It has been a while...

Kya has been doing great! So, I haven't posted. We are only doing blood draws every 8 weeks now so I don't have a whole lot to report on. However, we have been spending some quality time together as a family. We went to Great Wolf Lodge over fall break and teh girls had a blast. Kya hasn't been on a vacation ever that she could remember that didn't involve a doctor or blood draw. She was so excited and informed us that she was millions of miles from the doctors. Heart breaking but so glad that we have gotten so far down the road!

Then last week Kya turned 4!!!! We had a pizza party at Mazzios with 48 people. Don't ask me what I was thinking, but she loved every minute of it. She was so glad to see everyone and just enjoyed having people around her. Of course it was Ariel and she even dressed up in the costume to match!!! I will try to post some pics later.

Kya has been battling a cough and allergies for the last couple of weeks, but so has everyone else. She is going strong, loves school, dance is fabulous, and enjoys her time at Mrs. Sheree's house with the other kids.

Please continue to pray for complete healing and no more flares. We are excited and nervous as our journey continues. I may be a little more on edge now because we just have to sit and wait and pray that we don't have another flare.

I will keep you posted.

Kalee

Perfect Labs!!!

Just got the good news that all of Kya's labs perfect in Chicago!!! This means she had been off of medicine for 6 weeks and was still holding strong. We are so excited and waiting for directions on what we do from here. Just had to share the good news!!!!

Thank you for all your prayers.

Kalee

Hurry Up and Wait!

We made it back from Chicago. The doctor said Kya looked great! But we don't have any of the test results back yet, so no plan of action has been set. This is the worst part to have to hurry up and wait. These two weeks are a killer.

Kya's CMAS was a 43 which was up a point from last time. That is great! It means she is getting stronger or just maturing and able to do everything they ask. They don't really have a normal for her age and that is one of the things they are trying to set a standard on right now. That is a research project that they are currently doing. Because the standard score of 52 is for a normal 6 year old. We all know that a 3 year old can't do what a 6 year old can, so this makes it kind of hard to test things. They just compare her to where she was before and continue to monitor. Overall she seems to be getting stronger.

Kya's nailfolds looked great! They said they looked almost like a perfectly healthy normal person. You could just tell that they had healed and were filling back in, but no drop out. They said they looked great! so we are going to take that as a good sign. She didn't have any signs of activity on her eyelids, roof of her mouth, or anywhere else on her skin. That was great news. The doctor thought she looked like a perfect little porcelain doll. Which made her very happy! No tan and no skin activity.

Now, we wait. We wait for the results to make sure there isn't an activity simmering somewhere in her system. If the results are good we won't have to go to Chicago until February. Also, she will then give us the plan of action on blood draws and the port removal. If there is something simmering I may scream! LOL Not really. We will just develop another plan of action and start meds again. But I am praying that we will be in the clear!

Lake and I did run the 5k at the Chicago Half Marathon while we were there on behalf of CureJM. It was an inspiring run and benefited a great cause! Kya's hugs at the finish line is what it was all about. We are the legs for these kids struggling to survive. We are the ones who have to spread awareness so no more of these kids will go undiagnosed or have to suffer the devastating effects of this disease. We will continue to fight and raise funds until the cure is found! Lake ran his first 5k in 26:17 and finished 138 out of 1394 runners. He was 21st in his age group! I finished, I wasn't last, and I didnt have to ride the sag wagon. Those were my goals! I actually did it faster than I expected and finished in front of several hundred people!!!

Again we want to thank everyone for helping us through this journey. God you are totally amazing, powerful, have shown us how to believe and pray without ceasing!!! Thank you so much to those who have supported us! We have some very strong prayer warriors. Thank you so much! It is by His power that Kya is doing so well today! To our new CureJM family, you are fabulous!!! You give strength, support, share knowledge, and are always there. To our actual family, I don't know where to begin. You have given us endless support and help! I know that 14 hours in the back seat between to girls is a long way to travel Grandma Trish. But we love you so much and thank you! LaDenta your help in babysitting, chaffeuring, and cleaning is beyond wonderful! Jimmy, you have allowed us to do what we had to do to get her well! Words can't even start to express our gratitude. Robert Nall, you have helped fight the insurance company and have given graciously to CureJM on Kya's behalf. Thank You 1000 times over! To my blog followers thanks for hanging in there and following our rollercoaster journey (and my sparatic writings)!

