Out with the old and in with the New!

This is the last day of the year 2009 and the last day of the decade! What an amazing milestone. This has been a very interesting year for our family. On January 2, 2009, they did the biopsy on Kya's knee trying to figure out what was wrong with her. Never in a million years did we know what this year had in store for us!

It has definitely been a journey. A journey full of twists and turns, ups and downs, and many bumps and stops on the way! We have grown as a family, as christians in our faith, and as friends. We have learned who our true friends are and have found many new ones on the way! We have learned what the really important things are in life and the value of time. We know who we can call on and count on no matter what time day or night and no matter what the reason!

For those of you who have been the ones called on endlessly, Thank you so much! You will never understand how much that means to us. To those of you who have been our prayer warriors I cannot tell you Thank you enough times! When anyone asks what is so different about Kya or how is she getting better so quickly I just have to say, "You cannot even imagine how many people are praying for her!". To our parents and families we want to say, "Thank you, thank you, thank you!" You have been a sounding board, a frustration board, and a wonderful support system!

So as this year draws to an end, we just want to tell everyone "Thank you!" one last time this decade. Please remember to always cherish each moment you have. Make every minute you have be a special moment. Never take for granted each day and moment you are given with your loved ones. But most of all, remember that God does not give you more than you can handle. He has faith in us and He will take care of His children!

Thank you again!

Kalee

Some Labs are Back!

We got some of Kya's lab results back. Her aldolase was 5.7 which is in the normal range. It is higher than it was the week of Thanksgiving, but we will take anything normal. The UA we had to rerun in OKC came back perfect. All the other labs they had back were normal also. So where does that leave us? It leaves us stopping the plaquenil and watching her for a couple of weeks. If she looks like she is doing good we are suppose to taper the cellcept by .1 ml each month until we go back. We go back March 15th! Also, we have to increase her folic acid intake by 1 mg each day.

I am excited and very nervous about all the changes. I pray that she continues to stay strong and that she improves daily as we taper. I am sure that she is ready to be off of all the medicine also. Last week she did learn to swallow a pill! Her folic acid is now in pill form due to them not manufacturing the injectible kind right now. But she is a very big girl and takes it like a trooper!

Thank you so very much for all of the prayers and support! You have been an inspiration to us and we ask that you continue to support Kya and CureJM. They are making great strides in the research of this disease due to the funding from CureJM. We will be going to Austin in February for the convention and to meet with the doctors. If you would like to donate we are trying to raise at least $1,000 dollars before this time for CureJM. You can donate through the CureJM website, through Kya's firstgiving page and leave her a note, or you can send us a check made payable to CureJM and we will get it to them! Again, I want to thank you for your support!

Please continue to pray for Kya's healing. She has a journey still ahead of her. Also, there are some tests that we do not have back yet that we are waiting on for her. Thank you and God bless you in the coming year!

Kalee

Great Christmas News

We have traveled to Chicago and back avoiding all bad weather. Kya got a great check up and we are waiting on lab work to come back. Dr. P did say to stop her plaquenil so that is exciting and scary news! Her skin looks really good and her strength was good. Most of all her attitude was wonderful. She was very cooperative and loved "playing all the games" (doing the strength test). It was a fast, rushed trip but we made it. Now we will wait for good lab results and return to Chicago in March. What a wonderful Christmas present!

While we were gone some little elves came and painted the girls rooms and bathroom. When I returned the girls stayed a while at Grandma Denny's with daddy and I came home and redecorated the rooms. They were so excited last night they couldn't believe it! It was an exciting Christmas present for them and us.

Thank you for your prayers. Please continue to pray for Kya and healing in her body. We appreciate the support of our church family very much! It means a lot to all of us. Thank you also to the other prayers warriors we have out and about. Once again thank you for everything! Merry Christmas and may God bless you and your family!

Kalee

Real Quick Update

Just a quick update. Kya was a sheep in the Christmas program at church on Sunday night. She looked absolutely adorable. She quickly tired of sitting on her knees so she began to wiggle and squirm and poke and turn around and eveything else she wasn't suppose to do. In one way I was ready to hang her and in another I was just so glad that she could do it!

