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Jordan's first doctor visit for the year 2000 was Monday, January 10th. Our fears became a reality. Her aldolase was 10.1. Her rash has progressively gotten worse over the past 4 months and her cuticles are yellowing and hard again. Dr. C tested her strength and felt that her left leg has become weaker. He wants to attack the flare-up aggressively and beginning on next Tuesday, Jordan will receive 250 mgs of Solumedrol by IV. He ordered x-rays of both arms and legs as well as a MRI of her pelvic and thigh areas. Tuesday, the 11th, I took Jordan to our local hospital for the x-rays. The technician took about 25 films. The x-rays included from shoulder to wrist on both arms and from pelvic to ankle on both legs. After he examined them, he asked me what was wrong with her left elbow. I had no idea what he was talking about. I believe this was his way of informing me that she had calcifications in that one area, which appears more rashy anyway. I'm not clear yet on what that means. I believe that calcifications are a late sign indicating the disease is nearing it's end.............I hope I'm right. I have to do more research. I've not been spending much time on researching it because I felt it was under control and behind us. Wednesday we took Jordan to San Antonio for the MRI. She was so nervous she couldnt lay still enough for the test. She also has difficulty laying flat on her back with her legs extended straight. Needless to say, we had to schedule another appointment. She was upset because she thought we were disappointed in her. We were not disappointed in her at all. I guess our concern was showing and she took it the wrong way. She is so precious to us. She couldn't disappoint us if she tried her hardest. Thursday, the 13th, we made the trip again for the MRI. It went very well. They did mildly sedate her and she was a brave little girl. The Radiologist and his staff were so helpful. After the MRI, the Dr. that reads the MRI questioned Jordan about pain. My first thoughts were that he had never seen such poor muscle or calcium results from an MRI. (I thought he probably wasnt familiar with JDMS) Jordan told him that she has little to no pain in each area he questioned. To my surprise, he informed me that her MRI was completely normal. There was only one area that could have been soft tissue or calcification but that it looked like she had moved and he felt it was just a blurring on the film. I was so relieved! I really am lost. They have the newest up-to-date MRI machine in Texas. There suppposedly are only 2 new ones in TX and we used one of them. I don't know what to think. Is the disease ending its course? If so, why does she have yellow hard cuticles? Why does her rash look so bad? What about her other lab tests? Is the aldolase so important? So important that 250 mg of Solumedrol necessary? I'll be on the phone tomorrow with Dr. C to find out. I'll try to get in touch with the JDMS registry nurse Ed too. More importantly, I'll be on my knees again tonight. Friday - January 14 First thing this morning I was on the phone. I first spoke to Ed at the Children's Memorial Hospital in Chicago. He has always be so helpful each time I've spoken to him and he was no different today. He really eased my mind. Thank you Ed for your valuable time! I really appreciate being able to talk to someone so knowledgable about JDMS and with compassion and sincerity. I now feel confident that Dr. C is doing exactly what is necessary for Jordan. According to Ed, IV Solumedrol has been very successful in regaining control of JDMS flare-ups. He also explained the calification questions I had. Apparently calcifications do occur late in the disease but if I understood correctly, that doesnt necessarily indicate the remission is near. It can, but it can also mean that the child has had the disease for quite some time. We know in Jordan's case, she developed the rash over 2 years prior to a correct diagnosis. I would much prefer to think that we are near the end, but I need to know the facts. I spoke with my family physcian's office next. I was given the complete results of the x-rays taken on Tuesday. This is signs of calcification on both of Jordans arms. Her right humerous and forearm have some. Her left elbow has a more prominent amount. I left a message for Dr. C to call and he did rather quickly. I intended on questioning him about the necessity of Solumedrol, but after speaking to Ed, I didn't. I did ask about reducing the 2 Methotrexate tablets that we added the previous month. He felt it best to continue that dose. I also asked about his thoughts on the results of the x-rays and MRI. He told me that he was very optomistic about results and the treatment we were about to begin. He has high hopes that Jordan will respond well to the IV treatment so that we can reduce it as quickly as possible. According to Ed, some children may need to take it for 4 weeks to possibly more than 6 months. We're praying it will be just weeks. Please pray with us. I know God take care of our baby. I hope he gives me patience and strength to get through this.
