Day 1020 – Grayson’s Journey

Dear family and friends

Grayson had a good day again today. Along with the improved cognitive activity when he is in an up-cycle are several other “things” that we have come to expect. He has trouble siting down. He has even more trouble with incontinence. He has trouble falling asleep and staying in his bed. We have experienced all of the above in the past few days, and we will hopefully see more in the near future. During the “up-cycles” we notice more understandable speaking, speaking in sentences, more focus on activity, improved THP scores, and generally more alertness.

I’ll take alert and up-cycle over dull and down-cycle anytime!

Pax!

Brant

Day 1019 – Grayson’s Journey

Dear family and friends

I am fairly certain that we have now come out of the down cycle as today was another good day for Grayson. When I came home from work, Grayson started speaking to me without prompting. That was the first time that I can remember where he just spoke without responding or repeating something said by another. Unfortunately when he spoke I was unable to understand anything he said, but he spoke nonetheless!

Pax!

Brant

Day 1018 – Grayson’s Journey

Dear family and friends

Grayson was responding in full sentences today! This may mean the end of the down cycle, but it is too early to be certain. We’ll see how it goes for the next few days.

With Danielle he was responding in complete sentences without prompting. She asked him what his favorite movie was and he responded, “My favorite movie is Star Wars.” Most unusual and a sign for improved weeks ahead! He was also walking much faster today which would also indicate an upward swing is in store.

Today was a good day for Grayson!

Pax!

Brant

Day 1017 – Grayson’s Journey

Dear family and friends

Today Grayson had a special treat! Lenny, one of his best friends from Boy Scouts came by to visit accompanied by his girlfriend. They spent an hour or so visiting this afternoon. His caregiver Danielle noticed that he was much more verbal after they visited!

It is so wonderful to know that Grayson has not been forgotten by his friends. We are realistic – they will move on with their lives and slowly fade away while Grayson does not have the capacity to cultivate new friendships. But here we are almost three years after his incident and still he has old friends come by to visit. Those are special occasions indeed!

Pax!

Brant

Day 1016 – Grayson’s Journey

Dear family and friends

Today Grayson was much clearer in his 1 or 2 word answers than he has been for the past few days. He also did well in his THPs (therapeutic home program – a set of questions requiring some thought).He took 2 nice long walks with his caregiver Danielle and had what I thought was a pretty good day.

Good days are something we look forward to aren’t they!

Pax!

Brant

Day 1015 – Grayson’s Journey

Dear family and friends

Grayson was a bit more verbal today than he has been the past few weeks. Not a lot more verbal, but just a little bit. Tonight when I tucked him in bed and I told him that I loved him, he said, “I love you too Dad.” He hasn’t done that for a few weeks, so I interpret that as a very small sign that things may be a little bit on the upswing from where we have been these past few weeks.

After a morning of church and some errands this afternoon, we settled in to grill the remainder of the salmon from yesterday and watch a movie. A day of rest before a busy week!

Pax!

Brant

Day 1014 – Grayson’s Journey

Dear family and friends

Today was a beautiful day! Not only was the weather sunny, but it was not too hot – mid 80s for us.

We spent the afternoon at Rita and Richard’s helping them celebrate their newly remodeled backyard and pool area. I brought a salmon that I purchased yesterday at my favorite fish market at the Pike Place Market in Seattle yesterday. All in all there were 11 family members there today – quite a fun afternoon and evening!

Grayson had a fun day. He spent a lot of time in the pool and really seemed to enjoy himself.

It was a great Saturday!

Pax!

Brant

Day 1013 – Grayson’s Journey

Dear family and friends

I flew home from Seattle this afternoon after spending a week in the Emerald City. Grayson was excited to see me and I was also glad to see him. We spent some family time together this evening.

Grayson continues to dwell in his down cycle. We continue to be puzzled by these cycles, and this time we are puzzled by the length.

Pax!

Brant

Day 1011 – Grayson’s Journey

Dear family and friends,

Up and down. Up and down.