She is doing OK. We have a few concerns about her tummy hurting and her not eating very good for us. Also, she has been complaining about her knees and legs hurting. We do go see Dr. Pachman Monday and we are praying that many of our questions will be answered. I just don't want to see her hurting!

Please pray for safe travel and good weather. Also, continue to pray for Kya and a drastic healing in her body. Thank you so much for the support and prayers!

Kalee

Pink Cheeks and Icy Roads

Today is an all to familiar day. It reminds me of last December when this all started. Kya's cheeks have a pink tint to them. Kind of like a wind burn or chapped looking, but I know that is not what it is now. Last winter I was fooled, but this winter I am fully aware of the situation. However, I can't figure it out. Her levels are all normal, her muscle strength seems strong, and she seems to be in a good mood. She walks around singing Christmas songs and redecorating the tree if you aren't paying attention! She has fallen down some lately, but I think if she would slow down and quit running everywhere that wouldn't happen.

So where am I going with this? I don't know. I am just venting. I am so frustrated right now. She has been doing so good with no rash and strong muscles that this is very confusing to me. If her labs wouldn't have came back so good I wouldn't be as confused, but they were great. The best she has ever had! What is up with this? I don't know, but I know that God does so I am officially staying out of it and I know that God will take care of her!

As far as the icy roads part of the title goes. It is very slick outside this morning! I mean they shut down I-40 from Amarillo to Hinton, but we still drove to work. (Doesn't make much sense, but sometimes we don't always think things through.) We made it in one piece, it just took us a while! This reminds me so much of last winter and the ice storm. We were the only crazy people out in OKC taking Kya back and forth to the hospital. We stayed there for 5 days getting steroid pulses and having her port put in. (Not that we could have went home anyway.) It was crazy!

Hopefully it will thaw out by this evening. Right now it is really foggy, 27 degrees here at work, and continues to freeze. (It was 23 at home.) I really enjoy my office job on days like this. I feel sorry for the people who are working outside in this weather!

Thank you again for all of the prayers. It means so much to our family. Please continue to pray for Kya and healing in her body. Pray that the pesky pink cheeks will go away and that we will have some comfort and peace during this season! Also, please pray for Lake and I this Sunday as his adult choir and my children's choir present two musicals at church. Again, thank you for all the support and prayers!

Kalee

Kya is Doing Good!

After our scare of having a flare and going to see the doctor last Monday Kya is doing better. She seems to be stronger and more energetic. She is not sleeping in as long or resting as much. These are all good signs. She is even back to crawling up on her bed without using a bucket of toys! We got her blood results back yesterday and everything was in the normal range. Her aldolase was a 4. That is the lowest I think it has ever been! Her being sick just really pulled her down and it took a while for her to get back on her feet. Also, she was off the cellcept for a week and a half to get over her infection and that really affected her.

As for the rest of us, we are all ready for Christmas (almost)!!! We started putting up the tree last night, but Kaysa wouldn't decorate it without her daddy. So we have a lighted, undecorated, 10 foot Christmas tree sitting in our front window! Kya wanted to hang the stockings and wrap presents for Santa. I think she is a little confused about the whole Christmas situation! So we put out the collection of Santa Claus', set up the nativity set (Kya loves it!), finished putting out all the other indoor decorations, and let the tree until later!

Please pray for us as we will be traveling to Chicago the week of Christmas. Kya will go see Dr. Pachman again. We are praying that her levels are still holding strong and that we can begin to taper another medicine. This would be the best Christmas present any of us could get! Actually, Kaysa asked Santa for a Cure for Kya. If that isn't selfless I don't know what is! So please pray that Kaysa won't be disappointed and that Kya continues to be healed!

Thank you again for all of the prayers and concern! You are the greatest strength we have. We are so blessed to have such great friends and a wonderful support system! Thank you again!

Kalee

Kya is Better

Kya seems to be better now. She is no longer running a fever. It finally broke on Tuesday. She still has a really loose cough, but that is improving. Hopefully she will be able to start back on her cellcept tomorrow morning. Her cheeks are starting to look a little pink, but I can't tell if it is chapping or JDM rash. We are just praying that it is because of the great weather (ha ha!) we have been having.

Thank you for your prayers and concern. We have had many text messages and phone calls. You can't imagine how much they mean to us! Again please continue to pray for her JDM to go away! Thank you to our prayer warriors!

