We have had a quiet day. Katy did sleep a good part of the day which was a blessing because when she is awake she is not able to handle the strain of the prednisone taper. I talked with her doctor this morning and he felt like it would be a good idea to put her back up to the 20mg again. We are going to have to try something else, perhaps another drug, before tapering the prednisone. He body went into the same problems she was having before the Remicade. We were told that after her first Remicade treatment we would be able to cut the prednisone by half. She has had four treatments and we have not been able to cut it at all. This is very frustrating for Katy, and her body is going through a big shock right now. As positive as she has been, tonight she is feeling terrible. Although we have good prayer times and Bible study, she is human and experiences the highs as well as the lows.
We have an appointment Thursday morning with a doctor specializing in genetic disorders who has just moved to Roanoke. Pray for him as we visit and run through a crash course in HPS. We also pray he will be interested in working with Katy’s other doctors. It takes a team. Thank you for your encouraging comments. We need every one.Comments: