We then went to the pediatric ward where she had a chest x-ray. That went just as well, except that we had to repeat it because the first was clear enough.

While waiting between x-rays, Jordan got to meet a little boy name Roberto from Mexico. He was about to go through an experimental surgery. He was tiny little boy for 6 years old with a good disposition for not being in very good shape. We had a few hours before the next appointment, so we walked across the street because Jordan wanted to buy him something. She picked out a T-shirt that had Texas printed on it, a coloring book and some crayons. When we returned, he had already been taken back to see the Dr., so we had to leave the gift with the nurse. I can't really remember what all was wrong with him and regretfully, we never found out how his surgery went. But, he did help my little girl. Although she never compared herself with him to us, Jordan realized that things could be worse. In the weeks following, she told many people about meeting him and that she hoped his surgery went well.

She was scheduled for an MRI at 2:45p.m. Dr. C realized that Jordan was nervous and would probably have difficulty laying still for an hour so he prescribed 1 mg Lorazepam tablet. We gave it to her about 30 minutes before the appointment. The center was near the hospital, so we arrived early. Once we got back to the room, we were told that if she hadn't had a thigh x-ray, one would need to be made so that they could compare the two. The x-ray was taken first then we were taken to the MRI room. I had never seen the machine and felt a little apprehensive myself. Fortunately, I was allowed to stay in the room and even hold Jordan's hand during the entire event. She did well considering the noise we had to tolerate. I'm sure she managed to stay still during the whole process because we had been told that if she moved, we would have to take it over. Once was enough! I was the only one who walked away sore, as I had to stand in an awkward position to reach her. We were all glad the day was finally over.

We were also scheduled for another Pulmonary Function test at North Central Baptist Hospital. We arrived early to go through the admitting process. Once we were admitted, we were taken to the Respiratory Department. We were introduced to a very nice female technician. She explained everything Jordan was to do and why. Jordan went through the same type of breathing exercise she had done at Santa Rosa. Then at the very end, the tech began indicating a problem had occurred. Immediately we got concerned. Why was the machine, supposedly, acting up at the very same spot as the other? Was it acting up or was something terribly wrong with Jordan? The tech had her superior come in and look at the machine. He had Jordan perform the last part of the test again. The same results, something was wrong. I questioned him as to whether something was truly wrong with the machine or was the machine indicating something truly wrong with Jordan, that it couldn't provide a result? He didn't think so, but to verify his conclusion, he took the test himself. We were relieved to find the same results. Apparently the machine was malfunctioning. Since he knew this was the second time this had occurred to Jordan, he offered to call North East Baptist Hospital to request that hospital complete the test. NEBH agreed and told us to come right over. Nervously, we drove to the hospital. We were taken into what seemed like a private office area. There was a machine in the room and Jordan performed the last part of the test for the third time. Finally, a result was available. The machine worked. We were relieved.

Later that evening, we noticed Jordan had a few little red spots on her chest and back. We were alarmed as we knew that chicken pox was a concern for children with JDMS. Dr. C had asked on the first visit if she had her immunizations up to date and if she had had chicken pox. We said yes, but began to wonder once we saw the spots. She had been exposed to a friends son not long ago. That night, Jennifer and I went through family pictures to see if we could find one showing Jordan with chicken pox. I had already called her school nurse, our family doctor and the daycare she had attended to see if anyone had actual records indicating so. No one knew for sure. Her father and I both thought she had, but we wanted someone else to remember. We decided she would be taken to the doctors office first thing in the morning.

That afternoon, we went back to work. We are self-employed and have luxury of taking her with us. She spent most of the day sharing my desk. She colored pictures for her father and I. She acted more like herself that day, asking for candy and drinks from the vending machines. She tried to answer the phone and run the cash register. Of course, she got to do just about everything she wanted.

We were glad that there was nothing to be concerned about, yet not knowing what was going to happen tomorrow was troubling.

I was so glad we had this appointment though. We met another little girl with the same disease. I got to speak with her mother for quite a while. She had been diagnosed in April, 1997. By the time she was diagnosed, she could not roll over in the bed by herself, much less walk or bend over. She was walking and performing various exercises that day. She had progressed to about the level Jordan was at. She looked weak and had difficulty stepping up on a box. The therapy she was getting was more difficult than Jordan's but I felt, with effort, Jordan could perform those activities. I was happy to see that the little girl doing well. She had been home bound for school, then graduated to a wheel chair and had an assistant help her get from class to class when school had ended. Her mother was pleased with her doctor who happened to be Dr. C. Apparently he is the specialist to see in our area.

Dr. C checked Jordan physical capabilities. We thought she was about the same but he said her blood work had improved and that she looked better. We were extremely glad to hear about the blood work! Of course, like every visit, she had to have more blood drawn.

We asked about the Pulmonary Function test results. Dr. C said that he hadn't received the results yet. He didn't seem too alarmed, but we thought he should have already had them and furthermore, we didn't want them lost. I was going to check on it myself as soon as I got back to town.

I also called our local hospital and spoke with the PT department head. She was very helpful and scheduled Jordan for Monday at 2:45. We did take her to San Antonio for the 1:30 PT. Not much change in therapy.

I spent the day thinking about my father. He passed away suddenly in 89 at the age of 52. He had an aortic aneurysm. Jordan was just a little thing, about a year and a half. I wish she could have known him better. He used to say that "babies are the best kinds of people". He really loved his grandchildren.