Thanks again to everyone and I will post when we have the results!

Kalee Carpenter

Chicago Here We Come!!!

We are Chicago bound again tomorrow. Please pray for safe travel and a fabulous check up! Kya seems to be doing very good and getting stronger every day. She is definitely head strong! We actually will be attending a CureJM regional conference, touring the JM research lab, listening to the doctors talk about the latest research results, having dinner with the doctors, running a 5K, and then Kya will see the doctors. We have a very busy schedule packed into a very short trip.

Again please pray for Kya and continued healing. Also pray for Lake and I as we drive that we have safe travels. We will drive all the way back Monday night so that Kaysa can be at school on Tuesday. This will be a long drive and it won't start until after lunch.

Thank you for your prayers and support!

Kalee

Fundraiser for CureJM

A wonderful lady, LaCindra Carpenter (she is in no way kin to us), facebook messaged me and said that she found out about Kya in the push to win the Pepsi Refresh contest.

She sells Scentsy and has started a fundraiser for Kya to benefit CureJM. She is donating 100% of her profits to CureJM which will either be 25% or 30% depending on the dollar amount that is ordered.

She has the fundraiser set up on her website https://lacindra.scentsy.us/Home . The link is under "My Open Parties". Where it says JM Fundraiser just click on Buy from Party and start shopping! Everyone can shop, pay online, and it will be shipped right to you!!! She also has this facebook link that you can post on your wall for all your friends to see and order from also http://www.facebook.com/l/bbf9exl39J0-J_CZJuaMwkpp3Mw;LaCindra.Scentsy.US .

This will be open for 2 weeks (or maybe until the end of September).

I cant wait to see how great this does! Please look at this great product and help support CureJM!

Thanks again for your help with Kya in supporting CureJM!

Lake, Kalee, Kaysa, and Kya Carpenter

First Day of School for Kya

Today is Kya's first day of school!

We received her lab results yesterday and everything was perfectly normal. Even with being off the medicines they stayed level! So today she started Rainbow Lane. She will also stay for 4 hours at an in home daycare and have dance. What a busy day for a little girl who is use to staying at home with Grandma, sleeping in, and just enjoying life. Tomorrow she will stay with grandma and back to Rainbow Lane on Thursday morning.

I think school will be really good for her. However, she had a different opinion. She did not want to go to school, EVER! She tried the I am sick thing. When that didn't work she told me this was not a very good idea. I reassured her that it would be lots of fun and that Kaysa had went here for 3 years and loved it. She told me she was not Kaysa! So then I told her that her cousin Kaden still goes there. Kya replied, "But he isn't here today and I need someone!". So I let her get out of her carseat while we sat in line and we watched the other kids get out and go in. It was almost her turn so I told her to get back in the back seat and grab her backpack. She grabbed my cheeks with both of her little chubby hands and said, "I still don't think this is a very good idea. I just want you to understand this." Then she crawled in the back and put on her backpack. When the teacher opened the door she climbed out and went on her own little way. Don't you love reasoning with a 3 year old! This could be an interesting year.

Please continue to pray for Kya and complete healing in her body. Also that she will stay healthy while going to school and living as a normal kid. My biggest fear is that she catches something that triggers the disease again! I know that God is in control and that He will take care of her, but it is so hard to not worry. Thank you for all of your prayers and support!

Here are some pictures of our crazy morning!

Kya picked out her own outfit and got dressed and ready to go!

Then Kaysa came in dressed and ready for school. Kaysa, Kya, and Bubbles were all excited this morning!

Kya says "Cheese" for her daddy!

