I have had a pretty good day today! My face looks the best it has since over a month ago. I still have pink cheeks, but they aren't flaming and my eyes aren't swollen and rashy. I can move a little easier, but I am really wobbly. I still can't get up and down by myself. (so that makes me mad!)

I got to go to Woodward with my mommy and Grandma Trish to run a few errands today! I slept for an hour and a half while we traveled and while my mommy picked up some things. Then I woke up and we went in a store and ate some lunch. Then, I went back to sleep while we drove home! Traveling really wears me out. I have been pretty laid back tonight. My muscles are pretty sore from just being in the car seat and sitting up most of the day.

Thank you for all of your prayers! I feel much better this weekend than last weekend! Your prayers are working so please continue to pray for me! I go again Tuesday to have another treatment so please say a special prayer that day!

Thanks Again!

Kya

Kya has had a pretty good day today. She has stayed in her pajamas all day and played with grandma Trish. She has finger painted and stuck stickers to everything. (Thanks Marcia!!!) Also, she had to call and tell me about her pretty flowers that she got today. (Thanks Rhonda!)

Her rash is a lighter pink and her movement is about the same. She is moving pretty well as long as she is up in a standing position. However, the transition from down to up or rolling over (basically anything that uses torso muscles) just isn't happening! Her spirit is much stronger today which makes it a little easier on us. She has been laughing at things and trying to smile and be funny. We love to see that! She even tried to do what the kids on Barney were doing. She was singing along with Dora earlier also. (We all can sing along with Barney and Dora!) When mommy got home we had a tea party (If water and marshmallows count as a tea party!) in the play room with her table and dishes.

Thank you so much for the many prayers, calls, cards, and inspiring stories! We know that God has a purpose for her in this situation. We pray for a cure and comfort in healing. Thank you again for all of the support!

Lake, Kalee, Kaysa and Kya

We are home! (Kind of.) We arrived back in Leedey around 6:30 p.m. last night. Kaysa was very glad to see us and Kya was glad to see Grandma! Kya is doing very good considering the week she has had. Kaysa, however, is not feeling well and had to go to the doctor today. So, Lake and Kaysa are at home! Kya and mommy are staying with Grandma Trish! Kaysa has an infection in her throat and chest and that is one of the worst things that Kya could get. We decided it would be best for everyone to arrange things this way for a while! We love Oklahoma's changing weather that keeps us sick.

Kya is feeling good tonight. She still doesn't have much strength in her torso or arms, but she seems much stronger in her legs. She has been watching Sister Act and dancing to the music. Her disposition is much more positive and she isn't has cranky! This is a relief for everyone. Thank you so much for all of the many prayers and cards! We have been touched by people we don't even know. You have been so much support and we appreciate everything that everyone has done! Please continue to pray for healing and a cure! We are praying that God is just giving Kya a fabulous testimony that she can use to touch many people. We know that she is already being prayed for and has touched many who didn't even know her a month ago! Thank you once again for all of your prayers!

Lake, Kalee, Kaysa and Kya

A DAY OF BLESSINGS!

We made it! Kya made it through surgery just fine. It didn't take her long to wake up and yell for her mommy. The doctor had just told us that it would be about 30 to 45 minutes and they would call for us. It was about 3 minutes when the phone rang. They said that she was really wanting her mommy! We went back to the recovery room and she wanted out of her bed and wanted me to hold her. I sat and rocked her and they gave her some morphine for her pain. Then we had to wait for her to wake up from the morphine (that took a while). After they decided she was stable enough to leave the recovery area we went and had a treatment. During surgery they inserted the port and left it accessed so they could use it for her treatments today and tomorrow. This worked very well!

Her treatment went much smoother today. However, that could be because she was still drugged. She has slept ever since her treatment was over. She just woke up about 45 minutes ago and she is full of it! The steroids have definitely kicked in! She has not had any pain medicine since they gave her the morphine this morning. She is quite talkative right now. As a matter of fact the girls at Kids Care 1 who did her treatment said this is the most they have ever heard her talk!

