Day 227 – Grayson’s Journey

Dear family and friends

Wednesday is Order-Food-In Night! Grayson took advantage of this and ordered Chinese food. He ate all of the food, plus a jello cup which is good since he is at the bottom of the weight range for his height. He actually fit in Austin's old Scout shorts when we visited Camp Verdugo Oaks this past Saturday. Austin last wore those shorts five years ago!

After dinner, he did his therapeutic home program (THP) with his residential assistant (RA). Since the roommates were out, it was a blissful TV-free night! Grayson sat on the couch and read National Geographic magazines for quite some time. After he tired of this, his RA and Grayson took a walk outside and then they sat by the pool for a while. When they came back to the apartment, it was time for Grayson to get ready for bed.

Food brought in, reading on the couch, a walk outside and a chat by the pool. All in all a good day!

Pax!

Brant

Day 226 – Grayson’s Journey

Dear family and friends

Grayson had a good day today. He relaxed in his air conditioned apartment after he returned from the clinic, out of the near triple-digit temperature. He got dinner going a little earlier than usual tonight because he was hungry. As dinner was cooking, he did some laundry and took a shower. He sat down to a dinner of lasagna and salad clean and refreshed.

After dinner he did his therapeutic home program (THP), he mopped the kitchen and bathroom. While it was karaoke night tonight, Grayson was tired and did not want to go. He was in bed a bit before 8:00, and when I called he was listening to one of his birthday presents – the audio book, The Hitchhiker's Guide to the Galaxy.

So it was a quiet, uneventful summer evening. Life is good!

Pax!

Brant

Day 225 – Grayson’s Journey

Dear family and friends

Well, after a weekend to remember, it was back to the routine today – Monday morning! Grayson was on the bus to the clinic at 9:00 AM as usual, after getting up, showering, getting dressed, making and eating breakfast. When he returned to the residence, it was clear that he was in Bakersfield – it was almost 100 degrees! He joined his residential assistant (RA) and hung out in his air conditioned apartment for his regular 30 minutes. When his RA asked Grayson if he wanted to go in the pool, Grayson said no. The RA suspected that it was so hot outside that he didn't want to go out! They did some therapeutic home program (THP) questions instead.

After a bit, they defrosted chicken for dinner. While the chicken was defrosting, Grayson did a load of laundry, and folded and put away his clothes from the dryer. Grayson's drawers have been remarkably neat and organized the past two weeks. It was just a few weeks ago that Regina brought her label maker up and made labels for Grayson's drawers for t-shirts, pants, shorts, underwear, belts, socks etc. Since that time, Grayson had been able to put all of his things in the proper place, as opposed to the random access method he had before. For those familiar with "5S" methodology, this is a key part of defining how things are stored and order is maintained. It is a tool to help Grayson put things away in such a way that he is able to find them in the future. I found it amusing when we were making the labels that I found myself stuck on the spelling of the word "handkerchief". When I asked Grayson, he spelled it out in an instant. No long term memory problem there!

Back to the present, after the clean laundry was put away, and the dirty laundry in the wash, dinner prep was the next order of business. Grayson seasoned the now-defrosted chicken and popped it in the oven, under the watchful eye and with the advice of his RA. They made rice and broccoli to accompany it, and Grayson had his evening feast. He ate with gusto and cleaned his plate, earning a piece of leftover birthday cake for dessert.

After dinner Grayson and his RA took out the trash and checked the mail before having a short walk. They sat in the shaded area by the pool where we held his birthday party yesterday, and hung out and talked for over an hour. Grayson remembered his party, the cake and the fact that many people that he cared about were there. He was more than a little shaky on precisely who was there, but he remembered the feeling of being loved and cared about. Given his current memory state, I think that is pretty good. And we are grateful to all of you who made the pilgrimage to blistering Bakersfield to give the gift of yourselves. Grayson remembers feeling good about the day that you all made for him. God bless you all!

Pax!

Brant

Day 224 – Grayson’s Journey

Dear family and friends

Today was another big day for Grayson. On day two of his birthday weekend, he had a party! Austin and Xixi did a wonderful job of organizing a group of his high school and college friends to come up to the residence for a pool party and BBQ. We all had a great time!

