How Time Flies When You are Having Fun!

So it has been a long while since I have posted anything! Kya has been doing great!!! I love to type that sentence. She has had an ear infection, sinus infection, and stomach bug since my last post. I know that doesn't sound very great to you, but her levels have remained normal through them all!!!! What a huge blessing and the best thing we could have happen.

She looks fabulous and is going 100 miles an hour. Christmas is always bittersweet at our house since Christmas Eve was the first trip to the Dermatologist with the horrible JM rash 2 years ago, but this one was a very good one. It has been the first Christmas since that day 2 years ago on no meds!!! (Can you tell I am excited?!)

God has truly blessed Kya and our family in so many great ways! I know that it is easy to get depressed and so wrapped up in the negative (especially when in the middle of treatments and your shild is sick), but when you step back and look at the big picture it is amazing. Our family and extended family has developed one of the closest bonds imaginable. My children are truly learning what is really important in life and valuing the little things. And most of all we have met some of the most amazing people through this journey and made life long friends!!!

So as I get ready for another new year, I am thankful for the good and the bad in my life. As I told Lake the other day (When he thought we were having a really really bad day), it takes the bad days to make us realize what a good day really is. A day of healthy kids. A day spent with the whole family all together. A day of fun inside out of the harm of UV rays. A day where we can just enjoy each other. A day where there aren't a whole lot of detours from your normal plans. The little things in a day that before this we took for granted! Even the rough days of traveling to infusions, doctors or hospitals be thankful that you can spend those days with your child and get to know them better. That he has given you a child and that he has special plans for them. That you are getting to spend that extra time with them to learn there favorite characters, movies, colors, snacks, and all the little things we don't always pay attention to!!! God truly is amazing each and every day!!!

Thank you to all the people that have helped us on this great journey! It is not over yet, but I look forward to the rest of it with high hopes! You have truly blessed our family and I hope we can help others! We will travel to Chicago in February and hopefully we will get to set a date to remove her port. However, we will take each day in stride and know that God is in charge!!!

Kalee

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!