August 1, 2001
Last night was the second time I had to give Jordan her injection. I hope it gets easier. She is very brave. She said it didn't hurt but she wished I'd do it faster. Hopefully, I will get faster and better at it. I know there are many people that have to give injections to their loved ones or to themselves. I'm sure there are much more difficult things being done than a simple injection so I probably sound silly to many people. If so, I apologize and want to commend those people for their bravery. I personally have found just enough strength to know I HAVE to do it for my daughter. I may tremble and feel weak after each time, but I will do what I have to do.
I mentioned that I had faxed Dr. C some information I had found on the internet about calcinosis. For those of you interested, the link is:
Calcinosos of Juvenile Dermatomyositis
I was relieved to find that the Fosamax he prescribed was alendronate, the drug mentioned in the article. Fosamax is primarily used for osteoporosis. The article states that the patient had dramatic improvement with the introduction of alendronate. I hope Jordan shows a dramatic improvement. Her left arm cannot be straighten because of a calcium deposit on her upper arm. It is too painful for her to straighten it. This is her biggest problem right now. Both of her elbows have numerous calcium deposits but so far, they are not preventing movement. I hope and pray the drug will be effective before the condition gets worse.
Tomorrow is Jordan's first pep rally and she is very excited about it. I know she will perform her best. She has been concerned about her audience noticing her not being able to straighten her arm, but with the smile on her face and her enthusiasm, I don't think anyone will notice.
On August 8th, Jordan picked at a calcium spot on her elbow. It was the first time that we had encountered the white milky substance that sometimes occurs with calicifications. I was not sure if it was the Fosamax desolving the calcium or if it needed treatment. I phoned Dr. C and he explained that it does occur. He said he was indifferent as to whether he believed is was a good or bad sign. He was concerned about infection and prescribed an antibiotic to give her if she got fever or if it looked infected. Fortunately, it did not get infected and the leakage only occurred that day and the following.
School started this week, Aug. 14th, and Jordan hopes to make the volleyball team. I am worried that she may not be able to keep up with the other girls as they seem bigger and stronger than she is. Guess we'll see.
On August 16th we saw Dr. C. He gave her a thorough exam and said she was doing very well. Her lab work looked good also. He examined her elbows and thought that the one that had leakage looked better. It didnt look as swollen.
Her eyelids do look somewhat more red than they have in recent months. She also has acne that adds to the redness of her face. We will continue to use the acne cream the dermatologist prescribed. It seemed to work well.
Jordan was disappointed that Dr. C said she could not play volleyball. He felt that the constant bumping of the ball on her forearms would cause more calcium deposits. He said cheerleading and basketball would be the better sport to participate in. Dr. C disappointed me by telling me to continue the methotrexate injections. I was hoping she could return to the pill form. We will see him again in 5 weeks.
Last week I received a call from the JDMS registry. Jordan was asked to participate in a study they are conducting. I agreed and should be receiving a package soon. I will post more details once I get the information.
Please continue to pray for all of those affected by JDM.
