Kya has her first T-ball game tonight. She is playing non-competitive Kiwanis t-ball with her cousin Kaden. It could be an interesting night! Her desire to do things swings on a whim. So if she wants to play tonight she will, but if it is not on her own agenda then she won't play. It drives me crazy, but that stubborn attitude is what has got her through her battles with this crazy disease. Oh and how lucky we get the 7:45 game tonight. I am so glad we won't have to be in the extremely blazing sun and heat!
Pageant update: Kya has practiced her talent a couple of times. Each time is a little different. There is no telling what she will do during the pageant. She keeps telling everyone she is singing the moon song and she is actually tap dancing to Bones. Could make for an interesting evening!
Kaysa has been practicing and she is singing Rocky Top, but that is nothing new for her so she isn't to uptight about it. Plus she has to leave for the Miss Oklahoma pageant this Saturday and won't be home until next Saturday. So the other pageant is not her concern right now. Swimming at the hotel at the Miss Oklahoma pageant is her biggest concern! You gotta love kids!
Health update: We tapered Kya's cellcept again on June 1st. I haven't noticed any changes and I hope I don't! We will go back to Oklahoma City to the doctor on June 23rd for a checkup and bloodwork. She also has another occupational therapy appointment that day.
CureJM update: Lake and I are running a 5K for CureJM in Chicago in September when we take Kya back to see Dr. P. CureJM is having an educational event and research update by Dr. Pachman on Saturday. We also get to tour Dr. P's research facilities. Then we will run on Sunday morning at 8:30.
This is a huge stretch for me because I hate to run and I have never ran! Lake will be fine because he enjoys running and has ran before. But I can do this to raise money for research that will help Kya. I can also do this because Kya can't run for herself! Every aching muscle in my body today I just think that Kya has felt like this and even worse for over the last year and a half.
So here is my request. We are putting our best foot forward to run for a cure for Kya. We ask that you help us in funding the cure for Kya. If you could please donate any amount to CureJM we would greatly appreciate it. We have set up a special online fundraising sight for this specific 5K and our mission to raise funds and awareness. Please go to www.firstgiving.com/carpenters4acure. It is a secure sight and no donation is to small or to large! You can also mail a check directly to CureJM just put Kya's name in the memo or you can go to www.curejm.com and donate online there. Again you can put a note that it is for Kya at the end of the donation form there is a spot to do that. Last but not least you can get the check made out to CureJM to Lake or I and we will send it in. We raise funds by running and by getting donations for running because CureJM is a supported Charity of the Chicago 5K. We are counting on you to help us reach our goal.
Please pray for us as we train for the 5K. Pray for healing in Kya's body and that she can continue to taper without a flare. Pray that we all do God's will in the treatment of the disease and the things we begin to allow Kya to do. Letting her out of her protective bubble is a very hard thing for me. Please pray that I get the peace that everything will be OK.
Thank you again for every prayer. Thank you for your support. I ask that you continue to support CureJM in any way possible. There are so many kids still suffering and battling daily with this disease. We have many unanswered questions that can be answered through this research and a new treatment or cure could be found! Thank you again!
Kalee
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