Saturday, July 12, 2014

Happy Cranioversary - 1 year post op

When I first found out Alice had Craniosynostosis, I was a mess of course...I couldn't believe my little baby had something wrong with her. I thought that was a horrible feeling...but it doesn't even compare to the day my baby had to have surgery. It was the most heart wrenching and emotional thing I have ever been through. Handing my 5 month old baby over to strangers...and watching them walk down the hall with her...knowing that they were about to drill into my baby's skull...I can't even put into words how hard this was for me. It took every ounce of energy I had not to collapse..I have never been so scared. I cried like never have before...I couldn't stop shaking. I wanted to be with her...I wanted to hold her. Fears took over my thoughts. Would she make it through the surgery? Would she be the same sweet Alice afterwards? Being away from her for those few hours seemed like eternity. I literally ran back to recovery when they called us...and when I saw her there...white as a ghost, laying limp...I think I literally didn't breathe for a couple minutes. I knew she wouldn't look great...but she was so unresponsive, I knew she wasn't in the clear. Was she going to wake up?







After 5 long hours, she did. The strength she showed as a 5 month old baby, amazes me. My sweet girl had a whole drilled in her skull, a strip of her skull was removed...and she was smiling a day later...even with one eye swollen shut. Really?! 







I am so amazed and proud at how far she has come. I am forever grateful that Alice had the opportunity to have the endoscopic procedure, no matter what her future holds, I know that it was the best choice for her.  



My sweet Cranio Princess,
one year later

I know the worry that I feel in my heart everyday is something only a cranio parent will understand. I don't think I will ever stop worrying about her. I thank each and every one of you for your thoughts comments and prayers over the last year. I read through all of them recently and plan to print them out to show Alice one day...so she will know just how many people prayed and cared for her.


One Year Post Op
What a difference!



Here is the link to my detailed blog post about her surgery
http://coronalcraniosynostosis.blogspot.com/2013/07/surgery-story.html





This is a short video I made to help raise awareness and spread the word so that more babies can be diagnosed earlier. Please share this with your friends. https://www.youtube.com/watch?v=FaZ6SzCXDXU&feature=youtu.be