Day 562 – Grayson’s Journey

Dear family and friends

Today we were all back to work, and so were the crews here at the house. There was lots of noise and pounding, and I am told that Grayson did well in spite of it all.

Grayson has been very aware and active these last few days. He has been using more words to express himself, he has been more attentive to details and he has been significantly less incontinent. All of these are awesome signs.

Pax!

Brant

Day 561 – Grayson’s Journey

Dear family and friends

Happy Memorial Day! Today is the day that we pause to give thanks to the heroes that have "preserved us a nation" (Star Spangled Banner, verse 4, Francis Scott Key). This morning we saw flights of WWII era fighters pass overhead to participate in celebrations around the area. Regina and I talked about the sound – nothing like a formation of propeller-driven warplanes flying in formation to stir the soul or frighten you to the core. It made me empathize with the residents and those in harm's way at Pearl Harbor in 1941.

Today was beautiful here in the Foothills. We got out to run a few errands and caught up briefly with Austin and Xixi. Grayson was pretty alert today. He helped me with some chores around the house this afternoon. He also assisted me with the grocery shopping and the all-important task of putting the groceries away!

I leave you with a picture of Grayson and 3 other Scouts honoring the Tomb of the Unknowns at the Arlington National Cemetery in July of 2001 while on their way to the National Scout Jamboree. (Grayson is the Scout in the rear on the right.) It seems an appropriate picture for this day.

Pax!

Brant

Day 560 – Grayson’s Journey

Dear family and friends

Today seemed to just disappear! We started a bit slowly this morning and as a result did not have enough time to get Grayson ready for church. As it was it was after 1:00 before we rolled out of the house. This afternoon was spent looking at finishes for the construction currently underway in Lauren's room.

Grayson was happy to roll along with us as we went about or chores today – especially those that involved food! He was also quite easy to be around as we would our way over several hours through the home improvement store. When we arrived home he and I enjoyed a movie over dinner then it was lights out!

Pax!

Brant

Day 559 – Grayson’s Journey

Dear family and friends

Today we spent the day at Rita and Richard's enjoying wonderful company and the elusive sun. The sun made appearances throughout the day, but long sustained periods did not occur until around 4:00. We talked and laughed all afternoon before we started dinner. Tonight I grilled Copper River Salmon and it was superb, if I must say so myself! Paired with Rita's vegetables and a chardonnay, dinner was a feast!

Grayson was alert and observant today. He always enjoys the presence of company as he likes to follow the conversation. He laughs at all of the humor, even the subtle things. He was content to watch, listen and observe this afternoon. He was also content to graze at the hors d' oeuvres most of the afternoon! When we returned home this evening, he was more than ready to crawl into bed.

A great start to the holiday weekend!

Pax!

Brant

Day 558 – Grayson’s Journey

Dear family and friends

Grayson was a bit more alert today. Today was a busy day around the house and he watched with keen interest.

Construction continued in Lauren's room and he liked to poke his head in there to see what was happening at various points throughout the day. One summer in college he worked with these guys on a construction job, so they knew him from before his injury. They greet him warmly and show him what they are doing. Grayson observes for a while then goes back to his books or whatever he is doing at the time.

This evening Grayson and I went to the fish store and the grocery to shop for our holiday weekend. The weather is expected to be in the high 70s tomorrow so the "observed" summer of Memorial Day to Labor Day will be kicked off in Southern California style – poolside at Rita and Richard's with a BBQ!

Pax!

Brant

Day 557 – Grayson’s Journey

Dear family and friends,

I must admit Grayson did not get much attention today.  It was the kind of day that made it hard to give him the full attention he deserves.

Here are a few of the distractions. I was trying to give as much attention to my job as possible during business hours.  Early this morning I met with my brother, also our contractor, about needed home repairs as well as the condition of my sweet sister-in-law who is battling colon cancer.  Later in the afternoon I moved all of Lauren’s things out of her bedroom so we could remove carpet, scrape the acoustic (cottage cheese) ceiling, re-plaster and paint.  (Oh, and she is out of town for a couple of weeks, hence is not available to assist.) I had dental and other appointments and was chasing down electric circuit problems that suddenly appeared.

