Kya has continued to have a pretty good week. Her Aldolase level came back very good from last treatment day. She has another level that is kind of low which can make her bleed easy and cause her blood not to coagulate very good so we are going to watch that. Her glucose came back kind of high again. So, we are going to cut the bread back some and try not to do as many sweets. The bread could be a challenge! Overall, she is doing very well.

Her nose has healed up from the wagon accident and she has been playing full force with Kaysa. She is so excited to have someone to play with everyday. I know they have been keeping Grandma Denny very busy!

Please continue to pray for Kya. Tonight is shot night and she has a treatment on Tuesday. Your prayers help make everyday a little easier! Thank you for the many concerns and prayers.

Kalee

Fun Weekend!

Kya is having a good week, but she had a great weekend!

Kya spent the whole weekend at the river place. There is only one thing that she likes better than going to the river place and that is getting to stay there! Since we had a long weekend she took a retreat with Kaysa, Kaden, Grandma Trish, and Grandad Frank. They spent all day Saturday, Sunday and Monday at the river and stayed Saturday and Sunday nights. Lake and I went out Saturday and Sunday, but we didn't stay the night.

When I asked Kya what all she did at the river she said they played in the sand, they played on the playground equipment, they rode their 4 wheelers, they took nature walks, they played in more sand, they went fishing, they had a fish fry, they played on the swings, they roasted hot dogs, they played in the rain, they played on the slick slide, and they played some more. I think you get my drift. She just enjoys the independence and relaxed environment that she gets when she is there. She knows that there are no doctors, no shots, no needles, just lots of rabbits and squirrels to chase! After playing hard for 3 days she was still not ready to come home! (I think she would live out there if we would let her.)

One lesson Kya did learn this weekend is not to always follow Kaysa's example. Kaysa decided to ride a small lawn wagon scooter device down the sidewalk on the hill. It worked pretty good for her and Kya thought it looked like loads of fun. However, being 2 not 6 made a large difference when she hit the end of the sidewalk and in her decision making skills. The scooter popped up from the change in surface and lack of weight and Kya went flying. Luckily we just had a skinned nose, some severe grass stains, and bruised pride.

Also, Kya made a new discovery while spending so much time at the river. Saturday night she learned that there are these animals that make a really loud howling noise around night time. Being a concerned 2 year old she needed to know what they were. Grandma Trish did her best in explaining what a coyote was, but in the translation of a 2 year old they are not coyotes. They are Grandad Frank's River Doggies that yell at night! (Whatever works!)

Needless to say she is doing so much better! We are just amazed daily at her progress and thank God for answering our prayers!

I know that it sounds like everything is back to normal, but actually it is just a new normal. The part that I leave out is she can't be in the sun between 10 and 4, she has to put the strongest sunblock available on first thing everyday no exceptions, she still takes 11 meds a day given in 9 different syringes, her daddy has to give her a shot weekly that makes her sick, and she still takes an IV infusion that lasts about 2 hours every other week! But, Kya is a very strong and determined little girl! She is getting her muscle strength back more and more everyday!

We have learned to focus on the positive changes in her life, live each day with the new normal, and be thankful that we have another day with each other! Kya has been such a blessing to so many people and has already changed a few lives.

We take many things for granted in our lives and our bodies are the most common thing that many of us mistreat. I know that Kya's disease has made me more aware of taking care of my body and my weight. My father in law has stopped chewing tobacco because of Kya's diagnosis! (Congratulations LD. We did notice!) We have learned that we should take care of what we have, because some people don't have that option. While we were attacking our own bodies, Kya's body was attacking itself!

Once again I want to thank you so much for the many prayers and cards! You have been such a support to our entire family! Please continue to pray for Kya. She is much better, but still has a long road ahead of her!

Thank you for your support!

Kalee

Best Week So Far!

I have had a very good week. My treatment didn't make me sick this time. Last night I got to go watch Kaysa play her first coach pitch games and she did really good! Tonight I am going to watch her play T-Ball. I really like to go to the ball fields and play! I have spent most of the week with Grandma Denny. We have really bonded lately. I am so glad that sissy is done with school so that we can play together everyday! (I miss getting to play with kids everyday.)

Thank you for your many prayers and concerns! I know that God is hearing them and that He is helping my body! I am getting stronger daily and I am doing better between my treatments. Please continue to pray for me. I am better, but I still have a long ways to go before I am well!

Thank you!

Kya

Kya had a pretty good day yesterday. She woke up not happy at all about her treatment. She was not in a very good mood at all! But, things went well with the treatment. Her blood draw went very smoothly and the treatment lasted about an hour and forty-five minutes. Then she insisted on going upstairs to see the doctor. But, there were no doctors up there so she just saw Kim. When we were done at the hospital Kya was ready to eat a cheeseburger and french fries! She ate an entire Happy Meal and didn't get sick!!!

