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