We went shopping for school clothes. She got tired so we didn't get much but we got a start anyway. I will probably have to buy more without her.

We arrived late, but my sister and her kids all met us in the lobby. Apparently they had been calling the desk to see if we had arrived. They are so funny......they were all in their pajamas! Needless to say, Jordan spent the night in their room.

After we finished eating, we went back to the room to gather some things and left for the circus. It took us about 30 minutes to get there and when we arrived, there was a group of animal protesters. They were peaceful, but that was the first protest we had seen up close. The walk from the parking lot to the coliseum wasn't too bad on Jordan, but the walk back was a bit hot. The circus show lasted about 3 hours but Jordan said she was all right.

We went back to the hotel for about an hour. There wasn't much time to rest before we left for the Cardinal's baseball game. I dreaded the walk to the ballpark. Jordan looked tired. By the time we got to the top of the stadium where our seats were, she really looked bad. The August heat was getting to her and me. She looked like she was going to be sick so I took her back down to see if I could get her in air-conditioning. We found a pizza parlor and after about 30-45 minutes, her color was coming back. She decided she wanted a pizza, so I ordered her one. I tried to find someone with the stadium to radio up to the top floor to let our family know where we were. I thought it was too much to try to get her to go back up. Jordan looked better and since she doesn't appear handicapped, I got a strange look from the security officer upon my request. I actually asked the pizza clerk to radio up, but he found the security guy. The pizza clerk heard our conversation and was displeased with the security guys response so he offered to go up himself. He was very kind! I decided right then that we were going to get a handicapped tag for our vehicles before we went any place like this again.

By the time the game ended, it was dark and cooler, so she managed the walk back to the van easier.

When we got back to the hotel, Jordan said she wanted to sleep with us. I guess when she shared the bed with the kids, the crowdedness caused her to be sore the night before.

Dr C. cut back on her Prelone. She will begin taking 2 tsp tomorrow. The Imuran stayed at 2 1/2 a day. Her blood work looked better again. He also prescribed Tylenol with codeine for the pain. We are leery about giving her more drugs. We hope she won't have any more pain. She was too sore to take to PT today.

We went to PT but the therapist didn't have her do much. She performed the arm bike for about 5 minutes. That was all she did. The PT said the Dr had said not to do anything to make her sore, so since she was already sore, she didn't want her to do anything else.

We did go meet her teacher. I arrived early enough to talk to the principal and counselor about Jordan's condition. They offered to help any way they could. I made copies of everything I could find about JDMS. I also typed a list of the things Jordan could not do, such as bending down to pick up items from the floor. I made arrangements to check out 2 books for each class so that she wouldn't have carry them home each day. We located the biggest desk in each classroom so that she wouldn't have to sit down to low.

The MRI results came in all normal. The is nothing wrong with her back, so it must be weak muscles. When she moves too fast, it causes them to spasm. She's walking carefully and easing into and out of bed. We started letting her use a heating pad at night when she sleeps.

I stayed with her all day. I helped her from class to class (about every hour)and carried her back pack. She did real good. The kids were excited to see her and that made her feel good.

We left school at 3:00 to make sure we had time to get to the hospital for PT. She did good at therapy but by the time we got home, she was worn out. She wanted to take her shower at 6:30. Thats very early for Jordan. Getting out the shower, she had another spasm. Joe wasn't home yet, so I had to holler for Jennifer to help me get her into bed. She wouldn't even let me dress her. She was hurting pretty bad. She fell asleep early too. I'm so proud of her. I hope she will feel better tomorrow. It will probably take time for her to get used to the extra activity but we think it will help make her stronger.

She had her eyes checked by the school today. They are giving her different types of tests to see if she qualifies for therapy provided through the school. The nurse told me that she needed to be taken to an optometrist because she failed their eye exam. We knew the Prelone could affect her eyes but since she hadn't complained, we thought they were probably all right. I'll try to get an appointment as soon as possible.

We also met with the school PT. He didn't get to do much with Jordan because she was afraid to lay down for him. I think in order to build confidence in Jordan, he mainly just questioned her abilities. He agreed not to have her do anything but wanted to so that she would see him again. She liked him and agreed.

Her teacher saw me and told her she could go. I saw her putting her things in her back pack. I must have looked away for a second, because the next thing I knew, a little girl was at the door telling me Jordan wanted me. I looked back at Jordan and saw her falling. I ran to catch her just as she hit the floor. I did get there soon enough to catch her head and shoulders. She was having another spasm. I helped her to the floor. The teacher had the children go to the library. Jordan didn't want me to move her. She wanted her father. He was in New Braunfels and I knew I had to get her up. She must have laid there about 45 minutes before we could get her up. The counselor, nurse, coach, teacher and I waited until we could convince her we could get her up. They brought in a wheel chair. We finally lifted her to the chair. It took another 45 minutes to get her from the wheel chair to the car. She was so scared. I felt so bad for her. She had done so well all day, then this happened.

