Still Frequent Customers

It’s funny how time and experiences change our perspectives. I remember the times when I used to post about every doctor’s appointment for Zoey. I posted about our questions, every medical procedure, many of the tests and treatments, and every so often, a few solid answers. My way of processing this sudden upheaval of Cranio to my organized and planned little world was to document all of it. List it, capture it, question it, follow prescribed treatment, and return for follow-up as needed. Lather, rinse, repeat. Move toward the bigger corrective surgeries, pass through the long days of waiting in a foggy haze, and continue with recovery. More tests, more questions, more plans. At some point it became our new normal. I was able to continue on with less hoop-la and without the intentional driving of a new Cranio Parent, at least most of the time.

The calmer season that follows the initial year or two of constant upheaval is very common for Cranio families. Many speak of it as being “on the other side,” particularly when they are fully treated for the remainder of their child’s life after a single, albeit heartbreaking procedure. I think this concept is a big reason why many personal blogs and pages devoted to craniosynostosis fall by the wayside once a Cranio baby reaches her 2nd birthday. The craziness has subsided and everyone just wants to move on with life as normally as possible. I get it, really I do! I am so thankful that regular life continues and the daily stress of this diagnosis doesn’t usually last very long. Granted, not all Cranio cases are quite as simple, with their medical folders gathering dust as children collect pencils and notebooks for school. We are among those who, even after 5 years, still have many questions concerning what our Cranio baby will be able to accomplish in her life time. We are learning that our answers will largely come only as Zoey tells us what she is able to do, and as we slowly stretch her limits and encourage her to reach higher. There are simply not enough others like her who have already been documented to set forth a regular pattern, so she is forging her own path in every area of life. Really, everyone must do this to some extent, but I find it interesting when even medical professionals refuse to lay any claims on a predictable path for her.

I am very grateful that the circus of appointments are less frequent these days. They still continue in spurts though, regardless of how little attention I bring to them. We have already faced Zoey’s 4th appointment of 2017 with her Pediatric GI surgeon. The novelty has long worn off, and the struggle is real to cart 3 kiddos under 5 through a hospital for an appointment and routine KUB X-ray. Zoey has some differences in her digestive tract that need monitoring occasionally, which may or may not be related to her Cranio diagnosis. When we do go, there is still a feeling a familiarity. Some nurses think Jacob is David because there is no way my second little baby is already 3 years old.  Others have crayons and paper on standby for Zoey.  I now force a big smile every one of the 3-4 times someone in our path comments on how I have “my hands full.” When I’m not stressed out, I really do love having a loaded up double stroller, complete with sticky fruit snacks in the cup holders and sweatshirts piled in the basket. It’s exhausting and demanding. Every so often I get it right, and I am so proud of myself for the tiny battle I have won. This includes a previous visit to the outpatient waiting room when Jacob pooped through two layers of clothing onto his carrier car seat while waiting in the stroller. It was an unexpected blow, but thank God I was ready for it. I had a complete extra outfit, a good supply of wipes, and even an extra burp cloth to lay on the clean, damp seat for him. I was just buckling him back in when the technician called Zoey’s name for her x-ray. You know, no big deal.

I have many more failed attempts than successes, but let’s face it: I want to scroll back through these days and remember that I got it right a few times too. So here is proof to Future Me: you know that one day at St Mary’s Hospital in the outpatient waiting room? Not all of them, but that one day? You rocked the 3 under 5 years old thing with the double stroller going solo that day. #focusonthegood

In light of all this, I’d like to revisit the bigger question of why it is that we are still actively blogging as a Cranio Family. First of all, my husband is thus far the only published Cranio Dad on social media. Go ahead and Google “#craniodad” and let me know if you find someone else. We would love to connect with him! I am among a few other moms who publically write about their experiences with Cranio, and a much smaller number who are still actively writing on their own pages after 2 years.  No one else is writing as a married couple that I have found, especially in regards to family living. We write together because we want to provide a more holistic view of family life when it is affected by Cranio, for the short-term and longer-term.

