Ok I am posting this a few days early, but it is going to be busy around here and I probably won't get back to the computer before we leave for our big trip to NIH. Everything seems to be in order, our reservations are confirmed at the Inn, and all the tests are lined up. Thankfully Emily already had many of the tests done that are needed for the trial protocol so we only have to do an echocardiogram and a glucose test. The glucose test is one I am not looking forward to, they will have to start an IV (drawing blood the last time was torture because she has no fat). They will give her a special drink thru her g-tube and draw blood several times to see how her insulin reacts over a three hour time period. We will start the drug as soon as we get there, and most of our time will be spent learning how to mix the drug (it comes in powder form) and administer it. So here are a few prayer requests, we are so thankful that this trip is happening, yet really nervous.
- safe travel there and back, with flights that are on time (in order to make it to shuttles at the right times)
- that the glucose test would go smoothly with minimal pain for Emily
- that there would be no reactions to the new drug (there shouldn't be, but obviously we don't want any complications)
- that Justin and I would be able to easily learn how to mix and administer the drug, and that Emily will not fight us giving it to her
- that Heidi, Anna and Luke would feel better and have a good few days with grandparents (they are fighting sore throats :( ), and that Justin, Emily and I would stay healthy
Thank you for your faithful prayers, we will update the blog when we get back to tell you how things went! Happy 4th of July!
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