Thank you for all of the prayers! She hs definitely had a day of blessings! Please continue to pray for healing of the port sight with no infections! This is very very important! We appreciate all of your love and support!

Lake, Kalee, Kaysa and Kya

A DAY FOR CHANGE!!!

Today has been a challenging day full of change and hopeful progress! Kya has not been doing well the last 2 days. Last night was awful she was in lots of pain and today she just couldn't hardly move around at all.

We went to have a treatment this morning and it took them 3 times to get an IV in that would flow. I felt really sorry for her, but she stayed tough. She kept telling them that she was all done and ready to go home! After her treatment we had a doctors appointment with the pediatric rheumatologists. She actually saw her doctor and Dr. Jarvis who works with her doctor. The doctor agreed with us and was not pleased with how she was doing either. She felt that with her getting sick last week and the tapering of her meds we have had a set back! So, we put our heads together for a new plan of action.

She felt that we needed to avoid having to fight for a vein every week (for the sake of her mental and physical health) and we agreed. She also thought she need to increase her oral steroids back up to help her with her strength. An increase was definitly needed in her methotrexate to control the immune system or the disease itself. She also believed a daily liquid vitamin would be beneficial. We also discussed a physical and occupational therapist. After discussion, her plan was to do these actions immediately! She also wanted to hit her hard with 3 days of IV Pulse steroids to see if we could get on top of this. We were excited to see her getting aggressive with her treatments!

So where did that put us? In OKC in the ice storm!!! Kya has surgery at 7:00 a.m. tomorrow to put a port in place so that they can access it easily for her treatments. As soon as she gets out of surgery they will send her to have another IV pulse steroid treatment. We will stay overnight again and they will do another IV pulse steroid on Wednesday. Please pray for her as she goes through this surgery in the morning and the daily treatments!

We will continue our weekly IV treatments and after she is healed from her surgery they are going to start some physical and occupational therapy (probably around February 9th)! With these new steps and the increase in meds we are hoping that we will see some much needed improvements.

We want to thank everyone for the many cards, stickers, books, jewelery, prayer blankets, phone calls, and prayers! (Also thank you to those who have helped us take care of our work and our animals!) This means so much to us and we feel very blessed to have such a great support system! Kya loves to get her mail! Please continue to pray that this plan works and that we do not get an infection during the surgery or in the port!

Thank you so very much for everything!!!

Lake, Kalee, Kaysa and Kya Carpenter

Hooray! Mommy and daddy are home!!! But, now we are gone again. Mommy and daddy got in late, but we are getting ready to leave for my treatment and appointments in Oklahoma City. We are going to try and beat the bad weather that is coming in.

Yesterday was an OK day and today has been a very bad day. My movement is not good at all and I am very weak. Thank goodness I am going to see the Doctor tomorrow. Well, got to go! Please continue to really pray for me. Thank you for all of the many people who have prayed!

Kya

FRIDAY AT GRANDMA'S HOUSE

It has been a very good day for Kya. Possibly the extra Prednisone on Thursday made her feel better, but she has been more active and maybe more stable on her feet. Her up and down movement is slow but she isn't falling over. She was laughing out loud at some "Backyardigan" antics on television, I haven't heard that in several weeks. She has moved about the house much more, even encouraging me to "run" as she took me into the living room to see something special. I know she is supposed to have good and bad days, but I am really grateful to be a part of this "good" one. She is taking a nap to catch up on the late bedtime last night(about 11:45). The travel yesterday provided opportunity for lots of napping that was needed to recover from the stomach bug Wednesday night. She really wasn't ready to go to bed at ten, but after some restlessness and tossing about, she fell asleep a little before midnight. Up with Kaysa at 7:00, Kya seems to be in her usual routine today, so she was ready for a nap about 1:00. So was I, but unfortunately not on my schedule. Thanks for all the concern and prayer, it's hard to believe that 3 weeks ago today is when Dr. Lehr first mentioned the possibility of Kya having Dermatamyositis. How quickly one's world can change...Please continue to pray, it is the ultimate source of hope for this condition. Trish

VERSE:

But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. -- 2 Corinthians 12:9

THOUGHT:

While other preachers in Paul's day were parading around their credentials, Paul refused to get into a bragging contest to prove he was the most impressive of Jesus' disciples. Even though he had the religious education and Jewish pedigree to silence his rivals, he preferred to acknowledge the areas of his weakness where God had triumphed over his own limitations. Let's be careful today about examining and determining the ministry-worth of someone based on his or her resume. Instead, let's look for people in whom God's grace has triumphed.

