Day 1050 – Grayson’s Journey

Dear family and friends

We had a wonderful afternoon by the pool at Rita and Richard’s. Lauren and Howie also joined us so it was truly a family affair! The pool was delicious considering we are in the midst of a major heat wave. We hit 100° today and it is expected to be 4 to 6 degrees warmer tomorrow. While much of the afternoon today was spent in the pool, I expect tomorrow we will all wish that we were back there!

Grayson was a champ today. He enjoyed his time poolside with us and continues to exhibit alertness consistent with one of his upswings. In spite of the heat, how cool is that!

Pax!

Brant

Day 1049 – Grayson’s Journey

Dear family and friends

Today was a busy day as we were trying to keep ahead of the construction and pick the surfaces for the reconstructed master bath. Grayson was a champ as we visited location after location today. He was especially alert and attentive. The upswing he is currently experiencing is really fun. Unfortunately we know that it will cycle back eventually – that is the conundrum of a cycle is it not!

Tomorrow we head off to church then to Rita and Richard’s for a pleasant and relaxing afternoon by the pool for a change of pace. We are so looking forward to an afternoon of downtime!

Pax!

Brant

Day 1048 – Grayson’s Journey

Dear family and friends

Grayson is definitely on the upswing! His cycles are never predictable, but they happen. Today he was considerably more verbal, was far more active and way more alert than normal.

This evening we went to dinner and a movie with Lauren and Zack. We enjoyed dinner al fresco and the movie Trouble with the Curve. A fun evening!

Pax!

Brant

Day 1047 – Grayson’s Journey

Dear family and friends

Grayson appears to be getting over his cold (finally!) and also seems to be on an upswing mental cycle. He has been increasingly more alert these past few days, more active and focused and even speaking a bit more clearly (the few words he does use). Perhaps he is feeling better (I can understand that!), perhaps he is starting an “up” cycle, or perhaps it is a combination of both. We’ll take it!

There is lots of buzz around the Reed Haus these days with the master suite remodel (repair actually, but “remodel” sounds so much nicer!). Things are progressing rapidly and we hope to keep on at this pace to get back in our bedroom soon. While we always wanted a bedroom with a vaulted ceiling, a fireplace and a balcony, the living room was not what we had in mind!

Pax!

Brant

Day 1045 – Grayson’s Journey

Dear family and friends

Today Grayson was very restless and fidgety – even more so than normal! Sometimes this is a result of more neural activity – sometimes it is a result of being tired. During the day he had to be encouraged to eat, but by dinner he ate like a horse! I think that we can chalk the day up to being a good one, but sometimes I am not exactly sure why!

Living with brain injury – especially a global none – means that every day is a surprise!

Pax!

Brant

Day 1044 – Grayson’s Journey

Dear family and friends

Back-to-work-Monday!

Danielle arrived after her weekend to take care of Grayson. Fortunately the issues of last Friday were gone and all was well today,

It was a busy day for all – off to bed now!

Pax!

Brant

Day 1043 – Grayson’s Journey

Dear family and friends

This morning at church we spent a fair amount of time remembering our interim pastor that was with us from late 2006 through early 2008. His death this past week was rather sudden and caught many of us off guard. Pastor Marcus is now with his Father and we are all better off having known him.

After church Regina, Grayson and I went to lunch then off to a store to pick up more materials for he remodel. Returning home Grayson and I turned around and headed to the grocery store to get provisions for the week. Grayson was alert today and did a great job as usual as my grocery cart pusher. However I have noticed that he continues to become more nonverbal as time goes on. Lately he has had particular difficulty getting words out. I hope that this is a phase but I fear that it is not.

Pax!

Brant

Day 1042 – Grayson’s Journey

Dear family and friends

Grayson joined us today as we met up with Austin and Xixi to watch the Trojans of USC take on the Golden Bears of Cal. Because the game was only televised on the Pac-12 Network, very few local networks are carrying the games. We found that Barney's Beanery in Burbank carried the game and we met up there and watched it. We had a ball! I really didn’t expect the day to be so fun, but the company was fantastic, the atmosphere was very fun (and very Cardinal and Gold), the cheers were almost like being there – and we won! Given that it may take a while to get the Pac-12 Networks carried by cable companies that we can use, we may have to do this again this season.

Grayson had a good day. He enjoyed the fun food at Barney’s Beanery and also enjoyed snuggling up to me during the game. It is good to be home!