Pictures can tell a better story than I ever could.

Although we had been telling Grayson for a few weeks, even as late as yesterday, that there would be a party today, he didn't remember. So effectively, we had a surprise party for him! Here is a picture of Grayson arriving to see all of his friends waiting for him.

Before lunch and swimming we took a group picture. Regina and I were the photographers, in case you couldn't find us in the picture.

Other shots – Birthday cake; Grayson being silly with Ria's hat; the Prep gang; opening gifts; frolicking in the pool; Grayson's smile says it all!

Twenty five years ago doctors told us that Grayson's heart condition was inoperable and that it was incompatible with life.  They were in error. Twenty five years later we still give God thanks for every single day.

Pax!

Brant and Regina

Day 223 – Grayson’s Journey

Dear family and friends

It's Grayson's birthday! We drove to Bakersfield to visit him and had the opportunity to spend a wonderful day together. Today we took a field trip – the first one to a place familiar to Grayson since his incident in November. We visited the Boy Scout Camp where Grayson spent so much time while growing up – Camp Verdugo Oaks. While there, we got to observe the 2010 National Scout Jamboree Troop from our local council. They were doing their "shakedown" outing – an overnight trip to practice the setup of their camp, and going over the last minute details before their adventure. Grayson was part of the 2001 National Scout Jamboree contingent, and he did this same outing 9 years ago. Here is a picture of us in front of the gateway to their camp. As you can tell, their theme was the rich aerospace history of our area.

The camp is also the place where Grayson spent Cub Scout summer camps in the mid-1990's, and where he performed as a member of the Order of the Arrow ceremonies team for many years. (The Order of the Arrow is Scouting's National Honor Society.) Here is a picture of the ceremonies team from the spring of 2002 that includes both Grayson and Austin. This is a place rich in history and good memories for Grayson.

Grayson was a joy to be with today. He spoke little, and when he did it was in one or two word chunks. He had no problem behavior today.

A quarter of a century ago, Regina celebrated her first day as a mother. Since that day we have had numerous joys with Grayson and our other two children. Life continues to offer us much to be thankful for.

Pax!

Brant

Day 222 – Grayson’s Journey

Dear family and friends

Today marks 5 months since arriving at the Centre for Neuro Skills. After 5 months, I am still impressed by this place!

Grayson was in a good mood and quite helpful tonight when he got home from the clinic. He took out the trash, collected the mail, helped make dinner, and did his therapeutic home program (THP). He even went upstairs and received some candy as an early birthday present from the office (tomorrow he turns 25). He got so much done so early, that they decided to go to Friday Night Movies!

While waiting to get in, Grayson started to demonstrate behavior problems, and had to be taken back to the residence. This was way too bad after such a good day. There is no explanation for it – it just is.

Tomorrow we go up to visit him for the weekend. Let's pray for good moods, good weather and safe travels.

Pax!

Brant

Day 221 – Grayson’s Journey

Dear family and friends,

We keep reminding ourselves that our daily reports are only based on feedback from 3:00 in the afternoon until bedtime. So we really don't know how he is doing with the therapy programs at the clinic. We assume that progress at the clinic is reflected in progress in his daily living skills at the residence.

In balance Grayson had a good afternoon and evening. According to his RA he was very cooperative and showed good improvement in several areas. Upon suggestion he referred to his picture check list to see what activities were on his schedule and immediately grabbed the mop and took it down the hallway. Regardless of whether the mopping was effective or not is immaterial. He initialed the task based on the checklist. That's a good thing.

During dinner preparation he stayed in the kitchen (another good thing) and used the can opener, stirred the food in the pan, and generally was quite cooperative. He needed several cues to keep focused on the tasks but all in all did pretty well.

He was able to remember his address yet not his phone number. He was able to remember his case manager's name when given the hint of the first initial. When asked for the date, Grayson immediately check the calendar. Knowing how to depend on tools will be critical skills for Grayson's daily living.

One of the exercises tonight was to listen to a paragraph and answer three or four questions about the paragraph. Sometimes he had to be directed back to the paragraph but he was able to search the paragraph and find the answers.