After 5 years, I continue to write about Cranio primarily because Zoey continues to surprise me, to encourage me, and to shine in new ways. Her story is unique and deserves to be told on a scale as large as I can offer to as many people as will listen. Her life speaks hope in a way that very little else can. I also write because our world needs to recognize more Cranio babies thriving as toddlers and students, and even into adulthood. So many social media stories stop after the scary skull surgeries. Yet most often there is an amazing collection of lives that continue on in an affected family. These families are forever softened to the once foreign diagnosis of craniosynostosis, and often to every other child with a complicated medical history as well. There is more to tell about how Cranio affects us, and I want to offer our family’s continuing story. Lastly, I write because others need to hear the positive stories lived in the aftermath of Cranio. Too many families are terrified of the vague unknown. Too many parents allow fear to change their family decisions so that they change jobs or don’t have any more children, regardless of what they wanted before their Cranio child entered their lives. I recognize that fear. I lived in that same fear for about 8 months after Zoey was born. I feared that I would never have the large family that I had always dreamed of. I feared that I didn’t have it in me to function as a parent beyond the demanding needs of Cranio. How could I handle it physically, emotionally, mentally? What if my second child had Cranio as well? I had so many questions, and the unknown was paralyzing. One of the most reassuring responses I received at that time came from a sweet daughter who is one of five children in her family. I think it was the second child who was born with Cranio, and their mom continued to have three more children afterward. This daughter’s response was so confident in speaking to my desires and fears as she commented, “Don’t worry, you will have more. It will be amazing.” I can’t really explain it, but I refused to let my fear of inadequacy cripple my dream of having more children once I was able to read such an affirming comment from this perfect stranger. I want to offer that same hope to others. I want to remind Cranio families that there is life after the diagnosis. There is family after the procedures. Despite how much our perspectives may change, the world continues to turn after the Cranio hurricane hits. Don’t let it crush you, but allow it to shape you into the next phase of who you become as individuals, and as a family. Don’t worry, it will be amazing.

 

 

    Love big: What would you do?

    What a week, and it is only Tuesday. I have been wracking my brain on if and how to respond to something for the better part of two days. Then, this article came across my desk, and all things came to a halt. We talk a lot about how we are raising our kids to live big, love bigger, and be kind, always.  But it is awesome to see other kids doing things that exemplify this.

    The long and short of the article is about Blake’s Big Heart. This boy, Blake Wainwright, is doing something awesome.

    Love Bigger - Blake

    “When Blake Wainwright’s sister was diagnosed with Craniosynostosis at four months old and needed skull reconstruction surgery, Blake wanted to do something to help the hospital that was helping his sister.”

    Blake is taking up the banner of a sibling, and showing nothing but love, bigger love than many.  In just a few years he has raised $4,000 for UNC Children’s Hospital, where his sister has received care for her Craniosynostosis. $4,000 from a boy who is now eight years old. Let that sink in a little bit. An eight year old boy is raising money for the hospital that is taking care of his sister, because he wanted to do something to help.

    Love Bigger: Why is this important?

    In light of all the things going on in the world today, this story is the reminder of all the love that is out there. Ladies and gentlemen, what Blake is doing is rare. There is a lot of people out there that stand with mouths agape as they face things like Craniosynostosis. But Blake is showing us what it means to love bigger. Here is a link to his Facebook page if you want to stop by, give them a like, and tell him how awesome he is. After all Blake is showing us all how to…

    Live big, love bigger, and be kind, always.

    Trailblazing in the dense woods, watching others leave.

    Part of being a trailblazer often means doing something unique, and strange.  But, that is where I find myself. Trailblazing as a dad who openly discusses what it is like when you have a child with cranio. Also, talking about how it has changed your view on fatherhood, and enhanced your skill set for your other kiddos.  Trailblazing is not for the weak of heart.  When it comes to cranio, trailblazing is all I know.