Mommy and Kya waiting in line for Rainbow Lane. Kya has kind of decided that she is not so sure about all of this! But she forces a smile anyway. She is my little trooper!

Summer is Over

Well it is official our summer is over! Kaysa started school today and Kya starts August 24th. I can't believe it! Where has the summer gone? If I really think about it I can probably figure it out. Between Softball, t-ball, basketball camp, and the musical I think it slipped right through our hands! Now if the heat and sunshine would go away we would be set. It has been extremely hot and the UV rays are a killer. Kya has been pretty much staying indoors until 6 or 7 in the evening to avoid both the heat and the UV. She is doing great! We go back Monday for our first blood draw with no medicines. I just keep praying that everything will stay normal!

We do have a new toy at our house. We are all having to share it. Which is really hard for me because I really love it! I am not a person of many hobbies (besides chasing my family) but I really do enjoy riding horses. We bought a new horse Saturday and she is a dream! She is so gentle and dead broke. She is really pretty and has a wonderful disposition. We bought her for the girls, but I am thinking she may become my horse and I will find them another! lol That would definitely be a fight. Even Lake enjoys riding her. So needless to say we have been riding in the evenings. It is fabulous therapy for Kya and we have a fun time as a family. Here are a few pics from last night!

Again thank you for all of the prayers and support. Please continue to pray for complete healing for Kya and that she stays well as she starts school. Thanks again for everything!

Kalee

Stopping Meds

We got the news today that all of Kya's labs are perfectly normal. A couple were a little low, but considered normal for her case and not a worry. So we get to stop all meds after Saturday!!! My birthday is Saturday and I couldn't ask for a sweeter gift. I am so excited I can hardly stand it! However, there is that pit of the stomach feeling of I hope everything stays normal and OK. But I know that God is in complete and total control of this situation and is in charge of it all!

Thank you so much for your prayers and faith. Kya has come so far so fast! We love you all and ask that you continue to pray for permanent healing and remission!

Thanks,

Kalee

Quick July Update

Kya has been doing great! She has been running, jumping, swimming (during non-sunny times), and just playing really hard. Her skin looks fabulous and she is going full speed. She sang a duet with her sister this last weekend and did a good job. You could actually understand her words. Monday we had a blood draw. Yuck! But she was a very big girl. No tears during the needle insertion or the draw. She even helped out! Did I forget to say that she screamed for 3 minutes leading up to the whole procedure. But then nothing not a single tear once they took the patch off and started cleaning it. It is purely psychological.

Happenings since my last post: Kya has learned to swim. I mean really swim with no floaties. Jumping off the side and doing flips off the ladder even. She scares me to death but wonderful therapy! We are scheduled to stop Cellcept August 1st. Which means we will be taking no immune system supressing medicines. We will have frequent blood draws to monitor levels. Kya is scheduled to start a private preschool in August and Kaysa will be in 2nd grade! My babies will both be in school. Kaysa got her roundoff back handspring at gymnastics! We are so proud. She is doing awesome. Kaysa and Lake are in the musical Bye Bye Birdie. They practice every night Monday through Friday for about 4 hours. It runs August 2-8 at the Red Carpet Community Theatre in Elk City. Dance will start back in August and Kya can't wait! Kaysa is wondering where her summer has gone! Besides that nothing much has been going on!

Thank you so much for the prayers and support. Please continue to pray for healing in Kya's body and for her to get her complete strength back. She is doing so much better, but there are still some issues that we are working through. This disease is very hard on the whole body and the drugs to fight it are even harder. There are side effects from both that we may have to deal with for a while. Again please continue to pray!

Thanks!

Kalee

Day number 545, but who is counting?!

Yesterday was day number 545 that Kya had to take medicine 3 times a day. But today there will be no night meds!!! She will take meds only twice a day first thing in the morning and after food. We are so excited! It has definitely been an emotional roller coaster and a long journey, but Kya is fighting a good fight. She is such an amazing 3 year old!

