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!)

Sunday in Chicago (Last day of Steroids?)

Today has been a beautiful day! Kya got up with the sun and so did we. She woke up bright eyed and raring to go. From our hotel room you can see Lincoln Park in all of its beauty. The most exciting part about it to Kya is the Lincoln Park Zoo! This is a beautiful, clean, and very fun place to go. Best of all it is free! You can come and go as you please. They have huge grassy areas for Kya to run and play in. She loves to feed and chase the sea gulls. They also have very neat African animals (giraffe, gazelle, ostrich, etc. all together), cat, monkey, and bear exhibits that Kya can spend hours at watching the animals. Here's a pic of the view!

So since we needed to stay near the hotel, away from crowds, and where we could push fluids we went to the zoo! (Again!) We spent about 3 1/2 hours enjoying the perfect weather and wonderful day. We even had a picnic on the lawn and chased sea gulls for a while. Kya really enjoyed herself and she even forgot the about the reason we came to Chicago for a while! Lake and I enjoyed the wonderful weather and just enjoyed watching Kya in all of her glory as she ran and played. I took a few pictures, but Kya kept telling me "I have enough pictures." and told me to put up my camera and play.

Later, we took a walk around town to see what all was around this area! Then, we came back to the hotel and it started to rain. Tonight we ordered supper in, had baths, packed some stuff back up, and now we are taking it easy and getting ready for bed. We have an early morning and a long day tomorrow!

Please continue to pray for Kya that she has another great day tomorrow. Pray that her test results come back good and that she gets great news! Your prayers and support have gotten us so far and I know that they will continue to heal her.

By the way Kya took her last scheduled day of steroids. Hopefully, Dr. Pachman will say that she is doing good and that she doesn't have to take them anymore.

Here are some of the pictures from our day at the zoo!

Once again thank you for the prayers! PLEASE CONTINUE TO PRAY FOR OUR FAMILY!

Kalee

Puppies 4 Sale

Kya wanted to put a picture of her puppies on here. She and Kaysa have 3 male, mini and toy australian shepherd puppies for sale. If you know anyone who is interested you can call Lake at (580) 303-0090.

Saturday Night in Chicago

We made the trip again! Kya did very good traveling and she is all settled in to her "Chicago Home". She is feeling pretty good and is just playing with her toys that we brought. We are waiting on some good Chicago style calzone to be delivered!

Tomorrow we will just hang out at the hotel and push fluids to make the blood draw easier on Monday. Then, Monday we plan on seeing the doctor and leaving as soon as she says we are released to go home! Hopefully, we won't have to stay an extra day to do any extra testing, but if we do, we will manage.

I ask that you please pray for Kya and that she has a great check up. Your prayers and support are greatly appreciated and needed. Thank you again for everything and we will keep you posted!

Kalee

Getting Ready 4 Chicago

Kya is having a good week. She seems to be staying pretty strong even though she is only getting 1 mg of steroids every other day. Dr. P's office called us back Monday and told us not to give her any more methotrexate. (Oops! It was a little late we gave her some on Sunday!) They said that was OK just don't give her anymore before we come to Chicago. We are very excited, but extremely nervous about all the tapering!

Please pray for our family as make the 14 hour trip to Chicago this weekend. Pray for good test results and continued healing in Kya's body. Also, please say a prayer for Henry Denning, he is a little boy who is 1 1/2 from Iowa who was just diagnosed with this disease last week. We know how hard it is to try to make the right decisions for your child and we want to remember his parents also.

Thank you so much for being prayer warriors for Kya! I know that it is your prayers pulling her through! Thank you for your support, understanding, and help!

Kalee

God is Great!!!

It is amazing how God works when you don't try to be in charge. It is so hard and it is just human nature to want things on your time and He gives them to you when you really need to hear it!

After my frustrated blog yesterday and being discouraged about not hearing about the lab results I headed home with Kya from dance. As I was driving and she had finally fell asleep after crying for 5 miles that she wanted to go home (which is where we were going)! I got a phone call from the doctors office. They had found out Kya's Aldolase level from the lab and called me with it. It was 5.2!!!! We are so excited. That means all of her levels were perfectly normal, which is great considering how we have changed her med for the infection and since we are tapering her steroids. Also, she hasn't had a methotrexate shot since August 15th and she has been off cellcept 14 of the 19 days before the bloodwork. God has truly done a miracle in her little body and we praise him for the blessings and healing he has done.

We are scheduled to start the cellcept and the methotrexate back today. However, in the back of my mind I am saying we have been off methotrexate this long and our levels are good do we really need to start it back? I hate that medicine the most. It makes Kya feel so bad and it totally changes her disposition for at least 24 to 36 hours. It just breaks my heart and of course it is a shot which everyone hates shots! Hopefully, not to much longer and we will be off of the bad stuff. We only are scheduled for another week of steroids at 1 ml and then 1 week of 1 ml every other day and then we will be done with them.

Kya has rested a whole lot this week. She has been sleeping in and taking good naps. I think she got tired last weekend and got kind of weak on us, but she is going strong now! I just cried yesterday when I got the results back and watched her go to dance and run and play. It is amazing how fast and hard it hit her and how she has recovered so strongly. She is a tough little girl and she acts like nothing is wrong with her! She has truly taught her dad and I a lesson in what is important in life.