Grayson is content to watch all the activity around him and is easily occupied with either books or television. I confess I used these to keep him safe and happy.  We realize life is a balancing act and by definition that means that the balancing is not static but sways back and forth with constant correcting effort. Today the balance swayed away from Grayson.

When we were able to give Grayson our full attention this evening, we were both struck by just how endorphins affect him.  We were laughing and being silly about something during dinner and his giggles completely took over his body.  His face stretched into an uncontrollable grin, he ducked his head, doubled over and expelled an audible breath of laughing that was absolutely contagious.  What a joy that, among his many compromised functions, his funny bone is still so much intact.

Make a joyful noise,

Regina

Day 556 – Grayson’s Journey

Dear family and friends,

Grayson was fairly non-verbal again today and as a result I found myself expending a lot of energy drawing him out.

Later this afternoon I concentrated on getting his body in motion rather than his voice. We walked up hill and down, we marched together, we "ran" a race, and we danced. We danced the jitterbug and we danced the twist. At one point, I was exercising by myself to music and he was watching me. He stood up, put his arms around me to give me a hug and started to dance a slow dance.
Sometimes it's just easier to do than to speak. It all says "I love you".

May your day be filled with such joy.

Peace,

Regina

Day 555 – Grayson’s Journey

Dear family and friends

When I finished work today, Grayson was glad to see me. He helped me get the BBQ set up so we could grill one of his favorites – heart-healthy chicken!

While we were getting things ready, I started singing (like THAT is a surprise). Tonight a song from Sound of Music popped into my head and I blurted it out – "Maria". As I sang it, I would stop in the middle of each phrase and Grayson would finish the phrase for me – on pitch! It was so fun. I didn't know that he even knew the words to the song – whirling dervish and all! Grayson always loved musical theater, and it brought perhaps the greatest joy and memories to his life, thanks to the loving community at Flintridge Prep.

Even with all of his challenges, Grayson is still a joy to be around.

Pax!

Brant

Day 554 – Grayson’s Journey

Dear family and friends

Grayson was quiet but alert and "with it" today. He helped me do chores this evening, including taking out trash, using the shredder to destroy sensitive papers, carrying groceries up to the kitchen from the car and helping to put them away.

I was struck tonight by Grayson's good nature and affection. Being around him every day you come to take some things for granted. One of the things that keeps this journey much less of a burden is the fact that we are on it with a person who is pleasant, always has a smile and a hug for us, and who wants to help. We are blessed by his good humor and sunny disposition every day!

Pax!

Brant

Day 553 – Grayson’s Journey

Dear family and friends,

This evening I walked into the family room where Grayson sat sprawled in a chair with his size 13 shoes extending far into the open space. When I approached his chair from the side to walk around him, he pulled his feet in.

This may not seem to be a big deal but it was to me. Grayson is very compromised when it comes to awareness of his body in relationship to others. He appears not to understand that his physical presence has consequences or at least he is not be able to do anything about it. For example, he will stand in a doorway and not move until I explain that he is blocking the path and I cannot get past him.

Tonight he not only recognized that his legs and feet were in the way but immediately and proactively initiated an action to correct it. I didn't even have to stand there and hint.

Another encouraging inch.

God's peace to each of you as we begin another beautiful week.

Regina

Day 552 – Grayson’s Journey

Dear family and friends

It's Saturday! Today was a sleep in and recover day from a very busy week. Grayson got up and had a big breakfast this morning. This afternoon while Regina was visiting her sister-in-law at the hospital, Grayson followed me around the house doing chores. Mostly he watched or sat down and read his book.

Grayson was a bit quiet today, but he enjoyed following me around and watching or helping if he was able. At one point today I picked up a case of 35 water bottles (500 ml). He observed me doing this and bent down to pick up the other. I made the decision that his balance was not good enough for him to carry over 35 pounds of water up two flights of stairs. I thanked him for helping but asked him to put the water back down. He pitched right in without being asked!

Pax!