Last night we had our annual 4th of July get together with about 200 friends and family. The kids were doing fireworks, running around playing chase, and having a great time. Kya was in the middle of them all with her long sleeves, pants, and hat on. Besides that, she was just like them and never missed a beat! After the kids blew up everything they wanted to we sat back and watched the big fireworks show! As we sat with all of our family and friends watching fireworks I got a little teary eyed thinking about Kya. I just held her a little tighter and thought about the things she has battled over the last year and a half. She has become such a strong little fighter with such a carefree independence. She has knowledge beyond her years and accepts life as it is! Long sleeves, pants, and hat year round don't bother her. We were looking for her and she had led a group of kids to play with her under the fruit trees in the shade! She chose a table on the shady side of the barn to eat supper at and didn't sit with her firends in the sun. All of those decisions at 3 just amazes me!

Thank you so much for the many prayers! We know that God has brought her through this with such strength and courage. It is awesome to have such supporting friends and family! We love you all and greatly appreciate everything! Thanks again!

Kalee

Fun Update!

Kya is doing good. Her levels all were normal. The doctor said she looks great. Her strength and core muscles are getting stronger. She loves occupational therapy and is even getting better with the blood draws! We will go monthly for labs since they are tapering her and she only has another month left on immunosuppressants if everything goes as planned. They will monitor this in Oklahoma City. We are very excited and nervous.

Her pageant went well and she had a lot of fun! She was 2nd runner up, but she just shined on the stage. She did her own thing when modeling her evening gown and I can only imagine what her interview was like! She definitely had a strut going on during the party wear event.

Kaysa also did super. She nailed her song and she did fabulous in the party wear event! We were so proud of her. She won 1st runner up and most photogenic! Most of all she learned a lot and had a good time.

Kaysa has the end of her softball tournament this week and Kya will finish next Monday! I can't believe it is over. Where has the summer gone?

We survived the big 8 slumber party last week for Kaysa's birthday! It is hard to imagine she is 8. The girls all went swimming as soon as they got here. They were all going off the diving board and Kya sat back and watched for a while. The next thing I knew she was running and jumping off the diving board also! She had never done that before, but I was excited to see it! Kya hung in there with the big girls all evening. We finally made her go to bed at 1. She did not think that was fair, but it was for the best!

Thank you for the many prayers! We are so excited about her progress and her improvements. Please continue to pray as we taper her off the meds that she will not relapse into a flare! Thanks again for everything!

Kalee

Kya is going strong!

Kya is going strong! We had a little scare last week and took her to Children's and they ran a bunch of lab work. Everything came back perfect! She is going strong and has a t-ball game tonight. I hope and pray that everything continues to stay normal and she keeps up with her energy!!!

We spent last week at the Miss Oklahoma pageant and Kya really enjoyed it. I was amazed with how much attention she paid to it. She has been reenacting the talent ever since we got back. She has her first pageant this weekend and she is ready to be in it. (I am not sure her talent is ready or that they are ready for the twist she will put on the pageant! But she is 3 and having fun!)

Thank you for all of the prayers and support! We appreciate all you do for our family!

Kalee

1st T-Ball Game

Kya had her first t-ball game last night. She did it! She hit the ball and ran to first. She ended up running around all the bases and touching home without falling!!! Small things are really big to us. The game was at 7:45 so it was not scorching hot and the field was shaded! Hooray! She was not really fond of playing the field, but she stayed out there and ran to the ball everytime it was hit. She never beat the other kids, but she ran anyway!

Here are some pictures of her at the game. Thank you Aunt Tahna for being the photographer !

Kya is playing T-ball?!

Kya has her first T-ball game tonight. She is playing non-competitive Kiwanis t-ball with her cousin Kaden. It could be an interesting night! Her desire to do things swings on a whim. So if she wants to play tonight she will, but if it is not on her own agenda then she won't play. It drives me crazy, but that stubborn attitude is what has got her through her battles with this crazy disease. Oh and how lucky we get the 7:45 game tonight. I am so glad we won't have to be in the extremely blazing sun and heat!

