Things are shaping up for our next trip to Children’s Mercy in KC. We are scheduled to see Dr. Max (aka Dr. Hetherington) on Monday morning, and plan to drive up Sunday, most likely staying overnight at the Ronald McDonald House.
In addition to seeing Dr. Max and getting look at how Katie’s labs are looking, we will be doing whatever is needed for the NIH (National Institutes of Health) to do extensive genetic testing not only Katie, but on Jonathan & I, as well as several siblings. This type of genetic disorder is rare enough that it is not completely altruistic of the NIH to want to take a closer look at our family, and we are fine with that. After spending months trying to figure out why Katie has been so sick, we would be happy to help make the picture more clear more quickly for other families.
In the meantime, we feel encouraged by how Kate seems to be feeling. She remains low on energy and quite pale, but has more spunk than she did a couple months ago, and seems to be able to think more clearly. We have not gotten any bloodwork done since our Children’s visit in December, and we are interested to see if there is any improvement in her labs.
Do we have any theories on why she might she be improving? Well, yes. Thanks for asking! It has seemed likely that there is an autoimmune component to what has been going on with Kate, and we have therefore made significant changes to our diet in hopes of relieving as much stress on her body as possible. We are hopeful that these efforts are truly bearing fruit, and that perhaps we are figuring out some key pieces of what will be helpful as we move forward.
Thank you so much for praying for Katie, for our family, and for the doctors looking at our medical mystery. Those who know us know that we are not a run-to-the-doctor-and-do-whatever-she-says-at-the-drop-of-a-sneeze family. We look at our health from a whole-person perspective, and seek to support our God-created systems naturally as best we know how. At the same time, we have always been of the opinion that there is a proper role for the medical industry, and have availed ourselves of such throughout the years as we have believed was needed. We believe we are where we are supposed to be in seeking care for our precious Kate at this time. We believe that the Lord has guided each step of the way, and will continue to lead. We value input and ideas, and the Lord has used many of you to help refine our thinking, give suggestions, etc. We are so very thankful!