I just wanted to let everyone know that we are not giving up on Olivia. No one has accused us of doing that, it's just that I felt like I should address it so that we can express how we feel. Our neurologist wanted to gently steer us towards having to decide about making her a DNR in the future. We would never let her "live" in a vegetative state with no quality of life. I have the highest regard for life. Unborn life all the way through a dignified death. It probably comes from my years as a hospice nurse. For anyone who did not see the info on her disease I will re-post it here.
There is no cure and so far no real treatments. Seizure meds and Neurontin for her nerve pain is all we can do for now. Eventually her seizure meds won't work. We hold out all HOPE that God will cure her and she can live a full life!