We went to PT and she did a little more.

I'm not taking her to school the rest of the week. I'm not sure if the weakness came from the extra activity of school or from the drop in the Prelone, but I know she has to get stronger or she'll get worse.

She also had gas build up again. She spent a lot of time on the toilet. I resulted to an enema, thinking it might help. I think it did.

She was a little constipated late in the evening so I gave her a childrens natural laxative.

I stayed with her until 3:00. I also bought a cold pack to donate to the school since they didn't have one.

We went to PT at the hospital and she is doing better there. She isn't quite as afraid as she had been to try to get back onto her routine she was doing.

Pool therapy went even better today. Jordan is really getting to know D. D puts her at ease. D talks about her canoeing on week-ends and about her sisters both expecting babies. Babies are right up Jordans alley. She just loves babies!

D had Jordan use some foam rings on her hands as weights. She is starting to try to build up the muscle strength. She floats on a noodle in the deeper end now too. She can get out of the pool so much easier now. She seems to be getting stronger. We cant wait!!!!

We went to PT and she is doing everything she was back in July. I am so glad. PT S found out she was using a walker and had Jordan practice walking up and down the hall. She looked much more normal and at ease about the 5th time.

Feeling exhausted, I decided to try to take a nap while Joe watched her. It didn't seem long after I fell asleep that I heard knocking at my bedroom window. I got up to see what it was and to my surprise, Joe and Jordan were on the 4-wheeler in the rain!! Joe looked as if he knew he was in trouble but Jordan had the biggest smile! I didnt have the heart to tell her to get off. He rode her around very slowly as to not hurt her.

About 6:00 she came into the room I was in wanting to show me something. She could lift her legs pretty high. On her own! She surprised me! I told her to try and put her foot on the chair seat. She did! Her ability to move is getting so much better. She is weak but her range of mobility is better than it has been in a long time. She even managed to tie her shoe! Maybe she won't be sore for long.

I made a call to Dr. C to see if there was something we could give her for the cold. He said Childrens Tylenol Cold medicine. Joe went to the store for some but found that it shouldn't be taken with Paxil. We were concerned, so I got on the net and found that Paxil also said not to use a cold medicine with it. It said not to take a cold medicine for at least 14 day after taking Paxil. We decided not to give it to her.

PT S decided to take it easy on her because of her cold.

She seemed to be much more congested today. We also noticed she was dragging and swinging her left leg out when she walked. She was developing a hunch back too. I mentioned it to the pool therapist and she had Jordan do some shoulder rolls and had her stand against the side of the pool to work on straightening her back.

We gave her the Tylenol Cold medicine. I hated too but Joe was afraid she would get worse. God, please don't let her get worse and don't let the Tylenol hurt her!

It's Jennifer's birthday. She had to cheer at the football game. We went but not before stopping off for some roses and balloons for Jordan to give her. Jordan made it down the steps to the fence to hand them to Jen. She hadn't been able to do that last week. Jen was surprised. After the game, Joey and his wife Tammy came over, Bryan (Jen's Boyfriend) and the rest of us sang Happy Birthday to Jen. She opened her gifts. Jordan gave her a pair of Tweety Bird house shoes and pajamas to match. It was late, so no one cared for cake.

Jordan had another great day! She woke up early, had breakfast and began sponge painting.
Then she wrote a few letters to her cousins, thanking them for their cards she had received.
Then we play volleyball with a balloon for arm exercises, she did some forward stretches in a chair and then I stretched her leg and hip muscles by lifting her knees. She really has gained movement. We are so thrilled.

Later, while I was on here trying to catch up, she asked me for the key to unlock the playroom door to go outside. The next thing I heard was a four-wheeler running. I jumped up and there she was,
propped up on that thing, smiling and ready to take off. Of course, I hollered for her to get off. She said she was much better and that she could ride.
I screamed for her daddy and told him to get on it with her. He just smiled at her and she slowly took off.
She went about 12 feet, stopped and informed us that she was going to ride it around the house. She assured us she would drive slow and be careful.
Her daddy smiled again and told her it was all right. I stood in shock.
We both stood watching her and could see her excitement. She hadn't driven one since before May. She is getting well.

Sunday - September 20

We got up early to go to Troy. It was Joe's mothers birthday. All of his brothers made it and most of their kids. We had a good time, although it was hot which made it tough on the colds. I went to Scott & White Hospital to she my Aunt who had surgery. She did well, thank goodness. Jordan stayed with her father and spent time with her cousins.

