Leave of Absence

No matter where you go, there you are. I am practicing the art of acceptance (though I'm still at the apprentice stage). At this point in time Tessa's bone pain is being controlled with a cocktail of methadone, indomethacine, and prednisone. Her inflammation rates have dropped tremendously as a result of the steroid, and for that we are grateful. She moves well, though she is not inclined to run and jump. At the forefront on her symptoms is her tummy pain, which is constant and inexplicable. Her biopsies from her upper and lower GI procedures came back normal, which is of course great except for the fact that it doesn't provide any answers. She was put on a new medication last week, cyproheptadine, which is for unexplained stomach pain but takes several weeks to begin working. With the exception of our weekly trips up to Stanford we have been home for a week and a half. Tessa has become a bit of a barnacle in that she follows me even if I move just a few feet away. However, I find that I don't mind the way that my life is consumed by her. If my presents gives her a sense of security I will super-glue her to my chest and move on. The steroids have left her ravenous. The little girl that I would bribe to eat a few bites with a song and dance has been replaced by a child who wants to eat every moment of the day. My new challenge is how to moderate her food intake while not having her feel restricted. I feel like we have covered most ends of the spectrum with this parenting experience. The prednisone has also left her puffy and swollen, though I find myself torn between anger at drug side effects and wanting to suck on her sweet little cheeks.

Casey and I have decided that with all that Tessa has been through, the after-effects of the trauma and the incredibly high level of anxiety that she is feeling, it would not be fair to drop her off at a preschool and wave goodbye. I am working on playdates and going to check out some Mommy and Me type classes where she will have the social interactions and opportunities, but where I can still be available for support. So at present my challenge is creating routines so she can learn to feel safe again, be available to her when she needs me (i.e. at all times), and nutritional regulation.

We are headed back to Stanford on Friday. The plan, as of this late hour, is that she will be admitted to the hospital overnight on Friday. On Saturday they will be performing a specialized MRI on her small intestine where they will actually we able to view the movement of the intestine. The procedure is tricky because she has to be sedated, but she also has to have this oral contrast. Anesthesiologists do not want you to have ANYTHING in your tummy to reduce the risk of aspiration. As of yet, my understanding is that there will be tubes down her nose, among other unpleasantness. I'm honestly trying not to think about it as every time I picture overnights in the hospital my stomach bottoms out and I am filled with dread. I can only imagine how she will react when the time comes to tell her we'll be spending the night. Sigh.

Thank you all for the ongoing support. It is a challenging balancing act trying to establish normalcy while dealing with all of this. Perhaps the hardest part as of late came last Friday in our meeting with the doctors. They told us that in all likely-hood there will not be a diagnosis. Rather this will be a very, very long process in which we will be going to Stanford for weekly visits; assessing her symptoms and responding appropriately. Until that moment I had been operating in a world where we were looking for a diagnosis. This was all temporary, and that eventually we would be able to start treatment. That looks heart wrenchingly remote right now. This is life. We must learn how to live this way and create a world where she can find joy. Even if she's in pain. Even if she is no longer the bubbly girl I once knew. Gratefully these changes in her have not shifted a thing in my heart. If anything I love her more. She is my champion. I have never met anyone in my life who has had to undergo such pain and fear. If I have to spend the rest of my life fighting for her I will.

Please continue to keep us in your thoughts and prayers.