Quick Update

Kya is doing better. Her eyes look clear so we are going back on cellcept today. Hopefully, this time the eye infection won't come back. She looks great and acts like she feels 100%. She is definitely a mess!

I have to confess that sometimes I just sit and laugh at her. She is one of the wittiest little kids I have ever seen. She will take something you have said and use it against you or use it in correct context about something else. She loves to tease and play jokes. She is just really funny. However, sometimes she can be as stubborn as a mule! That is usually when I get tickled because you try to reason with her or manipulate her and she will come back with some comment that catches you totally off guard. I know I am not suppose to laugh, but sometimes you just can't help yourself. She has been through so much and she has learned the system, so now she is out smarting the system.

Please continue to pray for her and total healing in her body. Please continue to pray for us and the daily challenges and concerns with the disease process. I ask that you also continue to pray for a cure for this disease and all the children that have it. We know several people that we have become friends with who are really having a struggle getting their childs disease under control! I feel very fortunate and know that we have awesome prayer warriors and that through all the prayers Kya is being healed. Thank you so much for your endless support!

Kalee

Another turn in the journey!

We are back from CureJM in Austin and ready for another year! We were very inspired by all of the families who attended Austin. The doctors were amazing to listen to and there are many studies going on to try and figure out more about this disease. The main problem is funding for research. There is no federal funding so everything they know about this disease has come from donations from people like you and me. Our goal is to help raise funds for this research! If we want there to be a cure for Kya it has to come from us and our great support system of friends.

Kya is doing well, considering. Right now she has an eye infection and we are having to stop cellcept until we can get rid of it. However, her disease seems to be under control with the meds right now.

Please continue to pray for Kya and her healing! (especially while we are dealing with this infection) Each day is a challenge for her and our family. The unknown and uncertainty of how she will do on this taper (and without any meds right now) is very hard on everyone! Your endless prayer and support is very much appreciated!

Also, if it is in your heart to donate to CureJM or help us organize a fundraiser we would love to have your support! Please remember that all CureJM donations are tax deductible because it is a non-profit organization with all funds going straight to research!

Thank you again for everything!

Kalee

The Results Are In!

Kya's lab results are in and everything is in the normal ranges. We are so excited, especially since she had been off of her medicines for 12 days and had been fighting an infection! Her aldolase was a little higher than I like it at 6.9, but we will take anything in the normal range.

Thank you for your prayers and please continue to pray for healing and wellness. Thank you again for your support. Also, thank you to those who have donated to CureJM we are getting ready to go to Austin and learn more through this great organization!

Thanks,

Kalee

February Check up

Kya had a check up on Wednesday in Oklahoma City. Dr. O'Neill thought that Kya looked like she was doing better. She could not see any nailfold drop out and thought that her strength was good. Kya was not very cooperative, but we made it through the appointment and blood draw. Now we are waiting on the lab results to come back. Hopefully, everything will be good and in the normal range.

Thank you for your prayers and continued support! Please continue to pray for Kya and all of the children affected by this disease.

Don't forget that we are going to Austin next weekend for the CureJM fundraising event and educational forum. If you can please donate to this very worthy cause at http://www.firstgiving.com/kyacarpenter or www.curejm.com under the donation link and put Kya's name to benefit her.

Thank you again for all of the prayers and please continue to pray!

Kalee