Grayson was perceptively more verbal today. By that I mean I could understand his words and his voice was stronger and slightly clearer. Danielle wrote in her notes that Grayson was able to do several fill-in-the-blank sentences with her today.

With this greater responsiveness comes the attendant fidgetiness, inability to stay seated (even at meals), and repeatedly getting out of bed (regardless of the late hour).

There always seems to be a flipside to everything, doesn't there? The challenge is to understand that it is part of the natural order and can't be changed. When we stop fighting or wishing things that can't be changed were different, we embrace, adjust, and strengthen ourselves. Easy? No. Worth it? Absolutely!

Keep getting stronger.

Regina

 

Day 1010 – Grayson’s Journey

Dear family and friends,

This evening I was fortunate to attend the grand opening of the new John McKay Center at USC. This spectacular center will provide state-of-the-art athletic training and academic facilities for the student-athletes of USC's 21 sports.

When I picked up Grayson from my sister and brother-in-law's home afterward, I told Grayson about my evening and where I had been. As usual, after telling him something I wait a few minutes and then ask him a couple of questions to test and stretch his memory. I asked him where I had been. He answered, "Pete's place". I wasn't sure I heard him correctly so I asked him again. "Pete's place." I laughed so hard. Pete Carroll was USC's head football coach during Grayson's years attending USC. Brant would jokingly refer to USC as "Pete's place" and Pete Carroll was still head coach when Grayson sustained his injury in 2009.

Grayson's answer used his short term memory in accurately recalling that I had spent the evening at USC. His long term memory, however, still thinks that Pete coaches football there. (Some of you may know that in early 2010 Lane Kiffin replaced Pete Carroll who now coaches the Seattle Seahawks.)

Grayson is still proud to be a Trojan – another thing that cannot be taken away from him.

FIGHT ON, Grayson.

Regina

Day 1009 – Grayson’s Journey

Dear family and friends,

Grayson seems to be slipping farther down the competency scale lately, especially in verbal expressions. I am lucky to get even one word answers again. In addition, he is not willing to stick with an exercise, game, or activity more than a few seconds and this is proving a real challenge for our new caregiver.

It's tricky to know how to fill his waking hours with more than just motoring him through the basics of waking, eating, drinking, brushing teeth, showering, shaving, hourly toileting, cleaning hands,… repeat.

The goal is to fill the remaining time with enough routine AND enough challenge to strengthen him physically and mentally to lead him to be the best he can be – whatever that is.

During cycles of improvement, even tiny improvement, it is rewarding and motivating to us. That helps bring out our patience and creativity as well as hope. It's natural to feel that we are building on a foundation and that the progress will stick.

During an extended time of regression (or suppression) it is can be frustrating and a little discouraging. The progress doesn't really stick at all. It comes and goes and cannot be depended on.

So we are always aiming at a moving target – in the short run and the long run.

If it is unsettling for us, I can imagine it is even more challenging for a young caregiver. We draw on 27 years of loving him; she has had only a month. She is, however, quite bright and a fast study. She will learn to dance to his music.

In hope,

Regina

Day 1008 – Grayson’s Journey

Dear family and friends

Grayson continues his non-verbal time combined with a relative down cycle. I look forward to the ski season when the activity seems to perk him back up! In the meantime we do what we can to encourage and stimulate him with activity.

After two weeks home, it’s time to hit the road again. The good news is that this is the best time of year to travel to Seattle. Too bad I’ll be inside most of the time.

Pax!

Brant

Day 1007 – Grayson’s Journey

Dear family and friends

Today I had the adventure of taking Grayson to the dentist to have some cavities and near cavities filled. As wiggly as he is, I assumed that I would have my hands full keeping him still while the dentist did his work. To my total surprise, he was as calm and as quiet as could be during the procedure. By the end of an hour he was starting to lose patience, but up to then he was a champ.