After dinner he went to the recreation center for art therapy. He was working to finish up a project started on a previous day – painting a jewelry box. Unfortunately, the TV was on in the recreation center so I'm afraid the art project was probably a distant second for attention.

When they returned to the apartment after art therapy, Grayson cooperated by taking his medications and brushing his teeth. After his shower, however, something triggered a negative reaction and he started punching his RA and trying to hold the RA's arm down. Encouraging him to stop just increased the behavior. The most effective RAs use a couple of different strategies when these behaviors surface. One is to back away so the behavior does not escalate. The other is to negotiate. For example, "Once you calm down (or stop hitting or pinching) we can go back to watching TV". One of these methods usually works and the negotiation worked tonight.

Brant and I know that life with Grayson will never be the same. We thank God that we have the opportunity to participate in his care and rehabilitation. We also treasure each new skill that we learn to help him along this journey – we have much to learn.

Thank you for your continued prayers and support.

Grace and peace,

Regina

Day 220 – Grayson’s Journey

Dear family and friends,

Grayson's RA needed to leave early this evening so I was given an abbreviated report on Grayson's day.

What I did find out was that there were little or no behavior challenges tonight. Hooray.

As part of his therapy, the staff engages Grayson is as many tasks of daily living as possible. As a result he helps to prepare his dinner most evenings. Tonight, however, he was allowed to order in and he ordered Mexican food from a local restaurant Que Pasa. Taquitos, rice and beans, chips and salsa. I just know he enjoyed them.

When I spoke with Grayson he was already snuggled in bed and sounded very sleepy. "Love you, too. See ya. Bye".

We love you, too, dear friends.

Grace and peace,

Regina

Day 219 – Grayson’s Journey

Dear family and friends

Today was a good day for Grayson, or at least for his parents. His behavior was not out of line, and he was quite helpful to his residential assistant (RA) this evening. They collected the mail today, and Grayson received a letter from his sister and another from another friend. He is always so glad to get mail. If you would like to send him a letter, email me and I will send you his contact information.

Today was a hot day in Bakersfield, and we are just in our second day of summer! (At least it is a dry heat. I'm in St Louis and it is FAR from a dry heat!) It was so hot, that Grayson and his RA had to go inside to do Grayson's therapeutic home program (THP). After turning off the TV to enable Grayson to focus, they were able to complete them with little problem.

Grayson helped prepare dinner, and his RA was impressed at Grayson's cooperation. He was scheduled to go to the rec center later for karaoke night, but since I'm two time zones ahead, I'll wait until tomorrow to tell you how things worked out!

Pax!

Brant

Day 218 – Grayson’s Journey

Dear family and friends,

This evening Grayson's RA (residential assistant) took Grayson for a walk in the park across from his residence. Before they left the apartment they reviewed the calendar that hangs on the wall in the living room. During the walk they sat at a picnic table and reviewed the daily orientation questions. He could not remember the day or month. He remembered his roommate's name. He had trouble remembering his current address tonight though Saturday he remembered it perfectly when I asked him.

After the walk Grayson was asked what he wanted for dinner and he selected chicken. While the chicken was defrosting, Grayson was encouraged to review his daily checklist to see what needed to be done. Among the tasks was cleaning the restroom. Grayson's response was "no". The next task was doing his "THPs" (therapeutic home program). Grayson said that he would rather go clean the restroom. He made a choice.

Grayson cleaned one sink while the RA cleaned the other. He helped clean the shower and the mirrors and was rather helpful with the entire task.

After this successful activity Grayson proceeded to prepare his dinner. He seasoned the chicken with his own selection of seasonings - garlic, salt and pepper – and put it on to cook.

During the cooking time Grayson and the RA worked on his THPs. Tonight's questions included memorization of a series of words. The RA would read a series of three words, read the series a second time and ask Grayson to repeat the words back. Grayson did well on this task and quickly answered correctly. By the time the series progressed to four words, a roommate turned on the TV and it became nearly impossible for Grayson to concentrate. At best could remember only two words even with cueing to focus. When the TV was finally turned off, Grayson was able to remember all four words.

How much we take for granted our ability to multi-task. Multi-tasking is not actually doing two things at the same time but rather switching back and forth between them rapidly. This function is currently quite a challenge for Grayson - a far cry from the guy who formerly had three computer screens going at any time on his desk.

