8/16/18 BMT Day +106 Viruses

We are continuing to ride this roller coaster with little Reese. Today started off pretty tough, we were chasing nausea from the moment she woke up at 5:30… and once it’s there, it’s tough to beat. Around noon she finally found some peace to rest. Then she woke up with a reset and had a fantastic second half of the day! She negotiated her care with the nurses, colored with Poppy, chatted with her sisters, and topped it all off with soup for dinner. So why this shift?? Because each time Reese is doing better, something changes that knocks her back down a little. That sounds crazy, so let me explain. We NEED to help Reese’s stomach heal and we NEED to wean her meds. So when she starts doing “well”, it’s important for her health to add something and/or take something away. It’s a vicious cycle. So, why was she so devastatingly sick this morning and then well this afternoon? We paused her feeds the second half of the day, to help her regroup. Reese needs these feeds to stimulate her gut so it can heal. We restarted her feeds again tonight and tomorrow is a new day, hopefully it will go along a little bit better. Eventually, she will tolerate them and continue on down the road to recovery!

Viruses: Now there are not two, but three reactivations in Reese’s body. For this reason, the doctors made the bold decision to wean her steroids twice this week, instead of once. So today she went down, again, to 1.2. (We are getting so close to a safe(r) number!!) This decision was made to give her body a chance to fight these viruses on her own, before we add more meds. It’s a careful balance between keeping the gvhd at bay and recognizing that her body has to be able to fight these opportunistic beasts. The good news here is that the doctors believe that she is handling the steroid taper so well that they feel confident to make this move. GO REESE!

What’s next? Reese needs to handle her feeds so that she can increase the calories she is getting by stomach and chip away at the TPN (IV nutrition). Her liver and her kidneys are unhappy with all of the meds she is on, including the IV nutrition. The sooner we get her off this, the better!

Everyone knows about Reese’s cheerleader, her identical twin, Quinn. I’d like to tell you a little about her baby sister, Claire. Claire was born two years ago and she made me a mommy of “three-under-three”. Coming into this exciting (and a little crazy) household made Claire the easy going baby she was, and the confident and gregarious toddler that she is today. There isn’t a person at the Family House or the hospital who doesn’t know Claire, Claire knows everyone. Claire is sharp, chatty, and fearless. I think she actually believes that she is 4 (partly because she has spent an unnatural amount of time in isolation, as the rest of our family has, and her playmates are both 4.) Her favorite color is yellow… The color of our house, her home. Claire comes to the hospital and walks straight up to Reese and says “I love you Reesey Piecey”. She watches her with concern and is eager to jump at any request of Reese’s. She also asks me questions all the time. Are you coming with me? When will you come to the Family House? Will you sleep there? Will you eat breakfast with me? Please? And the comment that broke my heart the most:
“Mommy, I don’t want to miss you.”

No one is getting through this the same person they were, or were going to be. We are all a little tougher, a little more appreciative, a little more desperate to be together. Which brings me to my latest daydream. It’s about my kitchen table. The kitchen table I always wanted, that seats my whole family together. Everyone who knows me knows how much I value dinner together, as a family. Right before we left, just before Claire turned 2, she got a “big girl chair”. I think about this chair, and how excited she was to be “big”. I want my whole family seated at this table, Claire in her “new” chair, and I want to laugh, and sing Down by the Bay, and tell funny Uncle Jos stories, and watch Claire steal all of the blue cheese, and get up six times for “milk”, and hear Reese tell one of her famous stories, and “hide” the dessert from the boys, and have Quinn tell me she loves me “64-80-90” times, and then sit back and just… be. A family. The day is getting closer, I can see it! That’s why I dream it, because we will do it. SOON!

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