Pax!

Brant

Day 1041 – Grayson’s Journey

Dear family and friends

I’m back after another week in Seattle and will be home for two weeks before heading out again! Grayson was glad to see me and was quite cuddly all night.

The big news in town today was the fly-over of the Space Shuttle. It was quite a tribute to the town that built her. For roughly 3 hours, Endeavour flew over all of the facilities that were a part of her – Rocketdyne, Boeing, JPL – as well as a myriad of other locations in Southern California. What a thrill for those who were able to see it. (I was in Seattle until this evening.) Regina called to tell me of her excitement as it passed overhead in La Canada!

Back when I started my career 35 years ago in the industry, aerospace was the big employer in Southern California. No longer. The industry has shrunk, and much of what is left has departed for greener pastures - leaving the remaining industry here a shell of its former self. Today was a celebration of the pride that we all feel having been a key part of such a wonderful legacy. It was a lump-in-the-throat day!

Pax!

Brant

Day 1040 – Grayson’s Journey

Dear family and friends,

Is it the heat? Is it the end of Grayson's cold? Is it the extra noise and chaos at home, or the start of a new cycle?

Whatever the combination of any or all of the above today was, it was a challenging day for both Grayson and his caregiver.

This afternoon I received a report that Grayson hit his caregiver during their afternoon walk. It appears he was incontinent during the walk and when she tried to get him to turn around to head back home he refused to walk. When she tried to encourage him to walk and pick up his pace, he struck out and hit her in the face and then in several times in the shoulder. Needless to say I spent some time with both of them this afternoon reinforcing proper behavior on Grayson's part and coaching defusing techniques with her.

On this evening's news broadcast there was a hidden camera expose of a couple of caregivers hitting and abusing a 24 year old young, autistic man. The lack of respect, impatience and cruelty displayed in that video as well as the confrontation during the afternoon walk, amplified my fear of what Grayson's care (and life) could be like after we are no longer able to care for him.

I know that I should not worry about tomorrow and that tomorrow will have worries of its own. All I can do today is prepare as best I can.

Oh, Lord – let it be enough.

Regina

Day 1038 – Grayson’s Journey

Dear family and friends,

Brant is in Seattle, Grayson is finally in bed, and I am exhausted.

Peace and good night,

Regina

Day 1037 – Grayson’s Journey

Dear family and friends,

Grayson's cold continues to wear on him. He was low energy, slow in responding, and required extra cueing all day.

He is also in a phase that I haven't seen in a long time. He keeps repeating words. Today if I asked him a yes or no question, he answered with a repeated "yeah, yeah, yeah, yeah".

If I asked more open ended questions he answered with unintelligible mumbling. Even if I started the sentence for him he had more trouble completing it than usual.

Grayson also had difficulty staying seated for activities (including meals). He kept standing up and was not able to express why. It doesn't appear to be the typical exiting behavior that we see when he doesn't want to do an activity since he never turns down a meal or snack.

No one knows exactly why this type of day comes around. It's the kind of day that feels like much of the progress is washed away. We'll just have to wait and see what tomorrow brings.

By the way, despite frequent cleaning of hands and disinfecting surfaces throughout the day Grayson, Danielle, and I are all sharing this delightful end of summer cold and cough. My guess is the cold is contributing to his low energy. No one likes doing things when you have a cold.

Stay healthy my friends,

Regina

Day 1036 – Grayson’s Journey

Dear family and friends

Today we spent the afternoon making more decisions on our remodel and running errands to prepare for another week. I am out of town again this week leaving Regina to hold the bag here at home.

Grayson’s cold is still with him, but he seemed to be getting over the worst part. He was way more alert today and was active and alert all day. Let’s hope he gets through it soon and that we manage to avoid catching it!

Have a great week!

Pax!

Brant

Day 1035 – Grayson’s Journey

Dear family and friends

This morning we looked for new surfaces to decorate around in the updated master bedroom and bath. Grayson, in spite of his cold, was with us all day as we made decisions on items. He was a champ, but he was battling his cold all day.

We made it home in time for the game, though it was painful to watch. When all was said and done, the Cardinal beat the Trojans for the 4^th time in a row. It was hard to believe with all of the weapons that USC has to work with. At this point we can hope for a rematch in the Pac 12 Title game, but there is a long season remaining.

There is always next week!

Pax!

