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 th...

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 Sagi...

It is post- op day 133! It's hard to believe its been 4 months (and 10 days to be exact) since Ryk's Cranio Surgery and she is doing great! We had our first post-op CT scan today and I am delighted to say everything looked good! Here is a look at pictures of her head and her skull! UPDATE : FOR MORE CT SCAN PICTURES CLICK HERE At RyK's Neuro appointment her doctor said that the soft spots that the neurosurgeons created during surgery have already begun to close. That made me a little nervous. However, she assured me that everything should be okay.  Just because they are closing already doesn't mean that Ry's head won't still have room for her brain to grow. That was the best news we could have received!!! She recommended that we come back in year to check- in and for them to feel her head.I also learned that her metopic suture had already closed by the time we had the first ct scan, at around 10 months old. If you look at the image there is no jagged line ...

Hello!  On Thursday August 27th I posted a survey on the Cranio Kids-Craniosynostosis Support Facebook page. I was so excited when I woke up the next morning to see over 250 people had participated. Because so many of you wanted to know the results, I filmed a video and posted it to Youtube . At the time I filmed the video I had around 350 responses, now  I have 503. I have decided to write down my "final results" of this survey in a blog post, as I will no longer be checking it for responses. I would like to apologize for my spelling or grammatical errors in that survey and for any future mistakes. *Please note that I created that survey in 20 minutes, I sat down and my computer and wrote down all the questions I could think of.* I was hoping that it would be able tell me something I didn't know about Craniosynostosis. Some of my findings were to be expected and some I was surprised by.   I have been collecting information and am planning on creating another, more detai...

Looking back at some of these pictures I can't help but think " how did we not see that her head shape was very abnormal?"  I mean I always knew that her head wasn't perfectly round but I don't know how i didn't think that there was something else going on. Seems so obvious looking back on it.  One thing that none of the Neuro doctors or surgeons mentioned was the possibility of her facial features changing.  It also never occurred to us that her face could look different, or that her ears could be in a slightly different position then they were previously. Nothing is undesirable, in fact she may be cuter post-op! However, her eyes are slightly turned up and her ears are not exactly in the same spot they used to be.  It may not be noticeable to you but it was a unexpected change for us. Here are some pictures from before her diagnosis and cranial vault reconstruction surgery: The day she was born At 3 months her ridging across the saggit...

Yay! Today, May 20th marks one week since Rylen had surgery to correct her skull. I wanted to write this for us to remember, for other cranio families who want to know what to expect and for RyK if she wants to know what her surgery was like. On Tuesday May 13th  we arrived at Oakland Kaiser at 6am. We were checked in and sent to pre-op. There they gave her some "happy juice" and daddy turned into the funniest guy around. We handed her off to a  nurse about 8am. Then we waited for our first phone call. At 10:20 her nurse called to tell us they had made the first cut, at 12:45 he called again to say she was doing well and they would begin to close. At 2:20 he called and told us to be waiting in the lobby for the surgeons to arrive. Finally around 3:00pm Dr. Pang and Dr. Zovickian came walking towards us. Everything went well and we could go to the PICU and see her! When we walked in we could hear her crying, we knew she woke up fighting mad. She was turning her self a...