Kalee

Kya is sick!

Kya woke up Tuesday morning croaky and cranky. I took her to the doctor that afternoon and by the time we got there she was running a fever of 100.6. They said that she just had this virus that Lake and Kaysa had. They put her on antibiotics and I stopped her cellcept. At that time her lungs sounded clear, but she had lots of drainage.

We have been giving her tylenol every 4 hours since the doctors visit and she is still running a fever. I just took it ans it was 101.9 even on tylenol. She seems to be coughing a lot more also. She hasn't ate hardly anything in a couple of days.

Please pray for her. Also pray for Lake and I as this is a really hard time for us. And of course, Kaysa is staying with Grandma Trish! We appreciate the many prayers and support! Thank you for all you have done and please continue to be prayer warriors!

Kalee

Kya is doing very good! Last night I had to take her to kids choir with me at church because I had no one around to keep her. So she went and sat by Kaysa and sang with all of the other kids. She was very excited about this and did a great job. We are getting ready for our Christms program and it is so much fun! Anyway, she was so excited she was telling everyone she got to go to church! It just breaks my heart that she loves it so much, but we have to stay away. Please pray for continued healing and tapering of immunosupressants so she can get back into the real world. More importantly pray for all of the sickness to go away!

On another note. After church, I was feeding the girls quesadillas (get it Kaysadillas). Kya started pouting and said that she wanted "Kyadillas"! It was priceless. She is such a little comedian.

Thank you again for all of your prayers! Please continue to pray for Kya.

Kalee

Kya is doing great!

Kya is doing great! She has been running and playing like a normal 3 year old. She is growing up so fast and starting to act like her big sister. She loves to sing and dance. Yesterday she told her Grandma Denny that she need a friend to come over to play dress up with! I know that she gets lonely by herself, but really a friend over at 3?! I can't see any changes in her disease activity. I think she is getting stronger and that her abdomen is starting to even get a little stronger. She is definitely getting taller and thinner. Her steroid and toddler chubbiness is starting to slide off. She is starting to look like a little girl and not such a baby. But, she will always have those round little cheeks!

Some of you may ask if she is doing so great why isn't she out and about? Simple answer. GERMS!!! (and lots of them) She is still on 2 very strong immunosuppressants. She can't afford to be around anybody right now. We are being very careful to use extreme hygeine and hand washing. It is not worth getting her out and risking a set back at this point. Our family brings in enough and we don't need anymore!

Kaysa has the crud again! So her and Lake have been at the river place since Tuesday. It isn't strep and it isn't swine flu it is just the bad crud. I think her fever finally broke last night. But, she still sounds terrible! This is exactly when all of the stuff started last year and just snowballed so Lake and I are watching Kya very closely and trying to keep her well.

On November 3rd last year we took Kaysa in with the crud. The week before Thanksgiving she got Strep throat. The week after Thanksgiving Kya got strep throat. Then her rash began and they just thought it was part of the strep. It all just snowballed from there and that is how we got to January 9th with the official diagnosis of JDM. So of course it is kind of like the cycle trying to start all over again! But, we are going to fight it every step of the way and know that God has his protective hand over her!

Thank you to everyone for all of the continued prayers! She continues to need them daily. It feels so strange not going to a doctor everyweek or even every month with Kya. We are just sitting back and holding our breath until December when we go back to Chicago! I know that they will find good results and start tapering more medicine. God is healing her and Kaysa says she will be cured! What faith!!! Again, thank you very much for everything.

Kalee

Still Doing Good!

There is not a whole lot to report. I am doing good and nothing much seems to be changing. I don't get to go very many places with all the H1N1 going around right now. So, I spend a lot of time with my Grandmas and I am starting to get pretty rotten! But, I feel great! I can run and jump and play with the best of them.

Thank you for your prayers. Please continue to pray for me that my body will continue to heal and that they can taper more of my medicines in December. Thank you again for everything!

Kya Kay

I am 3 Today!

Today I am 3 years old! Last night I slept in my new bed for the first time. I even stayed in there all night because I am a big girl! (and because every time I hollared mom came running) I am so excited about my big girl room and all of my new things in it. I have spent a lot of time in my room playing and watching my movies since they redid it Saturday. I still just wish it was pink! Maybe, Santa will do that for me.