Brant

Day 551 – Grayson’s Journey

Dear family and friends

Grayson awoke with his switches in the "off" position today. He was slow to move, slow to react and generally just not with it. He was, as always loving and affectionate. So we count our blessings.

Regina and Grayson picked me up at the airport when my plane landed around 6:00 PM. We headed to Montrose to have dinner with Rita and Richard to celebrate Richard's birthday! Grayson was happy and content to eat sushi with us and was very good at dinner.

Even though the weather there was fantastic, it is great to be home after working all week in Seattle!

Pax!

Brant

Day 550 – Grayson’s Journey

Dear family and friends,

This morning I let Grayson sleep in a couple of extra hours – probably not a bad idea since he didn't fall asleep until about midnight. When I finally went in to get him up he was wide awake and smiling at me. I engaged him with my usual morning patter but this morning was different. Instead of my having to swing his legs over the edge of the bed to get him to sit up, he stood up entirely by himself with just verbal direction.

The rest of the day followed suit. He was bright-eyed and cooperative and he walked at a faster pace. This evening, when I walked down the hall to my bedroom, he initiated and completed a restroom sequence completely on his own. I stayed around the corner out of sight and merely observed – then, of course, followed with appropriate praise.

He has already gotten up from bed twice in the last 15 minutes. I suspect that on days with greater alertness it is harder for him to wind down.

We spent the day laughing, talking, walking, carrying, sorting, choosing, washing, and of course, hugging. Who could ask for anything more?

This is the day the Lord has made. Let us rejoice and be glad in it.

Regina

P.S. – Happy Anniversary to my sister, Rita and her wonderful husband, Richard.

Day 549 – Grayson’s Journey

Dear family and friends,

Grayson's on/off switch was switched off today. He was extremely non-verbal and had difficulty executing simple routines such as putting his jeans on.

It is now 11:15 in the evening. He has been in bed for two hours and I just put him back to bed for the third time. Sleep isn't going to come easy tonight.

In spite of all this, there was a high point. We sat down at a computer this afternoon and I helped him log in to his Facebook page. It was hard for him to concentrate so I read him notes that various people had posted over the months. Since it was one of his friends birthday, I asked if he wanted to post something on her page. He smiled and said yes. So he sat down and typed a short, two word message. This started a series of responses between Grayson and several friends. Since he holds the keys down a little too long, the spelling was creative but authentic. He even selected a new profile picture.

Knowing how much he used to enjoy the computer, I plan to make this a regular part of his day.

His door alarm hasn't gone off in half an hour. Maybe I will be able to go to sleep myself now.

May God grant each of you restful peace,

Regina

Day 548 – Grayson’s Journey

Dear family and friends,

As you know, Grayson is quite challenged verbally. It is easier for him to revert to silence or one word answers. When I ask him to repeat his answer in a full sentence he is sometimes able to flesh out a short sentence. What comes easily to him, though is silence. He will point to his mouth when hungry or to the TV for viewing time. It is effective but this shortcut will only handicap him further so we don't accept it.

For the last few days I have been trying an experiment. I wondered that if he didn't have to worry about his pronunciation or intelligibility, would he more readily engage in conversation. So I play with him using only the word "blah". I use as many syllables as I need and use my exaggerated inflection and gestures to convey my meaning. The rules of play are simply that he use the same language. "Hi, Grayson" becomes "Blah, blah-blah". He answers back similarly. Sometimes it is only an echo or a counting game. He really enjoys echoing blahs back and forth. Without much effort there is a closer semblance to a balanced conversation.

Today, after breakfast, I told him (in normal words) that it was time to go upstairs and take a shower. We were sitting next to each other. I did not make a move but asked him what I needed to do. "You have to stand up", he said quite clearly to me. I nearly fell out of my seat.

Play is therapy.

Thanks be to God.

Regina

Day 547 – Grayson’s Journey

Dear family and friends,

Grayson was fairly "with it" today. He helped me change his sheets without any reminders as to what his role was. He put dirty clothes in the laundry and picked up things he dropped without much more than a subtle cue. He executed his restroom routine with minor cues.

