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