We had our first pool therapy scheduled for 5:00. I took her straight there. I went in to ask for help getting her in. The therapist said she would help as soon as she finished with the patient she was with. A few minutes later, she and her assistant came out to the van and helped take her inside. Once we got her in I changed her clothes as quickly as possible and we helped her in the pool. She was very scared but once she got in the water, she felt better about trying to move around. The therapist only had her perform simple movements like walking forward back and forth. She moved her arms back and forth and up and down. The therapist didn't try any trunk motions to mention. She wanted Jordan to feel comfortable with her and the pool. Jordan used to be a very good swimmer so I didn't think she would be afraid of the water. What she was afraid of was movement. She stayed in the water about an hour. Getting out was tough. Later, Jordan told me that she didn't walk up the steps, the therapist picked up to each step. The pool room was about 78 degrees but wasn't warm enough for Jordan. Even though I had a towel ready as soon as she got to the last step, she started shaking. She later complained that getting out and shaking caused her to hurt more. Her little body is so sore and tender, even the slightest movement caused her pain and or fear of pain.

She picked out some cute little glasses but it was going to take a while for me to get used to seeing her wear them. Her face has changed so much since the Prelone was started. Her eyelids are swollen and her face is so full and then with glasses, she really didn't look like my baby anymore.

Later that afternoon, I just finished helping her to the bathroom and she was looking into the mirror. She said "Mom, don't you think I look cuter with glasses?" I said she was beautiful with or without them. She then told me that she thought she was cuter with them. I was glad to hear of her being comfortable with them, I hoped that it continued, especially once she got to school next week.

She was scheduled for PT at 4:00 but we arrived early and they took us in. She had difficulty getting in and out but did well in the water.

We got to meet a little Indian girl with the same disease. In fact, I had spoke with her mother earlier in the month. The nurse from the JDMS research center had called to see if I would mind speaking with her. Her mother was very upset about her daughters condition and he thought I might be able to comfort her. The little girl was very quiet and bashful. She didn't have much to say, although Jordan was excited to get to meet her. Maybe we will get to see her again and get to talk.

That night, getting into bed was difficult.

The school PT, K, came again today. He convinced Jordan to let him show her how to lay down without pain. They practiced that and he checked her strength and ability to move for about 15 minutes. She didn't hurt much, so he won her over. After being told that Jordan had been sleeping with a heating pad, he suggested that when a spasm occurs to try a cold pack. Cold may to stop the immediate pain. (or it may just take her mind of it) Anyway, we'd try anything.

After I got her back to class, he talked to me about what they have to offer. He or his assistant would see her twice a week and alternative PE teacher would see her at least twice a week. Therapy is very expensive, about $2000.00 a month if we keep up the hospital and pool therapy and our insurance probably won't cover it. I was glad to hear the school could offer such services, though I wasn't sure 15 or 20 minutes a day was enough. Guess we'll just wait and see.

We went to therapy but the PT didnt have her do anything but the arm bike. Because she was already sore and the prescription said not to make her sore, she felt Jordan shouldn't exercise.

I am getting tired. I stay up most of the night looking for information about JDMS, or therapy exercise though books and on the net. I'm not getting enough sleep and don't know if I can keep this up.

She seems to be in worse shape than before we got treatment. What is going on? How can we help our baby? She can't walk by herself. I have to hold both of her hands, standing in front of her and Joe is holding her waist. We need help.

We had to put a stepladder in the shower so she has something to hold on to while I bathe her. She can't put on a car seat belt. She can't lift her legs to get them inside the car. She is getting so weak. She wants to take the van if we have to go anywhere because of the side-boards.

Jordan had an appointment with Dr. C. She always gets a little nervous about going. She did fine up until the Dr turned in his chair to say something and she thought he was going to say to lay down. Immediately she had a spasm. I hated to have it happen but I was glad that he was there to see it. We got her on the bed and he examined her. He felt that the spasms are caused by anxiety. He said he wanted to give her a prescription for it. He prescribed 1 tablet of Paxil daily (10mgs). He told us that we would be told by others that is was an anti-depressant but that that is not why he was giving it. It is also used for an obsessive-compulsive disorder.

He also prescribed Folic Acid (1mg daily) and Methotrexate (7.5 mgs weekly).

He decided not to reduce the Prelone this time because we told him we thought the high reduction the last two months was the cause of the spasms. We also told him the spasms were preventing good therapy treatments. We told him about her sleeping with a heating pad. He said that was fine but to be careful not to let her get burned.

We didnt go to therapy because of her upset stomach and soreness from the spasm. I know I should have made her go, its just hard when I know she hurts.