PRAYER:

Almighty and loving Father, thank you for sustaining and enabling me to serve you in ways I would never have dreamed of doing. Please help me serve you faithfully as I depend upon your grace. In Jesus' name I pray. Amen.

Yesterday was pretty much a day of sleeping for me. Being sick in the night really pulled me down. We also went to the opthamologist in OKC to check my eyes and to get a baseline watch on them. He said that my eyes looked great! Nothing there to worry about. (Daddy said that was from his family!) Mommy and daddy got to go to San Diego to meet with the doctors. Kaysa and I get to stay with Grandma Trish we are so excited!!! I had a good evening and I am doing really good this morning! (Probably because they gave me more prednisone to help boost me from my bug!) I am watching Dora and singing and dancing! Thank you for your prayers! They helped me get over my bug quickly! Please continue to pray! Miss you!

Kya

Change in plans! I have a way of changing plans for mommy and daddy. I got sick with the stomach virus, fever, chills, and a headache about 1:00 a.m. We were up until 2:30 sick and then I fell back asleep. Daddy also got sick! So mommy changed filghts and hotels around 2:00 in the morning. They are just going to go early in the morning or late tonight depending on how daddy feels! I feel better now, but I don't know how long it will last! Please pray for daddy and I that we get to feeling better (and for mommy because I really scared her last night!) and for a safe and productive trip for mommy and daddy whenever they get to leave! Thank you for all of the prayers and support!

Kya

Today has been a pretty good day. This morning I was really tired but after a good nap I felt better this afternoon. Grandma and I went outside and played in the shade this afternoon. My movement is OK as long as I don't have to get up or down. I have been eating lots of protein today to help rebuild my muscles! My mommy and daddy are going to meet with the specialist and researchers tomorrow to see if there is anything else we can do. Please pray for them as they travel and pray for Grandma Trish since she will have Kaysa and I! Thank you so much for all of your prayers and concern. A very special "Thank You!" to the ladies in Edmond who made me my new prayer blanket! I pray that they find a cure for me quickly!

Kya

Just a quick update. Yesterday I had another treatment in OKC. It went really good. I did better with the whole doctor thing and I only yelled at Mavia and Sabrina. But it wasn't because they were hurting me. It was just because I didn't want to have it done and I was scared. (Mommy knows this because I started yelling the minute they walked in the door!) They increased my daily prednisne back up to 3 ml. I wasn't doing very well tapering off so they decided I needed to increase it back up. They drew lots of blood so they can run all kinds of tests to keep monitoring how I am doing. This isn't all that bad because they do it through my IV port. Thank you so much for all of your prayers and support! We will keep you updated!

Kya

This morning I went with my mommy and daddy to Elk City and helped them (Actually, I watched Dora while they worked). Then my daddy drove me around while my mommy worked and I took a 2 hour nap. When I woke up I was still pretty weak and my movement wasn't very good, but I really really wanted to go to dance. My mommy took me to dance and sat in the lobby waiting in case I couldn't make it. I made it halfway through and was ready to quit, but Miss Lisa told me it wasn't much longer so I toughed it out. She said I did great! (Considering I can't jump or do certain things!) I was very tired when I was finished. I just wanted mommy, french fries, and Gatorade! We waited on sissy and came home. I took a bath and have just been laying around watching Dora and Barney. I just don't have much strength or energy today!

Thank you for your prayers and support! Please keep praying as I have another treatment tomorrow. We appreciate the phone calls, emails, comments, texts, notes, and prayers!