Slowing down, turning off distractions and focusing is a good lesson for all of us – whether it is in our work, in our relationships or in prayer. I'm trying to learn it in my own life.

Grace and peace to each of you.

Regina

Day 217 – Grayson’s Journey

Dear family and friends

Today was a good day with no incidents of problem behavior. Now that is a great Father's Day present!

Grayson's residential assistant (RA) said that Grayson was cooperative and helpful all day. When she came on duty this afternoon he was relaxing. The first thing that they did was to put away groceries. (Grayson did not make the grocery run yesterday, so they brought food from the market for him today.) Since Grayson was now up and moving, his RA had him check his picture checklist for chores. Today's chore was to mop the hallway and clean the bathroom. Based on the report he did this task well!

Then Grayson's RA led him through his therapeutic home program (THP). He did his orientation questions well, then he tackled another type of THP – the "What would you do if" questions. For example, "What would you do if there was a fire in your living room?" A good answer would be to call 911. To the question, "What would you do if the dog next door barked all night long?" Grayson responded, "Bark back!"

I spoke with Grayson briefly tonight while I was celebrating Father's Day with Regina, Lauren, Austin and Xixi. Grayson wished me a happy day over the phone and the rest of the family treated me like a king. Today was a special day and I felt lots of love.

Pax!

Brant

Day 216 – Grayson’s Journey

Dear family and friends

We had a nice visit with Grayson today. We took him to lunch and then ran some errands around town. While at Sport Chalet, we ran into his occupational therapist and had a wonderful chat. As any parent would understand, it is truly special to know how much people genuinely care about and like your children. Everyone we have met at CNS really seems to care about Grayson and we are grateful beyond words.

After our errands, we had what is becoming our weekly tradition – an ice cream treat! While I may need to put another 2 hours in on the treadmill this week, Regina and I enjoy this special little time with Grayson. At Cold Stone (one of about three ice creameries we frequent) we get to watch the fountain, the birds and lots of joyful and playful children. It is a nice venue to sit on a summer afternoon and Grayson seemed quite content to sit and enjoy.

After ice cream we returned to the residence for some pool time. The cool soak is always welcome in the Bakersfield summer heat, although the really hot weather has not yet arrived. Today it only got up to the high 80's – positively balmy!

After leaving the pool and getting dressed, Grayson did his therapeutic home program (THP). Today one of the exercises was for Grayson to tell the cause of an event. For example, if the event was, "You overslept" the cause might be that you forgot to set the alarm clock. One of the questions Grayson was asked was, "A fire is started", to which Grayson responded, "Boy Scouts"!

Grayson was scheduled to go to a play this evening, so we left him getting ready to sit down for dinner, and we departed for home. When I checked in later this evening, he had some "issues" and the staff decided that the play was a bad idea, especially given that the curtain and Grayson's normal bedtime coincided. It was the right choice.

One of the nice things about spending some time with him in person is that we get to give our perspective on how he appears to be doing. I would describe Grayson today as having more energy, slightly more verbal, much more alert and fewer periods of getting "stuck". I would also say that he was wound a bit tight and was jumpy all day. He had a robust appetite at lunch and dinner was also a plate-cleaning experience. In general it seemed to us that he was more mentally active. He has also had several incidents of problem behavior in the past two weeks. Perhaps all of this is interrelated and maybe, just maybe, we are seeing some new growth or recovery. We sure hope and pray that this is so!

Pax!

Brant

Day 215 – Grayson’s Journey

Dear family and friends

Friday night – Movie night! And, as usual, I had no opportunity to talk to either Grayson or his residential assistant (RA). Tomorrow he is up and off to the store for groceries. When he returns, we will be there to greet him, have lunch and whatever else the day presents.

I realize that I never completed my report out on the last weeks' patient conference. I'll share a bit from his counselor tonight.