    Google News, various medical journal subscriptions, and scholarly articles often fill my inbox letting me know that out there, somewhere, cranio was mentioned. Many times, these are the things that I read first thing in the morning.  Let me tell you, there is not much of a better way to start your day then by kicking back and reading a medical journal where they talk about the statistical skull geometry in pediatrics for the basis of development of anthropomorphic test devises to aid in recovery.  But, then again, I could just be weird.

    This article came across my feed this morning, and something about it struck me.  After reading it a few times, I realized, that there is a glaring subtitle that MANY in the cranio community have grown far too accustomed to.

    “Doctors had previously told eighteen-month-old Finley’s mom that his condition was nothing to worry about.”

     

    Let that sink in.

     

    A mother, goes into the doctors, worried about her little one, and is told that there is nothing to worry about.  This happens, not just for cranio, many times. The idea of parental intuition is a WHOLE different topic, for another day.

    In many ways our family was extremely lucky when it came to Zoey being born with Bicoronal Craniosynostosis.

    The midwife on duty just happened to be the only one on staff that had just happened to have delivered a child with cranio a few months prior in Australia.

    We just happened to be at a hospital where one of the top rated craniofacial doctors just happened to be working.

    Oh, and just happened to be at the hospital that day, just a few floors up from the NICU, and just happened to be free when the midwife contacted her.

    The same midwife who just happened to know of this doctor in the hospital based on a conversation about the baby that she delivered in Australia.

    This doctor just happened to be able to get to the NICU (even before I could) to see Zoey, and instantly was able to diagnose her cranio, have it charted, and begin all the things that were needed to get us where we are today.

    We also just happen to be followed by a team that has rigorous open communication, briefings, and a lack of rotation.  This means things like for the first five surgeries that Zoey had, we had the SAME anesthesiologist, the SAME nurse, and many of the SAME people in the room. This means that a phone call and an email were sent to our selected (by chance) pediatrician (we love this guy, really) so he had answers to his questions from another doctor before we even saw him. Just so he could focus on her care, and our questions as well.

    We have been blessed.  Very blessed.

    Many are not granted this scenario.

    They spend months looking for answers.  Saying the same things to countless people wearing scrubs and white coats, all with the same look in their eyes.  Until, it just so happens, that they come across the one person who knows. There is a large sigh of relief as they begin to take the steps that many knew were coming, but were just waiting for someone to show them the way.

    Regardless of how we started down the path that surrounds Craniosynostosis, and not paying mind to the fact that all of our paths are different (hey, we are all in the same forest at least); there is often a battle cry that arises from our lungs.

    We want more people to know about cranio, so countless others do not have to spend months (or years) in the briars blocking the path.  Granted, none of us would choose to be on this path. However, there are some of us out there trailblazing so others have a clearer path.

    And then, there is a stark and enraging thing that happens.

    For many, they are able to have a single surgery, and they are on the other side.  Their lives go on as though nothing is wrong, and their voices grow silent.  I have seen countless mom-blogs go radio silent within months of their single surgery. Many accounts are deleted or completely re-purposed within 18 months. I am not saying that the mother in the article will cease on her mission.  In fact, I hope that she carries on the banner and makes great strides in raising awareness. I see having her story told in an article in Cosmopolitan as a huge step in that mission.

    However, I have been trailblazing for awhile now.  As much as I hope otherwise, I will, instead, suggest that it is far more common for her voice to grow silent over time. Honestly, I get it.  If we were in the position where we only needed a single surgery to repair Zoey’s cranio, we too may have been able to move on with only memories.  We may have been able to move significantly past every tense moment, the times in surgery, the times in recovery, the endless research. For us, and for Zoey, this is not the case. Perhaps that makes us special. Perhaps that is what makes us the trailblazing family that we are.

    Too often crowded social spaces are full of the battle cry, only to have the resounding voice grow dimmer and dimmer.  Frequently there are those that find these groups when they need them. They find comfort, they find peace, they find direction. The speak of doing great things to raise awareness, only to grow silent over time. There are a few, like us, that stick around, and answer call after call for help. But the fact remains, that many have left.