Austin and Xixi came by this afternoon and we went to an early dinner at a Dim Sum restaurant. The food was awesome and we thoroughly enjoyed ourselves. When we returned home, we finalized our plans for Mammoth VIII – our 8^th annual holiday ski trip to Mammoth Mountain. In 100 degree temperatures we are already getting excited about our winter ski vacation. Perhaps the warm temperatures are WHY we are getting so excited!

Pax!

Brant

Day 1006 – Grayson’s Journey

Dear family and friends

While we thought we were looking at an up-cycle, today proved to be just the opposite. Grayson was particularly non-verbal today – it was difficult to get even one word out of him and his understandability was practically zero. Danielle had a difficult time having him stick with the simplest activity.

It’s the weekend. Perhaps some rest will improve all things!

Pax!

Brant

Day 1005 – Grayson’s Journey

Dear family and friends

I am so impressed with our new caregiver Danielle. She has been with us a month now. Today she introduced a new activity – Spanish Scavenger Hunt! She would ask Grayson in Spanish to locate things, point them out and say his answer. To the question “¿Donde esta es tu padre?”, Grayson responded, “At work!”  Both of them thought that was quite funny and had a good laugh.

Creative, caring people is what Grayson needs around him to help him grow his limited cognitive skills. Danielle is a welcome member to the team and we are blessed to have her!

Pax!

Brant

Day 1004 – Grayson’s Journey

Dear family and friends

Danielle was back today after being off since last week. It was sure great to have her back after a few days off! She kept Grayson hopping all day. They went on two long walks, did reps with the Thera-Band and worked on fine motor skills with Theraputty.

This evening we watched Harry Potter and the Chamber of Secrets – the second Harry Potter movie. Grayson was enthralled as usual with this story. He didn’t even pick up a book, something he does when the movie doesn’t hold his attention.

A good day today!

Pax!

Brant

Day 1002 – Grayson’s Journey

Dear family and friends,

Grayson continues to fight his cold which makes him slightly slower than usual but just as affectionate as ever.

Tonight Austin joined Brant, Grayson, Lauren, Zack and me for a quick family dinner at home. The talk wandered to college roommates and Grayson listened as he as he ate voraciously. What caught my attention was how he laughed as Austin was talking about his various roommates. He knew most of them and remembers crashing on their couch and sharing beers throughout their college careers.

A lot has been robbed from Grayson's future but his memories of those days will be with him always. We must remember to help him experience those few treasured memories by telling these stories. What a great reminder to all of us. For him it is the equivalent of "we'll always have Paris".

Enjoy your treasured memories.

Peace,

Regina

Day 1001 – Grayson’s Journey

Dear family and friends

The big event for our Sunday was to celebrate the 102^nd birthday of Grammy – a.k.a. Genevieve Sultenfuss. Grammy is tied into our family in many ways. Her late daughter Julie married Regina’s brother Howie. Gen was also the mentor to Regina’s father Howard as he got started in the real estate business. Her warmth and love are apparent in all that she does, and it wonderful to celebrate the joy that she still brings to life.

Of course Grayson was along for the celebration today. One of Grayson’s classmates from high school was also in attendance, as she is also one of Grammy’s many great-granddaughters. She looked so beautiful and full of life and promise. It was the first time that she had seen Grayson since his injury and was clearly moved by his condition. We spoke about how he is doing and her empathy was genuine. What a wonderful woman she has grown to become!

Tomorrow we are back to work – and without a caregiver for Grayson until Wednesday. This week is shaping up to be a challenge!

Pax!

Brant

Day 1000 – Grayson’s Journey

Dear family and friends

It is unbelievable that it has been 1000 days since I listened to that voice mail on my cell phone. I had just landed at Dallas-Fort Worth en route, or so I thought, to Philadelphia. I turned on my cell phone and listened to my messages. The first one was time stamped at almost the same time my plane took off earlier that day from Burbank. That message was from the Glendale Police Department informing me that Grayson had suffered a life threatening event and was being transported to the Glendale Adventist Medical Center. We were still taxiing to the terminal and I called Regina to see if this was some sort of mistake. Sadly I realized that it was not. Regina also received a call and met up with Grayson in the ER. At this point the medical professionals knew little and we had to take things minute by minute. By the time my plane reached the terminal, I was already on the phone with travel to book me back home. My work could wait.

