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

Kya has had a pretty good week. I would like to say that I think she is officially potty trained again! I am not sure who is more excited her or me, but it is a good thing. She still has signs of a sinus infection when she sneezes, but besides that she acts just fine. She spent last night with her Papa and Grandma Denny for the first time! Her muscles seem to be staying strong and her vocabulary and speech is definitly growing. She loves her puppies and horses. Saturday she even helped scoop poop out of the horse trailer and she thought she was big stuff! (Kaysa didn't want to have anything to do with it!)

Please continue to pray for healing in her body and that she continues to remain strong as the continue to taper her steroids! We are excited and nervous about the tapering, but we know that GOD is in control.

We go back Friday to have a blood draw to see where her levels are at right now. I am very anxious to see the results. I only wish it wasn't over a long weekend!

Thank you again to everyone who has prayed and supported us through this journey. Lake is in revival again this week and it is just a reminder of how many people are praying for her! We know that God has special plans for her and for our family and we are excited to see what those plans are! Again please just continue to pray and she will be healed!

Kalee

Just a Little Update

I don't even know how to start this blog. Kya's strength is staying pretty strong. She has been running, playing, wrestling, and just being a normal kid. But, she still has her nasty cold/sinus infection. She is still on antibiotics which means she is not on her cellcept or methotrexate. Her cheeks kind of look a little light pink rashy, but not bad. She has developed a yucky really loose sounding cough, but I think it is just from drainage. If you were to be around her you would think nothing was wrong at all unless you heard her cough or saw her runny nose! So, I really don't know how to say she is doing besides she is holding her own.

This weekend the girls and I stayed at home and did nothing on Saturday. It was so nice! Lake went to Clovis, NM to pick up his horse. Saturday night Brandon came up to see us and Grandma Trish and Grandad Frank came over for supper and to play Wii! Then Sunday Aunt Twylia and Aunt Sheila came to Great Grandma Reta's house and we went out there until nap time. Sunday night we had Summerfest (church singing and ice cream social) in the park and we had fun playing with all of the kids and the music was great!

This morning we were pretty tired, but we all got up and started another great week! Lake and I were talking last night about how happy we were to see Kya running and playing like she did last night. You just realize the little things are what count and you pay close attention to them. I do want to say "Thank You!" to Taylor and Abby Welty who played with and chased Kya around all night you were so much help to us!

Once again a special "Thank You!" to all of our prayer warriors. Please continue to pray for healing in Kya's body and with all of our allergies! We appreciate everything that each of you do for us! Thank You Brandon for all of your help with the girls and with the sound system. You all mean very much to us and we appreciate everything!

FYI: Kaysa and Lake will be singing in Vici this Saturday Night at the Great Western Opry. It will be a fun night of entertainment if you want to come out and enjoy a great band and some wonderful country music!

Kalee

Just A Little Infection

Well, Kya is doing OK this week. She got a sinus infection Sunday and they had to put her on Antibiotics on Monday. Since she is trying to fight this infection she had to stop her cellcept and Methotrexate while on the antibiotics for 10 days. Unfortunately, we had just given her the methotrexate injection Saturday so it had really pulled down her immune system. She seems to be doing pretty good today. Her nose is still snotty and running, (You have to love Oklahoma wind.) but it is not yellow anymore. We are praying for a speedy recovery and no setbacks.

Other than that Kya and Kaysa have started dance this week and Kaysa is trying to complete a full week of school. We have had great rain this week and the grass is pretty and green. The new puppies opened up their eyes yesterday and the girls are really ready to start holding and playing with them. Kya has decided she wants to be a "big girl" and wear panties. We are still working on it, but she has done pretty good the last few days.

Again I want to thank everyone who has been praying for us. We know that she will be healed in God's time. I ask that you continue to pray for healing of the infections and the it does not cause a setback. Thank you again for you support and prayers. Also, thank you to all of those who have taken some of Kya's squash. She is definitely a squash growing girl! Thanks again!

Kalee

God at Work

This is a hard blog to even start. The first thing that I should say is "Thank You Lord!". Kya received a very good report from Dr. ONeill Monday morning. Thank you to everyone who has been praying for her! We know that it is through your prayers and God's guidance for the doctors that she is where she is at today! We can't tell you how much you mean to us!

Monday morning started early. Kya had to be at the hospital at 8:45 a.m. We weren't sure about what they were going to do so we put a lidoderm patch on her to numb her port and she immediately changed her disposition. I tried to tell her that she wasn't getting an infusion, but she didn't believe me. When we got to the hospital Kim evaluated Kya's muscle strength and she did very good. She still lacks the lumbar muscles she needs and is a little weak in the arms, but very strong in her legs. Kya was actually able to hold each leg up the whole time they were wanting her to. (I think it is from all of the time she has spent in the pool and at the waterpark this summer.) Then, Dr. Chen came by with Dr. Fair, who Kya was not very fond of, (You would think they would learn to quit wearing the white coat!) and they spent some time talking to her and looking her over just for their own learning. She was OK with Dr. Chen, but she hid in the corner from the "white coat doctor". Finally, Dr. ONeill came in and Kya was so glad to see her she ran and gave her a hug. She was impressed at how well Kya was doing. She has no rash on knees, elbows, fingers, or cheeks. Her nailfold capillaries looked "very good". The only thing is her eyes still have a slight heliotrope look when she gets tired. But, all of her labs have came back normal for quite a while now and she is well within all of the normal ranges and seems to be doing very good.

With all of that said, Dr. O'Neill decided that we would quit the steroid infusions and thought that we should start tapering her daily oral steroids. This makes me a little nervous, but they are the professionals and I know they will try to do what is best for her. So we are going to give her 2 mg of Prednisone daily for 2 weeks, then 1 mg of prednisone daily for 2 weeks, then 1 mg onf prednisone every other day for 1 week. We will go back in 4 weeks and have her blood drawn to run lab work. Then 2 weeks later we will go to Chicago to see Dr. P and then 3 weeks later we will go back to OKC to see Dr. O'Neill. We are very nervous and excited, but I know that things can change with the drop of a hat. But, right now she looks like she is on a very good road!