    This is why I am trailblazing.

    Yes, I am still here. My deep, resonant voice has been echoing in a room often not occupied by other men for almost five years. Trust me, I am constantly on the lookout for other dad bloggers openly discussing craniosynostosis. I have yet to grow weary in my attempt to carry the banner of awareness. For me this means helping professionals understand what cranio is, and what it looks like. This is so that when they see it, they know what to do.

    This also means exposing what life is like for us, as a family.  Showing  what my daughter has been through, and what she continues to go through. Just so others out there looking for answers can find them here.  I have yet to falter in speaking. I have yet to lose my desire for teaching all those that I come across.  Watching countless others wax and wane in these woods has been, interesting.

    But I am not finished.

    Live big, love bigger, and be kind, always.

      What are the different types of of surgeries (currently) that are used to correct Craniosynostosis?

      We have done a fair amount of research in all matters relating to craniosynostosis.  Having a child born with the condition quickly opened oureyes into the world of cranio.  We have pulled from sources such as Seattle Children’s, Cincinnati Children’s, and our own experiences with our daughter.  We did our best to compile some explanations of what the surgeries are, what they entail, and when to expect them.  Click any of the links below to learn more (they are listed in order by age of the child). The ones with * are ones that Zoey has been through.

      *Strip Craniectomy

      Endoscopic Strip Craniectomy

      *Posterior Cranial Vault Distraction

      *Fronto-Orbital Advancement

      Le Fort III Advancement

      Monobloc Frontofacial Advancement

      Le Fort III and Monoblock Advancement by Distraction Osteogenesis

      Le Fort I Advancement, or Upper Jaw Advancement

      Mandibular Osteotomy

      Final Facial Contouring

        What are the different types of Craniosynostosis?

        The types of Craniosynostosis are classified by what suture of the skull it affects. Here is a list of the types, and some information about each one.

        SAGITTAL:

        This is the most common (40%-58%) of all diagnosed cranio cases and affects more males than females. It is caused by early closure of the sagittal suture and results in scaphocephaly. Infants will often have a protruding forehead, an elongated head, and protrusion at the back of the skull.

        CORONAL:

        This is the second most common form and effects mostly females.  It is caused by closure of the coronal suture on either side resulting in anterior plagiocephaly, or bilateral resulting in brachycephaly. Infants affected will often have an elevation of the eye socket, flattening of the eyebrow ridge, and displacement of the nose on the affected side.

        METOPIC:

        This is the third most common form and occurs predominantly in males. It is caused by closure of the metopic suture, located between the soft spot and the nose, and results in trigonocephaly. Infants will often have a prominent ridge down the middle of the forehead, a pointed forehead, and eyes that seem too close together.

        LAMBDOID:

        This is one of the more rare types of Craniosynostosis.  It is caused by closure of the lambdoid suture which runs across the skull along the back of the head. It results in posterior plagiocephaly (not to be confused with positional plagiocephaly).

        FRONTOSPHENOIDAL:

        This is one of the most rare types of Craniosynostosis. It is caused by closure of the frontosphenoidal suture on either side, located near the eye socket, resulting in frontal plagiocephaly. Very rarely the closure can be bilateral. Infants will have a flattening on the front of the head toward the affected side, and possibly indentation near the temple or eyebrow bones.

        MULTIPLE SUTURE:

        Approximately 5% of diagnosed cases involve two or more sutures fused prematurely and are categorized as complex forms of craniosynostosis.  These cases most frequently have increased intercranial pressure, and are associated with developmental delay and a high rate of multiple procedures being medically necessary.

        PLAGIOCEPHALY:

        This term describes a flat place on the back or side of a baby’s head. It is caused by pressure on the bones of the skull before or after birth. This usually happens because of the way a baby likes to lie (their positional preference) in their first few months of life.