Wednesday, March 10, 2004

You can reach Sue at (314) 452-3685 or (314) 726-2032. You can write to her c/o Rose Holt, 905 Barnard College Lane, St. Louis, MO 63130

Yesterday afternoon Mike Madden (cousin) called to say hello and tell me he was thinking of me. He had just read the weblog, and said he understood everything on it except he didn't know what Chris's 'shaving the dogs' meant. Chris was and does shave the dogs. Mike thought it was some kind of code that he didn't understand.

This morning was my appointment with my neurologist, Dr. Bennett Frank. He still is unsure of a diagnosis and doesn't think anyone else could make one, given the test results and symptoms. His nurse even told me my illness might be some kind of 'fluke,' and we might never know what caused it.

Dr. Frank has more treatment in mind. I am to continue the introvenous steroids (Salumedrol) every two weeks for twelve weeks. We will do this second round of the medication at home. Last time by the end of the four days, we were just really getting to know the routine well. This time should go much easier--no hospital stay, no follow-up with Prednizone, and we know what we are doing.

Dr. Frank does not know how or when the treatment might work and has other options in mind should the steroids not be effective. One possible treatment would be gamma globulin and another would be some kind of 'dialysis' of the blood to clear away proteins. He warned me that I would have good days and bad days as far as muscle use goes and seems to think it may be some time before we know whether the steroids are working.

All things considered, today's meeting with Dr. Frank was the most promising and optimistic one so far. Both Rose and I came away greatly encouraged.

Home health care will come in the morning to start the second round of Salumedrol and then every two weeks after that. I will have my blood checked periodically.

Margaret and Norm watched over Brayden while we at the doctor's office then stoppped by the house on their way home from Scott AFB. Joe Callahan came by to offer encouragement and prayers. Scott comes tomorrow and will leave Friday with OUR baby. We, as always, will miss him terribly, especially the first few days after he leaves. He is full of energy, very pleasant, and a happy child. And does he love to eat!

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