the players pictures on it. We hung it up in his bedroom and he has about 3/4 of it memorized. If you ever need to know an Ice Dog's name, ask Brode.

A few weekends ago we tried out a few of our new Christmas presents. First we got out the ice cream/sorbet/yogurt maker. My friend Leah was here from Madison so her, Brode and I whipped up some creamy vanilla ice cream. Second, we got out the Belgian waffle maker. Brode love his waffle topped with syrup, whip cream, and blueberries.

Sunday we got outside and cleaned up a little bit of snow we had on the driveway. Brode likes his sled, but doesn't get overly excited about it. When I brought him in the snow it didn't go down the hill very well, and when I ran on the driveway he yelled at me to walk. After I walked him around a bit I figured it was his turn to walk so we buckled Pooh Bear in and Brode gave him a ride. He was extremely proud of himself!

We had one big accomplishment this week - Brode wore his slippers!If you know us well you know that Brode will NOT change his shoes. By will NOT, I mean that the days that he has to get a new pair because there is a hole in the bottom and velcro doesn't stick I sent him to day care in the new identical pair where he cries for an hour until breakfast distracts him. He has been doing better lately. We did get him a new pair that he was actually excited about and he has never complained about his snow boots. He hasn't stepped outside of those boundaries much into the water shoe-sandal-slipper category. I don't know what came over him this week but he put he asked for help putting slippers on and then wore them two nights in a row. (He hasn't worn them since, but we'll get there)
These alligator slippers were from St. Nick two Christmases ago. That's how long we've been waiting, trying, and hoping he'll wear them!

Why?

It has happened.

Brode asks "WHY?" a lot!

He has simply asked one "why?" before, but yesterday it started. I'll set the scene for you:
I'm in the kitchen packing my lunch for work and getting Brode some juice. He is standing on the couch, peeking over the back watching me with that innocent little face.

"Mom I want some lunch."

"Brode we haven't even had breakfast yet. You're going to go have breakfast at day care and then lunch later."

"Why?"

"Because breakfast comes first."

"Why?"

"It's important. It goes breakfast, lunch, dinner. Breakfast, lunch, dinner."

"Breakfast, lunch, dinner?"

"Yes Brode."

"Why?"

"That's just what they're called. You can't have fruit snacks for breakfast."

"Why?"

This is about the point I looked up from my sandwich and realized I had answered a handful of the same questions over and over. Brode still does not understand why he needs to eat breakfast before lunch, but he was pretty happy with taking his juice and half mini bagel and heading to day care.

Whew - hopefully I'll have more answers next time.

Wrong.

Scene:
I'm laying in Brodes blue car bed in his bedroom. Yes, Full House - Uncle Jessie and Becky can't get Nicky and Alex to bed - style. He tucked my toes in then started playing with toys and books.

"Brode, you need to come lay down."

"Why?"

"We're done with books. Lets sing songs and go to bed"

"Why?"

"Because we're all tired and need to wake up early."

"Why?"

"You'll be crabby if you don't get to bed."

"Why?"

"You need a lot of sleep."

He walked over to me, leans over the side of the bed 3 inches from my face and with that high pitched, innocent voice: "Why?"

"Lay down."

It's only the beginning. He is so innocent and he even throws his hands, palm up into the air and I can't help but laugh but I dont know if its curiosity or annoyance that wants to ask.

Craniosynostosis: The Jorge Posada Foundation

(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

Snowman

The week of Christmas we got a snowfall that had the perfect snow for building a snowman. I tried to talk Brode into getting outside because we had the perfect kit for building "Frosty" but he wanted nothing to do with it. He loves going outside at day care but these days he wanted to stay in.

2 days later I finally got him out, but unfortunately it wasn't packy anymore. We worked with what we had and Brode made his first snowman!

This little guy stands right outside our front living room window so every once and a while throughout the holiday season Brode would walk by and say "I wanna see Frosty, Look there is Frosty! Mom see Frosty?"

Frosty is long melted by now after we had 40 degree weather this past weekend and the grass started to show, but now we always have pictures of Brode's first snowman of many to come!

Bulding our 2 foot tall snowman didn't take long so we needed more outside activities to keep Brode busy and get the bundling up process worth it. First we shoveled:

Brode seems to think shoveling the grass is a much better idea, and instead of throwing it into the grass it goes straight in the air and lands right back on him.

Second, we filled a squirt bottle with blue food-colored water and turned the snow blue!