Not really much info.
We know her nerve damage is just outside the spinal cord low on her back. We know there is a "clump" of nerves. The big punch in the gut was that her nerves continue to be getting damaged. We do not have a cause. I feel like we are in limbo land big time. I also felt a bit like her neurologist is done. We were refereed to a neurosurgeon. So many questions with very little answers. I will continue to push for more.
We are scheduling a wheel chair evaluation. This girl of mine falls ALL the TIME. Probably 20-50 times a day. She did just get a AFO but at age 9 learning to use it may be part of the problem.
Sorry this is a boring post but I just wanted to get it written down.