16 Jun Warrior and Princess Cali- updates
Cali had another 10 viles of blood taken yesterday to test for another panel of genetic diseases. This panel is the Ataxia panel…not that anyone knows what that means. Basically we are ruling out another chunk of the endless named diseases out there. Picture a wall of balloons and we are throwing darts to pop each one and maybe, just maybe, we will find the diagnosis in one of those balloons. Our neurologist doesn’t think there are any named cases out there the same as Cali and Ryann. Which brings us back to our doc’s original idea that they may name a gene after our family. The Spooner Family Gene, oh jeez! We do not want that of course because then there will not be any other cases to compare to. We have to rule out every rare disease out there and from what i understand there are roughly 7,000 just in kids so this could take a lifetime if you ask me. Our geneticist doesn’t seem to know which direction to go. We just have to keep throwing darts at those balloons and see what we find i guess. Cali is the guinea pig and if anything comes out positive then Ryann will be tested. Cali is such a trooper. She didn’t even cry and they only used one vein! The nurse was shocked at what a great patient she was. She drank a juice box after and went to school Easy Schmeezy! What a warrior that little girl is!
As far as her foot reconstructions go she is done! Whoo hoo! She is out of the casts, into her braces and walking strong in her walker again. Doc says it will be about a year and a half for healing before she isn’t in any pain. Again, what a trooper! We are up and running with her walker and so is Ryann. It is funny to have Cali so tall in her walker and Ryann so little in hers. What a family we are :-). We are going to have to train Rae on how to walk with Ryann so we can handle the both of them at the same time. We can do it!
Lastly, We finally got what we were fighting for with the school district. We are happy to say that the district is hiring an aide for Cali next year. We know she deserves an aide by her side so she can have the opportunity to move about the campus freely and happily. So we will see how it works out. We are hopeful, happy and her biggest advocate and fan.