After Macey being on the Entocort for close to two years now it is hard to believe she is almost completely off. She is in her last week of 3 mg and then the true test begins. She has band camp the last week of June and the first week of August. That will be stressful and her appetite will be low because of the heat. ALso she has dental surgery that week in August under general anesthesia. The preop visit to get lung clearance will also include a lab draw for 40 cc's of blood for more specialized testing that the NIH wants. The cytokine (inflammation markers) testing came back abnormally high so they want to redraw it to confirm the results. This testing indicates that Macey does have an IBD but they are unsure which. Because her immune deficiency complicates her pathology for true IBD confirmation they have resorted to lab testing that shows documented evidence of a disease process. I'm getting the jist that in the end all of this will be written up because it is a unique way of determining her IBD. Also in late August or early September we will return to the NIH in Maryland to have another colonoscopy. This will be her first one in 2 years off steroids. If she has any weight loss or is symptomatic any sooner we will go ahead and go up and have the scope. She seems to be doing well coming off the Entocort except for some extra tummy pain and bathroom trips that were around the week of her cycle. But that always seems to be a bad week for her even on drugs. We've also started taking her down on her Hyoscamine dose (Levbid). She now only takes it once a day instead of twice. Hopefully the dental surgery and anesthesia won't mess with any of this and things will go well. School starts back here August 9th and she will be a Sophmore with two advanced classes (AP World History and Accelerated Math II). Her language classes are over because she finished her second year of Spanish due to being in an advanced year of that. This year she is registered for Beginning Movement (Dance) and Beginning Drama.