Pageant update: Kya has practiced her talent a couple of times. Each time is a little different. There is no telling what she will do during the pageant. She keeps telling everyone she is singing the moon song and she is actually tap dancing to Bones. Could make for an interesting evening!

Kaysa has been practicing and she is singing Rocky Top, but that is nothing new for her so she isn't to uptight about it. Plus she has to leave for the Miss Oklahoma pageant this Saturday and won't be home until next Saturday. So the other pageant is not her concern right now. Swimming at the hotel at the Miss Oklahoma pageant is her biggest concern! You gotta love kids!

Health update: We tapered Kya's cellcept again on June 1st. I haven't noticed any changes and I hope I don't! We will go back to Oklahoma City to the doctor on June 23rd for a checkup and bloodwork. She also has another occupational therapy appointment that day.

CureJM update: Lake and I are running a 5K for CureJM in Chicago in September when we take Kya back to see Dr. P. CureJM is having an educational event and research update by Dr. Pachman on Saturday. We also get to tour Dr. P's research facilities. Then we will run on Sunday morning at 8:30.

This is a huge stretch for me because I hate to run and I have never ran! Lake will be fine because he enjoys running and has ran before. But I can do this to raise money for research that will help Kya. I can also do this because Kya can't run for herself! Every aching muscle in my body today I just think that Kya has felt like this and even worse for over the last year and a half.

So here is my request. We are putting our best foot forward to run for a cure for Kya. We ask that you help us in funding the cure for Kya. If you could please donate any amount to CureJM we would greatly appreciate it. We have set up a special online fundraising sight for this specific 5K and our mission to raise funds and awareness. Please go to www.firstgiving.com/carpenters4acure. It is a secure sight and no donation is to small or to large! You can also mail a check directly to CureJM just put Kya's name in the memo or you can go to www.curejm.com and donate online there. Again you can put a note that it is for Kya at the end of the donation form there is a spot to do that. Last but not least you can get the check made out to CureJM to Lake or I and we will send it in. We raise funds by running and by getting donations for running because CureJM is a supported Charity of the Chicago 5K. We are counting on you to help us reach our goal.

Please pray for us as we train for the 5K. Pray for healing in Kya's body and that she can continue to taper without a flare. Pray that we all do God's will in the treatment of the disease and the things we begin to allow Kya to do. Letting her out of her protective bubble is a very hard thing for me. Please pray that I get the peace that everything will be OK.

Thank you again for every prayer. Thank you for your support. I ask that you continue to support CureJM in any way possible. There are so many kids still suffering and battling daily with this disease. We have many unanswered questions that can be answered through this research and a new treatment or cure could be found! Thank you again!

Kalee

Kya is going to be in a Pageant?!

Here are the facts. Kya loves to be a princess. She loves to dress up and get all dolled up. She wants to have a princess crown like Kaysa. She wants a picture of her in a crown on the wall like Kaysa. She has no rash, she can walk, and she can dance! So she is going to be in her first pageant ever! We have to have the paper work in by tomorrow with a headshot. So we took her pictures Tuesday and here is a proof of our favorite. She is so funny. I wish she could do a stand up comedy routine. But, we are just going to hope that she does her dance when she is on stage all alone! Are we expecting to win? LOL Not really. We are just praying that she doesn't attack anyone during the group play interview session and that she doesn't lay down on stage because she is tired! This should be an interesting day. So if you would like some good entertainment Woodward Arts Theatre on June 19th at 7:00 p.m. will be the place for that!

By the way Kaysa is going to be in the older age group and that could be a whole other rodeo! I may need your prayers for sanity and patience!!!

Kya is ready for summer!

Kya is doing good. She seems to be holding her strength. We continue to try and avoid the lovely Oklahoma sun! School will be out for Kaysa in 2 days and Kya is ready for her to be home to play with. Dance recital is this weekend and then dance and pom will be over until next school year. Next Thursday Kya has her occupational therapy evaluation and Kaysa gets a tooth pulled. What a way to start the Summer off!

