After school, we went to an ARD meeting at the school. Her teachers, principal and therapist were there to determine her needs. The offered to give therapy 4 times a week. I'm so glad. They will be seeing her during her PE class.

No pool therapy as they drained it for cleaning, but she did get in our pool and also performed some exercise with the pulleys and some light homemade weights.

I can's seem to get enough sleep, no matter how much I get. I think I might be going into a depression. I'm trying to fight it, but I just feel so blah. Too many things happening at once I guess. I have an aunt in the hospital for colon cancer. She's had 3 surgerys in a week and not doing very well. Before she went in, she told me not to worry about Jordan because she knew that God had answered her prayers for her. She said that she didn't think he heard hers about herself. I sure hope he did. If not her own prayers, I hope her heard mine for her.

I also read some Dermatomyositis personal stories on the internet a few days ago that I wish I hadn't. I saw an unscientific survey that indicated children with JDMS suffer as long as 7 years. I just hate to think of my baby having to go through that. The stories indicate that the people go through stages of getting better then worse. They seem to be fine one day then a month later, they can hardly walk. I don't want that to happen to Jordan. I want her to get better and better. I want her well now. I know much of it has to do with the reduction of medication. It's a guess on how much to reduce it. If it's too much, they get weaker and it has to be increased. I don't want to play the guessing game. This isn't a game at all.

I've made up my mind to get her as strong as she can get. I don't want to over do it, but I want her strong so that if she gets worse, it won't be so hard for her to gain her strength back. I've made up my mind that she won't have to go through this ordeal for 3 years, much less 7. I pray God will help me help her.

About 30 minutes after she got to school, I got a call from the nurse saying Jordan had a temperature of 101 and was complaining of chest and shoulder pain. I rushed to the school, finding Jordan in a wheelchair in the nurses station. Jordan said she was fine until she returned to class with the rocks and got a spasm between her shoulder blades. She said she couldn't breathe and she was sore and afraid to move.

I wasnt sure what to think of the temperature, so I took her immediately to our family doctor. He checked her vital signs, ears and throat. No temperature. He said she had a lot of sinus drainage and prescribed Claritin. About 30 minutes after we got home, you couldnt tell Jordan felt bad at all. She seemed to be fine the rest of the day. We exercised for about an hour in the evening and she chatted on ICQ with her cousins.

I think the school nurse is so concerned about Jordan's illness, she isn't going to take any chances. I'm glad about that too. I think Jordan has hurt so much with spasms, she is afraid to move after she has one. I really don't think this one was as harsh as the others have been, but Jordan feels better when she is with us when they happen. The spasms haven't occurred as often and hopefully we won't have to deal with many. I hope that the stronger she gets, the less she will have.

Its sometimes very stressful when your child is sick. Thank goodness for family. I had a relaxing ICQ chat with a loving sweet aunt tonight. It is so good to be able to talk to someone that lifts your spirits. I know she'll see this, because she helped me set up the diary, so I have to say: "I love you, Aunt Pat. Thank you for everything you have done for me. You remind me so much of my Daddy. You give me the strength that he would if he could be here. I do love you."

After school we came home and she read awhile and also got on the internet. At 4:45 we left for pool therapy. She did very well. She worked with another PT today because D is taking her day off on Thursdays. She really likes D, so we may need to rearrange her therapy days. Jordan did alright today but she prefers females and the new PT was a male. I think because the men are more vocal, if makes her a bit nervous.

Jennifer took Jordan to the County Fair tonight. I'm a little nervous, as we normally don't let any of the kids go alone. Joe thought it would be good for them to spend time together. Both girls were told not to ride anything that was too jerky or rough. They were also fore-warned about being careful going back to the car. Our fairs are usually safe since we live in a small town, so I'm trying not to be too concerned. (I can't wait til they get home!)

Jennifer is a high school varsity cheerleader and was in the county parade this morning, so we couldn't miss it. The cheerleaders threw out footballs to the kids watching. Of course Jennifer had to save the last one for her sister. Jordan was so excited. She had been wanting one for some time. We went to PT at 3:30 and Jordan did very well. She even skipped without the Zuni! PT S was excited as I was. We also went to the football game! We lost the game, but we had the best seats. Right up front at the 50 yard line. (Could see Jennifer perfectly) Jordan fell asleep on the way home. A big day for such a little girl.

She got a surprise visit from my brother, David. He stopped by late but she was very happy to see him. I even had to take pictures.

I am so excited! Jordan seems to be returning to her normal self, trying to accomplish more and more each day and the lab tests are great. We will continue to do her home exercises and work on getting her strong.

I hope you won't get too bored with my diary entries, but I anticipate a normal healthy little girl very soon. We have a 12 foot Christmas tree and I'd bet that by the time we decorate it, Jordan will be able to climb the ladder to put on the star.

Joe was discussing Jordan's disease with a bank employee and was told that her co-worker had just taken her son to Dallas for a muscle biopsy. The boy is apparently having muscle weakness similar to Jordans. He's in the 4th grade and happens to go to Jordan's school. I don't know him or his parents, but first chance I get, I hope to find out the diagnosis. This is really strange. We already know of the little indian girl, and by the way, she hasn't been doing very well. She spent some time in the hospital according to the pool PT.