Thank you for your prayers. I am feeling much better and I am so glad I don't have to take yucky shots or treatments anymore! What a great start for my third year. I have even learned how to give myself my own medicine. Mommy just gives me the syringes and I do the rest by myself. (such a drastic change from her holding me tight while I kicked and screamed when we started) We have all grown a lot since January 7th.

It is hard to believe this time last year I was taking my 2 year pictures without a care in the world. We can never imagine where life will take us or how quickly it will take us there! I have had to grow up a lot this year and learn to be a big girl. (although, I have my moments)

Thank you again for your prayers and help. I love getting mail and the cards that you send me I love to keep! Please continue to pray that I get well. I still have to take lots of medicine and can't hang out with friends and play like all the other kids! I am praying that next year on my birthday I might could be off all my medicine!

I hope to see you around soon!

Kya Kay

Kya's 3rd Birthday Party

Well, the swine flu is gone and today was the day to party! We had a family birthday party for Kya's 3rd Birthday at the house today! It was small but fun. And since we were having this party today my best friend and I scrubbed my entire house yesterday to get rid of all the germs! We used 2 gallons of bleach and lots of lysol. Hopefully nothing survived our attack!

Kya got a big girl bed for her birthday. She also got several other fun things! She was very excited to see her family and to be back at her own house with her own things! Here are a few pictures from todays events!

Here is the cake that my mom made for Kya. It is awesome and all of the princesses were there!

Here is her cook outfit that she got for her birthday! Kya loves to cook!

She is a beautiful fairy princess!

She is very tired. She had a warm bath and is ready to go to bed!!!

Thank you so much for all of your prayers! Please continue to pray for healing in Kya and that we avoid the swine flu. She got her H1N1 vaccination Friday, but it still won't guarantee protection! We appreciate all of the prayers and support!

Kalee

Flu Update!

Kaysa is feeling better. She is no longer chilling, no headache, no bodyaches, no fever! She still has a slightly sore throat and a bad cough. But, her energy is back and she is acting much more lively! Lake gave her Tylenol at 5:00 p.m. and we are going to see if she can make it the next 24 hours without it and with no fever. Hopefully, we caught it quick enough. By God's grace we had the Tamiflu down her within 2-3 hours of the first sign of a symptom! They told us that would make a huge difference. Also, Lake (bless his heart) gave her Tylenol faithfully every 4 hours all night long and for 24 hours straight! He is such a great daddy!

Kya is currently showing no signs or symptoms!!! Please continue to pray that she stays very healthy and strong! Also, pray for continued healing in Kaysa and that Lake and I do not get this. We are suppose to have a very small Birthday Party for Kya Sunday afternoon! Please let everyone be well!!! Thank you for all your prayers!

Kalee

Swine Flu has found our house!

A quick update to ask for your prayers. Kaysa, our oldest, has swine flu. Kya is not showing any symptoms currently, but her and I are staying with mom and dad. Kaysa and Lake are at home trying to get well. Kaysa and Kya are both on Tamaflu and Lake and I have a prescription in case we start to get sick!

Please pray for healing in Kaysa and that Kya does not get it!!! Thank you so much for all of your prayers and continued support!

Kalee

Doing Good!

Kya had an appointment at Oklahoma City with Dr. O'Neill. She said she was doing very good. Kya was not real cooperative in doing the muscle testing, but every two year old has their day! She would do a trick for about 45 seconds and then say "I'm all done!". It is very frustrating trying to get a two year old to do something they don't want to do! However, Dr. O'Neill says that is just a two year old and don't worry about it. She was amazed at how busy and strong Kya was. She said she was getting tired just watching her and I totally understand that feeling.

We will go back to Chicago in December. Until then, we just wait. I hope we are waiting for nothing, but we are watching for everything. Any signs of rash, muscle loss, fatigue, illness. I don't like this game! We don't see a doctor or have any blood work again until December. Exciting and scary at the same time!

Strength wise Kya is doing good. Still a little weak in the abdomen, but getting stronger. However, her immune system is still very suppressed!!! She told us to be very careful getting her out and about. So, we are thinking about becoming hermits. Not really, but we are trying to be very careful. We are trying to avoid sick people, large crowds, enclosed areas with lots of people, and public places in general with Kya. No daycare, no nursery, nothing with other contact with kids. It is not much fun for her, but at least she has Bubbles!!! I am ready for this flu season to be gone and over!