Last night we had a party for Uncle Jimmy at their barn and Aunt Marilyn had out Thanksgiving and Christmas pictures. It was really hard to look at them at first, but then it made me think. At Thanksgiving we didn't have a clue that she even had anything wrong with her and there were no signs. Then, at Christmas to look at how awful she looked and to see her trying to do things that should have been easy. (Like open presents!) I was just amazed at how quickly your life can change and how lucky we are to have everyday. I keep reminding myself of this when I get so busy with everything that we do with our kids. I am just glad to be here another day with them doing whatever it is that is keeping us busy that day! (And with Kaysa and Kya there is always something!)

Speaking of busy days. Kaysa is now in Clover Buds. (Basically it is like pre4-H!) They started Tuesday and we have county fair starting today. Anyone who knows Kaysa knows where this is going. They told her about the fair and the classes that you could enter stuff in. Of course, Kaysa wanted to enter all of the classes! We didn't enter all of the classes, however last night (after the party at like 11:00 p.m.) we did put together a Garden Variety Basket (5 different types of vegetables she is growing in her garden), 2 straight horn yellow squash, a plate of cookies (that she made), a potholder (that she made), and the largest squash (don't think it will win, but it was large). Kya then thought that she needed a big squash, so we found another big squash and she entered one also. (Good thing we aren't very good gardeners or we wouldn't have 2 huge squash still growing in the garden!) Kaysa had made something out of nothing to enter at the cloverbud meeting. She is sure that she will win something!? We took all of the stuff to school this morning because it has to be at the fair in Taloga by 6:00 tonight and we have a soccer game in Elk City at 6:00! But, I wouldn't want it any other way. I love that my girls want to be involved with everything and that they like to be busy. It will keep them out of trouble when they are older! Kaysa, however, loves to be gone and busy. Kya wants to be home and busy with projects. It sometimes makes it a little difficult, but we manage!

If you see my mother in law I would like for you to tell her how special she is. She drives to Leedey several times a week to keep Kya so we don't have to get her up and out. She keeps her at our house when my mom can't watch her and she even does laundry and helps keep my house picked up! Not everyone would do this, but with her help we are able to both keep working full time.

To my mom, I don't know where to start. So I will just say thanks for everything! You mean the world to my family. I just pray that nothing ever happens to you, because you keep us all going in the right direction. I thank God for you each day and I know that you will have a huge mansion in heaven that won't have screaming Grandkids in it! Thank you for keeping my girls so much. You have made it possible for Lake and I to be involved in everything we do without worrying about if our kids are OK or not. You and dad have set the example for the kind of parents we want to be!

I just want to thank everyone again for being prayer warriors! You mean so much to our family! I know that there are many of you who have prayed without ceasing for Kya and I know that is what has got her this far. God knows who you are and He will truly bless you! Thank you also for the support from our family and friends! To anyone who has helped out with juggling Kaysa around and helped us get her from place to place thank you also! As Luke 22: 28 says "You are those who have stood by me in my trials."

Please continue to pray for Kya and her healing! Her journey is not over and she still has a long road ahead of her, but we are headed in the right direction. Also, please pray for safe travel as we go to Chicago at the end of next week. Thank you again for praying and remember that you also are in our prayers!

Kalee

Kya is doing OK. I have been kind of disappointed in her strength this weekend. She seems to be a little weak in her arms and her ability to hold her bladder. We had labs drawn last Friday and we have everything back normal, but they didn't run her aldolase. We should have it back Friday! (I am very frustrated about that. Not like it isn't the most important one!) She did finish her antibiotics this morning and she will start back on her cellcept and methotrexate today. Hopefully, we finally have this infection beat!

Kya did take her flu shot yesterday and she was a very big girl. (After the ear piercing final plea scream!) Actually, we all took our flu shots yesterday and have the sore spots to prove it. I have just prayed that Kya and Kaysa will stay strong and healthy so we don't have to battle anymore infections or illnesses!

On a whole different note. Uncle Jimmy and Uncle Duane's racehorse, Inseperable, won the All American Derby! (It was worth $624,784!) We are very excited about the win for Inseperable. Now he will run in California in the Champion of Champions on December 12th! (It is worth $750,000!) He will be running against Uncle Jimmy and Uncle Duane's other horse, Separate Bet, who is his half brother! We will be cheering them both on! Kya loves to watch the horse races and she was definitely cheering this time!

Please continue to pray for Kya that she will continue to get stronger. Also, please pray for our trip to Chicago at the end of next week. I know that these trips are hard on her, but we also know that she is in the hands of the best doctors around! Thank you so much for your continued prayers and support!

Kalee

Another Infection

Well, we took Kya back to see Dr. Featherston yesterday. Her sinus infection has came back. She was on a 10 day round of antibiotics and she had been off them 5 days. They did a CBC and her white cells aren't even elevated. Which I thought was a good thing that means the disease is under control and it is not going rampid in her body. However, when you have an infection and they aren't even elevating enough to fight it off it is not a good thing. So here is the scoop. She will be on Zithromax for 7 days with no cellcept or Methotrexate for one more week. Then she will be off antibiotics for 5 days but back on the cellcept and Methotrexate. Then she will have another 7 days of Zithromax and be on the cellcept and Methotrexate. The whole time we are still tapering her steroids! Are you confused yet? I am getting there. I go into all of this just to explain how tedious this whole disease and medicine situation is.

