Kya has had a good weekend. She went and watched Kaysa in her musical Friday and Saturday. Then, Sunday night she went to church for a little while (until she got loud and restless). Last night we gave her the methotrexate shot, which she did not like. She seems to be doing OK. We have noticed some weakening of her neck muscle and her knees giving out a little. Her face is still pretty clear just a light pink with a few bumps. I am waiting for the nurse to call back so I can get our lab results from last week.

One thing about Kya she has the system figured out. Last night after church she started saying she didn't want to take a shot and we hadn't even mentioned it. Then, she would not go to sleep and she started saying I don't want to go to the doctor after my nap. We reassured her she did not have to go to the doctor today and she finally went to bed.

Please continue to pray for God's will to be done in Kya's life. We realize that he is the one true healer. Thank you for your prayers and support! A special thank you to the church for your support and the funds to help with Kya's medical needs. We appreciate each and everyone of you who are following, praying, and supporting us through this time!

Kalee

Kya is having a good week. She has felt fine since Monday. Her rash looks great and she is moving very well. She even slept most of the night last night. Kaysa, however, still has an awful cough! I had to come home early and get her from school this morning because she was coughing so bad.

Thank you for all of your prayers! Please continue to pray for our family and healing within it. Kaysa's musical starts tomorrow night so we have to get her ready to sing! Thanks again for everything!

Kalee

Kya had a treatment yesterday and it went better than last time. She still got sick, but not as bad as last week. Dr. O'Neill called this morning and said she was going to slow down the rate that they do her infusion to maybe prevent her from getting sick. Besides that she is doing great! This infusion has made her very hungry. She is eating everything in sight!

Please continue to pray for Kya! They did lower her dose of Methotrexate this week. We are seeing babysteps in progression and tapering and that is very exciting! Thank you so much for your prayers and support! We appreciate everything you have done for us.

What's Happening

This is the first week since the first of December that I have not been to a hospital or doctors office!!! I am so excited! Since I have had a such a good week mom hasn't blogged much, but we decided to put some pictures up to show what has been going on!

Please keep praying for me, because I do have a treatment Monday. Thank you for your prayers and support! Now for the fun part! Pictures of me!

This is Easter Sunday Morning. Don't I look fancy! I am a little rashy because I had to get off of my medicine because I had been so sick all week!

This is Kaysa and I after church on easter. I love my big sister!!!

Our whole family together at church! This hasn't happened in a long time.
Look at me I am a PRINCESS!!! I love to play dress up. I am getting ready to go to the ball!
This was back in February. I was just enjoying laying around being a little DIVA!

This was toward the end of January. I really wasn't feeling very well and my face was really flaring!

I may still have a little rosy cheeks, but I have come a long way! I feel better and I am getting stronger each day!

Thank you for your prayers and support! You helped me raise over $3200 to help find a cure for my disease! Hopefully these days of dealing with medicine and IVs will come to an end and I can do anything I want! Thank you again for everything!

Kya

Kya is having a good week. She has been feeling much better this week. We are back on all of our meds and going strong. Her rash is getting better and her movement is pretty good. She definitely is getting very strong willed. If her nose would just stop running we would be even better. (However, we live in the highest allergy and windiest place in the world so that probably won't happen.) But besides a runny nose she is doing great, considering!

Thank you to everyone for all of the many prayers that have been said for her. She is definitely a miracle of God's. We couldn't make it through this without all of the great support by everyone out there. Please continue to pray as we have another treatment on Monday. Thank you again for everything! You are a true blessing to us!

Kalee

Much Improved

Kya is doing much better! She had a good weekend. She was able to hunt easter eggs, went to church, and she was even able to go to the farm to see the baby horses. We gave her the methotrexate shot last night before bed and she hasn't gotten sick on us yet. So today she started back on all of her medicines including the immunosuppressants. (So, we won't be going out much anymore.) We were letting her immune system work to get her well and we decided to let it work through the weekend while we had all of our family around. My Grandma and her twin had an 87th birthday party this weekend and all of their kids came in, many of the grandkids, and several great grandkids. We were glad that Kya was feeling better so she could enjoy the party with the rest of the family.

Please pray for a good week and continued healing in her body. We appreciate the many prayers, donations, concerns, and support! Thank you for the blessing you have been to our family!

Kalee

Kya has made it 24 hours without vomiting! We came to OKC last night and she saw Dr. Jarvis in clinic first thing this morning and she had lost over 5% of her body weight since Monday. She was in need of an IV of Saline and they pulled blood to check some of her levels. She was infused with 200 ml of saline and now we are at the hotel until we are sure she is going to be able to keep down food and have some wet diapers. She has had to stop all of her immunosuppressants while she has been sick to try to let her body work some on its own. We will start them back tomorrow as long as we have a good night tonight.

