So many positive things have been happening in our room on the 6th floor at UCSF Benioff Children’s Hospital. Slowly, painfully slowly, Reese’s GVHD is subsiding. Her pain persists, sadly that seems to be the last thing to improve. But her spirit and her personality are in full force, and in so many ways, she is BACK!!
Many of you knew Reese as a baby & toddler. She was never one to put on a show for anyone, she was always comfortable in her own skin, throwing around her hilariously dry “Reese-isms” and sharing her very funny perspectives about the world. Cautious but brave. She was never robust or boisterous, she entered a room quietly with purpose. My twins are very slight of frame, nimble and lythe. Small and mighty. This is perhaps why it wasn’t such a shock when Reese walked across the room at 10-months-old. She was so small, teensy little legs, not a “powerhouse” by the traditional definition, but just flying across the room with purpose, dodging toys in her way and determined to walk… because that was what she wanted to do.
Walking. Reese lost the ability to walk almost two months ago. Her entire nutritional intake has been from TPN and lipids, basically IV fluids with sugars and vitamins. My already thin girl lost so much weight. She is a teensy 28 pounds right now (her identical twin is 34, for comparison.) We are slowly adding a trickle of feeds into her NG (nose) tube to recondition her gut for food. I have been working with her for the past two weeks… the first step was to regain her strength to hold up her own heavy head. But don’t ever underestimate Reese, I didn’t think I did…
I have been telling everyone that “shopping” in our store would someday give Reese the motivation to walk- to have a purpose to leave her room on her own two legs. I just didn’t think she would try for weeks. Today, she went shopping with Nonnie and Poppy and her sisters. After shopping, I knelt down while holding Reese, to pose for a picture with her sisters. When I went to stand up, Reese said, “Mommy, if you hold my hands, I can walk.”
So I did. And she “walked” all the way back to our room, holding my hands. With her best cheerleaders cheering her on.