Starting All Over Again:(

I'm sorry if this becomes a long, rambling post that makes no sense. I am struggling today. First, I would like to thank everyone for praying for Destiny when she was having her testing at ETCH and for praying with us as we waited for results/answers. Throughout the last several weeks, her daddy and I have prayed that we would get the results and be able to give our girl some answers as to why she feels the way she feels. At the same time, we have prayed that the tests didn't show anything at all. Let's be honest, no one wants something to pop up in a medical test, no matter how bad we want answers! With that being said, I can share that we now know that Destiny, like her daddy, has Chiari Malformation. I can't say I am surprised, as I looked at her scans when we came home that day. I have seen enough of Bobby's MRIs in the last several years that I feel confident that I could just about find Chiari in a MRI with my eyes closed (you know, if it was possible for me to see an MRI with my eyes closed!) I've learned that knowing your child has Chiari does not feel the same as KNOWING your child has Chiari. Talk about a sucker punch! Before the doctor said those words I could talk myself into believing that I was maybe wrong. I'm not a doctor. I'm not a radiologist. I'm just a Chiari wife who has spent the last 6 years learning everything I can about this illness that has consumed our life for the same amount of years. I've always known that knowledge is power and I won't feel as helpless if I show up to battle armed and ready to defeat the enemy. Even when, as is the case with Chiari, there is no definite way to defeat the enemy, no cure. Brain surgery is not a quick fix, but can "sometimes" help with the symptoms by relieving the pressure off of the brain stem. I have to admit that I don't want to do this again. I'm still overwhelmed with Bobby's multiple weekly/monthly appointments. We are still trudging through his Chiari nightmare. I don't want to start the uphill climb with my baby. I feel selfish saying this when I consider the fact that I am not the one with Chiari. I don't want more neurosurgeons, neurologists, ENTs, brain surgeries, or the like. I want to say "no, thank you, we already have our serving of Chiari!" It would be so wonderful if that was an option, but I seriously would not wish this on anyone else. We have made it through 6 years as a Chiari family and we will continue to muddle along. We will know more about our game plan (as far as treatment/surgery plans) after she has seen the neurosurgeon and neurologist. If this starts out anything like Bobby's, we will start with more testing. Please continue to keep our family in your prayers as we do what we can to take care of our girl and help her though what I know is a scary time for her.