My verse today was:

And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us. -- Romans 5:5

I know with all of the Hope and prayers I have I will get well! He will not disappoint us!

Kya

VERSE:Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. Romans 5:3-4

THOUGHT:What are you living to produce in your life? Wealth? Fame? Status? Significance? Legacy? How about character! Isn't having the character of God our real goal in life? So even in our worst of times, if we can be people of character, then nothing can steal from us our most desired goal, the character of God, given us in Jesus Christ.

PRAYER:Dear Father, please bless me so that I can be strong in difficult times and consistent in holy character. Please give me a heart of courage and compassion so that in some small way I can more nearly remind others what you are like and what you can do in their lives. In Jesus' name I pray. Amen.

Just thought I would share something that is keeping us going. We know that God is faithful and will see me through!

WEEEEE! Today has been a rollercoaster ride. I wasn't doing very good at all this morning with my movement. Then, after several crashes, I began getting really cranky and my rash started looking bright pink again. So after lunch, and some laundry, my mommy and daddy made me take a good 2 hour nap with them. They said I needed my rest, but actually I think they needed their rest! After my nap I felt better, but my movement still wasn't very good. About 5:15 I had a major stir crazy melt down. I wanted anyone or anywhere but here. I just wanted to "Get out of this house!!!" So mommy, Kaysa, and I went for a drive. We ended up at the corner for a drink and a snack, but mommy made me stay in the pickup with Kaysa. Then, we went and checked on my horse. About dusk we decided to play on the playground at the school. That way the sun couldn't get me and I could get some exercise. Mommy helped me climb the stairs, slide, and swing. After about 15 minutes I was worn out! We went to check on Grandma Trish and she had Kaden!!!! I was so excited to see him. I haven't seen him since Christmas!!! We played at grandma's house for a long time and he even got to come stay the night with me tonight. We traded Kaysa for Kaden, that will work for the night! I seem to be getting up and down a little better tonight, but my right side is still pretty weak.

Daddy told me that they had special prayers for me tonight at church and I can tell that they are already helping! Thank you so much for all of the prayers and the special ones mean so much to my family. Right now Kaden and I have decided that there are monsters in our bed and we are not going to sleep! I have rested good today and all of the meds may make this a long night. Thank you for your special prayers and please continue to pray for me!

Also, you can help find a cure for my disease by giving to CureJM under my website. We are raising money solely for research to find a cure for this rare disease. My mommy and daddy are going to meet with the top specialist and researcher this week to make sure we are doing everything possible. Also, they are going to meet with other families that this has affected. Please pray for them as they travel! My website to donate on is www.firstgiving.com/kyacarpenter. I want to thank you in advance for your donations! I know that with your help, prayers, and donations I will not have to fight this my whole life! They can find a cure. It just will take research time, money, and lots of great prayers from people like you!

Thank you again for everything and I hope to see everyone soon!!!

Kya

Good morning I hope you enjoyed being able to go to church! I really miss it! I got up this morning and put on my pretty church dress, a hat, and some shoes, hoping that no one would remember I can't go to church. But my daddy and sister left without me! I cried to go to church and see Johnny this morning, but mommy said we would have to wait a little while longer. I hope that everyone realizes what a blessing it is to be able to go to church!

My morning has not been to good. My right knee just keeps giving out on me and I have taken three bad spills that hurt! My whole body is sore so when I fall it hurts me all over! I decided the safest place was in mommy's rocking chair watching cartoons. So I am just sitting and watching TV all dressed up with nowhere to go! Please pray that my legs start working better soon! I want to run and play, but I just can't! My rash does look better on my face and I am not really cranky, I just can't do what I want to do!

Thanks for following my story! If anyone wants to buy a toy or mini australian shepherd my sister and I still have 2 black tri males for sale! Mommy, Daddy, and Kaysa sold the other 3 yesterday! Thanks for all of the prayers, cards, and support! Please continue to pray for my speedy recovery and that the researchers find a cure!!!

