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| Alice Mary's baptism My Uncle and Aunt (godparents), My dad, sister, mom, Cheryl and Jason and our 3 babies (left to right) |
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 18, 2013
It was confirmed
We went for a second opinion on June 18th, 2013. I had been obsessively researching all weekend leading up to this appointment and I already had a gut feeling of what was to come. Within minutes of walking in the room he dismissed one of the possible diagnosis...and confirmed that she had Left Coronal Craniosynostosis, it felt like my heart dropped to my stomach...but in my research over the weekend and looking at pictures, I was almost positive that this is what she had...but hearing it confirmed was a different story. In the remaining minutes of the appointment he described what had to be done...no options...she had to have surgery....and because it wasn't caught sooner...she had to have a more invasive surgery, a major reconstructive surgery of her skull. It was to be scheduled between 10 and 12 months of age. I was sick...angry, confused...I just didn't understand how this could happen to our sweet baby girl. Furious that it hadn't been caught sooner because if it had she could have had an endoscope procedure done ...which is usually only offered up to 3 months of age. I was numb for the next few days, but grateful there was a solution...I began to fight for my daughter, and do whatever I could to help her...
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