A Week Without Steroids!

Kya is holding pretty steady right now. She had a busy weekend and is pretty wore out. But, as far as strength and rash I think she is doing pretty good. I don't see any signs of weakening, but I also don't see any signs of her getting any stronger. Except the fact that she has been without steroids for a week now!!!

Of course in the last week we have traveled 954 miles home from Chicago, got a new puppy, Kaysa pulled a tooth, stayed with Grandma Trish, went to dance, stayed with Grandma Denny, went to soccer, Stayed with Greta and Kenneddee, had cousins camp at the river place with my Graybill cousins, stayed the night with Kaden and Kaysa at Grandma Trish's, and celebrated Lake's 10th Anniversary as the music minister at the church. Nothing like packing a few things into a week. I told mom Saturday night about 6:30 that I was so tired and couldn't figure out why. She just looked at me and laughed. Then she reminded me that we had been to Chicago and back in the last week. We had been so busy since we had been home that I had totally forgotten.

Cousin's Camp was lots of fun! The kids enjoyed fishing, playing games, and getting dirty. The adults enjoyed sitting in the shade, enjoying the cool breeze, and remembering when. Each kid made a stepping stone again this year with their hand prints, name, and year. I told mom that in a few years their will be enough to make a neat patio out of them.

Yesterday, the church honored Lake for his 10 years of being the music minister there. They presented him with a personalized hymnal that many people had signed their favorite songs or left notes in. Then, last night they had a cake and ice cream fellowship for him and presented him with some cards and gifts. It was a very special day and we love our church family so much! They have been a huge support to us and there are many prayer warriors for Kya in our church family. Thank you so much for all you have done for our family and we look forward to the next 10 years!

Mom and LaDenta thank you for helping us take on Bubbles and getting her house broke. Keeping Kya is one thing, but keeping Bubbles is going the extra mile! We thank you so much, hopefully with Bubbles we can keep Kya strong and healthy through this winter.

Dad thank you for being there for me when I need sound logical advice. I know that I may not always listen, but I always hear you and remember what you say. I love you very much and I try to be as logical as you are. (although the whole house dog thing is hard to fit in my logic category!)

L.D. thank you for being you. You are the silent strength. Just a hug when you walk up says it all. I know that you have more than you can even think about on your plate and you still walk up with a smile and a hug! Thank you! I wish I had the strength to be that strong everyday. Thank you for making the attempts to drive all the way to Elk City to watch Kaysa play soccer just to be called back home. I know that you are going above and beyond the call of duty for everyone! Thank you for being the mortar that holds it all together! We pray for you daily.

Jimmy, thank you for everything. I can't express in words how much you have helped us. You have given us the opportunities to give Kya the best care possible. Whatever we or she has needed you have been there to provide or help us get. You told us there wasn't any place to far and I appreciate you helping us keep an open mind. You have always stayed so positive and checked on us no matter where we were or what we were doing. That means so much to know that you care. You also gave me the opportunity and experience I needed to prepare me for this even before we ever knew Kya was sick and I appreciate that. We never know why we are doing all that we do, but God does and later it all just falls into place. (Thank you for keeping me from moving to Arkansas!) Thank you for always being there for me my whole life and believing in me! I promise I will be there to take care of you.

Once again I just want to say Thank you to everyone around the world. Thank you for the prayers, the cards, the support, and most importantly the faith! Kya is going to beat this disease. We know it, God knows it, and we are going to prove it! She is doing well, holding strong and I know that she is wrapped in prayer. Thank you again for everything!

Kalee

GREAT REPORT!!

We saw Dr. Pachman yesterday and she gave us a really good report! She thought Kya was doing wonderful. The physical therapist actually put remarkable down for some of her muscle strength test results! Everyone was just so amazed that Kya was going as strong as she was and that she could do all that she was doing. Especially since we have tapered her off of the steroids. Now, we will see what her blood results look like. If they are all still normal she won't have to take anymore yucky methotrexate shots!!!! Then, we will hold and continue to take the medicines we are taking until we go back in December. If she is still doing well then she will start tapering her Cellcept.

We are so excited about the wonderful progress that Kya is making and we know that her prayer warriors are out there fighting for her! Thank you so much to those of you who have prayed for Kya. Her rapid response and improvement is pretty much a modern day miracle. There is no explanation for it besides prayer and God putting us in the right hands at the right time.

