Day 667 – Grayson’s Journey

Dear family and friends,

After several days of encouraging alertness and verbalization, Grayson spent the whole day in an unfocused fog.

He was unable to speak more than an occasional one word answer and was incapable of making even a simple "A" or "B" type choice. His hands were shaky and he was wiggly all day. He couldn't stay seated even to watch TV for more than a few minutes but kept leaping to his feet and wandering.

He was less steady and straight walking down stairs and needed more cues than usual to complete various daily sequences.

During meals he had a hard time focusing, picking up food with two hands at the same time, reaching for the food on my plate instead of his own.

Background noises affected him more today than on other days and made it difficult for him to function with any distraction in the room.

When I was helping him brush his teeth this evening, he kept biting down hard on the toothbrush.

When I put him back to bed for the third time tonight, he was standing in his doorway holding two stuffed animals, his pillow and a book.

We've had other days similar to today and there doesn't seem to be a way to determine why or when they come. But they do come. I get frustrated but I'm not as frightened or as discouraged by these days as I used to be. I am learning that Grayson's progress curves don't look like the steady upward curve you might expect (or wish). The pattern is slower and more erratic, uneven, and mostly unpredictable.

The keys are to keep trying, be sensitive and flexible, listen to what he can't express, and just keep on loving him.

With God's help,

Regina