Scott and I were left with the difficult decision of which surgery we wanted Baby Girl to go through. After much thought and prayer, I knew that we needed to speak to other parents who had gone through the same thing. Avery's Angels' had directed us to a website called Craniokids.org. Parents of children who have craniosynostosis go to that website and chat with each other. They discuss day to day life, how surgeries have gone and what Dr.s are the best. Its a great source of information. Dr. M's (craniofacial surgeon) office had called a few of their patients' parents to call or email us to talk to us about their experiences. I literally spoke to parents from all over the world. I heard about what procedures they chose, why and their outcomes. It was such a comfort to be speaking to all of the wonderful individuals.
After the diagnosis, I posted what was going on in our family on facebook. The response was overwhelming! I received an email from an acquaintance from high school who had just gone through the same thing with her son a few years ago. Its amazes me how Heavenly Father works. He puts individuals into your life and you go about being friendly to one another then something happens and there is a connection. She has been a huge blessing to me through all of this.
We finally decided after all of our praying and research that the CVR is the best option for our Baby Girl. We feel at peace with this decision and know this is the right direction we need to go in. I nervously called Dr. M's office and scheduled her surgery (that was a difficult phone call). The surgery is set for May. So what does that mean for us right now:
1. Weekly shots (procrit: a red blood cell booster) starting in April and continuing until the surgery.
2. Keeping her quarantined until July.
3. Check-ups with Pediatrician and Craniofacial Surgeons.
4. Fattening her up so her weight is where it needs to be.
We will start keeping everyone quarantined in April through June. Miss G and Scott will be the only ones allowed to go to school, work and church (and showering as soon as they come home). We do not want Baby Girl to get sick at all because she needs to be her healthiest going into surgery. This will be hard but sometimes you just have to do what you have to.