Friday, May 7, 2010
Cali and Ryann have both had their new MRIs done now. The Pediatric Radiologist tells us that they both have the same pattern of severe atrophy to their cerebellum. Yeah we already knew that but thanks. Now our Neurologist is going to talk to the Radiologist and get back to us on our next step. I have learned throughout this process that we have to be the one to take it to the next level. We cannot wait for the doctors because they take forever and then come back and tell us nothing. So our fight for answers continues. I am working with Children’s Rare Disease Network on some amazing projects that can help my family as well as other families with rare disease. The best part about working with them is that I have been introduced to other amazing Moms all across the country that are going through what we are and most of them have it way worse than us. They are all helping us get in touch with the best doctors that they know of. Why re-create the wheel when we can network and share information? I will continue to turn over every stone to see who we can find to help us find answers. The search goes on for someone out there to help Cali and Ryann. If we as parents do not stand up and fight for them no one will. That is too sad to think about. Cali and Ryann deserve the best and they deserve a fair chance at life.