Tuesday, May 31, 2016

The mind of a Cranio Parent

It is such a whirlwind of emotions, this whole cranio journey. It's hard to believe it's almost been 3 years since I first heard the word CRANIOSYNOSTOSIS. In the moment it felt like my world stood still. I still get teary eyed thinking about everything that Alice went through and the emotions that I experienced the first year of Alice's life....anger, fear, joy, happiness...geesh it was quite a journey!!

Cranio has changed me as a person...for one, I will never be able to just admire a baby anymore and say "awhhh"...I will inspect EVERY baby head, child head and even adult head. (it comes w the territory lol) You too will become a 'head picker' through this journey...

Another thing that will probably never go away, is how much you worry about your cranio baby. It does not matter what surgery they have or anything...you WILL worry your heart out. This is normal. Even almost 3 years later, I worry, not quite as much as I did in the beginning, but I do. You'll worry about your baby's head, appearance...everything. Just remember YOU are doing everything you can to make your child 'better'. Surgery is necessary to correct this condition. (except for some metopic cases)

The thing we loved about endoscopic surgery is that we didn't have to wait. The Doctor released that suture and instantly, her brain had the room in needed to grow. That was why we pushed so hard for endo...I just wanted her problem treated as simply and as quickly as possible. The idea of a cut in her skull VS a reconstruction of the skull sat better with me. The skull is essentially how it should have been at birth, and the skull and brain can grow as it should.

Here is miss Alice being so proud of her new haircut! (her 1st haircut was by the neurosurgeon)



She'll be 3 years post op on July 12
We couldn't be happier with our decision of endoscopic