Later this evening, when I asked him what time it was, he said it was bed time. I pretended that I was stuck and couldn't get up from the couch. I asked him what I needed to do and he told me to put my feet on the ground. I then asked him what the next step was and he motioned with his arms for me to stand up. I asked him what the next step was and he told me to go upstairs. He was relating to me all of the steps I usually have him do when he is stuck - complete with all of the hand gestures I use.

It is so rewarding to see the memory pathways imprinting and to see the slight improvement in his ability to do something with the memory. I am so grateful for the encouragement this kind of day gives me.

May the progress curve continue to rise.

God's grace and peace to each of you this beautiful, cloudy day.

Regina

Day 546 – Grayson’s Journey

Dear family and friends

This morning was a bit of a rush. Lauren was out of here early to rehearse her bell choir piece. Regina and I were pretty pooped from last night, and Grayson was time consuming in the morning as usual – not difficult, but it takes at least 90 minutes to get him ready. We did a good job today and were at church early!

We had lunch after church then the boys went one way and the girls another! Regina and Lauren ran errands then had a pedicure while Grayson and I went home. Once home I started packing for my trip to Seattle then we finished setting up his computer and moved it into his room. This is one of the 14 computers that we removed from his room. This is the only one I deemed worthy of installing Windows 7 on and investing some effort in preparing for his use. The rest are chip jewelry!

The girls arrived home and I prepared a quick dinner for us. The evening was a short one – Grayson to bed, me finishing my packing with freshly ironed shirts straight from Regina's ironing board!

Pax!

Brant

Day 545 – Grayson’s Journey

Dear family and friends

It's Saturday! I was given the exquisite birthday gift of sleeping late (which I took advantage of) this morning before a birthday breakfast of turkey bacon and scrambled eggs (no fruit for me anymore!). While technically yesterday was my birthday, it was observed today. Good for me – a birthday is not a day but more like a season!

Grayson awoke a bit slow like yesterday and spent about half of the day in this place. Late in the afternoon I took him on our regular walk – half a mile up the street, and then downhill back home. It seemed to jump-start something and he was a lot more alert when family arrived this evening. At the end of the night he was quite alert and following all of our conversations.

Rita, Richard, Austin, Xixi and Lauren were here for my birthday dinner this evening. We had a blast laughing and chatting until way too late. In fact, they just left a few minutes ago and I am trying to get this blog posted before midnight!

Pax!

Brant

Day 544 – Grayson’s Journey

Dear family and friends,

Grayson was back to slow motion again today and clearly not as alert as the last several days. He generally had trouble initiating and responding to directions. His speech was quite muted and he was back to scratching his head off and on all day. He was edgy and there seemed to be neurological "noise" going on in him.

It really makes us wonder what goes on in his body and mind to have him simply wake up either "on" or "off" each day.

We continue to work on building muscle and brain pathways and we continue to look for the moments of opportunity that will meet his needs that particular day.

What a ride life is.

P.S. Happy Birthday and love to my husband and friend.

Regina

Technical Update – Grayson’s Journey

Dear family and friends

I apologize for the delay in the most recent blog posting. For the first time in 18 months, the Blogger site was down for updates for almost 24 hours. It appears that we are back to business as usual now!

Pax!

Brant

Day 543 – Grayson’s Journey

Dear family and friends,

Grayson and I spent a wonderful day together today. As Brant mentioned yesterday, Grayson has had several days in a row noticeably more alert. Most people would probably not even notice a difference but when you live in slow motion and measure progress in inches, you notice.

For example, many of you know Grayson is still incontinent. We don't mention it much, but it is a challenging part of life. As with all of his other routines, we use repetition to move him more toward independence. We cue him to use the restroom hourly during his waking hours and break the routine into small steps from start to finish. Sometimes he needs more cueing than other times but he is definitely better than a year ago.

Grayson will stand up and move toward the restroom whenever we remind him. Today was different. At one point Grayson stood up on his own, walked to the restroom, and successfully completed most of the routine. This is a BIG DEAL! Initiation is a major step forward.

I thank God for the inches, for the alertness, and for the opportunity to be here to celebrate and encourage him.