Besides the doctor appointments we had a mini vacation before school started today. We went to Oklahoma City on Sunday afternoon. We took the girls (and Lake) to Incredible Pizza and they had a ball. Once we got back down to bricktown we took a carriage ride and they even let Kaysa drive the carriage. Of course first thing Monday morning we had to go to the hospital. Then, after seeing the doctor we took Kya to try to get her glasses fixed again. After getting her glasses adjusted to where they would stay up on her nose for a while we went to get our new stuff for dance. Kaysa and Kya will start Tap, Jazz and Ballet again next week. While we were getting our dance shoes and new leotards daddy went to Lifeway to pick out Christmas music. (I can't believe we are even thinking of Christmas yet!) Then we went and ate at Chili's because that is where Kya wanted to go! After lunch we went back to the hotel for some swimming! After a couple of hours in the pool we went to the room for a couple hour nap! Then, we decided to go to the mall to pick up a couple of things and go eat at Cheesecake Factory! We love their chicken picatta and dessert! Then, we went to the red pin in bricktown and went bowling. The girls had a ball! Sadly to say Kaysa won! She beat us all. (I got last as usual!) It stormed that night and Kya did not like the thunder echoing off the buildings downtown!

Yesterday, Lake and the girls got up and went swimming again while I got stuff ready to leave. Then, we went to Spaghetti Warehouse for lunch. My girls really like to go there and eat in the train car they have inside! After lunch, we had to go get some las minute back to school necessities. Of course, you can't leave town without a mani & pedi at the "bear chair place". (Celeste Spa at Quail Springs Mall ask for Liliann she is the best!)

Then, we headed home so we could get in bed by bedtime since school started today. When we got home Kaysa found that someone or something had gotten in her dog pen and gotten out one of her puppies. We found it laying in the middle of the yard dead. It was a sad time at our house. (We still can't figure out exactly what happened. The puppies are just 7 days old and their eyes are still shut and they can't even get out of their house.) After the trauma Kaysa went inside to her room to be sad. Then she came out yelling that she had pulled a tooth. We decided we need to take a walk and she wanted to ride her bike before she had to go to bed. So we walkd a little over 1 mile and it was very hot! Kaysa was ready to go in and take a bath!

This morning Kaysa watched the sun rise! She was so excited about school. Kya on the other had, was still asleep when we took Kaysa to school. She even took her medicine with her eyes closed!

Thank you again to everyone who prays for us, has supported us, and who follows my crazy blog! It means so much to our family to know that we have friends like you guys out there. Lake and I had an emotional time Monday after the doctors visit. You just don't ever know when something like this is going to hit your family and then to hit a young child it is so hard on you as a parent. Then, the prayers and cards that have came in from everywhere were just amazing!

It was 8 months on Friday since they told us that she had this disease and that there was not a cure. But, what they didn't know was the prayer system we had and the faith that God will cure her. We know that she has had great medical attention and that we have taken her to the best from the start, but even they are amazed and we know that only God can do what has been done in her! In 2 months she will be 3 and I just think back that she had only been 2 for 2 months wehn she was diagnosed. It has been a crazy 8 months, but I have learned more in these past months than ever before in my life. I have learned the importance of great health insurance. I have learned the importance of having great bosses and a "work family". The importance of family and close friends. The importance of cherishing every moment with those that you love! The importance of getting your priorities straight. The importance of a church family and church families! (All of the churches that Lake has been to for revival or who have taken us in and sent many cards and prayer grams!) I have been reminded of the true power of prayer! The importance of a wonderful, supportive, helpful spouse. But, most importantly I have learned the importance of a continued faith in God! Even when I wanted to say, "Why her? Why us? Why this?" He would say "Why Not?" She will have a testimony. I won't give you more than you can handle and I know that you 2 can handle this together. It will make you stronger "God, who shows you his kindness and who has called you through Christ Jesus to his eternal glory, will restore you, strengthen you, make you strong, and support you as you suffer for a little while. (I Peter 5.-10)" He has shown me a closer walk as a christian and I know that He has awesome things planned for our family through this!

Thank you once again to our pray warriors! Thank you once again to our wonderful family and friends! Most of all "Praise the Lord"!

Kalee

Kya is still doing pretty good. She was very cranky this morning and didn't want anyone but mommy. (and she even prefered if mommy would leave her alone) She kept saying her tummy was hurting, but I think she was just tired. I gave her the morning medicines and hoped that the zantac would help if her tummy did hurt. I took her to Grandma Trish's house and she didn't even want to stay there. She wanted to go get Kaden and go back to her house with mommy. (That makes it really hard to go to work!) But, she must be better because I haven't gotten any phone calls from Grandma Trish.

For a quick run down of the last week. Friday was my birthday so Kya and Kaysa stayed with Grandma Trish while we went out to eat and went bowling with friends. Then, Saturday we went to an athletic fundraiser and Uncle Jimmy bought Kaysa an electric scooter. (Which she has ridden everyday including 1 time through the house!) Sunday morning we all went to Sunday School!!! We were so excited. I missed my class so much and just being able to go learn and fellowship means so much. Kya was excited to be in her new class and had full attention. She did pretty good during church, but got a little restless after the hour was up. She will get better, but it will take some time. We went to the corner and ate with the family and then we came home and all took a nice long nap. Then after evening church we walked 2 1/2 miles, ate pizza and had a family movie night! (Spirit was the feature movie of the week.) Monday night Kaysa had gymnastics. She got her back handspring by herself on the floor! (She was even doing so good she got to start working roundoff back handsprings!) When we got home from gymnastics we walked another 2 1/2 miles. (Kya enjoys going for walks in the evening.) Tuesday night Kaysa and Kya went to Marci's birthday party at the waterpark in Woodward! (They had a ball! Thank you Kimbre for watching Kya while I went to the meeting!) Lake had a bank training session at Woodward at the same time and I was able to go for a while during the party. Then, Kenzee came over to stay the night and the girls had a blast. Wednesday Kaysa and Kya stayed with Grandma Dennie. They played at the house, did laundry, cleaned their rooms, and even fixed a candle lit dinner for Lake and I. Unfortunately, I had another training session that night, but I ate when I got home. (It was the best sandwich ever!) They were both so proud of themselves for being such big girls! Then, after supper they put on a show for Lake and I and we had entertainment until bedtime. That pretty much catches us up to today.

