We made it back from Chicago. The doctor said Kya looked great! But we don't have any of the test results back yet, so no plan of action has been set. This is the worst part to have to hurry up and wait. These two weeks are a killer.
Kya's CMAS was a 43 which was up a point from last time. That is great! It means she is getting stronger or just maturing and able to do everything they ask. They don't really have a normal for her age and that is one of the things they are trying to set a standard on right now. That is a research project that they are currently doing. Because the standard score of 52 is for a normal 6 year old. We all know that a 3 year old can't do what a 6 year old can, so this makes it kind of hard to test things. They just compare her to where she was before and continue to monitor. Overall she seems to be getting stronger.
Kya's nailfolds looked great! They said they looked almost like a perfectly healthy normal person. You could just tell that they had healed and were filling back in, but no drop out. They said they looked great! so we are going to take that as a good sign. She didn't have any signs of activity on her eyelids, roof of her mouth, or anywhere else on her skin. That was great news. The doctor thought she looked like a perfect little porcelain doll. Which made her very happy! No tan and no skin activity.
Now, we wait. We wait for the results to make sure there isn't an activity simmering somewhere in her system. If the results are good we won't have to go to Chicago until February. Also, she will then give us the plan of action on blood draws and the port removal. If there is something simmering I may scream! LOL Not really. We will just develop another plan of action and start meds again. But I am praying that we will be in the clear!
Lake and I did run the 5k at the Chicago Half Marathon while we were there on behalf of CureJM. It was an inspiring run and benefited a great cause! Kya's hugs at the finish line is what it was all about. We are the legs for these kids struggling to survive. We are the ones who have to spread awareness so no more of these kids will go undiagnosed or have to suffer the devastating effects of this disease. We will continue to fight and raise funds until the cure is found! Lake ran his first 5k in 26:17 and finished 138 out of 1394 runners. He was 21st in his age group! I finished, I wasn't last, and I didnt have to ride the sag wagon. Those were my goals! I actually did it faster than I expected and finished in front of several hundred people!!!
Again we want to thank everyone for helping us through this journey. God you are totally amazing, powerful, have shown us how to believe and pray without ceasing!!! Thank you so much to those who have supported us! We have some very strong prayer warriors. Thank you so much! It is by His power that Kya is doing so well today! To our new CureJM family, you are fabulous!!! You give strength, support, share knowledge, and are always there. To our actual family, I don't know where to begin. You have given us endless support and help! I know that 14 hours in the back seat between to girls is a long way to travel Grandma Trish. But we love you so much and thank you! LaDenta your help in babysitting, chaffeuring, and cleaning is beyond wonderful! Jimmy, you have allowed us to do what we had to do to get her well! Words can't even start to express our gratitude. Robert Nall, you have helped fight the insurance company and have given graciously to CureJM on Kya's behalf. Thank You 1000 times over! To my blog followers thanks for hanging in there and following our rollercoaster journey (and my sparatic writings)!
Thanks again to everyone and I will post when we have the results!
Kalee Carpenter