Grace and peace,

Regina

Day 542 – Grayson’s Journey

Dear family and friends

Grayson was alert and "with it" one more day. The day started with a bit of a scare. Grayson awoke with quite a nosebleed and while that would normally be of little concern, he is on blood thinners due to clotting concerns after his recent arrhythmia. We were able to get it under control after 20 minutes or so. Not the way we like to start our days! Fortunately everything is washable.

He was a bit more verbal than usual today. This evening he helped me put away items from our ski trip (about time isn't it!). We also started to summer-ize our equipment and pack it away for the next 10 months. We are a few loads of laundry away from putting it all away, but we are a lot closer to storage!

Pax!

Brant

Day 541 – Grayson’s Journey

Dear family and friends

Grayson was bright and alert all day! Regina spent time working with Grayson this morning and he was talking more than he has been in a while. Mind you that isn't very much, but words are words! After I finished work this evening, Grayson and I went on our regular walk – a one-mile round-trip up hill to the golf course and back.

Austin and Xixi came by and joined us for dinner this evening and we were delighted to have a house full of family once again this week.

Home therapy may not be as good as the clinic, but so far we are doing OK. We just need to find someone else that we can depend on to do it while we are away from home!

Pax!

Brant

Day 540 – Grayson’s Journey

Dear family and friends

Today was a slow starter – I think that we were all still recovering from the Mother's Day celebration yesterday!

Today was the start of Grayson's first full week at home – no clinical therapies anymore, and no caregiver. Life will be a bit of a challenge as we figure our way through this current dilemma. In the meantime, Grayson is in good spirits and probably loves the fact that no one is pushing him to get on the treadmill or to work too hard on expressing himself verbally!

Austin and Xixi came by for a bit then left Austin here while she went and tutored a student. Grayson, Austin and I piled in to the car to get our skis "summer-ized" – a tune up and storage wax for the off season. We grabbed some food at the market and had a nice meal at home until Austin had to leave.

Pax!

Brant

Day 539 – Grayson’s Journey

Dear family and friends

Today was a wonderful day! Grayson, Lauren, Regina and I enjoyed a wonderful church service this morning then this evening we were surrounded with all of our kids (including Xixi) as well as Rita and Richard.

Family time together is special time. As our kids grow older these moments become rarer and even more precious.

What a wonderful Mother's Day!

Pax!

Brant

Day 538 – Grayson’s Journey

Dear family and friends

It's Saturday! Today we all escaped from the harsh reality that the world gives us sometimes and spent some time enjoying the beautiful day and doing some projects that needed accomplishing. We had lunch with Austin and Xixi and for a brief time celebrated her belated birthday.

I feel compelled to say that after our discharge conference at CNS on Friday there was a minor celebration of our transition to home care. Good wishes were shared all around and we felt some closure after our time there.

We are taking a few days off of making plans and are just going to celebrate life this weekend – especially that of Regina who exemplifies all of the best in mothers. It is why we celebrate Mother's Day tomorrow.

Pax!

Brant

Day 537 – Grayson’s Journey

Dear family and friends,

Yesterday Brant spoke of the end of one chapter in our journey. I could feel his uneasiness about the uncertainty of the next steps.

I had mixed feelings about the changes but I was also encouraged because we had located a loving caregiver that Grayson seemed to respond well to. We invested several weeks paying her to attend Grayson's therapy sessions so she could observe techniques and become more familiar with the rhythms of his on and off days. Brant and I both really liked her and were grateful that we could have a loving individual care for Grayson at least a couple of days a week. This would allow me to return to my office during normal business hours on those days – with fewer late evenings and weekends. We would also save a fortune in mileage driving to the clinic. I was looking forward in many ways to the new rhythm of our lives.

Late this afternoon, we got a message that she changed her mind and is no longer available to us. No warning, no explanation. Needless to say, we are extremely disappointed. Yes, we can start interviewing again. Yes, there are other caring individuals out there. We will, however, not have the opportunity for a new individual to attend therapy sessions with Grayson and learn from observing professionals interact with him. 

Some things are hard to understand. They can come out of the blue and hit you in the stomach. That's how we feel this evening.

We will shake off our disappointment, our confusion, and yes, our anger over a wasted investment. There is still a plan for our lives. It will unfold in due time as it always does.

