Friday, May 25, 2012

Craniosynostosis (No--I don't know how to spell that without looking.)


Thank you all for your prayers for Rachel!  She is doing just great--loving the new veggies on the menu and making noises with her little mouth.
I need to share another little miracle from God today.  On Tuesday, I was Googling how to prepare to send an infant into surgery at Mayo Clinic.  I was NOT searching for craniosynostosis surgery because 1)I couldn't remember the procedure's name in the first place and 2)I didn't want to have the pants scared off of me again.  This informational YouTube video was one of the results.  Here's the crazy part.  This isn't just a video on Rachel's condition--it is the actual doctor she will have when she is a patient at Mayo! 
The reason I really consider this a little miracle is that we really hadn't heard about the endoscopic option before.  The doctor in Sioux Falls glossed over it, since he doesn't do that there, and he assumed we wouldn't be interested in putting our baby in a helmet for awhile.  Well, he was wrong.
My prayer now is that Rachel is a candidate for this less invasive procedure.  Both the traditional and endoscopic procedures are considered safe, and some parents even prefer the traditional because it gives immediate results, but the word "endoscopic" has helped me sleep better at night.  The trade off with the endoscopic procedure is that the babies often wear a helmet for several months.  I've asked around (online and in person) and have actually found quite a few people with helmet experience.  The overwhelming majority say that their kids didn't even notice them.  If this is an option, we will take it.  Pray, pray, pray, everyone!
Thanks. :o)

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