JDMS Juvenile Dermatomyositis Myositis

Jordan's JDMS Diary

November 1998

Sunday - November 1: Jordan is doing very well physically. She must have been thinking about the man that had passed away, because as I put her in bed, she questioned me about my father. My father unexpectedly died at the age of 52 of an aortic aneurysm when Jordan was only 18 months olds and naturally she doesnt remember him. I wish she did. She also questioned me about why we have to die and why people have diseases. I did the best I could to answer her, but I wonder myself.

Monday - November 2: Jordan stayed at school until 4:30 again today for choir practice. We went home to get ready to go to the Rosary. Jennifer and Jordan were both very fond of Mr. M. Since his daughter and Jennifer both played volleyball and are both cheerleaders, he attended every game. He was a very friendly and kind man to not only my girls but to everyone. We will all miss him dearly.

Tuesday - November 3: I'm really beginning to think that JDMS isn't such a horrible disease after all. Don't get me wrong, I wouldnt wish it upon anyone, however, Jordan seems to be defeating it so well. She has the best disposition. She hasn't complained about anything in quite awhile now. She gets so excited when she accomplishes even the smallest of physical activities. She can perform just about anything she wants to. She rides her bike, can skip, and even runs on the treadmill for about a minute at a time. She can lift her legs (laying on her back) higher than PT R can and there is nothing wrong with him. PT D took Jordans measurements today. Even though we have cut back on her therapy (from 5 days a week to 2+ days a week)she hasnt lost any range of motion. The measurements were the same or better than those taken in August. The only visible signs of muscle weakness are that her shoulders are still slightly turned forward and she appears slightly hunchback when she is tired. Her face is still a bit swollen looking from the prelone too. But her fears of spasms or getting hurt have practically disappeared. She will try to do just about anything.

Wednesday - November 4: Great day at school except that she was upset about getting a behavior check mark. She left her glasses at home and couldnt read the board. Her teacher saw her asking another little girl to read it to her and thought she was talking and not paying attention. Even though she explained to her teacher what had happened after class, Jordan was disappointed that the teacher embarrassed her by asking for her behavior folder without finding out what she was doing. I explained to Jordan that teachers must deal with children that do not behave throughout the whole day. I think she understood, but she decided she definitely won't forget her glasses anymore.
PT Assistant J was at the beauty school before we were. They worked together for about an hour and a half.

Thursday - November 5

Jordan's only difficulty today was putting down a library book for therapy. She did very well at PT. She even laid backwards and forwards over a large physioball. This was new to her and she was happy to see that she could do it. A cold front came in today, so she had land therapy instead of pool therapy. Even though the pool is heated, she couldn't bear the thought of putting on a swim suit. (Haha)

Adaptive PE teacher M came to see her at school. Jordan likes her even more now that she found out that she has two little girls. Talk to Jordan about babies or little children and you've got her attention!

Joe took Jordan to the high school bonfire tonight. I made sure she wore her heavy coat, gloves and her hood. The temperature was suppose to get down to 30 degrees. Being Texans, we dont get that cold to often and with Jordans immune system down, I didnt want to take any chances.

Friday - November 6: After I picked Jordan up from choir practice, we went to my office until 5:30, then headed home to get dressed for the homecoming game. The schools homecoming was scheduled for a few weeks ago, but because of the flood, it was changed. We went to the game even though it was drizzling and cold. It was parents night and we were introduced with Jennifer. Jordan stood beneath the stadium in front to video us. We stayed until halftime and watched the crownings of the kings and queens. Then Jordan and I went home to warm up.

Saturday - November 7

Jordan had a great day. No signs of sickness due to the weather yet. I hope she doesnt come down with anything since we spent time in the cold. Since her immune system is weak, I try to keep her as well as possible but I couldnt disappoint Jennifer and Jordan wanted to go, so finding a sitter was out of the question.