Grayson currently has good self esteem. He has the ability to respond to questions, but he does not have the ability to initiate a conversation. His responses are usually 1 and 2 word answers – rarely more. His awareness is generally limited to here and now. He appears to be gaining greater appreciation of the fact that he has a brain injury. He is able to tell you that he has a brain injury, and he continues to learn more as he is educated about coping with it. At this point, he has not yet recovered enough to understand how much capability he has lost due to the injury. In some ways this is good, because he remains in relatively good spirits as a result of being in this ignorant bliss. Once the reality of losses moves to awareness, we anticipate a period of depression. At this point, we are not sure how long it will take for Grayson to become aware of his loss.

There are a few more small elements of the patient conference that I haven't reported out on and I will do so if time permits – my time, that is! We are off to Bakersfield in the morning. Pray for safe travel!

Pax!

Brant

Day 214 – Grayson’s Journey

Dear family and friends

The Lakers are the world champions and Grayson had a second incident-free day today – Woo Hoo! It is a bit humbling to be relieved that there were no bad reports. In all the years of parenting Grayson to adulthood, "bad" reports were something we rarely received.

Following his regular rest period after returning home from the clinic, he helped prepare dinner, took out the trash, checked the mail and did his therapeutic home program (THP). After THPs, he went over to the rec center for Art Therapy. He spent quite a bit of time painting a box, before running out of steam. He returned to his apartment and got ready for bed right away.

I spoke with Grayson before the start of the fourth quarter (like I wasn't watching the NBA Finals!), about 8:00, and he was already in bed, but not yet asleep. He remembered nothing of his day, his activities, or his dinner. We chatted for a bit, and I told him that I loved him – something he appeared to enjoy hearing. In spite of his severe challenges, Grayson is still a great joy.

Pax!

Brant

Day 213 – Grayson’s Journey

Dear family and friends

Today was a better day – Whew! There were no incidents of problem behavior today. That being said, Grayson was in a relatively un-stimulating environment, so there was little to cause him to become overwhelmed or get upset. No matter the reason, I will take the lack of "behavior" and be thankful. (In the biz, the term "behavior" is never used in a positive sense.)

After returning from the clinic, Grayson relaxed for a bit. Around 5:30, his residential assistant (RA) took Grayson for a walk. They went across the street to the park and walked around there for a while. On the way back to the apartment Grayson checked the mail. His RA told me that Grayson knew what mailbox was his. It is a BIG deal that Grayson can identify his mailbox from the many that are there. This means that the item has been repeated enough that it has earned a place in accessible memory – awesome news. Also a bit humbling – after seven months, he can now remember what mailbox is his. A journey of miles, measured in inches.

Grayson had a treat tonight – it was "order in" night. Tonight Chili's was the restaurant, and Grayson ordered the bacon ranch, chicken quesadilla. He enjoyed his dinner, especially since he didn't have to cook or clean up (such a guy!). He did his therapeutic home program (THP) after dinner, and did very well on his orientation questions, remembering his newest roommate's name for the first time.

Grayson finished the evening reading his National Geographic in bed until he fell asleep around 8:00. This was particular early for Grayson, as he usually lies in bed awake for a few hours before sleeping. Tonight he was lights out quickly. I say that this was a good day, and that I have much to be thankful for!

Pax!

Brant

Day 212 – Grayson’s Journey

Dear family and friends

I wish that I had good behavior to report today. In fact I do have some – Grayson was quite pleasant when 1-on-1 with his residential assistant (RA) today. They had a nice walk in the park. They checked the mail on the way back to the apartment and Grayson noticed an article in the newspaper in the news stand next to the mail boxes. The article was about local Cub Scouting. He was staring and reading the article so his RA suggested that they buy the paper. Grayson agreed. They went upstairs to the office to check out some of Grayson's money and purchased the paper.

Grayson helped with dinner and then went to the rec center for karaoke night. He was doing fine for a while, until he hit another patient. When the RAs moved in to keep the peace, he struck one of them. He was separated from the group and walked back to his apartment. There he calmed down, and enjoyed reading the newspaper he had purchased earlier. He went to bed around 7:30 and stayed there until he went to sleep.

This is where we are this week. Regina and I hope that this difficult period is a sign of improved neurological signals and growth. It sure doesn't feel like it. I pray that it is improvement and that we get through this phase quickly.

Pax!

