Sent to Jay’s Men’s Group (Junto) on January 27, 2012 at 10:22 PM.
Your skull is made up of a bunch of plates that move independently of each other when you are young. As you get older, they grow together. It is possible for them to fuse together too early, when you are a little baby. When they do that, it can prevent brain development because the brain is limited on where it can grow to. This is bad. Continue reading
Sent to our Birth Class on January 31 at 10:11 PM.
Friday, January 27, PiElla had a CT Scan at Seattle Children’s Hospital. It was found that her left lambdoid suture has fused shut early (it normally fuses between 20 and 40 years of age). That means that bone has formed early and closed the gap between the plates on the back-left of her head. The result is that her skull will not grow right without surgery. Continue reading
Our first public posting of our story, to CranioKids.org on January 28, 2012 at 10:01 AM, after hours of frustration because our account was not approved for posting.
Summary:5mo daughter fused left lambdoid and two extra lower sutures. Surgery might not be required or even recommended. Trying to balance the options and figure out what is best to do. Wife needs support, I need information; we both need reassurance that everything will be okay. We hope that this is the greatest of her problems and that it is not a sign of many more to come.
It is scary to think of the surgery my daughter is going to go through. But, I know we will do just fine.
All surgery for a fused suture involves opening up the head – whether endoscopically or by peeling off the scalp – and then cutting away strips of bone. Endoscopic surgery stops there. Full surgery (CVR) also involves moving plates around. We have opted for endoscopic surgery at this point, with the drawback that PiElla will be required to wear a fancy helmet (hat) that will help her head grow in to the right shape over the next year. I am sure she will be thrilled with that, sarcasm intended.
Before diving in to everything else though, I wanted to share some photographs of PiElla from the time she was born to now. She really is the dumpling of my apple’s eye.
I am PiElla. I was born at 3:14 PM on September 8, 2011. My Father’s Mother’s Mother’s Mother (my Great Great Grandmother) was named Ella. 3.141… is π. After I was born, my father tried many names on me. I liked the way PiElla sounded and so that is my name. My parents are writing this for me, because I am not old enough to type yet.
Our adventure of new parenthood has just gotten a lot more adventurous really fast. We decided to start this site to help everyone stay up to date. On some posts you will find a (more) link. Click it. Some posts, like this one, have important or more information in them after the more link.