Fun Update!

Kya is doing good. Her levels all were normal. The doctor said she looks great. Her strength and core muscles are getting stronger. She loves occupational therapy and is even getting better with the blood draws! We will go monthly for labs since they are tapering her and she only has another month left on immunosuppressants if everything goes as planned. They will monitor this in Oklahoma City. We are very excited and nervous.

Her pageant went well and she had a lot of fun! She was 2nd runner up, but she just shined on the stage. She did her own thing when modeling her evening gown and I can only imagine what her interview was like! She definitely had a strut going on during the party wear event.

Kaysa also did super. She nailed her song and she did fabulous in the party wear event! We were so proud of her. She won 1st runner up and most photogenic! Most of all she learned a lot and had a good time.

Kaysa has the end of her softball tournament this week and Kya will finish next Monday! I can't believe it is over. Where has the summer gone?

We survived the big 8 slumber party last week for Kaysa's birthday! It is hard to imagine she is 8. The girls all went swimming as soon as they got here. They were all going off the diving board and Kya sat back and watched for a while. The next thing I knew she was running and jumping off the diving board also! She had never done that before, but I was excited to see it! Kya hung in there with the big girls all evening. We finally made her go to bed at 1. She did not think that was fair, but it was for the best!

Thank you for the many prayers! We are so excited about her progress and her improvements. Please continue to pray as we taper her off the meds that she will not relapse into a flare! Thanks again for everything!

Kalee

Kya is going strong!

Kya is going strong! We had a little scare last week and took her to Children's and they ran a bunch of lab work. Everything came back perfect! She is going strong and has a t-ball game tonight. I hope and pray that everything continues to stay normal and she keeps up with her energy!!!

We spent last week at the Miss Oklahoma pageant and Kya really enjoyed it. I was amazed with how much attention she paid to it. She has been reenacting the talent ever since we got back. She has her first pageant this weekend and she is ready to be in it. (I am not sure her talent is ready or that they are ready for the twist she will put on the pageant! But she is 3 and having fun!)

Thank you for all of the prayers and support! We appreciate all you do for our family!

Kalee

1st T-Ball Game

Kya had her first t-ball game last night. She did it! She hit the ball and ran to first. She ended up running around all the bases and touching home without falling!!! Small things are really big to us. The game was at 7:45 so it was not scorching hot and the field was shaded! Hooray! She was not really fond of playing the field, but she stayed out there and ran to the ball everytime it was hit. She never beat the other kids, but she ran anyway!

Here are some pictures of her at the game. Thank you Aunt Tahna for being the photographer !

Kya is playing T-ball?!

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