Hello all! Wanted to give you some updated info. Sophia is doing okay; we are managing her pain with medication still. Friday night when we got home from a date night and she was in severe pain and wouldn't let either of us touch her. She hid in the corner for a while and finally came out and came to bed with us. The next day she was feeling better. We are kenneling her each time we leave the house now so she doesn't get into mischief and hurt herself worse.
Ben is doing well also. He is growing like a weed! After talking to a friend of ours (not naming names on purpose, but you know who you are-and thanks!) that works at Children's Mercy, she mentioned if it were her kid she would want all the information and would want to know about all the procedures that are possible. When I spoke with her she told me about another doctor that treats craniosynostosis very differently. He does an endoscopic procedure that can only be preformed with children at a young age (I forget what age this was) and it is minimally invasive. They cut about a 2 inch opening at the soft spot on the head compared to a incision that is all the way across the top of the head. There is less blood loss, the procedure only lasts about 1 hour vs 3-7 hours with the other procedure, and he could go home the next day vs 3-7 days. To Seth and I it sounds fantastic!!!! We now have an appointment with the doctor that preforms the endoscopic surgery to see if Ben is a good candidate and to get an official diagnosis on Wednesday at 11:30. I will update you with the info afterwards.
We still have an appointment with Dr. Singhal, which it sounds like he is the best in the area for the surgery that he preforms. This is the surgery that is more invasive, etc.
So, for now, the Olson's are just waiting for the doctor appointments and feel a little more at ease because it is all moving forward. Our only concern is that the doctors will try to persuade us to have one surgery over the other and then we will be on information overload and will have a hard time making a decision (not a strong suit for either of us). Of course, we are still hoping that nothing needs to be done at all and that this was all an unnecessary worry... But, at least we have options which I am thankful for and we feel so blessed to have friends and family that support us. Thank you all for all your kind words and prayers. Soon we will be on the other side of all of this! :)