Waiting, waiting, waiting. I keep looking at my list of people that I have contacted with Cali and Ryann's MRI images and information to see if anyone can help us or refer us to someone who may be able to help us. I email, I call and then we wait to hear back. I have to balance continuing to check in with them to see if anyone has anything to tell me and stalking them by emailing and calling every day. I understand everyone has their own life, their own problems, their own day to day that makes time fly by. I dont want to seem like what I am dealing with is any more important than what anyone else is dealing with. I'm just saying the waiting is killing me. They say no news is good news but not in this case. We would LOVE to hear some news. Patience is a virtue right?
Tomorrow is our appointment with our new neurologist. She will do a full comprehensive exam and then write a report. She will then order new MRI for Cali and Ryann with the top imaging equipment out of UCI. We will have new information to share with any contacts which we hope will help. We just need someone out there to have seen something like Cali and Ryann and then see if there is any treatment for them. We may not find an answer or diagnosis but its important to never give up trying. Its important for possible treatment for Cali and Ryann and for our family genetics.