A Beautiful and Interesting Adventure; Our journey with Craniosynostosis.

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 ...

    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 re...

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...