School has started for Jordan too. She is now a big middle school girl. She loves her new school and seems to be having a good time. She is a member of the Spirit Squad and has had fun making posters and T shirts. She gets to cheer at the school football, basketball and volleyball games. She hopes to tryout for cheerleader and mascot next year.

The best news pertaining to school is that she not only is capable of walking those big long halls and carrying a heavy backpack, but that she made the volleyball team! She is on the B team and so far, they have won every game. She doesn't quite have the strength that some of the bigger girls do, but she can really control the ball. She serves underhand but is working on the overhand serves her coaches prefer. She's a pretty good player if I say so myself.

Her medications have stayed the same over the last few months except that her Solumedrol treatment was reduced on September 12. She had been taking 250mg a week from January through July. In July it was reduced to 150. After only 8 weeks, Dr C. felt that she was doing well enough to reduce it to 100mgs a week. The big problem we have right now is her plantars warts. She has about 30 on one foot. During the day, she is busy with school and sports and friends, so they dont bother her much. But, occassionally at night, she will wake up in pain. They are really difficult to cure right now because her immune system is so weak from her medication.

Of course, I hate to see her hurt at all, but as I think back over the past 2 1/2 years, I know we have come a long way. We've dealt with some tough times and cried many many tears. It brings tears to my eyes now to think how blessed we have been. She is doing so well. Jordan is feeling good, physically in good shape and confident. She has been a brave little girl. She takes her medication and IV treatments better than I think I would. She knows they are making her better and thats exactly what she wants. We all have great expectations for a happy healthy life for her.

I appreciate those of you who have taken the time to sign her guestbook and email me. Your kind words touch my heart. I wish I could reach out and hug each little child I hear about. I wish I could look every parent in the eyes and say "Its going to be ok." I wish I could say there is a cure for JDMS.

I can say that my baby is Great right now. She can physically do what every she wants to do. She has a great attitude that makes me proud. Thanks to God, medicine and proper treatment, Jordan has come a long way. We will continue pray that she will go into full remission and be able to get off all the medicine she takes.

We deeply appreciate your prayers for her and every child with JDMS or any disease. As always, those children are in our prayers.

September 18

Happy Birthday Jennifer! We love and miss you very much!

Jordan had a rough time last night because of her plantars warts. They just wont go away. This morning we took her to our family doctor and he cut off some of the calluses that have built up. Of course, that wasnt painless. Her foot is very tender so she can hardly walk. She missed school today and wasnt happy about that. I think her biggest concern was missing volleyball practice. Hopefully she will feel better tomorrow. I gave her a Tylenol PM in hopes that she might sleep better tonight.

Since I began writing this diary, I have received lots of email from parents, friends and family members of those facing JDMS. Each letter touches my heart. Today I got one that I thought I would share. It gave me a greater sense of hope that there is an end to this sometimes rocky road that we are on right now.

Thank you Melanie for putting a smile on my face! (I hope you don't mind me sharing your message)

Hi my name is Melanie and I was diagnosed with Dermatomyositis when I was 5 years old. I have since out grown the disease and I am a healthy active 17 year old. Unfortunately I still suffer some of the consequences from the medicines. If you have any questions or if Jordan wants someone to talk to about going through this I am here and maybe I can help somehow. If there is anything I can do let me know in any way.

Melanie, you may not know it, but you've already helped in the best way.......by being a Healthy Active 17 Year Old! God bless you!

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