Jordan's JDMS Diary

August 1999

To Sherrell




Thank you Aunt Pat for remembering my birthday is this month! For those of you that don't know, my Aunt gets all the credit for making all my diary pages beautiful.She sets up the pages and I make the entries.I wouldn't be able to do this without her.I love you Aunt Pat!Thank you for everything!You are very special to me and Jordan!

August 7
Jordan returned today!We have missed her so much.She came running in the door and gave me the biggest hug I'd had in years. I think she was as happy to be home as we were to have her home.She had a wonderful time with my sister's family.One of her cousins had a swimming party for her birthday and Jordan loved it.They went to Dallas shopping on Thurday and my mother picked Jordan up on Friday.Jordan spent the night with my mother, visited my brother and his children and returned on Saturday. She looked a little tired but had no complaints.My only complaint was..........she was gone way to long!It's so good to have her back!!

I'd like to thank everyone who has kept Jordan in their prayers. She is doing so well.She has shown no signs of muscle weakness for quite some time.She seems to be back to her normal self.As far as her skin problems go, she has a slight rash around her forhead, but nothing very noticable.She is her happy-go-lucky self again.We feel very lucky to have so many people interested and concerned about her.We thank each of you and God for helping us through this ordeal.We pray that every little girl and boy with JDMS is on the road to recovery as quickly as Jordan. We will keep each of you in our prayers. Please keep signing our guest book and sending email.It helps us to know that we are not alone.

August 15
Jordan had a great time today. We took her to Schliterbaun, a near by waterpark. We met my Aunt Pat and her family. Her daughter and children and another cousin and his wife was also there. We also met Joe's brother and his family. After standing in line 2 1/2 hours for the first ride, I decided that was enough for me. Of course, Jordan couldn't wait to get on the next one. Most of the rides didn't have such a waiting line, but naturally, we had to ride the best one there first. Jordan enjoyed spending a lot of the day in Crystal River with her two younger cousins. I think she's had a great summer. She was able to do everything a normal 11 year old should.

August 16
Jordan spent the day visiting Joe's brother's family. They swam and rode four-wheelers. She looked a little red from all that sun, but she sure enjoyed herself.

August 17
Jordan saw Dr. D today. He tested her muscle strength and said it was very good. He noticed the slight redness from the sun. The little scars on her knuckles were more prominent and the forehead rash appeared a little worse. He decided to leave the Methotrexate and Immuran doses the same for the next 4 weeks. He discontinued the Pepcid as it was given primarily because of the Prelone. He also discontinued the Paxil which was originally prescribed for anxiety. He had felt that she might have been causing her muscle spasms she was having last year. We are so glad to get her off of some of the medication. We hope that the Immuran or Methotrexate will be reduced next month. Her lab work continues to come in fine, except that he is checking her iron count this month. Apparently, she may be anemic.

August 19
Jordan has been going to the beauty school with us lately. She loves to get manicures and pedicures, however, we've been to busy to meet all her request. She looks forward to school starting on the 25th. I hope everything works out easier for her this year. Since her new school is 3 floors, Dr. C. wrote a note indicating that she needs 2 sets of books, so that she can leave on in each classroom and one for home. Her strength is really good, however, the books are so heavy, he doesn't want it to affect her posture. It could already be improved. We are working on that.

August 24
After she put on her favorite new outfit and I fixed her hair Joe to Jordan to school this morning. She seemed eager and excited. When I arrived to pick her up in the afternoon, Jordan's attitude had changed. I immediately asked how her day was. With a big sigh, she said okay. I asked "just okay"? She was in no mood to answer any questions. I knew immediately what was wrong. Last night she tried to go to sleep by 8:30. She tossed and turned until she couldn't take it anymore. We tried turning on her stereo and a movie in her room but neither seemed to work. Joe, Jennifer and I had started to watch a movie. It was unsually late for us to start one, but we'd all been wanting to see it and just didnt get it started until about 10:00. I told Jordan to come into the den and lay on the couch hopeing she'd fall asleep. The poor little girl was so excited with anticipation of the first day of school, she didnt fall asleep until after 12:00. I knew she'd be tired but there wasnt much we could do about. I figured she would awake ready to go and would probably make it throughout the day. So her afternoon attitude should have been expected too. I'm sure she'll sleep well tonight and have a better day tomorrow.

August 26
Jordan has had a pretty good first week of school. Other than being tired the first day, she seemed to like her new teachers and her new school. She informed me that she doesn't intend on using the elevator or request a buddy to help her with her books. She thinks she can do whatever the other children do. That sounded ok with me, but I still insisted she not carry textbooks to classes. We had 2 of each book checked out and I want her leave one at home and one in the appropriate classroom. The books are very heavy, even for a healthy child, and she doesn't need the extra burden. She reluctantly agreed but stated that next year, she'd carry her books just like everyone else. I said we'll see.




You Are Visitor # Since 9/15/98