Out with the old and in with the New!

This is the last day of the year 2009 and the last day of the decade! What an amazing milestone. This has been a very interesting year for our family. On January 2, 2009, they did the biopsy on Kya's knee trying to figure out what was wrong with her. Never in a million years did we know what this year had in store for us!

It has definitely been a journey. A journey full of twists and turns, ups and downs, and many bumps and stops on the way! We have grown as a family, as christians in our faith, and as friends. We have learned who our true friends are and have found many new ones on the way! We have learned what the really important things are in life and the value of time. We know who we can call on and count on no matter what time day or night and no matter what the reason!

For those of you who have been the ones called on endlessly, Thank you so much! You will never understand how much that means to us. To those of you who have been our prayer warriors I cannot tell you Thank you enough times! When anyone asks what is so different about Kya or how is she getting better so quickly I just have to say, "You cannot even imagine how many people are praying for her!". To our parents and families we want to say, "Thank you, thank you, thank you!" You have been a sounding board, a frustration board, and a wonderful support system!

So as this year draws to an end, we just want to tell everyone "Thank you!" one last time this decade. Please remember to always cherish each moment you have. Make every minute you have be a special moment. Never take for granted each day and moment you are given with your loved ones. But most of all, remember that God does not give you more than you can handle. He has faith in us and He will take care of His children!

Thank you again!

Kalee

Some Labs are Back!

We got some of Kya's lab results back. Her aldolase was 5.7 which is in the normal range. It is higher than it was the week of Thanksgiving, but we will take anything normal. The UA we had to rerun in OKC came back perfect. All the other labs they had back were normal also. So where does that leave us? It leaves us stopping the plaquenil and watching her for a couple of weeks. If she looks like she is doing good we are suppose to taper the cellcept by .1 ml each month until we go back. We go back March 15th! Also, we have to increase her folic acid intake by 1 mg each day.

I am excited and very nervous about all the changes. I pray that she continues to stay strong and that she improves daily as we taper. I am sure that she is ready to be off of all the medicine also. Last week she did learn to swallow a pill! Her folic acid is now in pill form due to them not manufacturing the injectible kind right now. But she is a very big girl and takes it like a trooper!

Thank you so very much for all of the prayers and support! You have been an inspiration to us and we ask that you continue to support Kya and CureJM. They are making great strides in the research of this disease due to the funding from CureJM. We will be going to Austin in February for the convention and to meet with the doctors. If you would like to donate we are trying to raise at least $1,000 dollars before this time for CureJM. You can donate through the CureJM website, through Kya's firstgiving page and leave her a note, or you can send us a check made payable to CureJM and we will get it to them! Again, I want to thank you for your support!

Please continue to pray for Kya's healing. She has a journey still ahead of her. Also, there are some tests that we do not have back yet that we are waiting on for her. Thank you and God bless you in the coming year!

Kalee

Great Christmas News

We have traveled to Chicago and back avoiding all bad weather. Kya got a great check up and we are waiting on lab work to come back. Dr. P did say to stop her plaquenil so that is exciting and scary news! Her skin looks really good and her strength was good. Most of all her attitude was wonderful. She was very cooperative and loved "playing all the games" (doing the strength test). It was a fast, rushed trip but we made it. Now we will wait for good lab results and return to Chicago in March. What a wonderful Christmas present!

While we were gone some little elves came and painted the girls rooms and bathroom. When I returned the girls stayed a while at Grandma Denny's with daddy and I came home and redecorated the rooms. They were so excited last night they couldn't believe it! It was an exciting Christmas present for them and us.

Thank you for your prayers. Please continue to pray for Kya and healing in her body. We appreciate the support of our church family very much! It means a lot to all of us. Thank you also to the other prayers warriors we have out and about. Once again thank you for everything! Merry Christmas and may God bless you and your family!

Kalee

Real Quick Update

Just a quick update. Kya was a sheep in the Christmas program at church on Sunday night. She looked absolutely adorable. She quickly tired of sitting on her knees so she began to wiggle and squirm and poke and turn around and eveything else she wasn't suppose to do. In one way I was ready to hang her and in another I was just so glad that she could do it!