Many people have asked how Kya is doing and I say good. Which she is doing much better and she has made huge steps in the right direction and we even feel like we are on the downhill climb. However, you have to keep in mind that one little runny nose for someone else can become a huge sinus infection for her and really change the course and direction of her disease. She is still on her daily meds, totalling 9 a day. We go to Childrens on Friday to have a blood draw and see where her levels are at since we have stopped the infusions and lowered her steroids.

Her cheeks are a little rashy looking, but nothing else is showing signs. She is still pretty strong and her knees, elbows, and hands look clear. Please pray for Kya that this infection doesn't send her into another flare. We know that satan always attacks when things are going good and Lake has had a good week in revival. So we know that satan is just trying to get us down, but we know that with everyone praying for her that we will have victory over him!

Thank you again for all of your prayers and support!

Kalee

Kya has had a pretty good week. I would like to say that I think she is officially potty trained again! I am not sure who is more excited her or me, but it is a good thing. She still has signs of a sinus infection when she sneezes, but besides that she acts just fine. She spent last night with her Papa and Grandma Denny for the first time! Her muscles seem to be staying strong and her vocabulary and speech is definitly growing. She loves her puppies and horses. Saturday she even helped scoop poop out of the horse trailer and she thought she was big stuff! (Kaysa didn't want to have anything to do with it!)

Please continue to pray for healing in her body and that she continues to remain strong as the continue to taper her steroids! We are excited and nervous about the tapering, but we know that GOD is in control.

We go back Friday to have a blood draw to see where her levels are at right now. I am very anxious to see the results. I only wish it wasn't over a long weekend!

Thank you again to everyone who has prayed and supported us through this journey. Lake is in revival again this week and it is just a reminder of how many people are praying for her! We know that God has special plans for her and for our family and we are excited to see what those plans are! Again please just continue to pray and she will be healed!

Kalee

Just a Little Update

I don't even know how to start this blog. Kya's strength is staying pretty strong. She has been running, playing, wrestling, and just being a normal kid. But, she still has her nasty cold/sinus infection. She is still on antibiotics which means she is not on her cellcept or methotrexate. Her cheeks kind of look a little light pink rashy, but not bad. She has developed a yucky really loose sounding cough, but I think it is just from drainage. If you were to be around her you would think nothing was wrong at all unless you heard her cough or saw her runny nose! So, I really don't know how to say she is doing besides she is holding her own.

This weekend the girls and I stayed at home and did nothing on Saturday. It was so nice! Lake went to Clovis, NM to pick up his horse. Saturday night Brandon came up to see us and Grandma Trish and Grandad Frank came over for supper and to play Wii! Then Sunday Aunt Twylia and Aunt Sheila came to Great Grandma Reta's house and we went out there until nap time. Sunday night we had Summerfest (church singing and ice cream social) in the park and we had fun playing with all of the kids and the music was great!

This morning we were pretty tired, but we all got up and started another great week! Lake and I were talking last night about how happy we were to see Kya running and playing like she did last night. You just realize the little things are what count and you pay close attention to them. I do want to say "Thank You!" to Taylor and Abby Welty who played with and chased Kya around all night you were so much help to us!

Once again a special "Thank You!" to all of our prayer warriors. Please continue to pray for healing in Kya's body and with all of our allergies! We appreciate everything that each of you do for us! Thank You Brandon for all of your help with the girls and with the sound system. You all mean very much to us and we appreciate everything!

FYI: Kaysa and Lake will be singing in Vici this Saturday Night at the Great Western Opry. It will be a fun night of entertainment if you want to come out and enjoy a great band and some wonderful country music!

Kalee

Just A Little Infection

Well, Kya is doing OK this week. She got a sinus infection Sunday and they had to put her on Antibiotics on Monday. Since she is trying to fight this infection she had to stop her cellcept and Methotrexate while on the antibiotics for 10 days. Unfortunately, we had just given her the methotrexate injection Saturday so it had really pulled down her immune system. She seems to be doing pretty good today. Her nose is still snotty and running, (You have to love Oklahoma wind.) but it is not yellow anymore. We are praying for a speedy recovery and no setbacks.

Other than that Kya and Kaysa have started dance this week and Kaysa is trying to complete a full week of school. We have had great rain this week and the grass is pretty and green. The new puppies opened up their eyes yesterday and the girls are really ready to start holding and playing with them. Kya has decided she wants to be a "big girl" and wear panties. We are still working on it, but she has done pretty good the last few days.

Again I want to thank everyone who has been praying for us. We know that she will be healed in God's time. I ask that you continue to pray for healing of the infections and the it does not cause a setback. Thank you again for you support and prayers. Also, thank you to all of those who have taken some of Kya's squash. She is definitely a squash growing girl! Thanks again!

Kalee

God at Work

This is a hard blog to even start. The first thing that I should say is "Thank You Lord!". Kya received a very good report from Dr. ONeill Monday morning. Thank you to everyone who has been praying for her! We know that it is through your prayers and God's guidance for the doctors that she is where she is at today! We can't tell you how much you mean to us!

