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We arrived at the hospital at 11:30 this morning.   To begin with, a nurse wanted to talk to us about participating in a study they are doing about craniosynostosis.  The fact is that not much is known about it.  So we've agreed to participate.  Basically what they will be doing is keeping the bone that they will remove from Chase's head and save it for future studies.  I'm happy to participate because someday I hope they are able to find some answers.

There is always plenty of paperwork to sign when it comes to these things.  I hate reading when they list worst case scenario possibilities!  I prefer tricking myself into believing that those possibilities don't exist!  But the paperwork is signed.  And the reality of surgery is upon us.  The team has a way of making you feel comfortable and confident in what they are doing and I trust that the outcome will be good.

After paperwork was signed it was time for the head scan.  Chase decided he was hungry at that time so we sent Ryan in for his scan first.  It's hard to get the timing right for infants as they seem to have a schedule all of their own.  After he was done eating we went back to be scanned.  He was not impressed.  He was so tired that he didn't want anything to do with being touched by anyone else.  I had wanted to get a picture but he was much too tired for me to become a photographer.  The process has changed a bit since Ryan's 5 years ago.  They put a white sock of sorts on his head (same as they did Ryan) and they lay them down on a table and it's a simple push of a button and a laser scans his head.  Simple process if you have a baby willing to cooperate.  It took several times for Chase.  The process wore him out!

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After the scan it was time to meet with the neurosurgeon.  You can tell he loves his job and loves kids which sure makes it easier for me to trust him.  We asked him several questions and he is so willing to share information and explains things well.

Having been through this before, our questions were less about the procedure and more about wondering why this happens.  Truth is... not enough is known...which is why they are doing research.  He does, however, believe it to be a mutated gene.  Why now?...what caused it?...too many unknowns.  Will my kids pass it on to their kids?  Maybe....maybe not.  Again...not enough is known.

Surgery is scheduled for 10:30 in the morning.  I am not allowed to nurse Chase after 6:30am, but allowed to give him Pedialyte between 6:30a - 8:30a.  I have visions of him being hungry and crying as we arrive to check in.  We'll see how that goes.

Yes, I've been through this  before but I'm still nervous and find myself whispering prayers of protection over my little boy every chance I get.  For now, we'll hope for a restful night and pray that everything runs smoothly tomorrow.  

Barbara
7/13/2011 21:02:49

We are praying for you all. I know that Chase's guardian angel will be with him and that God will be guiding the surgeons. Wish we could be there with you but know that we are there in thought. LOVE YOU ALL!!!!!!

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