She is doing OK. We have a few concerns about her tummy hurting and her not eating very good for us. Also, she has been complaining about her knees and legs hurting. We do go see Dr. Pachman Monday and we are praying that many of our questions will be answered. I just don't want to see her hurting!

Please pray for safe travel and good weather. Also, continue to pray for Kya and a drastic healing in her body. Thank you so much for the support and prayers!

Kalee

Pink Cheeks and Icy Roads

Today is an all to familiar day. It reminds me of last December when this all started. Kya's cheeks have a pink tint to them. Kind of like a wind burn or chapped looking, but I know that is not what it is now. Last winter I was fooled, but this winter I am fully aware of the situation. However, I can't figure it out. Her levels are all normal, her muscle strength seems strong, and she seems to be in a good mood. She walks around singing Christmas songs and redecorating the tree if you aren't paying attention! She has fallen down some lately, but I think if she would slow down and quit running everywhere that wouldn't happen.

So where am I going with this? I don't know. I am just venting. I am so frustrated right now. She has been doing so good with no rash and strong muscles that this is very confusing to me. If her labs wouldn't have came back so good I wouldn't be as confused, but they were great. The best she has ever had! What is up with this? I don't know, but I know that God does so I am officially staying out of it and I know that God will take care of her!

As far as the icy roads part of the title goes. It is very slick outside this morning! I mean they shut down I-40 from Amarillo to Hinton, but we still drove to work. (Doesn't make much sense, but sometimes we don't always think things through.) We made it in one piece, it just took us a while! This reminds me so much of last winter and the ice storm. We were the only crazy people out in OKC taking Kya back and forth to the hospital. We stayed there for 5 days getting steroid pulses and having her port put in. (Not that we could have went home anyway.) It was crazy!

Hopefully it will thaw out by this evening. Right now it is really foggy, 27 degrees here at work, and continues to freeze. (It was 23 at home.) I really enjoy my office job on days like this. I feel sorry for the people who are working outside in this weather!

Thank you again for all of the prayers. It means so much to our family. Please continue to pray for Kya and healing in her body. Pray that the pesky pink cheeks will go away and that we will have some comfort and peace during this season! Also, please pray for Lake and I this Sunday as his adult choir and my children's choir present two musicals at church. Again, thank you for all the support and prayers!

Kalee

Kya is Doing Good!

After our scare of having a flare and going to see the doctor last Monday Kya is doing better. She seems to be stronger and more energetic. She is not sleeping in as long or resting as much. These are all good signs. She is even back to crawling up on her bed without using a bucket of toys! We got her blood results back yesterday and everything was in the normal range. Her aldolase was a 4. That is the lowest I think it has ever been! Her being sick just really pulled her down and it took a while for her to get back on her feet. Also, she was off the cellcept for a week and a half to get over her infection and that really affected her.

As for the rest of us, we are all ready for Christmas (almost)!!! We started putting up the tree last night, but Kaysa wouldn't decorate it without her daddy. So we have a lighted, undecorated, 10 foot Christmas tree sitting in our front window! Kya wanted to hang the stockings and wrap presents for Santa. I think she is a little confused about the whole Christmas situation! So we put out the collection of Santa Claus', set up the nativity set (Kya loves it!), finished putting out all the other indoor decorations, and let the tree until later!

Please pray for us as we will be traveling to Chicago the week of Christmas. Kya will go see Dr. Pachman again. We are praying that her levels are still holding strong and that we can begin to taper another medicine. This would be the best Christmas present any of us could get! Actually, Kaysa asked Santa for a Cure for Kya. If that isn't selfless I don't know what is! So please pray that Kaysa won't be disappointed and that Kya continues to be healed!

Thank you again for all of the prayers and concern! You are the greatest strength we have. We are so blessed to have such great friends and a wonderful support system! Thank you again!

Kalee