Kya had a speech therapy evaluation yesterday. She had fun "playing" with Deedra! I think she did good, but we don't have the results back yet.

Please continue to pray for healing and for her to keep safe from the Summer sun. Thank you for your prayers and support.

Kalee

Normal Labs!?

I talked to Chicago and all of Kya's labs are in the normal range. Her aldolase is 6.7 which is good and normal, but it is up 1.5 from April 2. I don't know why and neither do they, but they said it doesn't matter normal is normal. They are not the ones with a sick kid!!! That is a big jump in 3 weeks as far as I am concerned. So this is my concern. I know as they start to flare levels climb. I know this and they know this so why am I the only one concerned? I guess because I am the mommy!!! They said we would continue to taper and watch her levels. I guess that means we will see in June when we have an appointment at Childrens in OKC. (If I don't have them checked before then!)

We are in the process of getting ready for occupational therapy. Kya is still a little weak in the torso and has a sensory issue. The two combined don't work well. So they are going to see if they can help with the sensory issue to avoid problems from the weak muscles!

Besides those things, Kya is doing good! She has been going strong and is signed up to start Kiwanis T-ball in June!? Should be interesting. She has a dance recital May 22nd and is very excited about it! We got her dance pics in yesterday and they are adorable! I will try to post them when I get a chance.

Please continue to pray for healing in her body. Also, please pray for some nice not so sunny Oklahoma days this summer! We are already trying to avoid the sun. Thank you so much for the prayers and concern!

Kalee

Chicago and Back

We have been to Chicago and back! Kya is doing very well. The doctor was impressed with how she was doing. Her blood vessels looked good. Her muscle test was up 3 points since December! Her CMAS was a 42 out of 52. We are very excited! She has a few areas of muscle concern, but we are going to work on that. Now we are just waiting on the labs to come back. We will continue to taper her meds at the current rate and hopefully she can start preschool in the fall!!!

Thank you so much for your continuous prayers! It is nothing short of a miracle how well Kya is doing so quickly. I ask that you continue to pray for her and a complete healing in her body.

We also ask that if it is at all possible please make a donation to CureJM. They have helped us so much and they fund the doctor and research for Kya's disease. With all of the outside cries for donations from Haiti and everywhere else, CureJM is short on funding! Please help them continue their funding and support to help find a cure for this disease!

Thanks,

Kalee

A Good Day in Many Ways

It is a cloudy rainy day in Western Oklahoma. Kya is at home with Grandma Denny and Kaysa is at school. Lake and I are working at Elk City. We leave for Chicago this weekend so Kya can go see Dr. Pachman. It will be a 14 to 15 hour drive (probably in the rain)! Kaysa will have her first school basketball tournament and sing at Miss LHS and we will miss it. Did I mention we haven't started to pack and we have soccer and basketball games tonight and a music contest tomorrow night? So why is it such a great day?

3 reasons: One it is raining in Western Oklahoma! Two we just did a presentation over CureJM for the rotary club and it went great! Three Kya is doing great and I am excited to see what they say in Chicago!

Please pray for our family as we travel and are apart this weekend. Kaysa is staying home with Grandma Trish this trip. Continue to pray for healing and miracles in Kya's little body. Thank you to everyone who has prayed for her and to our CureJM family in helping us with our presentation! Thank you to our immediate family and friends for all of the great continuous help with the girls!

Kalee

CureJM Shirt Ideas for fundraising

For a while now I have wanted a neat CureJM shirt to raise awareness. I tried to find my creative side and this is what I came up with! Any comments or suggestions. I am just not sure which direction to go with this project. I can order some and sell them or take custom orders. The company I designed them through has all kinds of shirts, sweatshirts, products and anything you can imagine. What do you think? I need some feedback please!!!

Any ideas or comments would be appreciated!

Thanks,

Kalee