It's been one week since the 2nd colonoscopy that showed improvement, but not nearly the healing that should have occurred after 3 doses of Remicade and now 13 days of steroids. The doctor said today that she's not their "typical Crohn's patient", to which she comically stated "I'm special.". :) They upped her calories and nutrients (TPN) through a picc line but has not been on any formula or foods for several days. She's on complete bowel rest. Tomorrow she will get Remicade again and then start trying a little formula. We won't leave until everyone sees improvement.
As much as we miss it, we are thankful that we are not at home trying to manage her pain and all. We want to stay home for a while when we get there instead of turning right around, so I appreciate the slow approach the doctors are giving her now.
She continues to be the craft queen of D8, duck-taping everything in sight. All the nurses, doctors, technicians and child life specialists are now jealous of those that have already received duck tape flower pens, so there's high demand!
Today she got her picture taken for an article in the Dallas Morning News. Children's celebrated 100 years today and they asked Grace and her nurse to "just act natural" so look for her on Saturday, Sunday or Monday in the Metro section. She's teaching her nurse how to make...guess what....duck tape flower pens. :)
Like my Grandpa Hutson would say, "See you in the funny papers!".