As you can tell, Kya is doing much better. We are staying very busy and trying to keep her active, without over doing it. We really wanted to go to Ruidoso with Uncle Jimmy today, but it is just not a smart decision to go that far with Kya yet and expose her that much! Also, she has a doctors appointment in OKC early Monday morning so we are planning on going up on Sunday afternoon and spending some time with the girls before school starts. We may go bowling, watch a movie, and hang out at the pool.

Again thank you so much for your prayers! We feel like we are on a steady track to being better right now. But, with this roller coaster of a disease we never know which way we will turn next. Please continue to pray that Kya will continue to get stronger each day. She is still having trouble with her bladder control. If she could get this back we would all be much happier! (It is very frustrating to her!) Thank you again for all of your support! We have a great network of friends, family, and acquaintances. It is amazing to think of how many are praying for her and it will be nothing short of a miracle when she is healed! I know that God can and will heal her and that He has great plans in store for her! Thank you again for everything!

Kalee

Infusions Over?!

We got great news this morning. Kya's aldolase was at 5.5 on Monday! So they are stopping the steroid infusions and we are going to see how she does. We are so excited, scared, relieved, and anything else you can imagine!!! I know that our doctors know what they are doing and I have faith that God is healing her, but the emotions that are in the pit of my stomach need to know what my mind does!

We will go back to see Dr. ONeill on August 10th. She will check her out and they will check her levels to see how well she is doing! As long as she is still doing good they won't do another infusion. (However, if for some reason they think she needs one they will do it that day.) Then we will go to Chicago and see Dr. Pachman on September 21st!

Once again, I can't say how excited we are! I truly believe that we have an excellent team of doctors working with Kya. Dr. O'Neill has been great from the start and having Dr. Pachman to consult when things got a little tough has been fabulous! They have worked so well together and I have not had to mediate between them. It would be great if all doctors would work that well together for the best interest of their patients. Also, I can't forget Dr. Jarvis, he was there on call in the middle of the night when Kya got so sick the week before Easter. He even gave me his cell phone number in case she got worse so I wouldn't have to go through the hospital paging him!

Thank you to all of you who have prayed endlessly! Many of you have sent cards and that means so much! We ask that you continue to pray endlessly that Kya will be healed! Thank you so much for all of your support!

Thanks Again!

Kalee

Another Infusion Over

Kya is doing very good. She had another infusion yesterday and she did very well. She didn't get sick at all and she seemed to still be pretty strong before the infusion. I am praying that her levels will all be well in the normal range and that they decide that she doesn't need any more. But, I want what is best for her so if she needs more we will take more! She is so good about taking her daily meds that I shouldn't gripe about the infusion battle every now and then.

Today she is staying with Grandma Trish and Kaysa. She was very excited last night about helping to paint a cabinet today. I am not sure this is a good project, but grandma can handle it!

Also, Kya is very excited to get to start going to Sunday School this Sunday. She will be promoted out of the nursery and into Grandma Trish's Sunday School class. So, we decided that mom will make sure no one is there sick and then call me so I can bring Kya to Sunday School. That way she is getting to go while still being cautious!

Please continue to pray for Kya that her levels will remain level and that her disease is going into remission. We are praying that we will be able to stop the infusions and that she will slowly begin to have tapering of her medicines! Thank you again for your many prayers and support!

Kalee

Change in Infusion Dates

They called from OKC today and I have to go Monday to get my infusion instead of Tuesday. So please pray for me and for Sabrina. (she is filling in for Mavia and I yell at her a lot while she is accessing and pulling my blood!) Grandma Trish, mommy, and Kaysa are going to go with me to get my infusion this time. I pray that my blood results all come back good so this might could be my last infusion! (But, I am not going to hold my breath.) God is in control and I will be done when He decides it is time.

On a lighter note: I have had a good week. I got to see aunt Twylia and Great-Grandma Reta on Wednesday night and Kaden came to Grandma Trish's to stay the night with me. Then aunt Twylia came back to play with me on Thursday and I really enjoyed that. I have spent the last 2 days with Grandma Trish playing with Kaden and Kaysa! Late last night (after a very long late nap) I even got to go to the river for a little while and play on the swings and in the sand. I think tomorrow we might go to the new water park at Woodward late in the evening. We will just see how the day goes! Also, I am adjusting very well to my new glasses.

Thank you again for everything and please continue to pray for me!

Kya Kay

I Can See Clearly Now!

I got my new glasses today! I really like them and I can see better!

Here is what I look like now.

Now Kaysa and I both have glasses!

I have had a good day today. I got a good nights sleep and I have taken a good nap. I should be all rested up! Kaden is coming to play with me and I get to stay with Grandma Trish! I might even get to see Aunt Twylia. What more could a girl ask for?

How about a night with Jennie Finch! I got all of the USA World Softball Teams autographs and I got to meet Jennie Finch! She told me I made her want to go home and have a little girl!

Here is a picture of Kaysa, Daddy and I with Jennie Finch!

