We made it through an incredibly long day! The out-patient experience for Corey is very difficult but we are beginning to see the rewards. Her day begins between 5-6am. Her morning ritual includes the usual; personal care, dressing and breakfast. Pack lunch and snacks and by 8am we are heading to the car to arrive at 9:45 giving us time to unload for our first session at 10am.
Corey’s schedule changes every day. This morning we began our time with Coach Kate, ST. The ladies worked on picture recognition, naming objects within a category and a memory game. We also sang the named objects which will help to develop her vocal sounds as well as breath control. The only issue was Corey’s ability to see the picture cards. She did not recognize the objects without auditory ques. We are not sure if it a visual deficit or she cannot remember what the objects title is she’s looking at.
She had a half hour break and then it was off to see Coach Jeanine. Corey was not happy to see or work with Jeanine. It was obvious she was exhausted and needed her rest time. (Fortunately Jeanine is as creative as I am). We decided it was time that Mom changes her role as observer to active participant in this session. I pretended to be Corey and Jeanine pretended to be me. We role played exercises. Jeanine asked Corey if she could remember the exercises that were now “my” homework assignments. She and Jeanine then practiced the exercises together so Corey knew how to correct me in case I didn’t execute them correctly. Jeanine and Corey were now my coaches.
Corey passed on going to the cafeteria and took a much needed nap. The afternoon ST and PT sessions were handled with similar creative solutions. The instructions to complete the exercises in our gym today give “spin classes” a whole new meaning!
We had a follow up with Dr. Long and Dr. Murphy this afternoon. We’ve decided to trial a sleeping medication hoping it will carry Corey through the night. As I write this, I’ve already been called down twice to her bedside.
Little by Little…it’s a matter of time…this too shall pass…it’s temporary…one day at a time…one hour…one minute…breathe…rest…time for sleep…xoxo