She ate a very small amount at lunch around 2:00 and kept it down. But she kept saying her tummy hurt and got very pale a couple of times. We went and ate supper about an hour ago and she didn't eat hardly anything. She took a few bites and said her tummy was sick and she needed to go to the doctors, but she has kept it down. Most importantly she has drank about 20 ounces of Gatorade throughout the day and she asked for some Sprite at supper. So far she is doing better, but we aren't quite over the hill yet. She still will get real still and say her tummy hurts or that she is sick and loses her color very quickly.

Please continue to pray for Kya's healing. Thank you for all of the prayers and concerns. We appreciate all of the support!

Kalee, Lake, Kaysa and Kya

Say A Prayer Please!

Kya has been throwing up at least every 30 minutes since 10:30 last night. We have been talking to the doctors in Oklahoma City since 2:00 this morning. Right now we are trying to see if we can get her to take her Zantac and keep it down. Then in about an hour see if we can get some steroids down her. We also need to get about an ounce of liquids down her every hour so we won't have to go get an IV. They are trying to keep her hydrated. They really don't want her to have to go to the hospital because of all the illnesses she could catch with no immune system.

We know that prayer is the answer. Please say some special prayers for Kya today. We know that God will take care of her. Thank you for all of the prayers!

Kalee

A Rough Day

Kya has had a very rough day today. She saw Dr. O'Neill first thing this morning. She did really good with her strength tests and the Dr. said that she is looking better. Her test have normalized again and we are going to try to spread treatments back out to every two weeks. Then the nurses taught Lake how to give her the Methotrexate shot and he did a good job. When we were done upstaris we went downstairs to have a treatment. They had a real hard time drawing blood today. Then, about halfway through her treatment she began getting sick. They had to slow down the treatment and give her some atarax. The atarax knocked her out and she slept through the rest of the treatment and all the way back to Elk City. She went to dance a little sleepy, but whe wanted to go. Then, we met Grandma Trish and Kaysa at Dr. Featherston's office. Kaysa is sick and she can't stay with Kya. So, Kya got to go to Grandma Trish's house to stay for a while.

Please pray for Kya to feel better and for Kaysa to get well quickly. Thank you for the many prayers and support! We will keep you updated.

Kalee

I am having a pretty good day today. I even got to go to church for a little while this morning. I got a little restless after the music was over. So Grandma Trish and I went to her house about halfway through the service. It is just really hard for me to sit still when I am so excited about seeing people! This afternoon I took a nap and now I just playing around the house.

Tomorrow, I have to go see Dr. O'Neill and Mavia. I don't want to go, but it will eventually make me feel better. Hopefully I will be done in time and feel good enough to go to dance afterwards! Please pray for me and all of my medical team. Thank you for all of your prayers and support!

Kya

Super Windy Saturday

Kya has had a good day today. Right now, she is taking a nap. She went to the bank and helped me work today while Kaysa was at play practice. Then on the way home they both fell asleep. Her JM is pretty good today. Not to much muscle weakness and her rash isn't just flaming. However, we have a very runny nose and red eyes. I hope that it is just allergies with Oklahoma's great 60 mph wind the last 3 days!!! We go to see Dr. O'Neill Monday and we have a treatment so if we are coming down with something maybe we can get it caught early.

We had the fundraiser for Cure JM on Kya's behalf and raised $3,098! Thank you to everyone who donated their time, money, and items for the auction. Every fundraiser is one step closer to a cure for Kya! Kya even was able to attend and she actually got on stage and told everyone "Thank You Very Much!" (that is a huge milestone for her) Thank you to everyone who put work into getting the fundraiser together. The play was great! I know it was hardwork, but we greatly appreciate it!

Please pray for a good day Monday, that it is just her allergies, and that she is over whatever it is quickly. Thank you for all of the continued prayers. We know that we are facing a long battle of tapering meds and doing a balancing act so please keep us in your prayers as it is very hard to handle the down times. Please help us keep Kya strong and healthy with your prayers! Thank you again!

Kalee

Feeling Better Than Monday!

Kya has had a pretty good couple of days. She is feeling much better than Monday. We still are not sure what happened, but we sure are glad that she is feeling better. Her rash seems a little better and her movement is still pretty free and easy. We are so happy for the good days!

Thank you so much to those of you who have been our prayer warriors! I think it is harder on Lake and I not knowing what the next minute holds with her. We just have to remember that it is completely out of our hands and that God is in total control! (that is sometimes easier said than done, but we have great reminders) Your prayers have been great support to us. The phone calls to remind us that you are still thinking about us and praying for us mean so much.

We are getting ready for the Cure JM fundraiser they are putting on for Kya Friday night at the Red Carpet Theatre. Don't forget that it begins at 7:30 p.m. in Elk City. They are going to do a short production and then have a silent and live auction. Many neat items have been donated for the auctions! If you are able to attend I think that it will be a fun evening!

Once again thank you for the many prayers and all of the support! You keep us going!

Thanks!

Kalee