A Beautiful and Interesting Adventure; Our journey with Craniosynostosis.

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

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

How did we discover that our baby has Sagittal Craniosynostosis?  Two Thursday's ago we took Ry to get an  MRI because she has a y shaped gluetal cleft (which means her butt crack goes into a Y shape instead of an I shape) She also currently has a flat bruise like hemangioma about the size of a nickel on her butt, at the base of her spine area.  Both of those things can be an indicator that there could be a tethered spinal cord or another spinal issue. She has other hemangiomas but the pediatrician was only concerned if they appear in specific areas, and one of those to be concerned about is the area around the spinal cord. So they suggested we get an MRI to rule out any spinal cord issue. After her MRI we went to meet with a pediatric neurology doctor. She told us her MRI results were negative! yay! Which means that she does not have any issues with her spinal cord. However at that appointment we learned a new word that unfortunately will be part of our life now. Crani

    Rylen is 2 weeks away from being 11 months old. Which means that I wrote my original blog post almost 3 months ago. If anyone out there is wondering what I have been up too, the title of this post says it all.      I kept with running on the treadmill for around 3 weeks, resulting in 4lbs lost. Wahoo! And then RyK got her first double ear infection and refused to sleep or be happy unless I was holding her. So I literally held her for 3 days straight, then just when she was starting to feel better she had a reaction to her anti-biotics. Which meant we had to start all over again :(     Before i knew it a week had gone by without me doing any form of exercise.      I was watching an infomercial (around 5am, while I slept sitting up holding RyK on the couch) for shaun t's t-25 and i thought  "hey, i run for 30min, i could certainly do a workout video for 25mins! So my husband and I decided to order it. The idea behind it was really great because it would allow us to spend

Yesterday my baby turned 8 months and it became clear to me that the saying 9 months on, 9 months off isn't going to happen for me.      Now let me start by saying I know I'm not fat, no I'm not overweight but since exactly 8 months ago I've become, well, I'll call it jiggly. I am very grateful for my beautiful baby, and I knew that having her meant my body would change. But I thought since I'd been the same weight for over 10 years that after I had my baby my body would just go right back to its normal weight. It didn't.     I was fine with the possibility of stretch marks, since I already had them adding some more was kinda like alright :"bring on the battle scars", that didn't bother me. But what does bother me is the number on the scale. I decided to join the blogging world to make myself accountable. That way if I'm going to go public with my  weight I'll be more likely to commit to a change. I just want to look down and see less