A Quick Update

Kya had a good day Monday! She started her day with Physical and Occupational Therapy. Her therapist said that she could already see an improvement in her muscles. Then, she went to see Mavia and had an IV infusion. These are getting a little easier each time. If she would just stay a little calmer and breathe it would make the blood draw much easier. (But I am not one to talk. I would yell also if they put a needle in my chest every week!) After her treatment we went and had lunch. When we headed back to the hospital she said she was ready to go home. But, she did great for Dr. O'Neil! She was much improved in cooperating to do her strength testing. Dr. O'Neil was very happy with her progress and lowered her oral steroids by 1 ml this week. We are praying that she will continue to stay strong even with the lowering of the medicine. She also gets to keep her infusions spread to every week and a half for the next 3 weeks and then we are suppose to try every 2 weeks the next month! Please pray that she wil hold strong through all of the tapering. The quicker we can get her off the steroids the less side effects, but we also do not want a relapse.

Yesterday, Kya was definitely having a "steroid" day. She didn't know what she did or did not want and was very indecisive about everything! She stayed with Granda Denny part of the day then she went back to OKC with us. Kaysa had to go back and have her bumps cut off at Dr. Lehr's office. Kya was quick to let them know they were going to cut on sissy and not her. Dr. Lehr's staff was glad to see Kya and that she is doing better. We cannot thank Dr. Lehr enough for the quick diagnosis! If you have a skin problem I highly recommend him. He sees all ages and is very good at what he does!

After visiting Dr. Lehr we hurried back so Kaysa could play basketball. They had a great game last night. She scored 12 points, but more importantly they all played as a team! They really have a lot of fun and Mr. Danielson has done a great job teaching them the concept of the game. (By the way they won!) Kya decided she was done with us and was going to ride home with Grandma Trish. So we took Kaysa to eat at Pizza Hut because she had a Book It for reaching her reading goal last month! When we got home Kya was in a tutu having a tea party with all of her stuffed animals. She is definitely our prissy girl! We are just glad to see her feeling better and moving around so well.

We know that God is in complete control and has already performed many miracles in our lives. We just continue to pray for a cure in Kya's life and that it will come quickly. Thank you so much for all of your prayers and support. Please continue to pray as we travel to Chicago next week. Pray for the medical team and God's guidance in all that they do! Thank you once again for everything. Our lives have been changed by this and we have definitely realized the importance of friends, family and community support!