Today Reese’s steroid wean began, again! This time the doctors are taking it down slowly… (from 2.0 to 1.8, only 10%.) Remember, the doctors are anxious to get it under the much safer dose of 1.0. This means they believe she is doing better! Go Reese, go!
I want to tell you the story behind Reese’s “five minutes of joy”. A friend of mine sent me an email about a month ago. Her son has suffered from medical problems at a very young age also. She comforted me, telling me a story about his experience with pain. She told me that months later, when she asked him about physical therapy (which was dreadfully painful) he brought up one specific memory. He remembered the chocolate ice cream at the end of the session. The chocolate ice cream. This story inspired me to create “five minutes of joy”, (or the chocolate ice cream moments.) I pray that one of these will stick, and this will be filed away instead of some of the pain of the day.
Which brings me to the “five minutes of joy” story. Reese loves to shop and she gets as much joy from retail therapy as the next girl. Well, we have brought shopping to Reese! Reese can’t go far (specifically, she can’t leave the little isolation unit known as the BMT) so each day we “open” a store for Reese. I stock it with little toys (sometimes things you have sent!) and Reese brings her little change purse (and sometimes her sisters) and she chooses two items to buy. Today, she woke up before sunrise, asking to “shop”. (A girl after my own heart..) Then, when she gets back to her room, she plays with her toy as long as she can- another 5 minutes of joy. Reese has physical therapy goals, and one is to hold her head up by herself. We attack this goal while “shopping”, I carry her and she works so hard the whole time, holding her head high!! Just wait until I open Reese’s Shoe Store. It’s on the horizon, as soon as my sweet girl can walk again.