Please continue to pray for me and for my friend Gary! (Actually for all the kids with JDM!) He is getting better, but he is still on a feeding tube. I know that you guys have special prayers and that with everyone praying for us we will get better! I will see you soon! Thank you for all your prayers and cards. (They make me feel very special.)

Thanks!

Kya Kay

Lessons Learned

Kya is doing pretty good. She has enjoyed Kaysa being home and playing with her everyday! She seems to be staying pretty strong and she looks pretty good. She may have a light pink tone, but when it is 100+ degrees everyday until sundown that isn't a surprise. The sun has definitely been our enemy this summer! We have tried long naps during the day so we can play late in the evening into the night outside and when we have to be out we wear long sleeves, pants, and her sunhat! Along with 85 to 100 sunblock! But, Kya is great about getting all of her gear on and keeping it on.

Lately she has really started to develop into her own little person. She is kind of starting to leave the baby/toddler stage and go to the toddler/big girl stage! (This is a very scary thought.) Kaysa is her mentor and whatever she does Kya is bound to do. This is not always a good thing! In the last week we have learned what not to do and that Kaysa is not always a good influence. Lessons learned last week:

1. Don't play basketball on the asphalt with no shoes! (You will rip off a toe nail! Ouch!)

2. Don't eat frozen chocolate chips! (Unless you are ready to lose a tooth!)

3. Don't paint your feet with nail polish once you have lost your toe nail! (Yes I mean the skin!)

4. Don't fingerpaint on mom's wooden dining room table in new pajamas!

5. Don't spread the fingerpaint through 3 rooms of the house trying to clean up your mess!

6. Don't tell your little sister it is makeup and use nail polish over her entire body!(Once again skin from eyebrows, nose, arms, legs, back, bottoms of feet, you name it!)

7. Don't jump from the 3rd step of the ladder onto your bottom bunk bed! (Wooden headboards make huge bruises and knots!)

8. Nail polish does not easily come off of skin and it really is hard to get out of eyebrows!

9. Don't throw water balloons at people much bigger than you it hurts when they throw back!

10. Don't wear flip flops or go barefooted when you are missing a toe nail!

These are just a few lessons learned at our house last week! I guess kids just have to be kids and learn on their own, but some weeks it feels like crazy chaos! I was very upset at first when all of this happened, but then I thought about it. I am so glad that I have 2 girls that are able to get up and wreak havoc! I am so excited to see Kya up and playing and trying to do everything she shouldn't do that it is hard to be mad very long! And I know that Kaysa knows better. Then I think about everything that she has had to deal with also and she is just excited to have Kya up and playing with her and trying to be just like her that she doesn't think before she does things! She is just trying to entertain Kya and keep her happy and active! I did throw away all of the nail polish and makeup. The finger paints have been banned to outside and Kya is not allowed on the bunk bed ladder. Maybe this week will go a little better! (If not you may have to come visit me in Fort Supply!)

On a positive note, Kaysa got her back handspring by herself on the floor at Gymnastics! This is a big accomplishment and we are very proud of her. She really wants to go to team, but we told her coach we are going to wait until Kya's disease is a little more under control and we aren't traveling as much with her!

Kya can't wait to get back to dance. She would love to take gymnastics, but that is not an option! She is also mad because we aren't suppose to let her on the trampoline, Dr's orders! Overall though she is doing great considering the disease and everything it can do!

I also learned a lesson this last week. My friends took their little boy Gary, who is 2 and has JDM also, to Chicago to see Dr. P for the first time on Monday. By reading their comments I think they were a little disappointed with what they found out. Also, there was another parent who took their child to Chicago to Dr. P and they were disappointed also. However, that dad made the comment he went there looking for a miracle and they didn't find one. Basically, they were checked out just like we were and told that really there wasn't much else that she could do. That they were being treated properly, she didn't see anything wrong with their care, and that she would be a consultant for their treating physician if something came up. She also warned them to take care of themselves! Both families were disappointed with that answer and offended by her comment to take care of themselves. (which I understand she told me that also and I thought I know I have paked on the pounds you don't have to remind me!) But, it made me think really hard why I wasn't upset with my Chicago trips. I realized it was because they were looking for a miracle and I was looking for reassurance! I wanted her to say you are in great hands in Oklahoma and you are doing everything you can! I wanted her to say I know your child, I know her case, and when you need me I will be here for you! I wanted to have faith and confidence in the decisions we had already made and I got that! She only had to make a few tweaks and things were great!

I realized that we are that way with God sometimes! We get so disappointed because we are looking for a miracle instead of listening to him say YOU are doing the best YOU can do. I know your name, I know your case, and I am here to help when YOU decide YOU need me! He is the only cure! He is the only Miracle! We can look for everything here on earth and never find what we are looking for or missing! I hope and pray that everyone looking for a miracle anywhere else will realize that HE will provide it if we have faith! Kaysa has prayed from the start that Kya will be the first kid "cured" and she truly believes with all of her heart that GOD will answer her prayers! We as adults need to be more trusting and believing in our prayers and turn it all over to HIM!

Please continue to pray for us! (All of us!) Pray that Kya will adjust well to her new glasses that she should get this week. Pray for continued healing in her body, that it will adjust to the tapering of the meds, and that her levels will stay down without the IV Infusions. Please, continue to pray for the doctors and researchers that they find a cure for this disease and in the meantime that they are able to successfully treat each and every patient!

Thank you again to our wonderful prayer support! The cards and prayergrams that we continue to receive are so uplifting! We live in a supporting part of Oklahoma, not just our community but the many surrounding communities! Thank you again for everything!

