It is amazing how God works when you don't try to be in charge. It is so hard and it is just human nature to want things on your time and He gives them to you when you really need to hear it!
After my frustrated blog yesterday and being discouraged about not hearing about the lab results I headed home with Kya from dance. As I was driving and she had finally fell asleep after crying for 5 miles that she wanted to go home (which is where we were going)! I got a phone call from the doctors office. They had found out Kya's Aldolase level from the lab and called me with it. It was 5.2!!!! We are so excited. That means all of her levels were perfectly normal, which is great considering how we have changed her med for the infection and since we are tapering her steroids. Also, she hasn't had a methotrexate shot since August 15th and she has been off cellcept 14 of the 19 days before the bloodwork. God has truly done a miracle in her little body and we praise him for the blessings and healing he has done.
We are scheduled to start the cellcept and the methotrexate back today. However, in the back of my mind I am saying we have been off methotrexate this long and our levels are good do we really need to start it back? I hate that medicine the most. It makes Kya feel so bad and it totally changes her disposition for at least 24 to 36 hours. It just breaks my heart and of course it is a shot which everyone hates shots! Hopefully, not to much longer and we will be off of the bad stuff. We only are scheduled for another week of steroids at 1 ml and then 1 week of 1 ml every other day and then we will be done with them.
Kya has rested a whole lot this week. She has been sleeping in and taking good naps. I think she got tired last weekend and got kind of weak on us, but she is going strong now! I just cried yesterday when I got the results back and watched her go to dance and run and play. It is amazing how fast and hard it hit her and how she has recovered so strongly. She is a tough little girl and she acts like nothing is wrong with her! She has truly taught her dad and I a lesson in what is important in life.
Last night we had a party for Uncle Jimmy at their barn and Aunt Marilyn had out Thanksgiving and Christmas pictures. It was really hard to look at them at first, but then it made me think. At Thanksgiving we didn't have a clue that she even had anything wrong with her and there were no signs. Then, at Christmas to look at how awful she looked and to see her trying to do things that should have been easy. (Like open presents!) I was just amazed at how quickly your life can change and how lucky we are to have everyday. I keep reminding myself of this when I get so busy with everything that we do with our kids. I am just glad to be here another day with them doing whatever it is that is keeping us busy that day! (And with Kaysa and Kya there is always something!)
Speaking of busy days. Kaysa is now in Clover Buds. (Basically it is like pre4-H!) They started Tuesday and we have county fair starting today. Anyone who knows Kaysa knows where this is going. They told her about the fair and the classes that you could enter stuff in. Of course, Kaysa wanted to enter all of the classes! We didn't enter all of the classes, however last night (after the party at like 11:00 p.m.) we did put together a Garden Variety Basket (5 different types of vegetables she is growing in her garden), 2 straight horn yellow squash, a plate of cookies (that she made), a potholder (that she made), and the largest squash (don't think it will win, but it was large). Kya then thought that she needed a big squash, so we found another big squash and she entered one also. (Good thing we aren't very good gardeners or we wouldn't have 2 huge squash still growing in the garden!) Kaysa had made something out of nothing to enter at the cloverbud meeting. She is sure that she will win something!? We took all of the stuff to school this morning because it has to be at the fair in Taloga by 6:00 tonight and we have a soccer game in Elk City at 6:00! But, I wouldn't want it any other way. I love that my girls want to be involved with everything and that they like to be busy. It will keep them out of trouble when they are older! Kaysa, however, loves to be gone and busy. Kya wants to be home and busy with projects. It sometimes makes it a little difficult, but we manage!
If you see my mother in law I would like for you to tell her how special she is. She drives to Leedey several times a week to keep Kya so we don't have to get her up and out. She keeps her at our house when my mom can't watch her and she even does laundry and helps keep my house picked up! Not everyone would do this, but with her help we are able to both keep working full time.
To my mom, I don't know where to start. So I will just say thanks for everything! You mean the world to my family. I just pray that nothing ever happens to you, because you keep us all going in the right direction. I thank God for you each day and I know that you will have a huge mansion in heaven that won't have screaming Grandkids in it! Thank you for keeping my girls so much. You have made it possible for Lake and I to be involved in everything we do without worrying about if our kids are OK or not. You and dad have set the example for the kind of parents we want to be!
I just want to thank everyone again for being prayer warriors! You mean so much to our family! I know that there are many of you who have prayed without ceasing for Kya and I know that is what has got her this far. God knows who you are and He will truly bless you! Thank you also for the support from our family and friends! To anyone who has helped out with juggling Kaysa around and helped us get her from place to place thank you also! As Luke 22: 28 says "You are those who have stood by me in my trials."
Please continue to pray for Kya and her healing! Her journey is not over and she still has a long road ahead of her, but we are headed in the right direction. Also, please pray for safe travel as we go to Chicago at the end of next week. Thank you again for praying and remember that you also are in our prayers!
Kalee
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