Brant

Day 1034 – Grayson’s Journey

Dear family and friends

I’m home for the weekend! I do have to admit that it’s beautiful in Seattle this time of year. Too bad that it isn’t like this year round!

Notes from Grayson’s caregiver – He was better today, except his nose was running like a faucet. I interpret that to mean that he was more cooperative than he was yesterday (anything may have been an improvement) but the cold has taken hold. I will attest that tonight he was really taxed by the cold. It will be a miracle if we don’t all come down with it!

Time to celebrate the weekend!

Pax!

Brant

Day 1033 – Grayson’s Journey

Dear family and friends,

Today was a challenge for Grayson's caregiver Danielle. Not only was Grayson nonverbal much of the day but he was somewhat uncooperative. When she tried to have him remove the hidden coins from a ball of putty, he threw it to the ground. When she asked him to return his book to the shelf he swung his arm at her. When she told him it was time to use the restroom, he hit the wall.

She went on to say, however, that when he did use the restroom, he finished the entire sequence (used the restroom, buttoned up, washed and dried hands, flushed, turn off the light) all without prompting.

While I realize it was a challenging day for her, I celebrated the news. If Grayson remains completely complacent and compliant, he may never regain any ability to make choices or initiate basic skills. While striking out is an unacceptable behavior, expressing frustration and making decisions shows promise. Completing the restroom sequence independently without cueing is progress.

It certainly isn't linear progress but it is progress none-the-less. Tomorrow I will spend time coaching her how to make the most of the challenging days.

Peace to you this night,

Regina

Day 1031 – Grayson’s Journey

Dear family and friends,

What a difference a day makes.

Grayson was not as fidgety today and was practically in slow motion most of the day. After the caregiver left this afternoon, Grayson actually fell asleep in a chair and slept for nearly 45 minutes. I think what was most different, however, was my attitude. I was able to frame my response to his challenges with more patience and acceptance.

On this eleventh anniversary of the horror of the 911 attacks it is painfully evident the difference a day can make. Lives and a nation changed forever. Pain and loss that will never subside. Fear that will live just below the surface.

May God bless all of us with the peace that passes all understanding.

Regina

Day 1030 – Grayson’s Journey

Dear family and friends,

Grayson was very fidgety today. He clenched down on his toothbrush repeatedly this morning and this evening. He bared his teeth when he didn't want to do the activity the caregiver initiated and he remained mostly nonverbal all day.

In spite of hourly restroom breaks Grayson was incontinent about every 45 minutes this evening. This kind of day is a challenge for Grayson and for me and can really stretch my patience.

Please pray that I find balance and patience as I begin another week with Brant out of town.

Peace,

Regina

Day 1029 – Grayson’s Journey

Dear family and friends

Today Regina and I took Grayson with us as we tried to finalize the things that would make up our new bathroom. The next step is to figure out where everything will go! Grayson was a champ wandering around the home warehouse store looking at all sorts of things. He hung in there and was little bother so Regina and I were able to narrow down the field!

I’m off to Seattle in the morning for a week that starts with rain and a low of 48° and ends with sun and a high of 81°. Gotta love the Northwest!

Pax!

Brant

Day 1028 – Grayson’s Journey

Dear family and friends

Saturday! I love Saturdays in the late summer and fall because USC Football is underway! Today we watched our Trojans play the Orange of Syracuse. (Seriously? The Orange? I suppose that you are going to tell me that next week we are going to play another color – like the Cardinal!) We had a few scary moments during the game but managed to pull out a 13 point win. Perhaps the most unusual part of this game was the 90 minute weather delay as the teams trotted on the field after half time. Tornados and thundershowers are perhaps not the ideal conditions for players or fans in the stadium!

After the game Grayson and I went on a walk – our usual 1-mile round trip to the golf course and back. I was pleased with Grayson’s speed and strength on this walk!

Today was a great day!

Pax!

Brant

Day 1027 – Grayson’s Journey

Dear family and friends

We managed to make it through another week! The house has once again been filled with the sounds of demolition and construction. We are sleeping in the living room and we are down a bathroom. Work has been crazy for me and we have just pulled of a major reorganization that was effective today. Now I need to spend some time on the road again and that means that Regina will have to manage things on her own for a while. With Grayson that can be difficult. It means short days in the office and limited time to get everything done.

Grayson continues to be in his up-cycle and has been quite sharp and alert. That is a blessing!

Pax!