Monday - September 21

We saw Dr. C again today. Jordan was feeling pretty good until she had to get on the bed for him to examine her. Apparently she does have a fear problem because she immediately complained of not feeling good. I told the dr that I had taken her of the Paxil because of the Tylenol Cold medicine. He said it would not hurt her and that he felt she needed the Paxil and to start her back on it. He also decreased the Prelone to 8mls a day. We were glad that he only reduced it by 2mls. All of the other medications stayed the same. We are hoping to see no side-effects. We got back to town just in time for pt at the hospital. Jordan did everything she had done on Friday but with much greater ease. PT S added baseball and a tilt board. This was the first time Jordan tried the tilt board but she was able to keep her balance pretty good. Her walking is really looking normal. She does need work on her shoulders and posture. Her shoulders are rounding forward and her back is looking hunched. S said she would be working on that.

Tuesday - September 22

Jordan had a pretty good day considering she didn't get much sleep. Her cough was worse last night. She kept paging us because she wanted help getting up to cough. She didn't go back to sleep after 5:00a.m. She didn't want to go to school, but I encouraged her. She was walking very slow at first but by 11:30 she was getting around better. We went home for lunch and returned at 12:30. We arrived early enough for her to take Accelerated Reader tests on the library pc. She did well, 2 100's and a 90. We went home again at 3:00, rested awhile then went to pool therapy at 5:00. PT D had her perform quite a few trunk exercises since she has so much mobility today. She is really progressing well. We just need to get over the cold now. She started an antibiotic Dr. C prescribed (Augmentin). She takes 1 1/2 teaspoons twice a day.

Wednesday - September 23

Jordan was up early this morning, in fact she got up at 5:15 and didnt want to go back to bed. She read for quite awhile. We dressed and headed to school. We got out of the car and started walking to the front door. I noticed that she was walking so normal. I guess Jordan noticed me and smiled real big. She then said "Mom, I feel so normal." I told her she looked so normal. She then asked if she had to use the walker today. Of course, i told her no, but that if she got tired, to ask the teacher to get someone to go get it for her. She stayed until 11:30, and returned at 1:00. I picked her up at 3:00 and she informed me that she didnt need the walker at all that day. I was so glad to see her excitement.

Thursday - September 24

Same wonderful day. No walker! She did very well. The school PT assistant saw her at 11:30. She did some stretching techniques on Jordan, then had her sit on a huge physio-ball. The PT gently rolled the ball around and Jordan kept her balance. The idea was to rotate the trunk of her body. It worked and Jordan had no complaints. The PT then asked if Jordan wanted to go to hippotherapy. Of course, she did, so we left the school, stopped off for a happy meal and headed to the fair grounds. We arrived to find about 10 horse saddled and ready. There were about 3 children already riding. Jordan was fitted with a helmet. She was walked up a ramp to allow her to be able to sit on the back of the horse. She did it with ease, though probably a bit nervous. The horses were led by someone while there was another person on each side of the horse. She rode around the arena a few times, then she was given a ball to throw through a basketball hoop. She also play with a ring toss. She had a good time. She rode about 20 minutes. After the ride, we had to go straight to her father so she could tell him what she got to do. He was excited for her but said he could tell when she walked in. I guess the smell of horse and perspiration was a bit much. It was very hot, so we both decided to go home and take showers before PT at the pool.

Pool PT went well. D was off, so another PT assisted Jordan. The little Indian girl was already in the pool when we arrived. I spoke with her mother about how she was doing. The mother told me that her daughter's blood work wasn't good and that she was going to be taking prelone by IV beginning tomorrow. I also noticed very deep, dark stretch marks on the little girls legs. We don't know what she looked like before the disease, but apparently, she has gained a lot of weight and is embarrassed to go to school. Jordan and I both felt sympathy for her. I prayed that Jordans blood work would continue to get better and better.

Friday - September 25

Jordan had another great day at school. This is the 3rd day that I haven't stayed to walk her to classes. Its also the 3rd day that she hasn't need the walker. We went to Pt at the hospital at 3:30. She did a new exercise today. She and the assistant passed a soccer ball back and forth standing back to back. This was to increase her rotation at the waist. She played soccer and baseball too. She rode the bike, used the arm bike and rowed with the pulleys. I finally talked her into laying down for PT S. I wanted her to see that Jordan was not able to place her shoulders on the bed while lying flat on her back. I also showed her that her back seemed to curve. The PT said we would be working on stretching her front trunk muscle to correct this. She instructed Jordan to lay down every hour, straight out on her back for 5 minutes. I hope we can keep this up. Her posture really looks bad the way it is now.

I anticipate a great week next week for Jordan. I hope it is great for her.

Saturday - September 26

Jordan had another great day. She is really getting better. First thing this morning she and her daddy were outside playing baseball. Joe was pitching and Jordan was batting. No running of course. Then she and I played with a ball and scoops and soccer with a rubber ball. I think I got more exercise that she did chasing after balls. Jen came in and play some too. We have a few hours of ball games then Joe and Jordan made a trip to the snowcone stand to see Joey. Later that night, she and I made a trip to Walmart. She is sooooooo much better!