Brant

Day 211 – Grayson’s Journey

Dear family and friends

Grayson was tired today when he returned from the clinic. He slept on the bus and then rested his customary 30 minutes after returning to the residence. When rest time was over, he chose to do his therapeutic home program (THP) from his picture checklist. Today he worked on the proper steps to do a task. He is given 4 steps and he needs to put them in order (Hotel Stay – Make reservation; check in at front desk; get key; move in to room). He did 10 of the 20 questions before becoming frustrated and tired and putting his head down.

Grayson's residential assistant (RA) then had him start to help with dinner prep. During the preparation, Grayson spotted some cookies, and started to try and open the package. I suspect that the cookies were not Grayson's because his roommate said something about it. Grayson took a swing at him, and the RA's kept the two of them apart. Grayson was guided to the recliner in the living room, and was handed the comics. Five minutes later, it was if nothing had happened. He had dinner, took out the trash, cleaned the bathroom and got ready for bed. When I spoke with him tonight, he didn't remember a thing.

I am SO ready for this to pass. These young men are coping with brain injury and neither have socially appropriate responses to frustration and anger. Fortunately, the staff does a wonderful job of keeping the peace and helping each grow to their capacity. While we are frustrated, we are grateful for the caring attitude and helpfulness of the staff. The Lord led us here for a reason. I suspect that He knew that this was the road that we would have to travel and wanted us in the right place.

Pax!

Brant

Day 210 – Grayson’s Journey

Dear family and friends

Today was not a good day for Grayson. For some reason, Grayson was in the grip of the grumpies. The day started to go sour when he responded by hitting another patient in response to an inappropriate comment. The day just didn't get any better, and several other incidents of negative behavior occurred as the day continued. Finally, he went to bed at 7:30, and listened to his audio book, The Hobbit until he went to sleep a few hours later.

Why the sudden increase of aggressive behavior? We have no idea. In looking for the positive side, perhaps this is good news. In the past, if he had negative behavior, he would sit out and cool down for a few minutes, then it would be forgotten – literally forgotten, as Grayson's short term memory is just awful. Today the feelings, emotion or something did not go away. He was upset for hours. Perhaps the brain is again showing its healing side and we should rejoice, but these incidents are just a bit tough to take.

So tomorrow is another day. The sun will come up. Let us pray that Grayson will find another way to express his feelings.

Pax!

Brant

Day 209 – Grayson’s Journey

Dear family and friends

Today it was only 90 in Bakersfield – positively balmy! We enjoyed our day with Grayson. We had a treat at Cold Stone, though I starting to worry that our attempts at putting more weight on Grayson is only adding pounds to me! We had a leisurely early afternoon shopping, including the acquisition of a new pair of sunglasses for Grayson. Later we returned to the residence for an hour or so of pool and cool time.
Regina played with Grayson in and around the pool. They tossed a ball, threw a Frisbee, splashed in the water and worked on swimming. Grayson still has some deficits on the right side that we noted, as he was unable to catch the ball right handed, but he was with his left.

Grayson seemed very low energy and subdued all day and he was rather non-verbal. He also had several times where he got "stuck", unable to do things he has the capacity and the desire to do, but unable to start. He was like that getting out of the car, getting into the pool, and getting dressed.

This evening, Grayson attended a play at a local theater. So we said our farewells, and hugged him good bye as he boarded the bus for the play. It was a nice visit, and a beautiful day to spend outdoors!

Pax!

Brant

Day 208 – Grayson’s Journey

Dear family and friends

It's Friday night – Movie night!

Grayson arrived back from the clinic this afternoon and he was happy and helpful. He uncharacteristically picked up the cleaning wipes and headed into the bathroom to clean it, without being asked. His roommate was watching TV, but when Grayson was prompted to take out the trash, he jumped up to do it. (Grayson ignoring the TV is a huge shock!) He actively helped to prepare his dinner and was happy to be getting ready for the movies. During the bus ride to the theater, he was playing games with the activities coordinator. While in line waiting to go in to the theatre, he was smiling and happy.

Then behavior problems set in, as he had an altercation first with another patient, then the residential assistants (RA) as they tried to control the situation. Grayson got to take a bus back to the residence without seeing the movie, and got an early opportunity to turn in. Well, late for Grayson, but still earlier than he would have otherwise.