Anyway, makes me wonder..........just how rare this really is. There is 2 and possibly 3 children here in our little town with JDMS. mmmmm.......

PT A came to her school today and practiced squats with Jordan. She brought a UT Medical Science PT student with her. He was there to observe. I'm sure he doesn't see this disease very often. In fact, many of the PT's in our area are really getting an education on JDMS.

I also visited my aunt who has been at Scott and White Hospital for a month. She had colon cancer and ended up having to have 3 surgeries within 2 weeks. Even after suffering a stoke after one of the operations, according to her doctors, she is doing well. Our prayers include her as well.

We had been told that the Guadalupe River had risen and created quite a mess in our little town and the surronding communities. Joey told us that our city park was flooded and most of the bridges were inpassable. We decided to purchase some gallons of water just in case the water wasnt back on by the time we returned. We had absolutely no idea the extent of the damage. Jordan and Jennifer wanted to ride around to look at what had happened. We drove through neighborhoods that looked like tornados had hit them. I was totally speachless. 30 minutes was all I could take. I wanted to go home. I couldn't bear to look at those helpless people look at their loss. I cant begin to discribe the devastation.

Time almost got away from me, we left at 3:00, just in time to get back to the school to drop of the students and get to the hospital for Jordans therapy. She did very well. She is even running, although at a slower than normal pace. She's able to get up and down from the floor. She is doing remarkably. I'm so excited for her. After therapy, we went to the grocery store and picked up some bread and lunch meat that the Red Cross had been requesting. We'll drop it off in the morning.

We received a letter from our insurance company denying any extra assistance with therapy oor medication. (Policy states on $500 per year for therapy and $1000.00 per year for prescriptions) I was hoping that they could offer additional coverage but they couldn't. Since the hospital therapy exercise can be done at the pool clinic for less than a third of the cost,($420 per week verses $140)we will have to take her there. We knew Jordan wouldn't like the idea since she had become so attached to the assistant J. She did cry. We explained why and she understood, yet she wanted me to see if J would come see her at home each week or at the beauty school. I told her I would.

Jordan had her last day of hospital therapy. She seemed happy and excited but only because she knew I would pay J for visiting and working with her. J agreed. I think J has become just as attached. I thought she was going to cry too. Anyway, J is going to come by the beauty school every Wednesday around 4:45. Jordans happy and will receive at least 3 days of therapy, plus the 4 30 minutes sessions at her school. We should be able to pay for the services and still survive.

I feel for any middle class families that have to deal with the expenses. We make too much for government assistance but not near enough to pay $1500+ a month for therapy. By checking prices, it can be reduced to around $600 at a private clinic. I don't know why the hospital cost is so much more, but our local hospital was less that half of what Santa Rosa Childrens hospital was charging. We started out being billed $400 an hour in San Antonio, then $140 an hour locally, and finally $45-$60 at a private clinic.

I have great trust in PT S and was leary of deleting the hospital all together because she had worked with Jordan so long and knew her capabilities and limits, but now that she is doing so well, I feel sure she will continue to progress. Too, I have her therapy records and will see that she continues those at the clinic.

We also visited my aunt at Scott and White Hospital. She is doing much better and hopefully will be released within a few weeks.

Another surprise: PTA J stopped by to see her. This is a very special young lady. I think she may be attached to Jordan as much as Jordan is attached to her. I'm so glad that she is giving Jordan this extra attention. J asked if she could pick Jordan up from school tomorrow and take her to the hospital to deliver the girl scout sales. I agreed which made Jordan very happy. The encouragement J gives her is fantastic and her sincerity warms my heart. For only being 17, she is so thoughtful. I expect their friendship to last for many many years to come.

I took her to the clinic at 4:00. She had the male PT work with her again today. Jordan did land PT instead of water. I think we will be doing land on Tuesdays and water on Thursday for a while to see how she does. She layed backwards on a physio-ball for stretching. This was the first time she had done this, so I was somewhat apprehensive, but she did very well. She also balanced on a plastic board with an attached ball underneat it. She ran and skipped on the treadmill. She had a very good workout. She was tired when she finished, but no too tired to go watch her sister cheer at the volleyball game. She amazes me.

After we got home, Jordan changed her light-weight notebook to a regular looseleaf notebook. She decided she was strong enough to use one like all the other kids use. She really is getting stronger and more confident.

Jordan weighs 67lbs according to our scales. She seem to feel heavier when she sits on my lap, but I guess not. She has the best disposition for someone with such a terrible disease. She is so excited each time she accomplishes something else. I think her attitude has a lot to do with helping her beat JDMS.

I read that Julia has a rash that seems to disappear after taking methotrexate. So I began to watch Jordan more carefully. She hasnt had the JDMS rash in quite sometime but I noticed a patchy rash on her forehead the past 3 Thursdays. It seems to go away in a few days. I think the methotrexate is causing Jordans. I'm going to keep an eye on it and ask the Dr when he returns. (Dr. C is in China adopting a new baby, so we wont see him again until December.)