Every doctor visit seems to bring more pain and heartache. Yesterday we spent over 2 hours with thew neurologist. He was wonderfully patient and went through scans, called consulting doctors, completely reviewed our entire case. The conclusion is that all of her brain injury was caused by some stupid, random infection that affected her while I was pregnant. This is slightly better in the long run when thinking that it was from a genetic cause, which is what the neurosurgeon was concerned about. The end result is still devastating - this beautiful little girl has a brain that does not work and the tissue is very abnormal. We have been told that her seizures will continue to get worse over time and change. Even the best doctors in the world would not be able to control then, but we will do the as much as we can while keeping her as alert as possible. He does not expect that she will ever be able to walk or talk. Her vision will probably remain extremely limited. She is going to continue to have problems with her tone, her hips will not grow right due to these issues and her case will remain extremely complicated. He expects that she will be severely mentally handicapped. it is wrong to have to discuss a shortened life span for your child and to think about some of the hard situations that we will be facing.
I continue to pray for guidance. I want to always make sure that we are doing what is best for her. It would be so much better if God would just go ahead and heal her.
thank you all for the prayers and notes - there are days when I just don't think I will survive and it the encouragement that comes at the right time that helps.