#tbt 2 years ago Jonathan had his surgery for #sagittalcraniosynostosis. It seems like a lifetime ago and the anxieties and worries I had then, and honestly even more so a year ago when it really all hit me...it’s all in the past and I’m stronger for it now. I’ve also been on my anti-anxiety med for exactly a year today.
Look at how beautiful his head is now 💜 #JonathansCranioJourney #craniokid

Our Grace ❤️ Is having another surgery tomorrow afternoon, Tuesday 7/17 your good thoughts, prayers, and happy vibes are greatly appreciated. For Gracie, for her family, the surgeons and the support staff. The surgery is expected to take 4 to 6 hours. Gracie girl is strong, and sassy and beautiful and we want her to heal quickly from this surgery so she can get back to Moana and bubbles and figuring out that Play-dough and bossing the nurses around!

💞H A P P Y • B I R T H D A Y • I N D I💞 My littlest baby turns 6 today and I can not wait to get home to spoil her rotten! Don’t ever change sweetheart. You make daddy laugh everyday 💕 Happy birthday princess 👸🏼 #birthday #daddysgirl #love #daddyslittlegirl #craniosynostosis #craniokid #smile

So trots op hierdie klein champ! #bengroenewald #dankbaar #craniostenosis #craniokid

But the MOST important thing about July 3rd ...
It’s Ry’s Five Year Cranioversary! 🖤
Five years ago, our little badass underwent surgery to correct saggital craniosynostosis, a diagnosis he was given at two months.
Craniosynostosis is the premature fusing of the skull plates. Without room for his brain to grow, he was facing major physical and developmental roadblocks. Surgery was really the only option and to new parents, it felt like the end of the world.
At six months old, Ry underwent the “pi procedure.” His head was cut open from ear to ear and strips of skull (in the shape of pi) were removed. His head almost immediately rounded out and the recovery wasn’t nearly as brutal as you would think. #goscience
While we have the benefit of hindsight to write this (on top of the fact that he is currently perfectly healthy), there were so many blessings hidden in this obstacle.
First, he was diagnosed with something that could be fixed in one surgery. We saw so many children and parents at the hospital that didn’t have that option. And we will never, ever take having healthy children for granted.
Second, it showed me that I am not (as hard as this control freak tries), always in charge. I could not fix what was going on with my baby and it was the most terrifying feeling.
But finally, and perhaps the most important lesson, we learned how strong we are. Handing our baby off to a group of doctors and nurses was gut-wrenching. I am crying as I type this remembering how absolutely powerless and hopeless I felt.
But guess what? We made it through. We leaned in to our family and friends, and put on a brave face. We trudged through the tough and now we’re better for it. And now whenever we think something is hard, we look back at that moment and snap out of it. ♥️
We are so in love with this little boy. He is kind and bright and compassionate. He is persistent and loving, hysterical and meticulous. He is everything that we could ever hope for and we are so blessed that he is ours.
#craniokid #neurosurgery #craniosynostosisawareness

Day 2 in Dallas was a success! Awesome farmers market followed by some pool time with @kobrakamanda 🏊
#dallas #dallasfarmersmarket #producepegasus #jalensam #craniokid #swimtime #rainbownarwhal

This boy amazes me more everyday. His dressing is off and his drain is out.
#cranio #craniowarrior #craniokid


This was by far one of the hardest season of my life. Watching my little 6 month old baby boy go through cranio surgery. It really doesn’t feel real anymore that that happened to us. We called him Emery not knowing his name meant “brave one”. And here we find out at 6 weeks old he has a condition called “craniosynotosis”. That sounds a like foreign language- but basically his head was cut ear to ear to drill out a soft spot.
He defied all the odds. And here is his testimony...
1. He was 80% chance he would need at least one blood transfusion- He needed zero!
2. He was 100% to look like a truck had hit him 24-48 hours post surgery. This boy had no bruises- minimal swelling and would cry only a handful of times when he woke up only to be soothed by me singing “Jesus love you”. Both nurses and doctors were shocked and they had never seen it before than one other patient years previously. The doctor even surmised there must be swelling else where. NOPE! Nothing!!! What a miracle.

We found bravery through this child’s miraculous recovery and his temperament and sweetness in this scary time.
Emery- we love you! You are remarkable. You are our brave one. You Have taught us more than you will ever know. You have a plan. You have a destiny. We celebrate you today on your four year surgery anniversary #craniokid #emeryjude #braveone #stollery Stollery Children's Hospital Foundation

I can’t believe it was 3 years ago! Our little man has grown into a strong, healthy and cheeky boy 💙 #craniokid #longestdayofmylife #ourlittletrooper #warscar

If all the raindrops were lemon drops and gum drops... Trying to catch raindrops 😂
#craniokid #curlykid #raindrops #tobeakidagain

Then and now... Clearly this kid feels a certain way about his corn!! #jalensam #craniokid #cornobsessed

Wow it’s already been a month since my last post on this account 😱 Parker is 10 months old today! The last 30+ days have been so tough for our family, but he’s proven that size has nothing to do with strength - he’s the bravest, strongest little human I know, and we are SO proud of him for carrying both of us through this journey. He’s recovering from head surgery with flying colors and looks the cutest doing it 😉😍 *shameless self marketing note* I’ve been designing milestone blankets and cards! (And using my son to model them 😉) I’ll be selling them next weekend @hudsonriverexchange summer market...follow my page @chelsea_marbles for more updates @ohreallyswan #scatielife #parkerdavis #craniowarrior #10monthsold

Tommy did great. Everything went well and he is in recovery. Rob just handed Tyler off. They are saving the neighboring bay in recovery for Tyler so they will be with each other at least until we get assigned to rooms. #craniosynostosis #craniokid #nyulangone #newyorknewyork #justchillin #warriorspirit

For those who didn’t know my precious little peanut has Coronal Craniosynostosis🐘🍼 Coronal Craniosynostosis is a premature fusion of one of the coronal sutures (unicoronal) that run from each ear to the top of the skull. We have already met with the the plastic surgeon and next week we will meet the Nero surgeon👨‍⚕️ Also her pre-op is next week too. Braelynn will be having surgery on the 26th of this month.I am extremely nervous, scared, emotional, and my anxiety is threw the roof; but I know that this is what my daughter needs and as her mother I will do anything for her. I love her with all my heart and soul. Please pray for her!💚#babygirl #mamatribe #littlepeanut #loveofmylife #craniosynostosis #craniokid #craniocarebears #braelynnmychael #majorsurgery #scaredmommy #prayersplease #prayerchain

"I burped. It's your fault." Things kids say. In Toronto at Sicks Kids for appointments. #craniokid #cerebralpalsy 💕💕

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