It comes around so fast. The week before Remicade is always so painful. As the Remicade wears off, Katy’s symptoms return with a fury. It is all she can do to hold on. Remicade works very well in her body for five weeks. Until the Remicade protocol is changed for Chrohn’s patients, it can not be given any closer together than six weeks. I guess it has to be studied and proven first. Katy called her doctor this morning to beg, but the answer was “no”. It is a hard situation to be in; to know relief is just a week a way but have to live through agony until then. The NIH is starting a new program to study the effects of certain medications on the bowel problems of HPS. The answers can’t come soon enough for people like Katy. I wish them well and hope for the sake of those yet to be born with this syndrome that their road to normalcy will be less bumpy than those who have gone before.
Katy and I have been keeping very busy during the week. Qavah is homeschooling and Annelise is now able to crawl into the center of all the activity. She is a social butterfly and likes to babble as though in conversation with us. Katy usually ends up with Qavah, and Annelise and I go to the kitchen for meal preparation. While all that takes place, Katy is supposed to be studying, reading, and preparing to write her final paper. I usually tell her that I can manage both girls so she can work but she’ll ask, “Why do you get to have all the fun?” And it is fun, and sometimes when life is hard it is better to have a little fun sprinkled in with all the tough stuff. That’s a good question, Katy! Why shouldn’t we have a little fun!Comments: