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