Also, Kya now has a new physical and emotional therapist in her medical team. Her name is Bubbles and she made the trip home with us from Chicago. She is a shichon who loves to spend time with Kya. She will help Kya with her therapy this winter when it is yucky outside and when she has to stay indoors so much from the sun. We will see how good she works, if nothing else she has provided about 830 miles of laughter and entertainment.

Bubbles was an absolute surprise to Kaysa and all she could do was hug her and go back and forth between her daddy and I saying "Thank you so much!" (She has been really wanting a house dog! Thanks alot Tobey!) She was so excited that I don't think she has hardly put the dog

down. She is all pumped up about it, but we will see how long that lasts!

I am not sure about the whole dog thing. I told Lake that I just got Kya potty trained and I don't really want to start over. However, if this is what will help Kya then I will give it a try.

Lake is the one who was all ready to get the puppy, but after last night he was wandering why! He thought that she needed to go to the bathroom so everytime we stopped we tried to take her when I took Kya, but all stops were unsuccessful. Oh by the way, did I tell you it was pouring rain. Then, last night she yelped for a long time in the crate when we were trying to go to bed. But, I must say she hasn't had any accidents yet.

Please continue to pray for Kya and her great improvements! Also, please pray for our whole family and the new therapist. Thank you again for all of the continued prayers and support that you have provided us!

Kalee

P.S. Yes I did know that yesterday was not the actual day of my dad's birthday. However, I wanted to tell him Happy Birthday and I didn't know if I would be where I could use my computer today! So, Happy Birthday Again Dad!!!

A Very Important Day

Today is

NATIONAL MYOSITIS AWARENESS DAY

(Please make someone aware of this disease today and let them know how to help us find a cure! Lives depend on it.)

and it is

Grandad Frank's Birthday!!!

(Happy Birthday Dad We Love You!)

Sunday in Chicago (Last day of Steroids?)

Today has been a beautiful day! Kya got up with the sun and so did we. She woke up bright eyed and raring to go. From our hotel room you can see Lincoln Park in all of its beauty. The most exciting part about it to Kya is the Lincoln Park Zoo! This is a beautiful, clean, and very fun place to go. Best of all it is free! You can come and go as you please. They have huge grassy areas for Kya to run and play in. She loves to feed and chase the sea gulls. They also have very neat African animals (giraffe, gazelle, ostrich, etc. all together), cat, monkey, and bear exhibits that Kya can spend hours at watching the animals. Here's a pic of the view!

So since we needed to stay near the hotel, away from crowds, and where we could push fluids we went to the zoo! (Again!) We spent about 3 1/2 hours enjoying the perfect weather and wonderful day. We even had a picnic on the lawn and chased sea gulls for a while. Kya really enjoyed herself and she even forgot the about the reason we came to Chicago for a while! Lake and I enjoyed the wonderful weather and just enjoyed watching Kya in all of her glory as she ran and played. I took a few pictures, but Kya kept telling me "I have enough pictures." and told me to put up my camera and play.

Later, we took a walk around town to see what all was around this area! Then, we came back to the hotel and it started to rain. Tonight we ordered supper in, had baths, packed some stuff back up, and now we are taking it easy and getting ready for bed. We have an early morning and a long day tomorrow!

Please continue to pray for Kya that she has another great day tomorrow. Pray that her test results come back good and that she gets great news! Your prayers and support have gotten us so far and I know that they will continue to heal her.

By the way Kya took her last scheduled day of steroids. Hopefully, Dr. Pachman will say that she is doing good and that she doesn't have to take them anymore.

Here are some of the pictures from our day at the zoo!

Once again thank you for the prayers! PLEASE CONTINUE TO PRAY FOR OUR FAMILY!

Kalee

Puppies 4 Sale

Kya wanted to put a picture of her puppies on here. She and Kaysa have 3 male, mini and toy australian shepherd puppies for sale. If you know anyone who is interested you can call Lake at (580) 303-0090.

Saturday Night in Chicago

We made the trip again! Kya did very good traveling and she is all settled in to her "Chicago Home". She is feeling pretty good and is just playing with her toys that we brought. We are waiting on some good Chicago style calzone to be delivered!