Thank you so much for your many prayers! Kya is truly a miracle and w know that God is curing her as we speak! Please continue to pray for our family and that we can all stay healthy and strong. Thank you again for everything!

Kalee

We are Normal!!!

They called from Chicago yesterday and said that all of Kya's labs came back perfectly normal!!! Her aldolase was 5.1 right in the center and everything else was in the normal ranges also. We are so excited that she is responding so well!

So what does this mean? Many people have asked if she is in remission and the answer is NO. She is responding to medicine and is medically stabilized. She is no longer on infusions, steroids, or methotrexate. (yeah!) But, she is still on cellcept and plaquenil which are very strong immunosupressants. She also takes about 6 other meds and vitamins a day. She is doing well right now and right now the plan is to hold where we are until December. If she is still maintaining in December they plan to start tapering her cellcept. This tapering process will be slow and closely monitored. They will try to make sure that she does not have a flare as we taper. This is the hard part and the very carefully managed part. Too fast and she could flare which would make us have to start all over. If she gets sick, she could flare and we would have to start all over. Just a little stressful for mom and dad trying to decide how to keep life "normal" and be smart about exposing ourselves and Kya to all the risks. But, we know that God is going to take care of her and she is going to be just fine!

When will she be in remission? Who knows! She will not be considered "in remission" until she is off of all medications and all of her levels are normalized without medications. This could be soon after tapering or this could be never. Some kid do very well on medicines, but they just don't handle the tapering very well. She could get completely tapered off and pick up a bug and go into another flare. She could get completely tapered and this ugly disease never show its face again! Each child is different and it is about a 33% chance for any of the above to happen. We are praying that God will just cure her of this and we never have to worry about it again! That is what Kaysa says is going to happen and anyone who knows Kaysa knows that she has a tight connection with God!

Thank you so much for all of the prayers and support! It has been an amazing journey so far. I have made many new friends and have grown closer to people I never imagined I would. We have grown closer as a family, as christians, and as friends! I appreciate our prayer warriors and I beg you to continue to pray without ceasing! You are seeing a miracle in Kya's life. Thank you!

Kalee

A Week Without Steroids!

Kya is holding pretty steady right now. She had a busy weekend and is pretty wore out. But, as far as strength and rash I think she is doing pretty good. I don't see any signs of weakening, but I also don't see any signs of her getting any stronger. Except the fact that she has been without steroids for a week now!!!

Of course in the last week we have traveled 954 miles home from Chicago, got a new puppy, Kaysa pulled a tooth, stayed with Grandma Trish, went to dance, stayed with Grandma Denny, went to soccer, Stayed with Greta and Kenneddee, had cousins camp at the river place with my Graybill cousins, stayed the night with Kaden and Kaysa at Grandma Trish's, and celebrated Lake's 10th Anniversary as the music minister at the church. Nothing like packing a few things into a week. I told mom Saturday night about 6:30 that I was so tired and couldn't figure out why. She just looked at me and laughed. Then she reminded me that we had been to Chicago and back in the last week. We had been so busy since we had been home that I had totally forgotten.

Cousin's Camp was lots of fun! The kids enjoyed fishing, playing games, and getting dirty. The adults enjoyed sitting in the shade, enjoying the cool breeze, and remembering when. Each kid made a stepping stone again this year with their hand prints, name, and year. I told mom that in a few years their will be enough to make a neat patio out of them.

Yesterday, the church honored Lake for his 10 years of being the music minister there. They presented him with a personalized hymnal that many people had signed their favorite songs or left notes in. Then, last night they had a cake and ice cream fellowship for him and presented him with some cards and gifts. It was a very special day and we love our church family so much! They have been a huge support to us and there are many prayer warriors for Kya in our church family. Thank you so much for all you have done for our family and we look forward to the next 10 years!

Mom and LaDenta thank you for helping us take on Bubbles and getting her house broke. Keeping Kya is one thing, but keeping Bubbles is going the extra mile! We thank you so much, hopefully with Bubbles we can keep Kya strong and healthy through this winter.

