Jordan is feeling great and enjoying her summer. She had a wonderful time in Florida with her cousins. After 3 weeks of being gone from home, she was happy to get back to her own bed.
We saw Dr. C and he gave us the results of Jordan's MRI. Some muscle inflammation was present in her arm. Her lab work continues to stay about the same. He said he would prefer not to return to the prednisone but needed to increase her methotrexate. He explained that her body would not absorb any more than the 20mgs she was taking by pill. By taking weekly injections of 20mgs of methotrexate, it would be more effective.
I had tried to research treatment for calcifications and found that a few drugs have been used to disolve them. I had faxed Dr. C the information prior to our visit. When we saw him, he had reviewed the information and explained that it is difficult to determine whether it will help Jordan. Since JDMS is so rare, there have not been enough studies to determine which drugs are the most effective on calcifications. He said we could try one instead of surgery. He did prescribe a drug called Fosamaz. She is to take on (70mg) weekly.
It is very difficult for me to give Jordan her injections. I was so nervous the first time, I took her to my family doctor's office and asked his nurse to give it. She did. She showed my how to give the injections but offered to assist me each week until I felt comfortable giving it. Im sure I will take her up on her offer many times.
I gave Jordan her second injection, with the nurses help. It wasn't easy. After it was over, I asked Jordan if I hurt her. Her reply was "No, but I took too long." hehehehe I was glad it didnt hurt her and hopefully I will get better at giving them. Better yet, hopefully she wont have to take them very long.
We also hope the Fosamaz works. I read that another young JDMS patient had taken a similar drug and after 18 months, her calicifications disolved. We pray Jordan's do.
July is almost over and school will begin shortly. Jordan attended a cheerleading camp for a week. She received all her cheerleading gear. She is very excited about getting to participate. Her uniform is about 2 sizes to large. We're having it altered tomorrow.
Jordan is also Mascot. She an another little girl are sharing the responsibility. The have spent a few days putting together a skit to perform to music. There first performance will be at a camp for incoming 7th graders. They will also have 3 pep rallies through out the year. They have one very large bull mascot costume to wear each time. We will have to come up with another for each skit. In first skit, Jordan will wear a poodle skirt (with a bull instead of a poodle). The music consists of a few 50's songs, including "Leader of the Pack". The girls will act out the songs and dance together. They are really cute in their costumes. I hope they are happy with their performance.
Thank you Aunt Pat for beautiful diary pages. The graphics are out of this world! I just love them! You can visit the talented lady that makes the Graphics on the link below. A different Pat :o)