Monday morning started early. Kya had to be at the hospital at 8:45 a.m. We weren't sure about what they were going to do so we put a lidoderm patch on her to numb her port and she immediately changed her disposition. I tried to tell her that she wasn't getting an infusion, but she didn't believe me. When we got to the hospital Kim evaluated Kya's muscle strength and she did very good. She still lacks the lumbar muscles she needs and is a little weak in the arms, but very strong in her legs. Kya was actually able to hold each leg up the whole time they were wanting her to. (I think it is from all of the time she has spent in the pool and at the waterpark this summer.) Then, Dr. Chen came by with Dr. Fair, who Kya was not very fond of, (You would think they would learn to quit wearing the white coat!) and they spent some time talking to her and looking her over just for their own learning. She was OK with Dr. Chen, but she hid in the corner from the "white coat doctor". Finally, Dr. ONeill came in and Kya was so glad to see her she ran and gave her a hug. She was impressed at how well Kya was doing. She has no rash on knees, elbows, fingers, or cheeks. Her nailfold capillaries looked "very good". The only thing is her eyes still have a slight heliotrope look when she gets tired. But, all of her labs have came back normal for quite a while now and she is well within all of the normal ranges and seems to be doing very good.

With all of that said, Dr. O'Neill decided that we would quit the steroid infusions and thought that we should start tapering her daily oral steroids. This makes me a little nervous, but they are the professionals and I know they will try to do what is best for her. So we are going to give her 2 mg of Prednisone daily for 2 weeks, then 1 mg of prednisone daily for 2 weeks, then 1 mg onf prednisone every other day for 1 week. We will go back in 4 weeks and have her blood drawn to run lab work. Then 2 weeks later we will go to Chicago to see Dr. P and then 3 weeks later we will go back to OKC to see Dr. O'Neill. We are very nervous and excited, but I know that things can change with the drop of a hat. But, right now she looks like she is on a very good road!

Besides the doctor appointments we had a mini vacation before school started today. We went to Oklahoma City on Sunday afternoon. We took the girls (and Lake) to Incredible Pizza and they had a ball. Once we got back down to bricktown we took a carriage ride and they even let Kaysa drive the carriage. Of course first thing Monday morning we had to go to the hospital. Then, after seeing the doctor we took Kya to try to get her glasses fixed again. After getting her glasses adjusted to where they would stay up on her nose for a while we went to get our new stuff for dance. Kaysa and Kya will start Tap, Jazz and Ballet again next week. While we were getting our dance shoes and new leotards daddy went to Lifeway to pick out Christmas music. (I can't believe we are even thinking of Christmas yet!) Then we went and ate at Chili's because that is where Kya wanted to go! After lunch we went back to the hotel for some swimming! After a couple of hours in the pool we went to the room for a couple hour nap! Then, we decided to go to the mall to pick up a couple of things and go eat at Cheesecake Factory! We love their chicken picatta and dessert! Then, we went to the red pin in bricktown and went bowling. The girls had a ball! Sadly to say Kaysa won! She beat us all. (I got last as usual!) It stormed that night and Kya did not like the thunder echoing off the buildings downtown!

Yesterday, Lake and the girls got up and went swimming again while I got stuff ready to leave. Then, we went to Spaghetti Warehouse for lunch. My girls really like to go there and eat in the train car they have inside! After lunch, we had to go get some las minute back to school necessities. Of course, you can't leave town without a mani & pedi at the "bear chair place". (Celeste Spa at Quail Springs Mall ask for Liliann she is the best!)

Then, we headed home so we could get in bed by bedtime since school started today. When we got home Kaysa found that someone or something had gotten in her dog pen and gotten out one of her puppies. We found it laying in the middle of the yard dead. It was a sad time at our house. (We still can't figure out exactly what happened. The puppies are just 7 days old and their eyes are still shut and they can't even get out of their house.) After the trauma Kaysa went inside to her room to be sad. Then she came out yelling that she had pulled a tooth. We decided we need to take a walk and she wanted to ride her bike before she had to go to bed. So we walkd a little over 1 mile and it was very hot! Kaysa was ready to go in and take a bath!

This morning Kaysa watched the sun rise! She was so excited about school. Kya on the other had, was still asleep when we took Kaysa to school. She even took her medicine with her eyes closed!

Thank you again to everyone who prays for us, has supported us, and who follows my crazy blog! It means so much to our family to know that we have friends like you guys out there. Lake and I had an emotional time Monday after the doctors visit. You just don't ever know when something like this is going to hit your family and then to hit a young child it is so hard on you as a parent. Then, the prayers and cards that have came in from everywhere were just amazing!

It was 8 months on Friday since they told us that she had this disease and that there was not a cure. But, what they didn't know was the prayer system we had and the faith that God will cure her. We know that she has had great medical attention and that we have taken her to the best from the start, but even they are amazed and we know that only God can do what has been done in her! In 2 months she will be 3 and I just think back that she had only been 2 for 2 months wehn she was diagnosed. It has been a crazy 8 months, but I have learned more in these past months than ever before in my life. I have learned the importance of great health insurance. I have learned the importance of having great bosses and a "work family". The importance of family and close friends. The importance of cherishing every moment with those that you love! The importance of getting your priorities straight. The importance of a church family and church families! (All of the churches that Lake has been to for revival or who have taken us in and sent many cards and prayer grams!) I have been reminded of the true power of prayer! The importance of a wonderful, supportive, helpful spouse. But, most importantly I have learned the importance of a continued faith in God! Even when I wanted to say, "Why her? Why us? Why this?" He would say "Why Not?" She will have a testimony. I won't give you more than you can handle and I know that you 2 can handle this together. It will make you stronger "God, who shows you his kindness and who has called you through Christ Jesus to his eternal glory, will restore you, strengthen you, make you strong, and support you as you suffer for a little while. (I Peter 5.-10)" He has shown me a closer walk as a christian and I know that He has awesome things planned for our family through this!