"I lift up my eyes to the hills – where does my help come from? My help comes from the Lord the Maker of heaven and earth." (Psalm 121:1-2)

God's grace and peace to each of you.

Regina

Day 536 – Grayson’s Journey

Dear family and friends

Today was another alert day for Grayson. As an example, Regina asked him to reach into the car and pick up some trash when they arrived home this evening. He did so then he proceeded to take it to the trash can without prompting. That is unusual for Grayson, but wonderful! Thinking to the next step and executing without prompting is a huge win! This has been several days of alertness in a row – almost every day for the past two weeks with the exception of Sunday morning. I wonder what is going on in there.

Today was Grayson's last day at CNS in Encino. Unlike his departure from Bakersfield, there was no fanfare, no farewell, no celebration – not even a "good luck". We simply went home after cleaning out his locker and getting our parking ticket validated. We will return for a discharge conference tomorrow, but I have the nagging feeling that they are relieved that we are leaving. Anoxia is just too complex an injury for this facility and Grayson is too injured for them to deal with effectively.

In 10 days we will hit the 18 month mark since the incident that put us in this predicament. We are now at the place I was told we would arrive at very early on – on our own (from a resource point of view and without the financial benefit of insurance) to provide the best care and therapeutic environment we can to maximize Grayson's quality of life. We will do our best as long as we are able.

Pax!

Brant

Day 535 – Grayson’s Journey

Dear family and friends

Grayson woke up bright eyed today, and he ended the day the same way!

Grayson had his penultimate day at the clinic today. Tomorrow will be his final day at CNS Encino. For Grayson there appears to be little fanfare compared to his leaving CNS in Bakersfield last September. His time there is just coming to an end.

Grayson and I did some errands this evening after he came home, then we did chores. He has been more alert since our ski trip, though I'm hesitant to correlate the two. Let's just say that he has had a pretty good two weeks!

Pax!

Brant

Day 534 – Grayson’s Journey

Dear family and friends

Today was back to normal for Grayson, but "normal" is about to change again. This is the last week of therapy for Grayson. We were told that this week would be the end of the three-a-week therapy days before reevaluation in 6 months.

Grayson woke up bright eyed this morning. Sarah had him ready to go to the clinic well before Regina arrived home to take him. When Grayson returned this evening he helped me with chores before getting dinner ready.

A normal day before things change again!

Pax!

Brant

Day 533 – Grayson’s Journey

Dear family and friends

As promised, I will give you an update on Grayson from Sunday as well as today.

On Sunday, Grayson woke up very groggy. He was slow in the room and his slowness extended into his first lesson in the morning. After trying several things, Grayson finally started to act alert just before lunch. The secret was giving him some downhill speed to keep him alert!

His afternoon yesterday was much better. He actually had three instructors Sunday afternoon – a father-daughter pair and an assistant. Grayson worked very well with them, especially the 15 year-old daughter. She is a member of the local race team and a ski instructor that has been volunteering time at Disabled Sports Eastern Sierras (DSES). What a great kid! Here is a shot of the parade going down the mountain working on turns!

We finished our last lesson of the season, said our good-byes at DSES, then went back to the inn to change clothes and finish packing. We did that in short order and were on our way home well before 6:00 PM. After an uneventful drive we arrived home at 11:30 PM.

Today Grayson got to sleep in until his normal 9:00 AM time – quite a change from his 7:00 AM vacation-time wake up call. After his morning routine we all piled into the car and drove to the USC Health Sciences campus for a follow-up exam with his cardiologist. There we had some minor med changes and we scheduled a procedure for June. That procedure should eliminate one of his meds going forward and eliminate the case of his arrhythmias.

It was over 90° here today – quite a change from Mammoth! It suddenly feels like summer!

Pax!

Brant

Day 532 – Grayson’s Journey

Dear family and friends

Grayson and arrived home safe and sound, but tired, just before midnight. We had a full day of skiing before our 6 hour drive home. I'm going to bed and tomorrow I'll update you on the last day of our trip to Mammoth Mountain.

Pax!

Brant