I really wasn't sure if I suppose to be excited or terrified but I felt a sigh of relief. Finally, after a week of waiting, I felt like we were headed in the right direction. Dr. L said we needed to see a specialist.
He had only seen myositis once in his career and it was about 20 years ago. It was not something he could help us with. He called his nurse in and told her to locate a Pediatric Rheumatologist.
I immediately requested Dr. C in San Antonio. I didn't know Dr. C, but I knew that's where we should have been 2 1/2 years ago.

The receptionist contacted Dr. C's office and was told he was booked and would contact us when he had an opening. She contacted another PR that would see us in three days.
This wouldn't do. If I had to admit her into the children's hospital in SA, she was going to be seen today.
We went to my office and waited for the call letting us know when Dr. C would see us. He called from his cell phone about 2:30p.m.
He explained that he was booked but that he would see us today. He also told me to pack my clothes because she would probably be admitted into the hospital. I raced home to gather some things and decided I needed to call the high school to tell my other daughter, Jennifer, to meet us. I was scared to death. I knew she was sick but didn't really absorb the full extent until I had spoke to the Dr.
I couldn't help but cry.

I also had to stop off at the Hallmark shop to get my baby a collectors doll. I had no idea how long she would be in the hospital, so I wanted to get her something special and I knew it had to be the baby doll she had been wanting. I then hurried to meet them and we all drove the 40 miles to San Antonio. We tried to be brave, but found it difficult to keep the conversations normal and positive. We arrived at the Drs. office at 4:00p.m.

We waited about an hour and then met with Dr. C's wife, also a Dr. She took the history and did a basic exam. The nurse came in to prepare her for blood work.
Thank goodness for Emla. We waited another hour in our van, for the Emla to work. I read over a pamphlet providing JDMS information.
We hadn't eaten anything all day, so Joe ordered us burgers but I don't really think anyone ate. We finally saw Dr. C at 8:00p.m.
I don't really remember saying anything to him. He did a thorough exam of her muscle strength and joint movements. He said it was obvious she had Juvenile Dermatomyositis.
It was 9:00 by the time he had complete the exam. Her weight was 61 lbs. She had contractures in her shoulders, arms and legs. The muscle strength test showed an obvious weakness over her entire body, including her neck. She couldn't lay herself down nor lift herself from the bed without assistance. She could not sit up straight on the bed with her legs extended straight. Dr. C had Jordan stand up and try to touch her toes. Even with great effort, she could barely get her little hands past her knees. Dr. C said there was no doubt about it, she had JDMS. He said he could see it when he first saw her from across the room. Because it was so late, he would write out a prescription for her for tonight and would call us within 24 hours with the blood results.
He would then tell us what was needed to be done. We weren't familiar with the area and needless to say, we couldn't find a pharmacy that night.

I know it began in the late summer of 1995. She had her tonsils taken out in July. By October, we had taken her to our family doctor for a rash that wouldn't go away. It began on her face and hands. Her little cheeks always looked sun or wind burned. Her hands had yellow hardened cuticles.

Our family doctor treated her with steriod shots once in October and again in November thinking it might be poison ivy. It didnt go away.

In late November we sought a dermatologist at the suggestion of our doctor. On Nov 27, we saw a Dr. T in New Braunfels. He prescibed Des Owen Ointment and sun screen since it worsened in the sun.

It didn't go away, nor did it appear any better. We returned to the dermatologist on Dec 11, 1995. Still, no positive identification of what it was. A biopsy was scheduled for Jan 15.

My husband, Joe, took Jordan for the biopsy. They took blood to test first. The biopsy was performed in the doctors office. After a local anesthetic, Dr. K simply cut a small piece of skin from Jordan's knuckle. He left the room and the nurse cleaned her up. The nurse made a statement to the affect that "thats all there is to it, Jordan". Jordan thought that meant she could get up. When she tried, she got dizzy and fainted, falling to the floor. She came to and she looked and acted all right, so Joe brought her home.

When the results came in, Dr K called to let us know that it was inconclusive. He suggested we take her to a Rheumatologist and had set up an appointment.