Thank you once again to our pray warriors! Thank you once again to our wonderful family and friends! Most of all "Praise the Lord"!

Kalee

Kya is still doing pretty good. She was very cranky this morning and didn't want anyone but mommy. (and she even prefered if mommy would leave her alone) She kept saying her tummy was hurting, but I think she was just tired. I gave her the morning medicines and hoped that the zantac would help if her tummy did hurt. I took her to Grandma Trish's house and she didn't even want to stay there. She wanted to go get Kaden and go back to her house with mommy. (That makes it really hard to go to work!) But, she must be better because I haven't gotten any phone calls from Grandma Trish.

For a quick run down of the last week. Friday was my birthday so Kya and Kaysa stayed with Grandma Trish while we went out to eat and went bowling with friends. Then, Saturday we went to an athletic fundraiser and Uncle Jimmy bought Kaysa an electric scooter. (Which she has ridden everyday including 1 time through the house!) Sunday morning we all went to Sunday School!!! We were so excited. I missed my class so much and just being able to go learn and fellowship means so much. Kya was excited to be in her new class and had full attention. She did pretty good during church, but got a little restless after the hour was up. She will get better, but it will take some time. We went to the corner and ate with the family and then we came home and all took a nice long nap. Then after evening church we walked 2 1/2 miles, ate pizza and had a family movie night! (Spirit was the feature movie of the week.) Monday night Kaysa had gymnastics. She got her back handspring by herself on the floor! (She was even doing so good she got to start working roundoff back handsprings!) When we got home from gymnastics we walked another 2 1/2 miles. (Kya enjoys going for walks in the evening.) Tuesday night Kaysa and Kya went to Marci's birthday party at the waterpark in Woodward! (They had a ball! Thank you Kimbre for watching Kya while I went to the meeting!) Lake had a bank training session at Woodward at the same time and I was able to go for a while during the party. Then, Kenzee came over to stay the night and the girls had a blast. Wednesday Kaysa and Kya stayed with Grandma Dennie. They played at the house, did laundry, cleaned their rooms, and even fixed a candle lit dinner for Lake and I. Unfortunately, I had another training session that night, but I ate when I got home. (It was the best sandwich ever!) They were both so proud of themselves for being such big girls! Then, after supper they put on a show for Lake and I and we had entertainment until bedtime. That pretty much catches us up to today.

As you can tell, Kya is doing much better. We are staying very busy and trying to keep her active, without over doing it. We really wanted to go to Ruidoso with Uncle Jimmy today, but it is just not a smart decision to go that far with Kya yet and expose her that much! Also, she has a doctors appointment in OKC early Monday morning so we are planning on going up on Sunday afternoon and spending some time with the girls before school starts. We may go bowling, watch a movie, and hang out at the pool.

Again thank you so much for your prayers! We feel like we are on a steady track to being better right now. But, with this roller coaster of a disease we never know which way we will turn next. Please continue to pray that Kya will continue to get stronger each day. She is still having trouble with her bladder control. If she could get this back we would all be much happier! (It is very frustrating to her!) Thank you again for all of your support! We have a great network of friends, family, and acquaintances. It is amazing to think of how many are praying for her and it will be nothing short of a miracle when she is healed! I know that God can and will heal her and that He has great plans in store for her! Thank you again for everything!

Kalee

Infusions Over?!

We got great news this morning. Kya's aldolase was at 5.5 on Monday! So they are stopping the steroid infusions and we are going to see how she does. We are so excited, scared, relieved, and anything else you can imagine!!! I know that our doctors know what they are doing and I have faith that God is healing her, but the emotions that are in the pit of my stomach need to know what my mind does!

We will go back to see Dr. ONeill on August 10th. She will check her out and they will check her levels to see how well she is doing! As long as she is still doing good they won't do another infusion. (However, if for some reason they think she needs one they will do it that day.) Then we will go to Chicago and see Dr. Pachman on September 21st!

Once again, I can't say how excited we are! I truly believe that we have an excellent team of doctors working with Kya. Dr. O'Neill has been great from the start and having Dr. Pachman to consult when things got a little tough has been fabulous! They have worked so well together and I have not had to mediate between them. It would be great if all doctors would work that well together for the best interest of their patients. Also, I can't forget Dr. Jarvis, he was there on call in the middle of the night when Kya got so sick the week before Easter. He even gave me his cell phone number in case she got worse so I wouldn't have to go through the hospital paging him!

Thank you to all of you who have prayed endlessly! Many of you have sent cards and that means so much! We ask that you continue to pray endlessly that Kya will be healed! Thank you so much for all of your support!

Thanks Again!

Kalee

Another Infusion Over

Kya is doing very good. She had another infusion yesterday and she did very well. She didn't get sick at all and she seemed to still be pretty strong before the infusion. I am praying that her levels will all be well in the normal range and that they decide that she doesn't need any more. But, I want what is best for her so if she needs more we will take more! She is so good about taking her daily meds that I shouldn't gripe about the infusion battle every now and then.

Today she is staying with Grandma Trish and Kaysa. She was very excited last night about helping to paint a cabinet today. I am not sure this is a good project, but grandma can handle it!

Also, Kya is very excited to get to start going to Sunday School this Sunday. She will be promoted out of the nursery and into Grandma Trish's Sunday School class. So, we decided that mom will make sure no one is there sick and then call me so I can bring Kya to Sunday School. That way she is getting to go while still being cautious!