Thank you for the many prayers and support! Please continue to pray for her healing and the treatments.

Kalee

Kya has had a good week. We went to the State Softball Games and watched Leedey girls win State Runner Up! Kya enjoyed getting to go and see all her friends. She also enjoyed the day of fresh air while still being in the shade! She also got to swim at the hotel. She really enjoys swimming and it is great therapy for her! She has had a very busy week.

She seems a little weaker the last couple of days, but she has been much more active than usual. Also, she is scheduled to take a treatment on Tuesday. It has been almost 2 weeks since her last treatment and that makes a huge difference.

Please continue to pray for healing in her body and that she continues to improve. Thank you for the many prayers and all of the support!

Kalee

Kya has had a pretty good weekend. She got to go to the farm and stay with her Papa D and Grandma Denny on Saturday. Then Kaden, Uncle Brent, Aunt Tahna, Grandad Frank, Grandma Trish, Papa D, Grandma Denny, Uncle Jimmy, and Aunt Marilyn came to her house for Mother's Day lunch. After lunch Kaysa, Kaden, and Kya were able to play outside in the backyard and they had a blast! Then, they went to Great Grandma Reta's house and Aunt Twylia was there visiting. What more could a girl want!!!

She has seemed pretty strong lately. Yesterday she jumped on the trampoline quite a bit, climbed on the swing set, and ran around everywhere! She even got her leg up over the edge of our garden bath tub trying to get herself out. (she has never done that before) Her Methotrexate injection didn't make her as sick this weekend. We gave it late Saturday night and then she went to bed. That seems to work the best!

She has complained that her tummy hurts a lot on and off. I hope that we are not developing stomach problems from the disease or the medicines. I know that some of the meds have stomach pain as a side effect and I hope that is what we are dealing with.

Please continue to pray for healing. Thank you for the many wonderful prayers and words of encouragement!

Kalee

Quick Update Review

Kya is having a very good day! Her levels are all in the normal range!!! We don't have any more doctor visits until we go to Chicago and see Dr. Pachman on June 17th. We will continue to do IV solumedrol infusions every 2 weeks. Then we will go see Dr. ONeill on July 13th. We do have to try to remain out of the dreadful UV rays of the sun as much as possible. They really seem to affect Kya quite a bit.

We are very excited about Kya's progress. We know that God is in control of the disease, that He is guiding the doctors, and that He has taught us many lessons over the last several months!

Thanks,

Kalee

Good test results!

Good News! Dr. ONeill called yesterday afternoon and said that Kya's Aldolase was 5.7. That is very well in the normal range. We are very excited about this and we pray that she continues to maintain as we taper her off of some of her steroids! She has been feeling pretty good and very playful! She has complained quite a bit about her tummy hurting, but she hasn't gotten sick. We are not quite sure what is going on with that right now.

Thank you so much for the many healing prayers! Please continue to pray for our journey and Kya's healing. Your support keeps us going strong!

Thanks,

Kalee

Kya had a good day yesterday. Her treatment went very smoothly. The meds run over an hour and a half now, but that seemed to work better. She saw the doctor and did pretty well with her strength tests. Her neck and abdomen are still pretty week, but her arms and legs are strong. Dr. O'Neill adjusted her cellcept a little bit in hopes to keep her strong for the 2 weeks between treatments. We are going to try to maintain an every 2 week treatment schedule to allow her to grow. Please continue to pray that this will work and that she will be strong and not have growth problems. We are not scheduled to see the doctor in OKC until July and we go to Chicago in June. We are very excited about being able to spread out her dr. visits and we pray that everything goes as scheduled. We won't know any test results until next Monday to know if her levels are back down in the normal range.

Thank you for the many prayers. I know that many of you are praying for Kya, but please remember Kaysa too as this is very hard on her! Thank you again!

Kalee

I have had a pretty good week. I am getting a little bit of strength back. My Aldolase level was up last week and I was getting weaker, so we adjusted my cellcept and methotrexate a little bit. I think it will hold me through until Monday. That is when I have my next treatment and I go see Dr. ONeill.

Kaden came to stay with Grandma Trish and play with me yesterday. I really enjoy getting to see him! Wednesday night I helped Grandma, Kaysa, and Daddy plant a garden. (Mommy helped some, but she was busy cleaning out the car and getting it ready for daddy to take to school on Thursday.) I planted Squash seeds everywhere! (I opened a package of squash seeds without anyone knowing and planted them randomly through out the entire garden on my own!) I really enjoy being independent and playing outside!

Thank you for your prayers! I know that I will get better in time. Please continue to pray for healing and a good day Monday! God Bless each of you!

Kya