6/26/18 Day +54 Soup

Reese’s greatest joy in life right now is a 1/2 ounce of diluted chicken broth. She watches the clock and points out the hour to me because she learned that she was able to have some on the hour. Why does she love soup so much? In order to control her rising glucose and triglycerides, some nutrition was eliminated from her TPN and lipids (IV nutrition- the only nutrition she gets while her stomach heals.) She is down to 27 pounds and feels like she is starving, my poor girl. For reference, Quinn is 32 lbs. Her body is craving food and she is demanding soup because that is all she can have. It is an instinct, survival. So what do we do? Two things. Her TPN and lipids are being restored tonight at 9:00. It has been decided that her weakness comes before steroid induced diabetes that can be treated with insulin. We don’t have great options, so sometimes things just need to be weighed. And does Reese get soup? Yes. Her stomach isn’t ready for it, but for morale, she is allowed soup here and there. And she cherishes that moment! See video of her first bowl, it’s the little things. Meanwhile, she is tolerating Pedialyte frozen, and that is a step in the right direction.

Speaking of a step in the right direction, that is what her doctors are saying about her gvhd over the past two days. She might not be ready to tolerate food, but she is slowly moving toward this goal. How glorious, to consistently be getting better! We feel overwhelmingly blessed. The next few days will be very telling. We pray for a steady path to wellness, and our whole family under one roof at some point during the month of July! This may sound ambitious, but we are ambitious, and July will be our month!!

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