Please continue to pray for Kya that her levels will remain level and that her disease is going into remission. We are praying that we will be able to stop the infusions and that she will slowly begin to have tapering of her medicines! Thank you again for your many prayers and support!

Kalee

Change in Infusion Dates

They called from OKC today and I have to go Monday to get my infusion instead of Tuesday. So please pray for me and for Sabrina. (she is filling in for Mavia and I yell at her a lot while she is accessing and pulling my blood!) Grandma Trish, mommy, and Kaysa are going to go with me to get my infusion this time. I pray that my blood results all come back good so this might could be my last infusion! (But, I am not going to hold my breath.) God is in control and I will be done when He decides it is time.

On a lighter note: I have had a good week. I got to see aunt Twylia and Great-Grandma Reta on Wednesday night and Kaden came to Grandma Trish's to stay the night with me. Then aunt Twylia came back to play with me on Thursday and I really enjoyed that. I have spent the last 2 days with Grandma Trish playing with Kaden and Kaysa! Late last night (after a very long late nap) I even got to go to the river for a little while and play on the swings and in the sand. I think tomorrow we might go to the new water park at Woodward late in the evening. We will just see how the day goes! Also, I am adjusting very well to my new glasses.

Thank you again for everything and please continue to pray for me!

Kya Kay

I Can See Clearly Now!

I got my new glasses today! I really like them and I can see better!

Here is what I look like now.

Now Kaysa and I both have glasses!

I have had a good day today. I got a good nights sleep and I have taken a good nap. I should be all rested up! Kaden is coming to play with me and I get to stay with Grandma Trish! I might even get to see Aunt Twylia. What more could a girl ask for?

How about a night with Jennie Finch! I got all of the USA World Softball Teams autographs and I got to meet Jennie Finch! She told me I made her want to go home and have a little girl!

Here is a picture of Kaysa, Daddy and I with Jennie Finch!

Please continue to pray for me and for my friend Gary! (Actually for all the kids with JDM!) He is getting better, but he is still on a feeding tube. I know that you guys have special prayers and that with everyone praying for us we will get better! I will see you soon! Thank you for all your prayers and cards. (They make me feel very special.)

Thanks!

Kya Kay

Lessons Learned

Kya is doing pretty good. She has enjoyed Kaysa being home and playing with her everyday! She seems to be staying pretty strong and she looks pretty good. She may have a light pink tone, but when it is 100+ degrees everyday until sundown that isn't a surprise. The sun has definitely been our enemy this summer! We have tried long naps during the day so we can play late in the evening into the night outside and when we have to be out we wear long sleeves, pants, and her sunhat! Along with 85 to 100 sunblock! But, Kya is great about getting all of her gear on and keeping it on.

Lately she has really started to develop into her own little person. She is kind of starting to leave the baby/toddler stage and go to the toddler/big girl stage! (This is a very scary thought.) Kaysa is her mentor and whatever she does Kya is bound to do. This is not always a good thing! In the last week we have learned what not to do and that Kaysa is not always a good influence. Lessons learned last week:

1. Don't play basketball on the asphalt with no shoes! (You will rip off a toe nail! Ouch!)

2. Don't eat frozen chocolate chips! (Unless you are ready to lose a tooth!)

3. Don't paint your feet with nail polish once you have lost your toe nail! (Yes I mean the skin!)

4. Don't fingerpaint on mom's wooden dining room table in new pajamas!

5. Don't spread the fingerpaint through 3 rooms of the house trying to clean up your mess!

6. Don't tell your little sister it is makeup and use nail polish over her entire body!(Once again skin from eyebrows, nose, arms, legs, back, bottoms of feet, you name it!)

7. Don't jump from the 3rd step of the ladder onto your bottom bunk bed! (Wooden headboards make huge bruises and knots!)

8. Nail polish does not easily come off of skin and it really is hard to get out of eyebrows!

9. Don't throw water balloons at people much bigger than you it hurts when they throw back!

10. Don't wear flip flops or go barefooted when you are missing a toe nail!

These are just a few lessons learned at our house last week! I guess kids just have to be kids and learn on their own, but some weeks it feels like crazy chaos! I was very upset at first when all of this happened, but then I thought about it. I am so glad that I have 2 girls that are able to get up and wreak havoc! I am so excited to see Kya up and playing and trying to do everything she shouldn't do that it is hard to be mad very long! And I know that Kaysa knows better. Then I think about everything that she has had to deal with also and she is just excited to have Kya up and playing with her and trying to be just like her that she doesn't think before she does things! She is just trying to entertain Kya and keep her happy and active! I did throw away all of the nail polish and makeup. The finger paints have been banned to outside and Kya is not allowed on the bunk bed ladder. Maybe this week will go a little better! (If not you may have to come visit me in Fort Supply!)

On a positive note, Kaysa got her back handspring by herself on the floor at Gymnastics! This is a big accomplishment and we are very proud of her. She really wants to go to team, but we told her coach we are going to wait until Kya's disease is a little more under control and we aren't traveling as much with her!

Kya can't wait to get back to dance. She would love to take gymnastics, but that is not an option! She is also mad because we aren't suppose to let her on the trampoline, Dr's orders! Overall though she is doing great considering the disease and everything it can do!

