A Beautiful and Interesting Adventure; Our journey with Craniosynostosis.

I finally figured out how to get the images of RyK's CT scan off of the CD I requested from the imaging department. At the time I wrote this post , they only pictures I actually had, I took with my cell phone from the image on the computer at the neurosurgeon's office. Here are some before CT Scan Images of sagittal craniosynostosis on an 11 month old child.  Here are the CT Scan Images after Cranial Vault Remodeling surgery on a 15 month old child. For a Recap of her surgery click here For before and updated after pictures click here To view all my posts click here

The time has come, a year has finally passed. HAPPY 1st CRANIOVERSARY to my beautiful girl!  Unfortunately there hasn't been a day where I haven't thought of her surgery or her condition.  Hopefully, with time there will come a day where it all seems like a faint memory. But for now, when I look down and see her scar I am thankful for a heathy, happy child. I am grateful to live in a time when surgery is an option, when skilled doctors spend their time learning about the brain and the skull, when all over the world pediatric neurosurgeons are performing successful surgeries.  I wish that someday, in the not so distant future, every pediatrician will know what craniosynostosis is and be able to recognize the condition. We have decided to become part of a clinical study on craniosynostosis. Hopefully by contributing we can help doctors understand more about how it occurs.  "I beat cranio, what's your superpower?" Photos

Yep. It happened. Our first trip to the emergency room. I expected this day would come. However, not as soon as it did and definitely not while I was right there with her. To make what could be a long story shorter, here's an overview of the incident: Rylen pulled on some party decorations which were hanging on a large metal Christmas tree stand. The stand, the decorations, and a storage bin all came tumbling down on top of her. I was less than 2 feet away from her, and I wasn't able to stop it from happening. She didn't cry, not at first. She was just there, in the midst of the pile when I picked her up. It took about 20-30 seconds for me to realize she was bleeding. When I saw where the blood was coming from, my heart sunk. She had a gash in her head. That skull that was perfectly remodeled less than a year ago had been hit, hard.  Thankfully she didn't have a concussion. By the time we got to the emergency room she was fine, except for the gash. She was gi

10 weeks before my daughter had her surgery, 13 month old Harry underwent his cranio reconstruction. With Harry's mother's permission, I am thrilled to share some of his journey! When Harry was born in January of 2013 his parents noticed a ridge on the top of his head and a longer and more narrow head shape. Those things made it difficult for him to fit in newborn hats, but having never heard of craniosynostosis before the family wasn't alarmed. It wasn't until 8 month old Harry was admitted to a hospital for gastroenteritis that a nurse noticed something was wrong. A scan then confirmed that Harry had Sagittal Cranosynostosis. Harry's 7 and a 1/2 hour  surgery was performed on March 12th, 2014 in the Great Ormond Street Hospital in the United Kingdom. Harry recovered well and is doing great! He is now 2 and less than a month away from his 1st cranioversary! His parents, Amy and Charlie, have done an amazing job spreading awareness for craniosynostosis. They

Welcome to Cranio and Curls! It occurred to me that not everyone who comes across my blog will have heard of craniosynostosis before. For those of you who are unaware of the condition it occurs in approximately 1 in 2200 babies. CHECK YOUR INFANT FOR LACK OF A SOFT SPOT AND FOR RIDGING APPEARING FROM BACK TO FRONT OF HEAD,OR ON FOREHEAD GOING TOWARDS EYEBROWS. There are other "signs" that a child who has the condition may or may not have but those are the most common. Here is a good an explanation from an organization created by two mothers of children with this condition. It is designed to offer support and awareness for Craniosynostosis. You can find their website here  Craniocarebears "The normal skull consists of several plates of bone that are separated by sutures. The sutures (fibrous joints) are found between the bony plates in the head. The function of the suture is to allow molding through the birth canal and adjustments for the growing brain.  As the infa

Whats normal and what's not? I think that's a question every parent asks more than once during their child's lifetime. My, now 19 month old daughter, has developed certain physical aspects that I now find myself wondering "Would she have _______ if she didn't have craniosynostosis? Or is this something that most kids have? In my surveys I have asked if other parents have noticed their children having such "markers" as Hemangiomas, Y shaped gluetal clefts, and Mongolian spots. It doesn't seem to be that much more common in cranio kids then in the rest of the population. So I decided to google it. Here is what I found (let's hope this information is accurate) What percentage of babies have Hemangiomas?  Roughly 13% however about 80% of babies have some sort of birth mark? Mongolian spot?    95 to 100 percent of Asian, 90 to  95 percent  of East African, 85 to  90 percent  of Native American, and 50 to  70 percent  of Hispanic babies have them.  

Craniosynostosis Survey #2 from 315 families The results of my first survey with 503 responses is listed in earlier entries or click  Here THESE ARE THE EXACT RESPONSES OF MY SURVEY. THE FIRST  NUMBER WILL BE THE AMOUNT OF PEOPLE FOLLOWED BY THE PERCENTAGE.  My child is Boy 206 65.61% Girl 100 31.85% I have more than 1 cranio child. 8 2.55% What type of craniosynostosis does your child have? Sagittal 135 42.86% Metopic 88 27.94% Left Lambdoid 9 2.86% Right lambdoid 13 4.13% Left Coronal 19 6.03% Right Coronal 20 6.35% Bicoronal 21 6.67% All sutures closed 7 2.22% Multiple sutures closed. Please specify which ones below 20 6.35% Other (Please Specify) 22 6.98% bilambdoidal sagittal sutures Sagittal and Bicoronal sagittal, metopic, right coronal Sagittal and Bi-Lateral Lambdoid Metopic, saggital, and bicoronal metopic sagittal both coronals Originally just left coronal, now left, right coronal and saggital. metopic, sagittal Sagittal and metop