Kalee

New Vision for Kya

Kya had an appointment with her opthamologist this morning. (Not that a 2 year old likes having her eyes dialated, but we have to!) He told us that she now needs glasses. We just saw him in January and everything was OK, but things have changed in the last 6 months. So, tomorrow we will go to his office in Oklahoma City so she can pick out the glasses she wants! Also, she will see her pediatric dentist and have her teeth checked out really well. They will also finish Kaysa's dental work tomorrow while we are there. Then, tomorrow night Kaysa's coach pitch softball team will get to lead team USA onto the field for the World Cup of Softball and each player on her team will be introduced. It is suppose to be on ESPN and the game starts at 7:00 p.m. Kaysa is very excited!!!

Kya is still doing pretty good. She looks a little rashy, but just slightly. She is having a steroid day today and that is not fun for anyone involved! Please continue to pray for healing in her body and for her team of doctors as they decide what to do next. Thank you once again for your support!

Kalee

Not So Good News

I got Kya's Aldolase results back from last Tuesday and they were up to 7.1. Yes, they are in the normal range, (high end of normal is 7.6) but they were up by 1.5 points from 3 weeks ago. I am waiting to hear from the doctors to see if they still plan on doing one more treatment and stopping or if they are going to change their plans. I know that tapering is a balancing act and it is the hardest part of the disease, but that doesn't ease my tension any at all. I do know that I have to trust the medical professionals, but I just want to scream "She is doing just fine on all this medicine lets leave everything alone!" But that is not possible!

Kya has had a busy weekend with the big Harrel Reunion and all of the family and cousins to play with. She is holding up pretty good. She is taking a little longer naps and fatigues easier, but she still stays positive and keeps climbing and going! Please continue to pray for Kya and that her levels will start to level on their own. I know that God can heal her and that with your prayers she will get better! Please also pray for Lake and I. It is hard to get your hopes up and then the wind taken out of your sail! It makes me very angry and upset that your own body could turn against itself! However, I had told Lake this weekend and before the infusion last week that I thought her levels were up, so it shouldn't surprise me!

Once again thank you for your prayers and support! Please continue to pray for our family.

Thanks Again!

Kalee

More Good News

Yesterday went very good. Kya had a treatment and she saw Dr. ONeill. The doctor was very impressed with how well she was doing and how great she looked! We will have another infusion on July 28th and then only take our daily meds and our weekly shot. She will do this until the first of September and then they will pull her blood again to make sure she is maintaining OK. Then if she is doing good they will lower her Methotrexate by another .1 ml and try to taper her off of that first.

We are very excited right now and we pray that everything continues to progress. Kya is doing great and we praise God for her progress!

Thank you so much for your prayers and support! Please continue to pray for improvement and complete healing in her body. Thank you so much!

Kalee

Another Treatment

Kya has another treatment tomorrow and she will see the doctor in Oklahoma City also. Please pray for her and us. Her normal infusion lady, Mavia, is gone on maternity leave and Kya does not like change!

Thank you for the many payers and for the great support! Many of you have sent cards almost every week and we greatly appreciate it! This means so much to our family and you have a special place in our hearts! Your prayers and support will never be forgotten. Thank you again and please continue to pray for complete healing!

Kalee

GREAT NEWS!!!

We heard back from Chicago and Kya's bloodwork all came back in the normal range. We are so excited! They also told us that her last two infusions will be this Tuesday and again on July 28th. Then they will only give her daily orals and her shots and see how she does. I am not sure how often we will have to see the doctor and draw labs, but they will be monitoring her closely! I am not sure how to feel at this point. Excited, scared, hopeful!

Thank you for your many prayers! We know that it is your prayers and support that have helped her get through this. You mean so much to us! Please continue to pray for improvement and healing in her body! Thank you again!

Kalee Carpenter

We won the championship! It took 2 tries, but we did it! They made our coach pitch team forfeit because we didn't have enough players without our t-ballers and they were still playing! But, we will still play in the losers bracket Thursday at 7:00. Kya was so excited after the games that she ran the bases for about 10 minutes after everyone was off the fields. She was telling everyone that she is going to play t-ball next year! (I am not sure about that) Our little girls worked very hard and so did all of our coaches and "staff". Congratulations girls you deserved it!

Kya is continuing to hold strong. We still haven't heard anything back from the Chicago lab results. I am going to call them today and see if they know anything yet.

Thank you for all of your prayers and support. Please continue to pray for Kya and her healing! Also, please pray for Kaysa and her dental work that she has had done and will have done. Thank you again for your prayers!

Kalee

Where has June Gone?

I know I haven't blogged lately, but this month has grabbed a hold of me and drug me along. It has been a very busy month. (I am not sure when we aren't very busy?) From Kaysa playing on 2 softball teams, dance recitals, Basketball camp, dentist appointments, IV Infusions, doctor appointments in Chicago, several anniversarys, lots of birthdays, and everyday activities we have ran until the late hours of the night every day! Good thing that is when Kya is at her best. We let her sleep through the heat of the day and that way she is good to go! She is actually holding up better than the rest of us!

Kya is actually doing pretty good. She might be a little weak, but I think she is doing ok. Her usual infusion date would have been yesterday, but since they spread them out she won't have one until next Tuesday. Please pray that she maintains and even gets stronger over the next week. She took her Methotrexate shot Saturday night and did pretty good with that. It is not making her as sick as it used to. The lower dose is helping ease the nausea. She still says her tummy hurts, but she will at least eat that next day. Overall I think she is maintaining. I know she is enjoying her summer and going to all of the softball games in the evenings. She really likes to socialize, be outside, and see her friends.

Yesterday, Kya took a late nap so she was good to go until about midnight. which was good because Kaysa played softball until 11:00 last night. We had a nailbiter in t-ball and came from behind (our first time all season) and won 23 to 22. We were down by 6 when Kaysa hit a homerun in the last inning with 2 people on base to score 3 runs! What a way to start a rally. Everyone stepped up and we scored 4 more runs with no outs to win the game! Then we played the first round of the coach pitch tournament and we run ruled the team so we got to go home early! (Ha! Ha!) Kya went home and stayed the night with Grandma Trish! Kaysa was having dental work done at 8:00 this morning in Edmond so she and I went to Yukon to stay last night after the games.