Jordan did some stretching on the floor tonight. She usually hates to get on the floor, but her daddy and I talked her into it. She is getting so much better. She doesnt have quite as much trouble getting up and down as she had been. Her neck muscles are stronger too. She had been having trouble laying down without a pillow, but she can now. Today she rode her bike, lifted weights (5lbs a few times) and showed me how Adaptive PE treacher M played with bubbles with her yesterday. Apparently she get to blow bubble then try to catch and kick them. This exercise helps with her range of motion.

I forgot to mention that being this week, on Mondays, Jordan has a high school girl comes visit her during PE. The girl is in the Pal program and will help Jordan do some exercises that the PTs gave her. They copied, cut out and laminated some pictures of exercises for Jordan to perform. (Jordan likes all of them, but she didnt like the idea that the pictures were all of old people. (hahah) Jordan will now have someone work with her everyday at school during PE. I really appreciate everything everyone is doing for her. They're all very helpful and Jordan really likes each of them.

Sunday - November 8: We left early this morning to visit Joe's father. He will be admitted into the hospital on Tuesday to remove another cancerous tumor in his mouth. They will be taking out both lymph nodes. He just recently bought some land at Lake Limestone, so we drove about another hour and a half to see it. Two of Joe's brothers were already there. They are clearing the land for him. It is a very pretty piece of property. Joe's father has always likes spending time near the water. I hope he gets well soon so he can enjoy it.
Jordan tried fishing but didnt get to catch anything. She was hoping to catch a turtle to take home. I'm glad she knew that the only turtle caught was a snapping one. (Hahaha)

Monday - November 9: Jordan had a great day at school. I was afraid that she might get sick because it had drizzled and was cold yesterday at the lake. Fortunately, she wasnt. Her Pal came again today. They played checkers during PE. (not much exercise there) I picked her up around 2:30 to take her to have her blood work done. We used the Emla and it went great.
We were home about an hour before Joe left for Temple to be with his father. His surgery is scheduled for 8:15 in the morning. I wish we could be with them, but I have to work. We will be praying for him. Jordan cried when her daddy left. I did too. We seldom spend any nights away from each other.

Tuesday - November 10: Jordan did well as usual. After school I took her to PT. I haven't been reporting her PT in the PT section of the diary lately because they haven't kept a flow sheet. They were testing her abilities on many different exercises, so it would have been hard to record. PT D began a flow sheet today, so I will start entering those again.
Jordan, as well as the rest of us, was pleased to hear that her grandfather went through the surgery well. He was walking and talking by 8:00 in the evening.

Wednesday - November 11: When I arrived at Jordans school, I found her on the play ground playing with a group of girls in a circle. They were playing some type of ball game. Jordan looked as though she belonged on the team!
PT assistant J met with Jordan about 4:00 at the beauty school. Around 5:20, Jordan called me out of my office to see what she was doing. To my surprise, J had her running up and down the sidewalk. She ran about four 30 foot laps for me. She looked real good. She still needs practice but she is getting better. Jordan thinks she is ready for regular PE classes at school. I think that would be good for her, yet there are still things she cannot do as well as she should so I am leery about canceling the school PT. I may request she start attending PE classes once or twice a week instead of adaptive PE. We'll see.

Thursday - November 12: It was raining and cold today so I expected Jordan to opt for regular therapy instead of pool therapy, but I was wrong. She never said a word. She did very vell in the pool too. Assistent E helped her for the first time. She is very nice and thorough. Jordan got a good workout!

Friday - November 13: Same great day as usual. Stayed at school from 7:55 to 4:30. She had choir practice and came home singing away. haha She talked us into letting her spend the night with a couple of friends from school and girl scouts. We agreed before we gave it much thought. We usually don't let our children spend the night anywhere but with close relatives. Felt funny not being able to check on her in her bed.

Saturday - November 14: Jordan came home excited because she "got out of the bed normal". She usually rolls to her stomach and pushes herself of the side of the bed. She felt that this way helps prevent her from having spasm or back pain. We just let her do it because she felt comfortable with it and she was doing so well. She wants to be normal so bad. She did some stretch on the bed herself.

Sunday - November 15: This morning we drove to Temple to visit Joe's parents. His father is doing very well. Jordan spent most of the day playing with her cousin Brittney.

