The ebb and flow of this journey continues. We were feeling pretty optimistic on Monday that Henley had stabilized enough to consider transferring her follow up care to Bismarck or Fargo. This would include continued blood work and weight checks twice a week, while we wait for the genetic tests to come back. On Tuesday, Henley didn't have her usual energy and didn't eat as well. Wednesday's blood worked revealed her hemoglobin has dropped again, so it's possible she may need a transfusion this weekend. I have a great app on my phone that helps me track her eating, activity, sleeping and diaper changes. Looking at the patient in combination with the numbers has been an important key to determining when we will do a blood transfusion. Wednesday and this morning (Thursday) her energy has been much better, active and smiling and cooing. The Henley we love to see!
I've been doing pretty good at patiently waiting for the genetic tests, but with today's decline - I'm feeling really anxious again and praying the lab will get us some more answers by Monday so we have a clear direction.
