Corey began her day with music, a stroll in the lobby to see the current art show display and then to PT. The therapists kept her very active today. We used her picture portfolio; she did some stretching on the mat and worked on the bolster developing trunk control. Corey held her head independently for almost a full minute! She also raised her arm when asked to hold a cone. Once the cone was in her hand, she maintained her grasp. The therapists were very pleased. Corey also maintained midline focus not only for the PT team but the nursing staff as well. They reported she was at midline for more than 30 minutes before I arrived this morning.
Late this afternoon, Mr. Matsanka, the vice principal of the HS, came to visit. Normally a visit from the VP would make anyone a little nervous. (She has spent MANY hours in his office over the last 4 years) In this case, he’s a welcomed visitor! She and Mr. Matsanka are very close. It was wonderful to see Corey focused right on him. She was ready to hear all the dirt about what she’s been missing at Avon Grove.
Unfortunately, Corey became increasingly uncomfortable as the evening progressed. Her medication is beginning to bother her stomach and she has begun what is called ‘storming’…Mom’s out there will understand, it’s similar to hot flashes. I also noticed increased facial swelling. The weekend on call doctor came in to check her and her vitals are stable. Her heart rate is a little high but nothing alarming. We will address the swelling tomorrow. It may be that the shunt needs to be adjusted again. Throughout the night Corey maintained an alert awareness, despite her discomfort, which is a good sign.
One of our favorite movies was on tonight, Ratatouille. She and I talked about cooking and her plans to go to Johnson and Wales for culinary school. She appeared to be engaged and focused not only with the conversation but also on the movie. One of the lines that stood out was when Gousteau told Remy ‘if you look at what’s behind you, you can’t move ahead’. This message touched me. One of the most difficult things about Corey’s injury is keeping my focus on today. I think of her as she was and it’s only natural to wonder where she will be as this healing process continues. It’s never easy to watch someone you love go through a difficult situation. It’s especially hard when they can’t express themselves. Corey is trying very hard to express her self. I mentioned in a prior post that she’s trying to communicate with her eyes. Tonight was tough. She was letting me know she was not comfortable. Like the line from the movie, I encouraged her that it’s okay. There might be days or nights that she will have little setbacks but she’s moving ahead a little bit each day. Focusing on the positive signs today will help us prepare to move ahead to tomorrow. Dear God, please heal our “little chef”
We love you Corey. Rest well honey, xoxo