Tonight we have the championship game of our t-ball tournament. Sounds like a real big deal, it is at our house! Our teams are undefeated so far this season, but it will be a tough game tonight. Then, we have the 2nd Round of our coach pitch softball tournament right after the t-ball game. (We are also undefeated with that team) We will finish up the coach pitch tournament on Thursday and Friday! Then, Kaysa will sing Saturday night with the Oklahoma Opry band at Yukon at the Freedom Fest for 4th of July.

Speaking of 4th of July, Kya is ready for firecrackers! She has been talking about them since last week. She wants to do "Romans". My children really enjoy setting off fireworks, especially Roman Candles! (I am not sure how safe this is, but no one has gotten hurt yet!) Uncle Jimmy is having his big 4th of July get together tonight and we are playing ball. I haven't even told Kaysa because she will be so disappointed. We are going to try to make it to see the big fireworks as soon as our games are over. (But I am afraid it is going to be to late.) This is one of Kaysa and Kya's favorite holiday get togethers! We will have to try to make it up to them somehow.

Well, that kind of sums up what has happened this month and since the last blog. Please continue to pray for Kya. She is continuing to get her muscle strength back, but there are a few muscles that we really are having to work on. Her trunk muscles are still rather weak. Also, she still doesn't have her bladder control back (it comes and goes) and that is making it hard to get potty trained! Please pray for improved muscle strength in especially these areas. Also pray that she continues to respond well to the tapering of her medicines.

Also, please pray for our new friends, the Bradford's in Washington. Their little boy, Gary who is 2 also, has the same disease and he is not doing well right now. He can't swallow and he has a feeding tube. He has also been in the hospital in isolation with a bad infection. We know what they are going through as we have been in there shoes! He was just diagnosed in May so they are in the trying months right now. Please pull your prayers together for their family and especially for Kya and Gary! They don't understand what is going on or why it is happening. It is so hard for them dealing with all of their emotions, the medicines, the needles, and just the changes in their lives! Also, say a special prayer for Kaysa and Gary's siblings. Kaysa made a comment the other night about she wouldn't have prayed and asked for a baby sister if she knew she would have to be sick. It is so much for them to process! (It is so much for me to process!) We forget how much it affects everyone involved!

Thank you again for being a great support team! Your prayers are greatly appreciated!

Kalee

Crazy Week Update

Ok. I know it has been a week since I have blogged, but it has been crazy around our house. Kaysa has been playing softball or we have had something every night since we got home. Last night was the first night I had even been home to do laundry. (So much fun!)

Kya has been feeling pretty good. You can tell that she is a little jet lagged from the long trip last week, but besides being tired she is doing very good. She is very active and trying to do everything her big sister does! Grandma Trish put up her pool so Kya has been swimming quite a bit. She loves to swim and it is great therapy for her. They set up the pool to where in the mornings it is shaded until almost noon. I think Grandma is just trying to wear her out so she can take a long nap, but whatever works!

The doctor lowered her methotrexate dosage and she did much better after her shot Saturday night. She stilled complained a little bit about her stomach hurting, but she was eating the next day which never happens. We won't have another steroid infusion until July 7th so we will see how she holds up until then. So far, she is going strong and I think she is even growing some.

We did go to church sunday morning for the worship service. Kya did fair. She was pretty excited to see everyone and to be back home. She was a little louder than I wanted her to be, but we made it through in one piece. The bible does say to make a joyful noise and she was definitely doing that! We are going to try it again this Sunday as long as she is feeling good and there are no bugs going around the community. We just feel like that is where we need to be and Kya has missed it so much!

Thank you for the many prayers and support! We know that they are working and making a dramatic difference in Kya's life. We would not be where we are today without them! Please continue to pray for a healing in her life and body. Together we can beat this disease!

Thanks Again!

Kalee

Good Bye Chicago

We said good bye to Chicago at 2:47 a.m. Yes that is correct in the middle of the night! We didn't plan on leaving until 4:00 a.m., but since Kya had so much blood drawn and was infused late in the evening she was not able to sleep. (and when Kya can't sleep no one gets to sleep!) So we decided to go ahead and pack up and leave. We definitely were not in rush hour traffic. It was a pretty good trip home. We didn't have to stop very many times. We actullay got home in time to unload all of the luggage and unpack. Then we loaded back up and headed to Elk City. kaysa has softball games at 8 and 9. Nothing like traveling a few miles. I am actually blogging from the vehicle. I just looked at the odometer and we have traveled 1,904 miles since Saturday morning. We are all ready to go home and sleep in our own beds!

Kya is doing good today. She is a little defiant, but that is typical after a day at the hospital. The doctors just say that it is her trying to have control of something. It is frustrating, but we will manage! thank you for your prayers. Please continue to pray for this wonderful healing going on in Kya's body! Your support is encouraging and we are so greatful to have friends like you! Thanks Again!

Kalee

Wonderful Wednesday

We have had a very good day! We went to Rainforest Cafe for a birthday lunch. Then, Kya, Lake, and I went to the hospital for the afternoon. Kaysa and Grandma Trish went and rode the El Train and then they went to see the musical Mary Poppins. After that they came back to the hotel packed up their suitcases and then went to the beach. Everyone just got back to the room. We are getting baths and settling down for the evening. We are going to order supper in and watch fireworks from the room. Then we are going to bed so we can leave at 4 a.m.

Kya got a very good check up. Her strength and muscle test was up 6 points which they said was remarkable. The doctor could not believe how much better Kya was. She said her rash is all gone and she can't believe how well she has responded to her treatment. She lowered her Methotrexate dose and said that we would do steroid treatments every three weeks now. They went ahead and gave her an infusion today. I can't wait to get the results back and see how her levels are maintaining.

