JDMS Juvenile Dermatomyositis Myositis

Jordan's JDMS Diary
July 1998

Wednesday - July 1: We went to work. Jordan was getting impatient. She could hardly stand waiting another day for her cousins to show up. To take her mind off of the wait, I took her to the store to buy some arts and crafts for the kids to play with. I thought we needed something for them to do, especially if Jordan has her way and they get to stay a week with us. She has been begging her aunt, so we'll see.

Thursday - July 2: My sister came with all her family. We were all eager to visit.

Friday - July 3: We spent the day around the pool just as Jordan had scheduled. The kids had a blast.

Saturday - July 4: We got up early to go watch the parade. We own a snowcone stand that we bought for the kids to operate in the summer, so thats where we sat since it is located on the parade route. The kids sat in the bed of the truck to watch. The had a good time even though it was pretty warm. The cooled of with snowcones, I think that had at least 3 each. (trying out as many flavors as possible) We went home for a few hours and then returned to watch the fireworks. The city park is down the street from the snowcone stand, so it was ideal. We got home about 11:00 so the kids were tired.

Sunday - July 5: Swam and ate all day! My sister had to go home but Jordan talked her into leaving the kids for the week. Again, NO is hard to say to Jordan.

Monday - July 6: The kids swam and ate all day long. The activity is really great for Jordan. She seem to being keeping up with them very well. Her swimming is good and she's even jumping off the diving board. She did go to PT even though she didnt want to. She zipped right through the therapy.

Tuesday - July 7: The kids continued swimming and making key chains out of plastic bead ironed together. I have no idea what we are going to do with them. They've each made at least 5 or 6. They are all having fun and Jordan has been on cloud nine. She was showing tiredness so my mother came to pick the girls up and take them with her. Jordan wasn't pleased, but she needed some rest and with the kids here, that wasnt going to happen.

Wednesday - July 8: I felt like I needed to get something accomplished since I had been very productive so I went to work and painted. We are closed for vacation so I was alone most of the time. It gave me time to meditate. I am so glad Jordan is doing so well. Other than the tiredness, she seems pretty much normal. I took her to PT and she had a more active therapy. She now rides a stationary bike, uses an arm bike(cant remember what its called), lunges and other stretches. The activities are mainly for stretching the muscles. Eventually she will start a strengthening process. We can't wait.

Thursday - July 9: Jordan has difficulty getting out of the pool. Stepping up is a problem for her. She doesnt have enough strength to lift her legs very high, but when she's in the water she does good.

Monday - July 13: We saw Dr. C today. He says her blood work continues to look good. Jordan is looking good except for the rash on her knees and elbows. The tend to look worse on some days. He prescribed Westcort cream. Her cuticles no longer look yellow and her knuckles look much better. They do have tiny little scars but he said they may fade. She is doing so well that he wants her to only take 3 tsp of Prelone. He also increased the Imuran to 2 1/2 tablets a day. Jordan has difficulty swallowing so we have been putting the tablets in a banana. She prefers chewing them rather than trying to dissolve them. What ever works!

Tuesday - July 14: Today is the first day she only had to take 3 tsp of Prelone. We are really excited because it indicates she is doing good.

Thursday - July 16: Jordan has had a great week. She got over the tiredness and is feeling pretty good.

Saturday - July 25: Jordan had a bad back spasm today. The pain was in her lower back. We're not sure if it really was a spasm or something else but she didn't want to move after happened for fear it would happen again. She was very quiet and still all day.

Sunday - July 26: Jordan complained of a bad headache and stomach and chest pain. She stayed in bed all day. She had no appetite and slept most of the day. We think it was fear of another spasm.

Monday - July 27: Jordan was much better today. She ate better and moved around the house more. She went to PT and did well. She did complain of being a little sore.

Tuesday - July 28: Jordan continues to complain about being sore but still had a fairly good day.

Wednesday - July 29: PT again today. She was getting around real good and feeling much better.

Thursday - July 30: She isn't eating like she used to but her appetite is more normal.

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Since 9/15/98

JDMS,Juvenile Dermatomyositis,Myositis,Auto Immune Diseases!