Friday will be my daughters last dose of the dreaded Prednisone! YAAY! I am excited but nervous at the same time. Since her diagnosis and treatment, she has always been taking it. That is what has been keeping her intestinal inflammation at bay and now that she won't be on it anymore, it is a little scary. The Remicade, however, is taking the place of the steroid and has worked very well for her and is safer. It is almost as if she was never sick but we all know that isn't true and she will have this disease forever. My point is, that the steroid was like a "safety net" in a sense and to not have that anymore is a little unnerving. This will be the true test of the Remicade to see if it is really working on its own. Her next infusion is on 12/2. After that, it will be every 8 weeks. The only meds she will be taking now is the Pentasa (maintenance med) and Remicade. So glad to be almost done with the steroid! Even though my daughter has been good about taking her meds, it is still heart wrenching to have to give it to her when I know deep down inside she really doesn't.
My family and I will be going away for the Thanksgiving holiday. It is a much needed break! I will be bringing all the meds with me. Even those she doesn't need right now.....just in case (like a safety net...lol). My only worry is being away from her docs and the hospital. This hospital is all about children and had been great with my daughter. Being hours away from it is a little worrisome for me. I just have to not expect something to go wrong.
I hope everyone has a safe, happy and blessed Thanksgiving! My next blog will be after the holiday. I will be busy packing!
Until then, Laugh and Love Life!
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