January 18 - Tuesday Today was Jordan's first Solumedrol IV treatment. Last night she had a hard time going to sleep. She couldn't quit thinking about it. Fortunately, everything went very well. Our next door neighbor is a nurse in our local hospital's ER. We've known him since before Jordan was born. Jordan got very nervous right before he inserted the needle, but I began talking to her and by looking at her, you couldn't tell he had stuck her. It went very smoothly. She told him she had expected it to hurt much more than it did. After it was set up, he allowed us to sit in the waiting room while it was being administered. It took about 30 and he removed the IV in the waiting room. Two of her previous PT's had stopped by to see her. It was over before we knew it. I'm so glad it went so well. We were even able to attend Jennifer's basketball game in New Braunfels. Earlier in the day, a very sweet friend dropped of a purple teddy bear and a Winnie the Pooh necklace for Jordan. She and her husband are so thoughtful. They began a pray group at their church for her earlier in the month when they realized Jordan had JDMS. She'd looked so good so long, they didn't even know she'd been sick. My sister called eariler in the day too. She and her children prayed for Jordan today too. I also heard from my mother and Aunt tonight and they also said a prayer for Jordan today. Thank you all so very much. And thank everyone who has Jordan in their prayer. It may take some time before we know she's healed, but He was defintly with us today. I couldn't have asked for a more peaceful time. This afternoon, I picked up a copy of the x-ray report taken last week of Jordan's arms and legs. For those of you seeking information on JDMS, the report reads: Evaluated for Soft Tissue Calcifications Bilateral Femurs: There is no fracture or other significant bony abnormality. There is some clothing artifacts bu no difinite soft tissue calcifications. Impression: Negative bilateral femurs. Bilateral Lower Legs: No fracture or other significant bony abnormality is identified. No soft tissue calcifications are noted. Bilateral Upper Arms and Forearms: On the right side there is some minimal soft tissue calcification along the lateral aspect of the mid humerus and along the lateral aspect of the elbow. On the left side there is a fairly prominent amorphous plaque-like calcification within the soft tissue along the lateral aspect of the elbow. This measures approximately 3 x 1.5 cm in diameter. The bony structures appear intact. There also appears to be some minimal calcifications within the soft tissue on either side of the humerus. Impression: Abnormal soft tissues within the upper arms and forearms. The most prominent is along the lateral aspect of the left elbow. It's my understanding that calcifications do not always create additional problems. I hope this is the case with our daughter. I have to thank my Aunt Pat again for taking the time to help me set up the diary. I couldnt do it without her. She gets credit for all the pretty backgrounds and graphics. I just the enter events and my thoughts. She deserves all the credit for the diary and I believe that it is truly helping others. I pray that it is. Thank You Aunt Pat!
January 19 - Wednesday Jordan and I stayed home today. She complained some last night about her stomach hurting and this morning has a temperature of 100. I gave her Junior Advil which seemed to work. She was fine most of the day until about 6:30, then started complaining that she didnt feel well. I hope she's just tired from the extra testing and anticipation of yesterday's treatment. Hopefully she's feel better tomorrow and can go to school.
January 27, Thursday Jordan has had two IV Solumderol treatments so far. The first was given last week Tuesday. She was a bit nervous and so were we. Everything went very well, thanks to my next door neighbor. He is an ER nurse at the hospital and he gave the treatment. Jordan was allowed to sit in the waiting area and watch TV while it was being administered. She didnt pay much attention to the TV, but was comfortable sitting next to her father and I. Thank you very much Ronnie. Jordan was pleased that she didnt hurt at all. Jordan's second treatment was given this past Tuesday. It went okay, but not quite as well. Ronnie had the day off and that made her nervous. Jordan became extremely nervous once she noticed that the Solumedrol was leaking on her hand. We told the receptionist and she sent another nurse to check it. Jordan didnt want to be stuck again. The nurse held her hand a certain way to allow the solution to go in. Thank goodness it was over very quickly. Jordan hopes Ronnie will be working next week. I guess its too early to expect to see results. I can hardly wait to see Dr. C for more lab work. I havent received her last results, but they were prior to this treatment, so it will be at least 6 weeks before we'll know its working. Please keep Jordan in your prayers.
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