Day 682 – Grayson’s Journey

Dear family and friends,

Today was the kind of day that makes my heart heavy.

Grayson was far off his high today. He had a really hard time with just about everything.

The head scratching that Brant referred to yesterday continued from morning to late tonight. He could not remember what day of the week it was even for 30 seconds. He could not write a legible "X" on his calendar to mark off yesterday's date.

He also had more difficulty speaking today. He could not construct a complete sentence when asked and barely uttered "yeah" to yes or no questions.

I thought maybe getting him to breathe deeply and walk quickly might help so we walked a great deal this afternoon. We walked up and down the street, across parking lots, carrying groceries up the stairs, etc. He had a really hard time getting out of slow gear and more difficulty than usual cooperating with tasks.

Grayson stood up during meals, walked around the house with a book in his hand, and had a hard time making even an A or B choice. Days like this also bring an increase in incontinence.

There were two things of particular interest I noticed today. The first was that while he was brushing his teeth this morning he did not stop after 10 seconds and hand the toothbrush to me as usual. He kept brushing for nearly a full minute before he stopped. With encouragement he continued for another 30 seconds before stopping a second time. That's an improvement.

The second observation was that this evening his hands, which are usually cold, were very warm. This was so unusual that I checked his temperature to make sure he wasn't running a fever.

My heart was heavy because improvements are so slow, so small, so unpredictable and undependable. And life is so fast.

Grayson snuggled into bed tonight. We exchanged "I love you"s and I closed his door hoping for a better day tomorrow.

With God's help.

Regina