Jordan was not interested in seeing another doctor at all. We were unaware of what a Rheumatologist was and called our family doctor back. He had the results faxed to him. Once he got the results, he called to tell me that he didn't see the need to see such a doctor, it would be a waste of money, but I could if I wanted to. We all felt like it might be just an allergic reaction to something she was coming into contact with or eating, especially since it looked better on some days. Unfortunately, we canceled the Rheumatology appointment.

We didn't see another doctor about it nor was it a concern to our family doctor when she was seen for other things. We just thought she would eventually grow out of it.

The week before we were scheduled to see our family doctor,(this May) I called the dermatologist office to see why they suggested a Rheumatologist. The nurse acted very surprised that we hadn't taken her. I told her about discussing with our doctor back then and told her what was happening now. She said to make sure our doctor knew that she was ANA POSITIVE. I had no idea what that was and she couldn't give me specifics. I was on the internet as soon as I hung up the phone. I looked up ANA positive and came up with a long list of diseases(75-100). I researched everyone one I found. Dermatomyositis stuck out. It wasn't long before I realized that Dermatomyositis was the only one that had the symptoms (rash and weakness)Jordan was showing. By the time I saw our family doctor, I knew the disease and treatment. I knew it wasn't good.

Now here we are, trying to treat a disease that should have been treated 2 1/2 years ago.

By 6:00p.m. Dr. C called. He didn't sound very happy with me. I suppose it was because I had called a few times that day insisting I speak to him.
(The 3rd time I told his receptionist that I felt like I had been told to give her tylenol and call him when she feels better. This wasn't tylenol and I don't even know what were doing for her. I wanted an explanation.)
Dr. C assured me that he would not have given her something that she didn't need and that he hadn't forgotten about her.
Some of her results had come in, and he felt it was better to continue with the oral Prelone rather that admitting her into the hospital. I was somewhat relieved.
I didn't want our baby in the hospital and hearing that made me think she wasn't so seriously ill. We were to see him again on Monday or Tuesday. He would call and set up and appointment along with hospital appointments for testing at Santa Rosa Childrens Hospital.

She has been in our bed for the past few weeks. I couldn't touch or hold her enough. I would lay beside her and kiss her while she slept. I would wonder and imagine and pray. I hated to close my eyes at night.

Family members and friends had heard by now. I tried to explain what I knew. I must have repeated it dozens of times. I'm not sure I believed it yet or even wanted to. I wanted so terribly to go to sleep and wake up to find it was just a bad dream.

Why didn't we think more of her complaints. Why did we just brush off the fact that she had been complaining about having to sit indian style back in December, 97? Why did we think it was no big deal that she couldn't sit that way? Why did we think is was no big deal that she was last in the school races a month ago? Why didn't we realize something might be wrong when we noticed she wasn't the basketball player in February that she had been last year? We blamed it on lack of exercise. We blamed it on lack of dancing and gymnastics over the past year. How could we have? She was turning cartwheels, doing hand springs, backbends and tumbling all over the place last year.

Now, she can't put on her socks or shoes. She can't pick up a dropped pencil off the floor. God, what have we done?

This was the last day of school and Jordan wanted to go to the party they were having. I was reluctant but I felt that was the least I could do to make her feel better. She had a great time and enjoyed the extra attention. I know this because I didn't take my eyes off of her.

I wanted my baby well.

The next test, the Pulmonary Function, took quite a long time. The technician was male but I think Jordan's interest in the equipment kept her calm. She spent at least an hour and a half breathing into a hose connected to a computer. She had to breath various ways over and over. Unconsciously, I followed the techs instructions and was out of breath long before she was. That made me feel better, at least it appeared her lungs were in good shape. The last part of the test didn't go well. She had to keep repeating it because he couldnt get a reading. After about the 6th try, he called in another tech and she tried. Still, no results. They checked the equipment and tried again, but with no result. Finally, we were told there was a malfunction, a part need replacing and that she would have to come back the following week to complete it. We agreed to return on the following Monday, however, we were surprised that a hospital of that size didn't have another machine or that they didn't keep extra parts in stock. We were glad to be going home.