Tomorrow we will just hang out at the hotel and push fluids to make the blood draw easier on Monday. Then, Monday we plan on seeing the doctor and leaving as soon as she says we are released to go home! Hopefully, we won't have to stay an extra day to do any extra testing, but if we do, we will manage.

I ask that you please pray for Kya and that she has a great check up. Your prayers and support are greatly appreciated and needed. Thank you again for everything and we will keep you posted!

Kalee

Getting Ready 4 Chicago

Kya is having a good week. She seems to be staying pretty strong even though she is only getting 1 mg of steroids every other day. Dr. P's office called us back Monday and told us not to give her any more methotrexate. (Oops! It was a little late we gave her some on Sunday!) They said that was OK just don't give her anymore before we come to Chicago. We are very excited, but extremely nervous about all the tapering!

Please pray for our family as make the 14 hour trip to Chicago this weekend. Pray for good test results and continued healing in Kya's body. Also, please say a prayer for Henry Denning, he is a little boy who is 1 1/2 from Iowa who was just diagnosed with this disease last week. We know how hard it is to try to make the right decisions for your child and we want to remember his parents also.

Thank you so much for being prayer warriors for Kya! I know that it is your prayers pulling her through! Thank you for your support, understanding, and help!

Kalee

God is Great!!!

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

Kya is doing OK. I have been kind of disappointed in her strength this weekend. She seems to be a little weak in her arms and her ability to hold her bladder. We had labs drawn last Friday and we have everything back normal, but they didn't run her aldolase. We should have it back Friday! (I am very frustrated about that. Not like it isn't the most important one!) She did finish her antibiotics this morning and she will start back on her cellcept and methotrexate today. Hopefully, we finally have this infection beat!

Kya did take her flu shot yesterday and she was a very big girl. (After the ear piercing final plea scream!) Actually, we all took our flu shots yesterday and have the sore spots to prove it. I have just prayed that Kya and Kaysa will stay strong and healthy so we don't have to battle anymore infections or illnesses!

On a whole different note. Uncle Jimmy and Uncle Duane's racehorse, Inseperable, won the All American Derby! (It was worth $624,784!) We are very excited about the win for Inseperable. Now he will run in California in the Champion of Champions on December 12th! (It is worth $750,000!) He will be running against Uncle Jimmy and Uncle Duane's other horse, Separate Bet, who is his half brother! We will be cheering them both on! Kya loves to watch the horse races and she was definitely cheering this time!

Please continue to pray for Kya that she will continue to get stronger. Also, please pray for our trip to Chicago at the end of next week. I know that these trips are hard on her, but we also know that she is in the hands of the best doctors around! Thank you so much for your continued prayers and support!

Kalee

Another Infection

Well, we took Kya back to see Dr. Featherston yesterday. Her sinus infection has came back. She was on a 10 day round of antibiotics and she had been off them 5 days. They did a CBC and her white cells aren't even elevated. Which I thought was a good thing that means the disease is under control and it is not going rampid in her body. However, when you have an infection and they aren't even elevating enough to fight it off it is not a good thing. So here is the scoop. She will be on Zithromax for 7 days with no cellcept or Methotrexate for one more week. Then she will be off antibiotics for 5 days but back on the cellcept and Methotrexate. Then she will have another 7 days of Zithromax and be on the cellcept and Methotrexate. The whole time we are still tapering her steroids! Are you confused yet? I am getting there. I go into all of this just to explain how tedious this whole disease and medicine situation is.

Many people have asked how Kya is doing and I say good. Which she is doing much better and she has made huge steps in the right direction and we even feel like we are on the downhill climb. However, you have to keep in mind that one little runny nose for someone else can become a huge sinus infection for her and really change the course and direction of her disease. She is still on her daily meds, totalling 9 a day. We go to Childrens on Friday to have a blood draw and see where her levels are at since we have stopped the infusions and lowered her steroids.

Her cheeks are a little rashy looking, but nothing else is showing signs. She is still pretty strong and her knees, elbows, and hands look clear. Please pray for Kya that this infection doesn't send her into another flare. We know that satan always attacks when things are going good and Lake has had a good week in revival. So we know that satan is just trying to get us down, but we know that with everyone praying for her that we will have victory over him!

Thank you again for all of your prayers and support!

Kalee