9/2/18 BMT Day +123 Tests

What are your simplest pleasures in life? The ones that are so tiny they can go unnoticed to the less mindful, but give you the most daily happiness and joy? If you are a parent, I bet you are thinking a lot of them have to do with your kids. The way your daughter crinkles her nose when your husband tickles her… or always grabs your hand first when she has to walk down the stairs. Maybe it’s the way she searches for your eyes in a crowd, always, and then runs to you with such gusto she almost knocks you over. These are some of mine. Another is walking with all three girls. I love that they put me in the middle and we make a chain too big for the sidewalk. It takes my breath away with happiness. These little pleasures are so powerful, so important. These are the things that keep me going, and God made them so plentiful in a parents’ life… our days are totally frosted with endearing moments.

The doctors continue to monitor Reese’s progress. On paper, it hasn’t changed that much. Lots of pain, lots of tests to see why she is still in so much pain, a lot of inconclusiveness. Right now her feeds are paused, again, in an effort to see why her tummy is getting so big. Her steroids were supposed to be weaned tomorrow (from the 1.3 they went up to after her flare last week to a 1.2.) This has been put on hold, as the doctors fear that something is brewing with her gvhd. An x-ray and ultrasound were taken and radiology is meeting with my team tomorrow morning to further discuss. Meanwhile, not on paper but in life, Reese is making a lot of progress. Little bits of Reese keep coming to the surface as her incredible personality fights it’s way out of this mess. We are all so happy to see her! It has been a constant string of improvement for quite some time now. She spent 3 hours on Saturday and 3 hours today in the playroom. She has taken it over with me, her sisters, her dad, her Nonnie and Poppy, anyone who is around gets to go and play. And they have to kick her out (no, really, they do) or she’d never leave. That’s Reese.
Thank you for keeping my whole family in your prayers. We all need it, for different reasons. This battle isn’t easy for any of us, and as much as I wish I could see the date that things will get better, I can’t yet. I long for the day there is nothing daunting and frightening and unimaginable in the future for my kids.

Auntie Terri was here for a visit late last week. She took me out for a little retail therapy of my own and spent time with me and my girls at the hospital. She even got to hit the playroom and go SHOPPING!! Reese’s shopping excursions continue to be a highlight and the conduit to all kinds of therapy.

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