5 months old |
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.
Sunday, June 30, 2013
So Nervous
Well... we finally shared the news about Alice...thanks so much to those of you who have reached out to me already. I don't know why it has been so hard for me to talk about, I guess I just wanted to block it out but I realized we need as many prayers as possible for Alice and for our family. My stomach has been in knots all weekend, one, because I am nervous about the insurance company's decision and two, because if she is approved my baby may be having surgery very soon. It's alot to take in...and to think I was an absolute basket case when my kids had tubes put in their ears...that was nothing compared to what Alice is about to go through. Of course I want the endoscope procedure done over the more invasive surgery...I think any parent would choose that direction if they could...that is why I am so nervous. This is what I want for her, and I don't know how I am going to handle it if they turn us down...then I will have anxiety over the next 5 months or so, awaiting the time when they would do the larger surgery...to think of that makes me physically ill. The endoscope surgery is still very scary, and she will be in the ICU and be swollen and it will still be very overwhelming.With the endoscope surgery a helmet is used to help mold the skull after they open up the suture in her skull. With the larger surgery they actually remold the skull in surgery. I guess what is meant to be will be... I will update you as soon as I hear something from the insurance company. Thanks for your support.
Subscribe to:
Post Comments (Atom)
I want you guys to know that I will keep sweet Alice and all of you in my prayers. She is an absolute angel and god will watch over her! Keep the positive vibes going and prayers will continue to be sent your way! With love from upstate ny!
ReplyDeletemarisa
Thanks so much Marisa for the comment...sorry for the late response! Thanks for all the love AND support from NY!
ReplyDelete