One in a million

Rocky Balboa once said, “Let me tell you something you already know. The world ain’t all sunshine and rainbows. It’s a very mean and nasty place, and I don’t care how tough you are, it will beat you to your knees and keep you there permanently if you let it. You, me, or nobody is gonna hit as hard as life. But it ain’t about how hard you hit. It’s about how hard you can get hit and keep moving forward; how much you can take and keep moving forward.”

That quote sums up our lives right now. We’ve taken another hit. Eli will need another serious surgery. Last Friday, a CT scan confirmed that he has something called
Craniosynostosis. You’re probably asking, What in the heck is Craniosynostosis? Craniosynostosis (pronounced crane-eo-sin-os-TOW-sis) is when one or more of the special joints in a baby’s skull (sutures) grow together (fuse) earlier than normal. When these joints come together too early, a baby’s skull cannot grow properly.
Sutures are located between the bone plates in a baby’s skull. They allow the baby’s head to come through the birth canal. After birth, the sutures let the skull get bigger to make room for brain growth.
After infancy, the sutures slowly begin to grow together to fully connect the skull bones. The skull bones begin to grow together when children are about 2 or 3 years old, but the process is not fully complete until adulthood.
A baby can have one or more fused sutures. When any of the sutures grow together early, the baby’s head develops a specific shape, depending on where the fusion occurs. You can usually see an unusual shape to a baby’s head at birth or shortly after. When several sutures close early, the baby’s head can’t expand to hold the growing brain. This can cause increased pressure in the skull that may hurt brain development. (www.SeattleChildrens.org)

There are different types of Craniosynostosis. Eli has Lambdoid Craniosynostosis. It is quite rare and occurs in only 2-4% of patients with craniosynostosis (1 in 300,000). The lambdoid suture is paired and located along the back of the head and it may fuse prematurely on one side or on both sides. Typically, fusion will cause the skull to develop a trapezoid shape, indicating restricted growth at the fused suture and compensatory growth changes surrounding the suture. (www.CraniofacialMD.com)

You read that right: 1 in 300,000. Pair that with Down syndrome, VSD (heart defect), and Infantile Spasms and our kiddo is 1 in a million. But, we already knew that.

Don’t worry, we aren’t giving up the fight – not even close. We take the hits and keep on moving. Some days we go backwards instead of forward but I refuse to let life’s hardships win. It could always be worse, I do know that.

Next up, we’ll have a meeting with the team at Seattle Children’s. The medical team will consist of a craniofacial plastic surgeon, a pediatric neurosurgeon, a pediatrician, a nurse and a social worker (for support and assistance). We will most likely schedule his surgery at that appointment (they would like to have the surgery done between 9-12 months old). I have been assured by other doctors in the community that Seattle Children’s has the best Craniofacial Department in the nation. At least I know Eli will be in good hands when we once again have to hand him over for surgery. Ugh. Just writing that gave me anxiety.

Please keep Eli in your prayers. Our warrior faces yet another challenge but with the strength of prayer, community, and love I am confident he will prove victorious once again. ❤

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18 comments on “One in a million

  1. Goodness, how incredibly frustrating, terrifying and heart wrenching for you. But, thankfully you and your boy in a million are even tougher than Rocky and you’re proving your resilience one day at a time. Take a moment to feel however you need to in the face of this challenge, and know that there are lots of people thinking of you and sending you love, peace and strengt. All our love to your Eli warrior from the Love bunch in Australia x

    • It IS incredibly frustrating but the love and support we’ve received from so many helps us through the sadness. Your love (sent all the way from Australia!) is so appreciated! Hugs to you and your family.

  2. You are right–he is definitely a warrior. He is strong and will get through this like he’s gotten through everything else and come out smiling on the other side!! You all are constantly in my thoughts.

  3. Thoughts and prayers for your youngest Champ and the rest of you! One day, this battle will be a part of the past. Much love always.

  4. Prayers are coming from Colorado. Eli is so fortunate to have a mommy that wears her faith so beautifully. I can tell what a fighter you are and I bet your little one is too. I’m asking God to send his angels to wrap their arms around you and Eli. Know also that those you have never met have our arms around you too. God bless!!

    • Thank you so much Darcy! I appreciate your kind words and most importantly, your prayers. You are right, Eli is a fighter – much more so than me. He has showed more strength than any baby should have to. His resiliency inspires me! Blessings to you.

  5. You know you have a special boy. Eli is so resilient, so beautiful and he has much to teach us about ourselves. You have grown so much through all of Eli’s struggles. You have found the faith that was always within you, to see you and your family through all of this and that is the most beautiful thing to have in the world. I know this may not be very comforting to you right now, going through this and wondering what is next but here’s the thing; God didn’t promise us that bad things would happen to us or those we love, His promise is to be with us through all of it. You are blessed. I will keep you and sweet Eli in my prayers. Love & hugs,

  6. We had Dr. Samuel Browd as our neurosurgeon and loved him. We also worked with Darcy King in craniofacial. Great people at Children’s. We said a prayer for you all tonight.

    • Thank you so much Sarah! Darcy is the one who we’ve worked with so far. We meet with the surgery team (not sure who) in a couple if weeks. I appreciate your prayers!

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