Kya

Today has been a much better day than yesterday. My strength seems to be a little better. I am still having trouble with my mid section muscles. I am like a turtle if I get on my back I am stuck! I have been handling basic movement with a little more ease today. It is just extremely hard for me to get up and down right now. I have spent the evening letting mom work while I watched Dora and Barney. Daddy and sister went to Homecoming and I really wanted to go, but I just can't. I have wore my ballerina suit all evening to dance with the music on TV. I dance for a couple of minutes and sit for several, but at least I am still trying. My disposition today is much much better! I took a good nap for Grandma Trish earlier and I haven't been cranky at all this evening! Please continue to pray for me! I know we will have ups and downs, but I don't like the downs. I pray that I get well quickly! (I miss seeing everyone!) Also, please pray that they find a cure or that I go into permanent remission so that I don't have to deal with this anymore! Thank you for all of the prayers, calls, support, cards and stickers! (I really like to stick stickers on everything! Plus it keeps me busy using my fine motor skills!) Thanks!

Kya Kay

Today my daddy got to stay home with me for most of the day and I woke up in good mood but frequently asking where my mommy was. My rash on my face was a softer pink today however my knees are still dark pink and purple. Daddy and I were busy doing several things today around the house but most of the day was spent playing games and holding me. The worst part about today was that I was weaker than I have been and I struggled getting up and down off the floor. I took a late nap so I may not be ready to go to bed tonight. Thank you for keeping up with my progress and please continue to pray that I get stronger and more willing to do activities to keep my muscles and body strong. LOVE ALL OF YOU!!!

KYA KAY

God has blessed me with a good day today. I am moving with a little more ease and my face is not quite as flaming pink. I have spent the day playing with Grandma Trish and eating chicken. I was kind of cranky this morning, but after I woke up from my nap this afternoon I felt better. My good time of day is from about 4:00 p.m. until I go to sleep. (Which can range from 10 to 1) This is when I feel my best and am in the best mood. My face doesn't look as good during this time, but I feel and move better. God has already done miracles in my little body and I know that He will continue to bless me. Please keep praying for me as I know it is your prayers that are making all of the good things happen quickly. Let's show everyone that miracles still really do happen!!! Thank you once again for all of the prayers, phone calls, emails, text messages, and following my blog. Your support has really helped my mommy and daddy through my journey! Keep praying!

Kya

Treatment number 2 is over!!! I have been a little bear today. I slept most of the morning, but this afternoon has been a full one. We went to see Mavia and take a treatment. I was not ready or willing. I have little veins and was kind of dehydrated so they had a hard time hitting a vein. (Not to mention I was yelling at the top of my lungs to stop!) When they would get the needle set I would tense up by muscles and push it right back out. This was not helping matters. Finally, Miss Lynda, my doctors nurse, came to help Mavia and between mommy holding me, Lynda finding a good vein in my hand, and Mavia helping hold my arm steady we got I got to watch Alvin and the Chipmunks and Barney today during my treatment. Then, Dr. O'Neal came and saw me. She had some news about my muscle tests. She said that they were much better than expected. She couldn't believe how good the results were and we told her it was God! She said my heart was very strong and that my throat seemed to be OK. She also said that my levels from my muscles were much lower than expected. (Which is a good thing!) This meant that we caught it quick and the prednisone is working. We just have to keep working my muscles regularly to get back all of my strength. After watching me for a while after my treatment she said my muscle improvement and progress today was very good. She couldn't believe that I was getting around as good as I was. I told her it was because so many people were praying for me! She said that she would see me on January 26th if not before! Thank you for your prayers and support. Please just keep praying!

