Day 684 – Grayson’s Journey

Dear family and friends

Grayson was a bit better again today. While still not at the top of his game, he was a lot more alert and active than he was earlier in the week.

After work today Grayson and I ran some errands then picked up dinner at our favorite Italian restaurant. We brought our feast home and watched a movie. By the time dinner was finished and the movie was over Grayson was tired and ready for bed – so ready in fact that he stayed down without getting out of bed once.

It was a wonderful end to our week and we have a big day ahead tomorrow!

Pax!

Brant

Day 683 – Grayson’s Journey

Dear family and friends

Today was a far better day. Grayson woke up significantly more alert than the past few days. While not his best, he was still so much better than he has been it was a relief. These cycles are real!

Today after hearing a music phrase he would sing the next bit with relatively good accuracy. He was more talkative, and he was more active. And as always when he is in the more alert and active parts of his cycles, 90 minutes after going to bed he was still setting off the perimeter alarm in the room by walking out – usually with some stuffed animal from his bed or his pillow. Finally he has been quiet for about 30 minutes!

So we are now in the "up" part of the cycle and have some more interesting things to look forward to over the next week or so!

Pax!

Brant

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

Day 681 – Grayson’s Journey

Dear family and friends

There must be a cycle going on. Actually, there is always a cycle – it is just a question of where we are in it. Today Grayson was way off target all day. He had difficulty accomplishing the simplest of tasks. It was very difficult for him to focus and he was very non-verbal all day. I look forward to the upswing in the cycle in a few days.

We all have good days and bad days. With the proper attitude and desire most of us are able to pull ourselves together enough to function in society on our bad days. This is because we have the mental capability to do so. Our brains have sufficient reserves to carry us along even when we are just not quite right with the world. Grayson no longer has the mental reserves to carry him along when he is having a bad day. We noticed this even when he was still at the clinic in Bakersfield before he came home over a year ago. One thing holds true good day or bad – Grayson is happy. Even if he can't button his pants, he smiles and gives you a big hug.

Good days and bad days. Next time you have a bad day, try to be happy like Grayson and maybe things won't seem so bad.

Pax!

Brant

Day 680 – Grayson’s Journey

Dear family and friends

Today Grayson was a bit off his mark. It was one of those "head scratching" days.

Now if you haven't seen Grayson in the past 18 months, that last statement might not make much sense. On a good day if Grayson really has to focus and think about something he will scratch his head. The more he has to think, the more the scratching – up to and including both arms all over and around his head. On a challenging day, the head scratching will manifest itself with much less challenging problems, such as asking him to stand up or to say a word. Today was one of those challenging days. He even had a hard time staying seated while he was eating. As he stood up from dinner for the third time I asked him where he was going. He looked at me and said, "I don't know."

As always Grayson was in good spirits. For that we count our blessings every day.

Pax!

Brant

Day 679 – Grayson’s Journey

Dear family and friends

Today Grayson's "alertness" level was about normal for him – he was better than some days, but not as good as his best. All in all, he had a pretty good day.

We started the day by going to church, and it was great to see everyone after being away for several weeks. (I was in the hospital last Sunday and on a plane the Sunday before that!) After much conversation after service, Regina, Grayson and I went to lunch then dropped Regina off at her office to do a little work. Grayson and I shopped at Home Depot for an hour until Regina had collected all of her work and was ready to return home.

Grayson and I then went to the grocery store where we laid in supplies for the week. We returned home, prepared dinner then watched a Sunday night movie. Tomorrow morning we will be back at it!

Pax!

Brant

Day 678 – Grayson’s Journey

Dear family and friends

Grayson was not as bright-eyed today as he has been for the past several days.

We let him sleep in a bit this morning while we had our coffee and read the paper. When we did get him up later this morning, Grayson and I spent most of the remainder of the day together. We did chores, ran errands and other things together this afternoon. This evening we settled in to watch the game while I cooked dinner. Unfortunately the game was a huge disappointment. Fortunately he went right to sleep afterward and did not get out of bed once.

Even when Grayson is a bit behind the alertness curve, he is still a sweet and loving guy. He always wants to let you know that he appreciates you by snuggling up close or giving a hug. When all is said and done, isn't this what it is all about – letting those that love and care for you know that they are appreciated? We are lucky indeed!

Pax!

Brant