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