Today has been a good day. My rash looked better this morning. It has almost all faded off of my hands and my knees looked better. My cheeks are still pretty pink, but they aren't as bright as yesterday! I have had a few more tumbles and falls today than yesterday, but I have been fairly busy. I did get to go to dance today and I only fell once. It was nice to get out of the house even if only for a couple of hours. I have had a busy day with Grandma Trish and I was so excited to see my sissy! I am full of energy this evening and I have been attempting to do some forward rolls. I actually did a couple all by myself, but they are hard work! I am ready to go see Mavia and see if she can make me feel better tomorrow! Please continue to pray for me as I have another treatment tomorrow! Thank you for all of the prayers and comments. I love it when my mommy shows me my web page and tells me what people have written for me! God Bless You!!! KYA

We have made it through another day! Kya slept until about 11:00 a.m. since she was up until about 12:30 or 1:00 this morning. She woke up in good spirits and with pretty good movement. She got up and played the Wii fit with me for a while and we even ran a race together. She has been rather active for her today and has had a pretty good attitude. She hasn't had a nap all day so she has gotten kind of crabby in the last couple of hours, but now she is watching Dora in bed and will soon be a sleep! She had a choking incident at supper, but we are praying that was from her not chewing well and not from her throat muscles losing strength. However, we are going to contact the doctor in the morning and see what we need to do. She has ran a low grade fever since about 1:00 a.m., but that is one of the side effects of one of her meds. Still we are going to make sure we get things straightened out for sure. Please pray tonight that she gains strength and that her throat muscles are not being affected. Thank you for all of your prayers, thoughts, and phone calls! We love you!

Kya has been fairly active today. She has kept us busy with games of ring around the rosy, hokey pokey, and trying to tumble on Kaysa's gymnastics mat. She started all her different medications today, and was very cooperative in taking all of them. So far we haven't seen any side affects from these. Her spirit and alertness was good today. However, her rash seemed to be a little more red than yesterday. She did get to stay with Delma for a few hours this evening and she was very excited to see her. At this time we are trying to get her to wind down and go to bed. However, the steroids are winning this battle. She hasn't taken a nap all day so I feel like the steroids are beginning to kick in. We pray tomorrow brings more improvement. Thank you for reading and keeping her in your thoughts and prayers.

What is Juvenile Dermatomyositis?

Juvenile dermatomyositis (JDM) is an autoimmune disease causing vasculitis that manifests itself in children; it is the pediatric counterpart of dermatomyositis. In JDM, the body's immune system attacks blood vessels throughout the body, causing inflammation called vasculitis. In the United States, the incidence rate of JDM is approximately 3 cases per million children per year, leading to 300 to 500 new cases annually and affecting an estimated 3,000 to 5,000 children.

The vasculitis caused by JDM manifests itself predominantly in two ways:

One is a distinctive rash. The rash often affects the face, eyelids, and hands, and sometimes the skin above joints, including the knuckles, knees, elbows, etc. The color of the rash is a pinkish purple, and is called heliotrope (after a flower of the same name with approximately this color). On the hands and face, the rash very closely resembles allergies, eczema, fifth disease, or other more common skin condition, but the heliotrope color is unique to the inflammatory process of JDMS. Some children develop calcinosis, which are calcium deposits under the skin. The rash is the source of the "dermato-" part of the name of the disease.

The second symptom caused by vasculitis is muscle inflammation. This symptom is the source of the "-myositis" part of the name of the disease ("myo" = muscle, "-itis" = inflammation of). Muscle Inflammation causes muscle weakness, which can cause fatigue, clumsiness, not keeping up physically with peers, and eventually inability to perform tasks like climbing stairs, lifting objects, and performing other manual tasks. Other signs may include falling, dysphonia, or dysphagia. The muscle weakness often causes a medical misdiagnosis of muscular dystrophy or other muscle disease. Some patients develop contractures, when the muscle shortens and causes joints to stay bent; exercise can prevent this. The muscles first affected tend to be proximal (i.e., neck, shoulders, back, and abdominal). About half of children with JDM also have pain in their muscles.

I have both symptoms and am learning more and more each day about this big word disease. A very helpful website that we have found is www.curejm.com. We have talked to the head people of this organization and they have given us some very good advice and information.

