Leaving for NIH study next week
8/23/99 11:27 PM
I am nervous, excited, scared, anxious, grateful, all at the same time. I'm going through cycles of being angry that my son has to deal with this and grateful that we have somewhere to turn. I hear from the NIH staff pretty regularly and they seem so warm, compassionate, caring, and genuinely concerned. To prepare my son, we are getting up every morning and the very first thing we do is measure his baby sister. I let him helpme administer her flouride drops, we play with his Dr. kit, and we look through the medical encyclopedia and discuss the different medical treatments (ultrasound, IV's, MRI's, etc) I let him take my blood pressure any times he asks, and he listens to my heart throughout the day. I hope all this helps him feel prepared. He looks at the Children's Inn brochure and asks tons of questions. We will spend one night there before his admission. We are flying out Monday at noon. He is scheduled for admission at 2pm on Tuesday. i am so nervous about being in such a big place. We live in a rural community and we have never flown. So many firsts all at one time. I know i'm rambling. Thanks for listening. I hope I can return with some good news. I certainly hope his hydroxyprogesterone is lower than 2,500 like it was August 2. Take care, Selena
Selena
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