Daughter
Posted: Thu Feb 02, 2012 7:57 am
Last Friday, my wife and I had confirmed that our daughter has unilateral left posterior plageocephaly: a form of craniosynostosis. This means that two of the bones in her skull that should normally be separated until she is much older have grown together early. The space that is sealed shut is the lambdoid suture on her left side. It is the rarest form of craniosynostosis, only 1 in every 200,000 kids get it; as opposed to the general craniosynostosis that impacts roughly 1 in every 2,000 kids. She has to have surgery to take care of it. She is a candidate for endoscopic surgery. However, that surgery has to take place as soon as possible. So soon that yesterday her surgery schedule was set. She will be having surgery on February 9 around Noon. The surgery will involve making two incisions through her scalp and dermal layer, removing a bit of bone, and then using an endoscope and endoscopic knife to cut away a 1.5 to 2cm gap of bone that runs up from her temple across near the saggital suture and back down through the lambdoid suture. This will allow her skull to grow normally, which will hopefully prevent her from having a deformed head (asymmetric) or brain damage. Surgery is not an option. We will be doing the surgery at Seattle Children's Hospital. Odds of survivability are very high, chances of having to do a second surgery are very low, and we are of course stressed out. To relieve some of that stress, my wife and I (and our daughter) started a blog about our and her experience at http://piella.org/ You are welcome to visit it, as you are part of my community.
Jay
Jay
You just need to not explode by stressing about it in the meantime.
. What i meant is after surgery there is normally a long wait before they allow you to see the person. Just remember everyone at revo is thinking of you, your daughter and the rest of your family at this time.