First Treatment

I took my first IV treatment at about 2:00 p.m. on Friday, January 9th, 2009. Mavia got my IV in without even hurting me. I got to sit and watch Shrek 2 while they did my steroid infusion. It took about 1 hour and that is a long time for a 2 year old to sit still with their arm immobilized. But, I did great! My mommy and I sat in a big cushy recliner, rocked, and watched my movie. They had to monitor my heart and blood pressure while they were doing it. I am not very fond of blood pressure cuffs, but I will get use to them. It was all over before I knew it. When it was we got to go home!!! YEAH!!! We had been at this hospital for 6 hours straight and I was ready to go see my Trish!!! We headed to Elk City to pick up my new set of meds from Gina. I learned that I am going to get to watch a lot of movies, because I am going to have to do this every week for a while. So far we have set up our appointments into April. Please continue to pray for me that I will handle all of the medications without any problems and that I wil get better quicker than expected. I am going to miss seeing everyone regularly, but until I get off of all the strong medicines and my body quits fighting itself I will have to stay away from everyone for a while. Love you and thank you for your prayers!

The Official Diagnosis

We went to Children's Hospital in Oklahoma City on the morning of Friday, January 9th, 2009, with hopes that the dermatologist and pathologist were just wrong. We met with our "New Doctor" who is a pediatric rheumatologist at 10:00 a.m. We found out that they do not see patients on Friday and that we were the only ones in that Kids care zone. She said that she had reviewed the paperwork and felt that Kya needed to be seen sooner rather than later and began asking many questions.

She quickly learned that Kya does not like the word "doctor" and everytime she said it Kya told her to "Go Away!" She informed Kya that this was her office and that Kya would have to be the one to leave because she wasn't going anywhere. However, she was fabulous with her. She played games with Kya to get her to do the tests that she needed to do and when we hit our "No" phase she let her watch Shrek while she talked to us until she had cooled off. She spent two hours with us talking and evaluating the situation. Then she layed out on the line for us.

She told us that Kya did for sure have Juvenile Dermatomyositis and that she had the very aggressive kind. Which was good and bad. The facts were laid out like this:

* It is an autoimmune disease that she will live with forever and that there is no cure.

* However, she believes that it is treatable and that it could possibly go into a "remission" state.

* She has the aggressive kind that will attack hard and fast.

* However, it usually responds better and quicker. (Quicker meaning 2 to 3 years)

* The quicker you catch it the easier it is to treat. She thought we were very quick on this.

* The treatment will be very aggressive lots of strong medicines and IV treatments in a hurry.

She used to be a doctor in New York for 14 years. While she was in New York she treated 17 patients with this disease and all but 1 was very successful. That 1 had several complications and other underlying factors.

She then told us that she had spotted Kya walking across the hospital and that she could tell by the way that she walked that she was her patient. She has lost quite a bit of muscle strength and is weaker on the left side. She said that she was worse than what she had expected. She had already lined up an IV treatment for that afternoon. And had a plan of action that we needed to take.

How It All Began

On December 6th, 2008, Kya was staying with her grandma and had spent the day at the river. Her cheeks looked a little wind chapped so her grandma began putting vaseline on them. On December 19th, they were not any better and actually looked worse and kind of rashy. She also had developed a prickly looking rash on her elbows and knee caps. We took her to the doctor thinking it was a rash from the infections going around. We treated her for a week for a viral infection. When she was not any better and she was significantly worse our family doctor sent us to a dermatologist in Oklahoma City on Christmas Eve morning. He thought it was atopic dermatitis. We treated her for a week with the steroid creams he provided for us. On New Year's Eve when it wasn't any better we called the dermatologist back. He saw her on Friday, January 2nd, 2009 and did a biopsy on her knee. He told us then that he wasn't sure exactly what it was, but the signs were pointing to a disease called dermatomyositis. However, he couldn't imagine it being that because it is so rare, but he wanted to just make sure that wasn't what we were dealing with. He called us back on Wednesday, January 7th, 2009 at about 1:45 p.m. and told us the test came back positive and that they were looking for a pediatric rheumatologist to treat her. We received a phone call on Thursday, January 8th, saying that there was a pediatric rheumatologist at Children's Hospital in Oklahoma City who had reviewed her file and wanted to see her at 10:00 a.m. on Friday, January 9th, 2009.