I found a wonderful web site, http://www.chromodisorder.org/CDO, Chromosome Disorder Outreach. Through this site, I found a wonderful family in Iowa that has a 3-year old with the almost identical diagnosis as Josephine, so they have been our lighthouse in the storm! Their daughter is the 13th documented case at this point. Her mom and I have been emailing and we are so blessed to have found another family! Their daughter is doing very well and certainly much better than the doctors told them she would do.
So, as our geneticist and counselor have said, Josephine is her own research project, just as this 3-year old girl is her own. When we find more cases, more doors will open to the mystery of Tetrasomy 8p Mosaicism.