Thank you for the many prayers! You keep us inspired and your support is appreciated!

Thanks Again!

Kalee

Tuesday To Remember

Today started off slow (which was nice) due to Kya sleeping in. She slept until 10:00 a.m. However, after she woke up she was in full speed. After getting around and dressed we decided to drive to go eat lunch. We have been walking everywhere the past couple of days but since the weather today was cool and rainy we decided we better drive. It was a good idea since it did rain most of the day and it is still raining as I am typing this. Once again I got the pleasure of driving in Chicago. :( It is a very unpleasant city to drive in, (especially for a western Oklahoma guy) On the way to lunch Kya kept telling me to HOINK since it seemed everyone was HONKING at her daddy. After driving for about 10 minutes, I finally got to HONK and boy did I lay down on it. However, after HONKING I realized that I really shouldn't have been honking since the reason the person in front of me wasn't going was because the draw bridge in front of him was drawn. I really felt stupid! (nothing new) However, it was really cool to see a draw bridge in the middle of downtown Chicago.

After eating lunch we decided to go to the Chicago Field Museum since it was raining and we were all ready out and about. The Museum was great! Kya and I both really enjoyed it. The displays were amazing and I finally got to see the lions from the movie The Ghost in the Darkness. Kya really enjoyed all the animals and she really paid close attention to the exhibits. We stayed at the museum for about 3 hours. I highly recommend the Field Museum if you are ever in the Chicago area.

On the way back to the hotel we decided to stop at Navy Pier. Since it was still raining we just walked around the inside of Navy Pier and checked out the different stores and variety of restaurants. Kaysa had received a little money from her Grandma Denny for her birthday and it was burning a hole in her pocket. So she decided to use some of it at the Build a Bear store. She worked very hard in designing her bear. After about an hour she had her bear complete. She is extremely proud of her bear and it does look good. After Kaysa was done, Kya decided she needed to build a rabbit (not a bear). So she found her daddy and they designed a special rabbit named Ballerina. Of course the name fits the design of the rabbit. Kya loves rabbits and she really enjoys dance. So the rabbit is not only cute and fuzzy but it is a dancer.

We grabbed a quick supper before leaving Navy Pier. Then we headed back to the hotel to prepare for tomorrow. Kya has a big and long day at the hospital tomorrow. We will be there for most of the day. In fact, we are already packing up to leave because we plan on getting back to the hotel late from the hospital and are planning on leaving really early (like around 4 a.m.) Thursday morning to head back home.

We pray that the appts and tests go well tomorrow. I pray that Kya is a "good" patient because it is a long process. More importantly, I pray her results come back good and that we get a great report. Kya appears to be so much better especially in the last month. We are blessed to have you praying for her and for us. I want to personally THANK YOU for all the support and prayers you have lifted up for us and more importantly for Kya. God is GREAT and so are people like you.

Thank You!

Lake

Monday In Chicago

Today has been a good day for everyone. We started with a short trip to the market and Walgreens to get a few things for our picnic lunch. Then we came back to the room and got everything together to walk to the zoo and take our lunch with us. Kya was so excited whe was getting to go to the Lincoln Park Zoo. We covered her in sunscreen, long sleeves, pants, and a huge sun hat and spent the morning looking at all of the animals. Kya's favorite was the kangaroos. She really likes things that hop!

This afternoon Kaysa wanted to go to the beach. So we loaded up the crew in the wagon and walked to the beach. It was pretty cool and the water was very cold! But, Kaysa played in it for quite a while. Kya fell asleep on the wagon ride over so we just put a towel over it to make a shade and let her rest.

Then, tonight we walked to The Cheesecake Factory for supper. It was about a 2 mile walk. Then, we came back to our hotel and we are calling it a night. Kaysa is very tired and doesn't want to walk anywhere ever again!

We have had a very good day and Kya has really enjoyed her trip so far. Chicago is so much better than it was in March. Kya is so amazingly better that it is hard to imagine that she was as bad as she was when we came last time.

Thank you so much for your many prayers! Please continue to pray for her. Also, please pray for Gary Bradford. He is 2 years old also and has JM. He is in the hospital not doing very well right now. I have been talking to his mom quite a bit lately. He was just recently diagnosed and he is going through a situation a lot like Kya was. I keep encouraging her that it will get better, but it is so hard to sit there and watch your child continue to deteriorate in front of your eyes. I know that we have such a strong prayer team and I ask that you pray for this little boy also because he needs them very badly! Thank you again for all that you do for our family! We appreciate all of the support and prayers!

Kalee

First Day Back In Chicago

We are back! I am sitting in our hotel in Chicago looking out the window at Lake Michigan and Navy Pier. It is a beutiful night and we have a great view! Everybody is very excited to be here and can't wait to go on an adventure and exploring tomorrow. Tonight we are just ordering in Calzones and the girls are having sandwiches!

Kya is feeling much better. She had a great day of traveling. She slept for about three and a half hours! She definitely needed the rest. Tonight she is much more active and her cheeks are not as pink and rashy as before. I am praying for a great check up this week. I know that she is not full force, but she is getting stronger.

Kaysa is excited about getting to spend her birthday in Chicago. She will be 7 on Wednesday and is making all kinds of plans. I hope she has as much fun as she thinks she is going to!

So far we have tried to make it a fun vacation trip. We started early yesterday morning and went to The Aquarium at Jenks and saw sharks up close and personal. Then we went to Springfield, MO to Bass Pro and stayed the night. Then we adventured on to Chicago today. We are trying to see how many of the "World's Largest" items we can see. So far we have seen the World's Largest McDonald's, the World's Largest Candy Store, and the World's Largest Gift Shop. Kaysa thinks we can make this the World's Largest Vacation! Kya is just excited to be back at her Chicago house.

Please pray for us this week. Kya will spend from 12:45 to about 8 or 9 Wednesday night at the hospital. Thank you for the many prayers and support!