Brant

Day 1026 – Grayson’s Journey

Dear family and friends,

Today the plumber came to the house and did a thorough inspection all of the drain and supply lines in the master bath. He had a better than average opportunity since they removed most of the walls and flooring in the room. When they did he discovered not one but several cracked pipes – obviously the cause of the leaks flowing into the family room below.

It reminds me of Grayson's situation. Every day we are dealing with leaks in his abilities. His short term memory is so porous that he is able to hold what he just heard or experienced for less than a minute. That makes it hard for him to build new patterns, to weigh choices or understand consequences.

With our home, we have the ability to remove the walls and floors, see the damage, replace the damaged old pipes with new, solid pipes and restore functioning to as good as or better than before.

With Grayson, we can't see into his brain or nerves. We can't see or repair the damaged, oxygen starved cells. We search blindly for conduits that might still be open and hold on to the threads of functionality.

As our dear cousin, Robin recently said, "We don't know what the future holds, but we know who holds our future and we are seeking to trust Him."

In peace and hope,

Regina

Day 1025 – Grayson’s Journey

Dear family and friends

Grayson’s caregiver was back today after a long weekend. It was good to see Danielle again!

Grayson has memories that still surprise me when we tap into them. Tonight we were watching TV and Conan had a bit spoofing Katie Couric. She was showing off her home and it showed that she had many pictures of Saddam Hussein, clearly photoshopped in. Grayson was just rolling with laughter. When I asked him who was in the pictures he quickly responded between laughs, “Saddam Hussein”.

There is still a lot still in that head of his. We just need to find a way to get it out!

Pax!

Brant

Day 1024 – Grayson’s Journey

Dear family and friends

Today was a busy day after the holiday weekend. Austin had the day off and came over to help Regina clear out the remainder of the bedroom. Workers were here before 8:30 to start demo on the master bathroom. Demo they did and at the end of the day the bathroom as we knew it was gone! We decided that as long as we had to do major repairs, we should update our circa 1976 bathroom with some enhancements. There is no turning back now!

Grayson was a champ today! He was calm while the world around him was in a bit of chaos. Austin came over and was a great help all day. Zach also pitched in to help. It was a team effort to finish moving things around so we could function during the update.

At the end of the day, Grayson was pooped and went to bed without a peep. The rest of us did also!

Pax!

Brant

Day 1023 – Grayson’s Journey

Dear family and friends

Today was filled with lots of labor! While the nation took a day off to celebrate the achievements of American workers and organized labor, we spent the day moving out of our bathroom and some of our bedroom. We were “celebrating” a leak from a drain line that runs over our family room. That leak has now done some damage to the ceiling but before we can affect a repair we need to fix the source. So tomorrow the crew will arrive to start tearing into our bathroom. After 36 years, it is time for plenty of other deferred maintenance in this room!

Grayson went with me when I ran my errands during the day. He has been sharp and active all day. In fact when I went to wash his hands at one point today, I told him to address the sink, and he said, “Hi sink!” then looked at me and grinned. The boy still has his sense of humor!

Back to work tomorrow after a long and wonderful weekend!

Pax!

Brant

Day 1022 – Grayson’s Journey

Dear family and friends

This afternoon while Regina ran several errands, Grayson and I went over to Rita and Richard’s newly remodeled pool and hung out in the Southern California sunshine. Grayson and I had a great time together relaxing and playing in the pool. As the sun dropped lower in the sky, we headed home.

Grayson is still doing well. He continues to be on an up-cycle which is fun for us.

Happy Labor Day!

Pax!

Brant

Day 1021 – Grayson’s Journey

Dear family and friends

Today was a busy day of errands prior to the start of Trojan Football for the year! We spent the late morning and afternoon dealing with life’s essentials before settling in to watch our beloved Trojans take on the Warriors of Hawaii. The Warriors played tough but were no match for USC. Final score USC Trojans 49, Hawaii Warriors 10.

For those that have known Grayson a long time, “sports fan” is not how one would refer to Grayson. However he does seem to perk up with anything related to his alma mater, so he is content to sit and watch the game with us and read his book. He does tent to jump a bit when I suddenly holler at an exciting play, but he is content to be surrounded by us during the action.

Grayson continues in his “up-cycle” and his “get-up” cycle. By that I mean that he had a difficult time staying in bed after I put him down for the night. Fortunately, he went down for good after just one sounding of the door alarm tonight!

Pax!

Brant