I also learned a lesson this last week. My friends took their little boy Gary, who is 2 and has JDM also, to Chicago to see Dr. P for the first time on Monday. By reading their comments I think they were a little disappointed with what they found out. Also, there was another parent who took their child to Chicago to Dr. P and they were disappointed also. However, that dad made the comment he went there looking for a miracle and they didn't find one. Basically, they were checked out just like we were and told that really there wasn't much else that she could do. That they were being treated properly, she didn't see anything wrong with their care, and that she would be a consultant for their treating physician if something came up. She also warned them to take care of themselves! Both families were disappointed with that answer and offended by her comment to take care of themselves. (which I understand she told me that also and I thought I know I have paked on the pounds you don't have to remind me!) But, it made me think really hard why I wasn't upset with my Chicago trips. I realized it was because they were looking for a miracle and I was looking for reassurance! I wanted her to say you are in great hands in Oklahoma and you are doing everything you can! I wanted her to say I know your child, I know her case, and when you need me I will be here for you! I wanted to have faith and confidence in the decisions we had already made and I got that! She only had to make a few tweaks and things were great!

I realized that we are that way with God sometimes! We get so disappointed because we are looking for a miracle instead of listening to him say YOU are doing the best YOU can do. I know your name, I know your case, and I am here to help when YOU decide YOU need me! He is the only cure! He is the only Miracle! We can look for everything here on earth and never find what we are looking for or missing! I hope and pray that everyone looking for a miracle anywhere else will realize that HE will provide it if we have faith! Kaysa has prayed from the start that Kya will be the first kid "cured" and she truly believes with all of her heart that GOD will answer her prayers! We as adults need to be more trusting and believing in our prayers and turn it all over to HIM!

Please continue to pray for us! (All of us!) Pray that Kya will adjust well to her new glasses that she should get this week. Pray for continued healing in her body, that it will adjust to the tapering of the meds, and that her levels will stay down without the IV Infusions. Please, continue to pray for the doctors and researchers that they find a cure for this disease and in the meantime that they are able to successfully treat each and every patient!

Thank you again to our wonderful prayer support! The cards and prayergrams that we continue to receive are so uplifting! We live in a supporting part of Oklahoma, not just our community but the many surrounding communities! Thank you again for everything!

Kalee

New Vision for Kya

Kya had an appointment with her opthamologist this morning. (Not that a 2 year old likes having her eyes dialated, but we have to!) He told us that she now needs glasses. We just saw him in January and everything was OK, but things have changed in the last 6 months. So, tomorrow we will go to his office in Oklahoma City so she can pick out the glasses she wants! Also, she will see her pediatric dentist and have her teeth checked out really well. They will also finish Kaysa's dental work tomorrow while we are there. Then, tomorrow night Kaysa's coach pitch softball team will get to lead team USA onto the field for the World Cup of Softball and each player on her team will be introduced. It is suppose to be on ESPN and the game starts at 7:00 p.m. Kaysa is very excited!!!

Kya is still doing pretty good. She looks a little rashy, but just slightly. She is having a steroid day today and that is not fun for anyone involved! Please continue to pray for healing in her body and for her team of doctors as they decide what to do next. Thank you once again for your support!

Kalee

Not So Good News

I got Kya's Aldolase results back from last Tuesday and they were up to 7.1. Yes, they are in the normal range, (high end of normal is 7.6) but they were up by 1.5 points from 3 weeks ago. I am waiting to hear from the doctors to see if they still plan on doing one more treatment and stopping or if they are going to change their plans. I know that tapering is a balancing act and it is the hardest part of the disease, but that doesn't ease my tension any at all. I do know that I have to trust the medical professionals, but I just want to scream "She is doing just fine on all this medicine lets leave everything alone!" But that is not possible!

Kya has had a busy weekend with the big Harrel Reunion and all of the family and cousins to play with. She is holding up pretty good. She is taking a little longer naps and fatigues easier, but she still stays positive and keeps climbing and going! Please continue to pray for Kya and that her levels will start to level on their own. I know that God can heal her and that with your prayers she will get better! Please also pray for Lake and I. It is hard to get your hopes up and then the wind taken out of your sail! It makes me very angry and upset that your own body could turn against itself! However, I had told Lake this weekend and before the infusion last week that I thought her levels were up, so it shouldn't surprise me!

Once again thank you for your prayers and support! Please continue to pray for our family.

Thanks Again!

Kalee

More Good News

Yesterday went very good. Kya had a treatment and she saw Dr. ONeill. The doctor was very impressed with how well she was doing and how great she looked! We will have another infusion on July 28th and then only take our daily meds and our weekly shot. She will do this until the first of September and then they will pull her blood again to make sure she is maintaining OK. Then if she is doing good they will lower her Methotrexate by another .1 ml and try to taper her off of that first.

We are very excited right now and we pray that everything continues to progress. Kya is doing great and we praise God for her progress!

Thank you so much for your prayers and support! Please continue to pray for improvement and complete healing in her body. Thank you so much!

Kalee

Another Treatment

Kya has another treatment tomorrow and she will see the doctor in Oklahoma City also. Please pray for her and us. Her normal infusion lady, Mavia, is gone on maternity leave and Kya does not like change!

Thank you for the many payers and for the great support! Many of you have sent cards almost every week and we greatly appreciate it! This means so much to our family and you have a special place in our hearts! Your prayers and support will never be forgotten. Thank you again and please continue to pray for complete healing!