Kalee

Going Strong

Kya is having a very good week. She has finally caught up on her rest from last weekend and is going strong. She has been helping Grandma Trish this week get the river place ready for the kids from Boys Ranchtown to come out and play for the weekend. Also, she has been picking lettuce and spinach from her garden. She checked her other plants and she has some small tomatos starting and an inch and a half long zuccini on one of her plants. She even has some marigolds blooming. I think our okra has gotten to much water. (It looks pretty sad!) Kya loves her garden and it gives her something to do outside in the evenings. A fun way for some physical therapy!

As far as her rash goes it is pretty much a thing of the past. Her eyes will heliotrope a little when she needs some rest or gets to tired. Her muscle weekness is constantly improving. She may be a little weeker this week because she had such a big weekend. She will have an infusion while we are in Chicago and that will help! We are getting ready to make the journey to see Dr. P again. Kya keeps asking her sissy if she wants to go to her Chicago house. I think Kya is excited that it won't just be her, mom, and dad on the road for 14 hours this time. She thinks Kaysa and Grandma Trish will add some entertainment to the trip! (and they probably will)

Kaysa is most excited about the World's Largest Candy Store on the way. (Imagine that!) She is also excited about going to the Aquarium at Jenks on the way. She doesn't know much about Chicago so she is not sure what to think is going to happen there. All she knows is that she will be 7 when she gets back to Oklahoma!

Thank you for your many prayers! Please continue to pray for our family and the many others with children who are going through the same thing. I know that it looks like she is just fine now and that everything is all better, but she is still a long ways from well! Sometimes we even forget that but we are reminded of that as I am drawing up her meds everyday. She is still taking a methotrexate shot once a week that makes her feel very bad for about 2 to 3 days. Every other week she spends at least 3 hours at a hospital getting an IV infusion and at least once a month she sees a doctor whether she likes it or not! Even with this things are much better than they were.

Thank you again for your continued support and prayers!

Kalee

Where do I start?

I don't even know how to start this blog. Kya is doing amazing! She had her first dance recital Saturday night. She did 3 routines in a recital that lasted 3 and a half hours long and ran across the stage at the end to give Cinderella a hug and get her trophy at 10:30 p.m.! She never fell down once during the recital and no accidents. (she fell a couple of times during rehearsal the night before) She danced like she was no different than any other little girl on the stage. She was so proud of herself and her trophy! It was definitely a tearful moment for us after all she has been through in the last 6 months.

She was pretty tired yesterday after such a big Friday and Saturday night. Today she is staying with Grandma Trish and I am sure that she will get caught back up on her rest. She is ready to show Kaysa and Grandma Trish her Chicago home next week. I just pray that everything continues to improve and that she has a great check up! Kya loves Dr. ONeill and Dr. Pachman and I think that they are doing a great job together. People who see Kya who know about the disease just can't believe how much better she looks and how strong she is getting. Those who don't know anything is wrong can't tell it! We even had to use blush at the dance recital because there is no pink left in her cheeks.

To those of you who are our prayer warriors thank you very much! Juana Kay and Leroy thank you for each and every card that you send to both girls, they love them! We will be praying for you guys also. To the Martha SS Class at Cheyenne, Kya looks forward to your cards and she keeps all of them! Thank you so much. To everyone else who has sent a card they are in our tub full of hope! To everyone who has said a prayer thank you very much! It is your prayers that are making her stronger and stronger. To everyone who doesn't believe in prayer you need to just take a look at my daughter and listen to her story! To my Sunday School Class, I know I haven't been there in a while, but thank you for keeping me updated on everything that is happening! I miss being there and hopefully that can change soon.

To my family I can't thank everyone enough. LaDenta thank you so much for giving up your time to come to Leedey and keep the girls everytime I call. I can't imagine what I would have done without you the last few months! Mom, you are the absolute greatest. You are my strength and courage when I have none left. You have taught me so much and been there through everything. I couldn't ask for a better best friend in the world! Thank you for keeping the girls and being Kya's port in the storm! Dad I love you so much. You have taught me to be strong my whole life and take care of business. You have always encouraged me to get things done on my own, but to always remember that you are there if I need anything. That has helped me so much through this battle. Jimmy you are the best uncle, boss, friend, and supporter I could ask for. You have made it possible for me to give Kya the best medical care possible. Without you I don't even want to try to imagine where we would be with her right now. You have helped us think and figure what would be best for everyone involved and made that possible! When I thought something was out of reach you showed me how to stretch or climb to get it.

Lake, I can't even start. It has definitely been a journey! You have been there every step of the way. (Sometimes even getting stepped on) Thank you for putting up with all of the steroid fits (from both of us), the restless sleepless nights (from both of us), the indecisiveness (from both of us), and everything else that you have put up with. You are the best Chauffer we could have ever found! I can't imagine going through this alone and I haven't had to. You are a great friend, minister, grandson, son, brother, daddy, and husband! You have had to deal with everything at one time and have handled it with ease. You inspire me each day! To think that last year at this time we were on a cruise with no worries my how your world can change! I am so glad that I have you to share this journey with!

Please pray for a little boy named Gary Bradford. He turned 2 in March and was Diagnosed in May with JDM also. His story is a lot like Kya's and his family is dealing with the same things we are. Thank you again for your prayers and support! God bless each of you.

Kalee

Kya is having a pretty good week. Her treatment went well on Tuesday and she did not get sick! She has eaten everything in sight since then, but that is OK. She is ready for her dance recital on Saturday and it could be very interesting to see what she will do. I am so glad that she is handling the treatments as well as she is. I know that it is God answering all the prayers that get her through each day!

Thank you for your continued support and prayers! Please pray for increased dramatic healing and a good trip to Chicago to see the doctor. We appreciate the support, prayers, and concern. Thank you again!

Kalee Carpenter

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

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