After she gave herself a shower, she put on her own panties and pajamas.

She had no complaints today, except that she was bored. I think we're getting our old little girl back.

Sunday - September 27

Another good day today. Jordan got up early and went to church with Joey and Tammy. She returned about the time we were having breakfast. While I cleaned the kitchen, she and Joe went outside for some more baseball. A little later they went swimming. Jordan actually swam today! Before she has just being exercising in the shallow end. But today, she actually swam under water moving both her arms and legs! After she showered, we worked on a school project then decided to go trim the rose bushes. She wanted to do it, so I let her try. She had difficulty cutting with the hedgers. After about 10 tries at cutting, she began complaining her chest hurt. We went inside and applied the heating pad. The nest few hours, she didnt move much. I stretch her arms and shoulders and it helped but she decided that maybe the pool would be better. She stayed in for about 30-45 minutes. She barely moved around the water. After she showered, she seemed to be a little better. She sat down to watch a movie with Joe and fell asleep. I hope she doesn't wake up sore tomorrow. I'm hoping to let her stay all day from 8:30 to 3:00. We'll see..

Monday - September 28

JORDAN HAD A WONDERFUL DAY! She woke up early and dressed herself. I did put on her shoes and socks for her. She took her medicine and ate breakfast. I was getting dressed and she said "Mom, you don't have to go to school with me today. Daddy can just drop me off." Surprise, Surprise. Joe took her to school and she stayed all day from 8:00 to 3:00. I did go check on her at 11:50 when she would be going to PE. I found out that she sat in the music chairs (without arms). She wanted to go to PE so I asked the coach if one of the kids could play ball with her. (some of the ball games she is doing at PT)He agreed. She said she had a good time and that the little girl offered to carry her lunch tray. I picked her up at 3:00, we stopped off at the hardware store to get a pulley for exercise and then went to the hospital for therapy.

At therapy she did the following: 10 mins arm bike, 10 mins stationary bike, 30 arm pulleys, 30 rowing pulleys, 5 mins soccer, 5 mins batting, 5 mins tilt board and 20 stretches with the elastic bands. A full hour of steady therapy!

She must have really been feeling good because she asked me if she could have a boyfriend. Ha! I said no. She could have a friend that was a boy, but no boyfriend. She had me call her daddy on the cell phone and his answer was "when you're 25!" She just laughed.

She managed to get in and out of the van when I picked her up, when we stopped at the store and again when we got to the hospital.

She also went to girl scouts tonight for an hour and a half. After she got home, she took her own shower and dressed for bed.

She had the best day ever. I am so proud of her.

Tuesday - September 29

Her days are getting better and better. She stayed at school until the bell rang. I did check on her at 11:20 and PT K came too see her. He was surprised at how well she was doing.

She went to pool therapy today and really had a workout.

Before she got into the shower, we noticed some veins showing on her chest. She wasn't complaining about them. But we don't remember seeing them before. The last few times that she has complained of pains have been in her shoulders upper back and chest. She describes them as tightening pains like the lower back spasms she was having in August. I hope these veins don't mean much, but I am going to call Dr. C tomorrow to check it out.

Tonight she received her very first phone call from a boy. She was so excited! I wasn't. (hahaha) The conversation was very short. She said they didn't know what to say to each other. Can't be true love because I never have a problem talking to her father. Now her father sometimes has a hard time listening. (hahaha) Anyway, like our hopes of the JDMS, this too shall pass.

Wednesday - September 30

Jordan woke up a little sore in her shoulders, upper back and chest. She used the heating pad for about 30 mins and seemed to feel better. She wanted McDonalds for breakfast, so Joe took her to eat and then to school. She had a good day, staying from 8:30 to 3:00. I checked on her at 11:30. She wanted me to have lunch with her. After we ate, we went outside for recess and she got to play 4-square, something that she hasn't done in a long time. She did well although she said the ball was a little heavy.

We went to PT at 3:30 and she did her usual exercises, except for soccer and the bike. Instead, she got to use the ZUNI! She was apprehensive at first, but found that the machine reduced the gravity and allowed her to hop. She had been trying to skip down the hall but had a hard time getting her feet off the floor. She enjoyed using the ZUNI but thinks it needs a new name, something to do with space. hahaha

I called Dr. C about her veins showing on her chest. He said they were probably caused by the steroids, since steroids cause the skin to thin. Jordan hasn't complained anymore than usual so we'll just watch her closely.

Jordan invited Joey over for dinner. She showed him her diary and told him not to leave until he signed it. (Haha, he did)

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