Kalee

GREAT NEWS!!!

We heard back from Chicago and Kya's bloodwork all came back in the normal range. We are so excited! They also told us that her last two infusions will be this Tuesday and again on July 28th. Then they will only give her daily orals and her shots and see how she does. I am not sure how often we will have to see the doctor and draw labs, but they will be monitoring her closely! I am not sure how to feel at this point. Excited, scared, hopeful!

Thank you for your many prayers! We know that it is your prayers and support that have helped her get through this. You mean so much to us! Please continue to pray for improvement and healing in her body! Thank you again!

Kalee Carpenter

We won the championship! It took 2 tries, but we did it! They made our coach pitch team forfeit because we didn't have enough players without our t-ballers and they were still playing! But, we will still play in the losers bracket Thursday at 7:00. Kya was so excited after the games that she ran the bases for about 10 minutes after everyone was off the fields. She was telling everyone that she is going to play t-ball next year! (I am not sure about that) Our little girls worked very hard and so did all of our coaches and "staff". Congratulations girls you deserved it!

Kya is continuing to hold strong. We still haven't heard anything back from the Chicago lab results. I am going to call them today and see if they know anything yet.

Thank you for all of your prayers and support. Please continue to pray for Kya and her healing! Also, please pray for Kaysa and her dental work that she has had done and will have done. Thank you again for your prayers!

Kalee

Where has June Gone?

I know I haven't blogged lately, but this month has grabbed a hold of me and drug me along. It has been a very busy month. (I am not sure when we aren't very busy?) From Kaysa playing on 2 softball teams, dance recitals, Basketball camp, dentist appointments, IV Infusions, doctor appointments in Chicago, several anniversarys, lots of birthdays, and everyday activities we have ran until the late hours of the night every day! Good thing that is when Kya is at her best. We let her sleep through the heat of the day and that way she is good to go! She is actually holding up better than the rest of us!

Kya is actually doing pretty good. She might be a little weak, but I think she is doing ok. Her usual infusion date would have been yesterday, but since they spread them out she won't have one until next Tuesday. Please pray that she maintains and even gets stronger over the next week. She took her Methotrexate shot Saturday night and did pretty good with that. It is not making her as sick as it used to. The lower dose is helping ease the nausea. She still says her tummy hurts, but she will at least eat that next day. Overall I think she is maintaining. I know she is enjoying her summer and going to all of the softball games in the evenings. She really likes to socialize, be outside, and see her friends.

Yesterday, Kya took a late nap so she was good to go until about midnight. which was good because Kaysa played softball until 11:00 last night. We had a nailbiter in t-ball and came from behind (our first time all season) and won 23 to 22. We were down by 6 when Kaysa hit a homerun in the last inning with 2 people on base to score 3 runs! What a way to start a rally. Everyone stepped up and we scored 4 more runs with no outs to win the game! Then we played the first round of the coach pitch tournament and we run ruled the team so we got to go home early! (Ha! Ha!) Kya went home and stayed the night with Grandma Trish! Kaysa was having dental work done at 8:00 this morning in Edmond so she and I went to Yukon to stay last night after the games.

Tonight we have the championship game of our t-ball tournament. Sounds like a real big deal, it is at our house! Our teams are undefeated so far this season, but it will be a tough game tonight. Then, we have the 2nd Round of our coach pitch softball tournament right after the t-ball game. (We are also undefeated with that team) We will finish up the coach pitch tournament on Thursday and Friday! Then, Kaysa will sing Saturday night with the Oklahoma Opry band at Yukon at the Freedom Fest for 4th of July.

Speaking of 4th of July, Kya is ready for firecrackers! She has been talking about them since last week. She wants to do "Romans". My children really enjoy setting off fireworks, especially Roman Candles! (I am not sure how safe this is, but no one has gotten hurt yet!) Uncle Jimmy is having his big 4th of July get together tonight and we are playing ball. I haven't even told Kaysa because she will be so disappointed. We are going to try to make it to see the big fireworks as soon as our games are over. (But I am afraid it is going to be to late.) This is one of Kaysa and Kya's favorite holiday get togethers! We will have to try to make it up to them somehow.

Well, that kind of sums up what has happened this month and since the last blog. Please continue to pray for Kya. She is continuing to get her muscle strength back, but there are a few muscles that we really are having to work on. Her trunk muscles are still rather weak. Also, she still doesn't have her bladder control back (it comes and goes) and that is making it hard to get potty trained! Please pray for improved muscle strength in especially these areas. Also pray that she continues to respond well to the tapering of her medicines.

Also, please pray for our new friends, the Bradford's in Washington. Their little boy, Gary who is 2 also, has the same disease and he is not doing well right now. He can't swallow and he has a feeding tube. He has also been in the hospital in isolation with a bad infection. We know what they are going through as we have been in there shoes! He was just diagnosed in May so they are in the trying months right now. Please pull your prayers together for their family and especially for Kya and Gary! They don't understand what is going on or why it is happening. It is so hard for them dealing with all of their emotions, the medicines, the needles, and just the changes in their lives! Also, say a special prayer for Kaysa and Gary's siblings. Kaysa made a comment the other night about she wouldn't have prayed and asked for a baby sister if she knew she would have to be sick. It is so much for them to process! (It is so much for me to process!) We forget how much it affects everyone involved!

Thank you again for being a great support team! Your prayers are greatly appreciated!

Kalee