I was scared. However, as scary as this was, we had been through something like this before in 2004 and Grayson was back on his feet in just a few days. The eternal optimist in me knew that this would probably end the same way and life would be back to normal in a week or so.

I couldn’t have been more wrong.

If you have been following this blog even the slightest, Grayson’s life as we knew it ended forever that day. He is no longer the independent, brilliant, articulate young man that we knew. While he has had a significant physical recovery, his cognitive deficits require him to be supervised during all of his waking hours. He is mostly non-verbal, has no short-term memory, and his fine motor skill deficits have left him unable to write, use a keyboard or tie his shoes. Yet we are blessed that his basic personality was left intact – he is loving, affectionate and wants to please. Just think how much worse this could have been if he were angry and uncooperative. At 6’2” tall that would be a real challenge.

Our lives were also forever changed that day. We went from empty-nesters to full-time caregivers. Retirement plans have been placed on hold indefinitely (assuming that our employers don’t have different ideas). We are now advocates for Grayson’s ongoing health needs, and legal conservators for him. While he could benefit from therapy – physical, occupational and speech – the measureable gain over time is insufficient for the insurance world to warrant the staggering investment in him. So we do the best we can. And before we decry the insurance companies, they have already spent roughly a million dollars to get Grayson to where he is today after his incident. While I may wish that health insurance carried a “take care of you forever” clause, none do. Their contract with you is to patch you up the best that they can, then you are on your own.

So as I was told the day after the incident, this is a marathon and not a sprint. We have just completed the first mile - 25 remaining. With God’s help we will carry on!

Pax!

Brant

Day 999 – Grayson’s Journey

Dear family and friends

The last day of triple digits.

Grayson started his day today as slow as molasses – he just couldn’t seem to get his cylinders firing. He ended it by failing to get his cylinders to slow down. When I put him to bed after the end of the Olympic coverage at midnight, he just couldn’t stay down and kept getting up and setting his door alarm off. Finally I laid down on his couch and dozed there until he slowed down and went to sleep.

Now it’s my turn!

Pax!

Brant

Day 998 – Grayson’s Journey

Dear family and friends

Grayson was still pretty non-verbal today, but his cold appears to be getting better. His energy is slowly coming back from the combined effects of the cold and the down-cycle. Today he was quite bright-eyed but quiet.

Danielle kept him mostly inside and did not go for a walk today because it was a very hot day - 95°. They played some games and Danielle had Grayson do some leg exercises with the Thera-Band. I am pleasantly surprised that he is doing well with the exercises as he is not predispositioned to sticking with them!

More power to Danielle!

Pax!

Brant

Day 997 – Grayson’s Journey

Dear family and friends

Grayson’s “cycle” continues upward – great news! Unfortunately he seems to have contracted a summer cold and is suffering with the effects of that. Good news and bad news I suppose!

Danielle, his caregiver, certainly has him hopping. I noticed in her notes today that he is using his Thera-Band under her supervision to do leg strengthening exercises. How great is that! If she can get him to continue with it he may be in better shape for the start of ski season – late December for us. I am really impressed with Danielle so far, and I look forward to reading her notes every evening!

Pax!

Brant

Day 996 – Grayson’s Journey

Dear family and friends

Grayson is slowly coming out of his down cycle. He was a bit more alert and focused all day. As I speculated last night, it looks as if we may be on our way back up!

In her report today, Grayson’s new caregiver (Danielle) reported that Grayson spoke a very clear sentence in response to one of the therapeutic home program (THP) questions. “What do Las Vegas, Reno and Monte Carlo have in common?” Grayson responded very loud and very clear – “Cities where people gamble!” To end the day, Danielle brought out some Spanish flash cards. To quote from her report, “he did very well!” I suspect that she had no clue that he took 4 years of Spanish in High School and placed into Spanish II in college. Proof once again that his long term memory is intact.