Monday - November 16: Jordan had a good day at school. Still gradually getting stronger.

Tuesday - November 17: After picking Jordan up from school, we went to PT. She worked out pretty hard. After PT, we went to San Marcos to watch Jennifer play basketball. The game didn't begin until 8:00, so we ate at one of Jordans favorite restaurants, Red Lobster. Jenn played very good. She is a starter on the varsity team, something she has always dreamed of. She will have games about twice a week and they usually dont begin until 7:30 or 8:00 which means that we will be getting in late. I hope this isnt too much for Jordan. We'll have to wait and see. If it is, only one of us may be able to go.

Wednesday - November 18: PT assistant J came by again today. Jordan had mentioned that one of her 4th grade teachers had picked her up today to hug her. It scared Jordan but it didn't hurt her. J decided to show Jordan that she can be picked up without getting hurt. Unfortunately, that didnt work. Jordan did hurt when J picked her up. Both Jordan and J were disappointed.

Thursday - November 19: Jordan was sore today. I guess from the "picking up". She had pool therapy instead of land, so that will probably be good for her.
This hasn't been the best of weeks. Jordan's sore and Jennifer is sore at her boyfriend. She broke up with him Sunday (after a 2 year relationship) and I've been worried about her all week. Worring definitely makes one tired.

Friday - November 20: Jordan still complained about being sore today. She was at school until 5:00 for choir practice. At 7:00 we went to watch Jenn in a basketball tournament. Jordan seemed more tired than usual.

Saturday - November 21: The tournament continue today. I made chicken salad sandwiches for the coaches hostess room. Jordan gobbled down a few of them before I could get them wrapped. We spent the day at school watching the games. Jordan seemed to have recooperated.

Sunday - November 22: I took the girls shopping today. We all needed a change of atmosphere and Jordan has been wanting jeans. She has lost her waist since being on Prelone, so her old jeans don't fit anymore. We had a hard time finding any to fit her. She needs a girls 10 to fit her waist, but 10's are way to big in the hips, legs and length. She was very disappointed. At one point, she looked ready to cry and insisted she be taken to the van to sit with her daddy. I felt real bad for her. I had hoped we could find 8's with an elastic waistline but had no luck. I finally did find a cotton pair of "in style" pants for her. She finally found a smile and seemed happy. We have got to work on her waistline. I knew JDMS would stunt her growth. She isn't nearly as big as most of her classmates. I didn't think this was much of a problem until today. She wants to be able to wear what the other kids are wearing, (jeans, jeans, jeans,) and I couldnt find any brand that came in waist and length size variations. She could wear a size 8 if she just was a little thinner in the waist. We'll have to work on it so she wont have to wear elastic stretch pants and leggings. We've got to get her back "in style"! haha

Monday - November 23: We picked Jordan up at 5:00 from choir practice. She was tickled that the kids noticed her new pants, shirt and shoes. We headed straight for Austin to another basketball game. We didnt get home until 10:45. She fell asleep on the way home.

Tuesday - November 24: No complaints today. After school, we went to PT. After we got home, she rode her bike awhile and them played some basketball with her daddy. Then she and her daddy went to watch Jenn cheer at the varsity boys basketball game. The late night didnt seem to bother her.

Wednesday - November 25: No school today! I took off too. We're going shopping!

Thursday - November 26: Happy Thanksgiving to you all! Thanks to God, our family has so much to be thankful for.

Friday - November 27: No problems except we all ate too much!

Saturday - November 28: We went to Jen's game in Wimberly. Afterwards we shopped with Joe's brother and girlfriend. Lots of walking but Jordan didnt mind.

Sunday - November 29

Today we went shopping again in Gruene. Jordan is still doing well.

Monday - November 30: Jordan stayed at school until 5:00 for choir practice. She seems to be able to put in long day without any problems. She does usually go to bed between 8:00 and 8:30. We used to have to make her get in the bed, before she got sick, but she more than ready now.

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Since 9/15/98