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| Alice trying very hard to sit up |
On June 18th 2013, our soon to be 5 month old baby girl was diagnosed with Left Coronal Craniosynostosis. We were told she missed the window for having the smaller endoscopic surgery and that she would need a major reconstructive surgery of her skull around one year of age. We were determined to find a doctor who would still do the smaller surgery. This is documentation of our journey in hopes of helping others who are going through the same thing.
Tuesday, June 11, 2013
Blindsided
We went to see a neurosurgeon on Tuesday June 11th, 2013, with the mind set that worse case scenario, she may need a helmet to help shape her head. The doctor walked in and said a whole bunch of fancy words for what she thought was going on...it could be Anterior Positional Plagiocephaly, which would be the first she has ever seen (most of the time it's in the back of the head) and that would be the best case scenario, requiring a helmet to help shape the skull... or it could be Left Coronal Craniosynostosis, which I was clueless about. She initially said lets get an xray...then changed to let's get a CT. There are concerns about radiation on young children so I didn't want to do that now without knowing more...I needed someone to tell me by looking at her...what was going on. So I came home and contacted another doctor for a second opinion and set up an appointment with him for the following week. I was a wreck...was completely blindsided by all of this...
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