Celebrating an apparent return to an up-cycle,

Pax!

Brant

Day 995 – Grayson’s Journey

Dear family and friends

Back-to-work Monday! Today was so full I didn’t have time to breathe! The amount of things that have piled up in the three weeks since I have been in the office will keep me busy for a while.

Grayson showed signs of turning up from his down cycle. While it is too early to be sure, there were signs of improvement. Silly things like saying, “Good night Dad” and “I love you too” when I put him to bed are signs that he is on his way back up. We haven’t heard those words for more than a week as he has had difficulty expressing anything lately.

Improvement signs are showing – let’s pray that they stick around for a while!

Pax!

Brant

Day 994 – Grayson’s Journey

Dear family and friends

Today was a rare Sunday for us. We had been so overtaxed at work and in our personal lives that we decided to sleep in with the knowledge that a loving God would forgive us this once. Even though we missed the service this morning, my work in the technology world of my church continued! I spent an hour this evening reviewing data entry and making sure that all was well in the accounting area. Our church is a labor of love and that work continues!

Grayson continued in his down phase again today. I really have no good explanation as to why this phase has continued as long as it has. In the early days, these things seemed to run in 10ish day periods. Now the “clock” is out the window! I hope that this cycle ends soon and we get back to a more “competent” Grayson.

Blessings on your new week!

Pax!

Brant

Day 993 – Grayson’s Journey

Dear family and friends

Today we spent a busy day working around the house. Regina and I tackled some major garage-organizing tasks as we prepared to donate some stored items to a needy college student relative! Along the way we made some improvements in organization and a purge of some items that had outlived their usefulness.

Grayson was there with us all day. At one point while I was on a ladder, Regina utilized Grayson to help her carry things around. He is strong and can be helpful as long as he is able to maintain focus, and as long as the tasks do not require recently acquired knowledge. Which brings me to my point for the day – We all understand learning from our perspective. Once we learn a skill, we can expect to be able to utilize that skill in the future. The same can be expected from our children. This is not the case for Grayson. Any skill that he manages to learn may need to be relearned again tomorrow. Further, if tomorrow is a bad day, he may not even be able to accomplish the same things as he was able to the day before.

You never know exactly what you are going to get when you wake Grayson up in the morning. It is sort of like the Christmas present under the tree waiting to be explored – every morning!

Pax!

Brant

Day 992 – Grayson’s Journey

Dear family and friends

I arrived home from Seattle this evening and will remain home for the next 17 days. Grayson was glad to see me. He gave me a big hug and didn’t let go for a long time.

Tonight we went to dinner with Howie, Rita and Richard. Grayson was well behaved but he has been in a low place much of this past week. He had a tendency to try and leap up for no apparent reason before and during the meal, but I was generally able to get him back in his seat. In spite of the jumping-jack syndrome we had a wonderful dinner.

It’s great to be home for a while!

Pax!

Brant

Day 991 – Grayson’s Journey

Dear family and friends,

Tonight Grayson and I spent some time watching the Olympic games.

It is amazing to see such strength and accomplishment among these healthy, young people. They train so hard, for so long, and are so dedicated to reaching their goals. It takes everything they've got to find out just exactly what they are capable of.

Not everyone will reach the Olympics. Not everyone who does will earn a medal. Yesterday's records are broken and today's records will be broken tomorrow.

I couldn't help but look at Grayson and wonder what he is capable of. It's useless to make comparisons to other young men his age. It's equally futile to consider what his potential used to be or dwell on what he will never be able to do. The only thing that matters is what he is capable of today and work to stretch that capability every day.

The same thing is true for all of us. We can only start from where we are today, with what we have, for the time we have, and make the best of it. Some days we make a little progress; some days we slide backward; most days we struggle just to hold on to what progress we already gained.
 
You and I will never win an Olympic medal but I can say with certainty that there are far more valuable rewards to be gained. And the best part is – we are all qualified to participate. After all, life doesn't have to be a competition. Just live it and celebrate every day as if you and your family just set a personal best record.

Peace,

Regina