6/24/18 Day +53 “Tea Party”

Each day, Reese gets a few five minute spurts of energy. She is down to 27 pounds and they had to eliminate some of the IV “food” that was helping her keep weight on because of a glucose scare. Her hemoglobin also dropped from too much GI bleeding, contributing to the tiredness. She tries so hard to do things that are fun, and we know she gets five minutes, so we try to make it really special. I’d like to tell you about one of these five-minute-spurts today. On the note of tea parties… two days after my tea party post, a unicorn and rainbow tea set showed up for Reese, from my dear cousin Jackie. REESE COULD NOT BELIEVE IT!! It was magical. Well, Reese dressed up in her prettiest tulle dress for a tea party with Quinn today. They had warm water, and the sugar cubes were tiny little ice cubes. We made it happen and it was heartwarming. Pic below. (Thank you Jackie. You made her day.)

The past few days my sweet girl has also been begging for food. It began with pasta and sweet potato fries. When she found out that plain broth (“soup”) would be her first food, her pleading centered around soup. Remember, she hasn’t had anything by mouth in three weeks. The doctors decided it would be good for morale for her to have tiny bits of soup. If you could have seen her face when they told her! She couldn’t speak at that moment so she started clapping her hands with joy. So Reese ate a tiny bit of soup, three times, and she LOVED it, watching the clock, telling me when it has been one hour, so she can have a bit more (1/2 ounce.) I am so sorry to say that it did not go well, she did not respond well to having something even as light as broth in her terrible injured tummy. Tomorrow is another day and soup is on her horizon.

Most people who follow Reese’s story are friends with me… or my husband Chris… and some of you with both of us. Chris and I are very different, but just alike in the ways that matter here. We have our unending love of family and family values in common, and this is the tie that binds us. Good old fashioned love, loyalty, and doing our darndest to raise happy kids. There is a lot of other noise in the world, but he and I have always been able to come back to our core and our core is the same. On that note, I’d like to mention a reason I love him so much. During Reese’s stay at the hospital, I have started compiling data. I’ve been told by many that my record keeping is unique (and perhaps a little crazy, but no one says that to my face.) I have a need to know everything and to understand everything that is going on. It’s just who I am. So I call on Chris, to compile my data and help me make sense of it. And I have to tell you that when I pull up the crazy train, he always jumps on board. Anyway, this man of mine loves Excel as much as I love iPhoto. (Yes, that’s possible.) So together with my data and his Excel, we have spreadsheets. Me and my man, and our desperate need to try to do something for our little girl.

Please continue to pray for improvement, we have a long way to go and she really needs to catch a break. Her tiny body needs relief. Thank you!

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