Dad thank you for being there for me when I need sound logical advice. I know that I may not always listen, but I always hear you and remember what you say. I love you very much and I try to be as logical as you are. (although the whole house dog thing is hard to fit in my logic category!)

L.D. thank you for being you. You are the silent strength. Just a hug when you walk up says it all. I know that you have more than you can even think about on your plate and you still walk up with a smile and a hug! Thank you! I wish I had the strength to be that strong everyday. Thank you for making the attempts to drive all the way to Elk City to watch Kaysa play soccer just to be called back home. I know that you are going above and beyond the call of duty for everyone! Thank you for being the mortar that holds it all together! We pray for you daily.

Jimmy, thank you for everything. I can't express in words how much you have helped us. You have given us the opportunities to give Kya the best care possible. Whatever we or she has needed you have been there to provide or help us get. You told us there wasn't any place to far and I appreciate you helping us keep an open mind. You have always stayed so positive and checked on us no matter where we were or what we were doing. That means so much to know that you care. You also gave me the opportunity and experience I needed to prepare me for this even before we ever knew Kya was sick and I appreciate that. We never know why we are doing all that we do, but God does and later it all just falls into place. (Thank you for keeping me from moving to Arkansas!) Thank you for always being there for me my whole life and believing in me! I promise I will be there to take care of you.

Once again I just want to say Thank you to everyone around the world. Thank you for the prayers, the cards, the support, and most importantly the faith! Kya is going to beat this disease. We know it, God knows it, and we are going to prove it! She is doing well, holding strong and I know that she is wrapped in prayer. Thank you again for everything!

Kalee

GREAT REPORT!!

We saw Dr. Pachman yesterday and she gave us a really good report! She thought Kya was doing wonderful. The physical therapist actually put remarkable down for some of her muscle strength test results! Everyone was just so amazed that Kya was going as strong as she was and that she could do all that she was doing. Especially since we have tapered her off of the steroids. Now, we will see what her blood results look like. If they are all still normal she won't have to take anymore yucky methotrexate shots!!!! Then, we will hold and continue to take the medicines we are taking until we go back in December. If she is still doing well then she will start tapering her Cellcept.

We are so excited about the wonderful progress that Kya is making and we know that her prayer warriors are out there fighting for her! Thank you so much to those of you who have prayed for Kya. Her rapid response and improvement is pretty much a modern day miracle. There is no explanation for it besides prayer and God putting us in the right hands at the right time.

Also, Kya now has a new physical and emotional therapist in her medical team. Her name is Bubbles and she made the trip home with us from Chicago. She is a shichon who loves to spend time with Kya. She will help Kya with her therapy this winter when it is yucky outside and when she has to stay indoors so much from the sun. We will see how good she works, if nothing else she has provided about 830 miles of laughter and entertainment.

Bubbles was an absolute surprise to Kaysa and all she could do was hug her and go back and forth between her daddy and I saying "Thank you so much!" (She has been really wanting a house dog! Thanks alot Tobey!) She was so excited that I don't think she has hardly put the dog

down. She is all pumped up about it, but we will see how long that lasts!

I am not sure about the whole dog thing. I told Lake that I just got Kya potty trained and I don't really want to start over. However, if this is what will help Kya then I will give it a try.

Lake is the one who was all ready to get the puppy, but after last night he was wandering why! He thought that she needed to go to the bathroom so everytime we stopped we tried to take her when I took Kya, but all stops were unsuccessful. Oh by the way, did I tell you it was pouring rain. Then, last night she yelped for a long time in the crate when we were trying to go to bed. But, I must say she hasn't had any accidents yet.

Please continue to pray for Kya and her great improvements! Also, please pray for our whole family and the new therapist. Thank you again for all of the continued prayers and support that you have provided us!

Kalee

P.S. Yes I did know that yesterday was not the actual day of my dad's birthday. However, I wanted to tell him Happy Birthday and I didn't know if I would be where I could use my computer today! So, Happy Birthday Again Dad!!!

A Very Important Day

Today is

NATIONAL MYOSITIS AWARENESS DAY

(Please make someone aware of this disease today and let them know how to help us find a cure! Lives depend on it.)

and it is

Grandad Frank's Birthday!!!

(Happy Birthday Dad We Love You!)