Why the behavior? Who knows? Sometimes he is triggered by outside events or stimulus, sometimes by internal issues. One more brain injury challenge we will have to learn to live and cope with.

Pax!

Brant

Day 207 – Grayson’s Journey

Dear family and friends

Grayson had a good day today. He did his therapeutic home program (THP) on the back patio of his apartment while his chicken was baking for dinner. After dinner and clean-up, he picked up the mail. Today he received a letter from a friend that included pictures. This always makes Grayson's day! He put them back in his apartment then went for a walk around the nearby park with his residential assistant (RA). After the walk he got ready for bed, then lay down and listened to The Hobbit, one of his audio books, before slowly drifting off to sleep.

Continuing my debrief on yesterday's patient conference, I'll talk about occupational therapy this evening. Grayson's grip and pinch strength is assumed to be about a 4 on a scale of 1 to 5. The "assumed" part is that it is difficult to measure due to a lack of compliance with the test. He continues to get stuck in the beginning of multi-step activities, even though he has the ability and the desire to complete them.

Grayson is spending a lot of time in the kitchen, as this is such a necessary part of living. He is very curious with the stove, and keeps everyone on their toes for fear that he will burn himself. His short term memory is so bad, that each day he has to relearn where the pots are stored, and after the dishes are done an hour later, he needs to learn it again to put them away.

Grayson has the entire staff laughing at some of the interesting things that he says when refusing to do tasks. Typically his responses have a historical base ("FDR wound have done it that way" or "I won't do that with my arm - it looks too much like a salute to Hitler!") Compared to many of the patients, Grayson is very well read. Actually, Grayson is very well read compared to most people (thanks, teachers)! The worst punishment we could give him and his brother when they were little was to take their reading time away before bed.

Grayson's sense of taste and smell are significantly altered, but not gone as feared earlier. Through smell, he is able to accurately identify pepper, lilac and cinnamon, but he is unable to smell smoke. His taste is pretty significantly impaired, as he is only able to identify salt.

To keep Grayson motivated, the staff has developed a reward system for him. His reward of choice is almost always a few minutes of computer time. He is not able to do much more than watch as the keyboard is too much for him, but this has been a breakthrough motivator for him. For the last 5 minutes of his hour-long session, he gets a reward if he focuses and completes the goals that he helps set at the beginning of the session. Good stuff!

Grayson's functional problem solving is ok, but not great. His initial responses are good, but the follow on actions are not. For example, when asked what he would do if the house was on fire, his initial response was, "Call 9-1-1". Good. Then what? "I don't know." Would he be able to understand the danger and get himself out of the house? We don't know for sure, but that is why Grayson is expected to require supervision during waking hours for quite a while – measured in years.

More tomorrow!

Pax!

Brant

Day 206 – Grayson’s Journey

Dear family and friends

Today Regina and I participated in a two hour patient conference with the Centre for Neuro Skills. All of the therapies were represented, and we received an awesome report (as we have come to expect) of the work that they are doing, and the progress Grayson is making. I'll do my best to boil it down over the next few days so you can get a glimpse with us into the work that Grayson does at the clinic.

We always get an education whenever we have these conferences. One of the things that we learned today was how anoxia (lack of oxygen) affects the brain. The deep structures of the brain are affected first. This includes areas like new memory, and some very basic functions that can affect continence, and the ability to carry out a task, even though the desire and the capability is present (apraxia).

From speech therapy, Grayson improved this month. He has required increasing less cueing at sorting tasks. He can become overwhelmed, but he does understand instructions. For example, if given instructions to sort cards into suits, then handed a deck of cards, he becomes overwhelmed, and throws the cards on the table. If, however, he is handed the cards one at a time, he will sort the entire deck. Grayson's best days are described as: capable of standing up when asked, walking where instructed, and needing prompts and cues to accomplish tasks. His worst days require hand-over-hand help, and are marked with Grayson exiting the area to avoid work or striking out at those prompting the work.

In the residential program, Grayson's independent living score (ILS) is improved, but still well below that which is needed for most residential situations. His incidence of problem behavior is reduced, and his full cooperation has increased to 51% of the time.

I'll try and share more tomorrow. As said previously, this is a journey of miles where progress is measured in inches. Fortunately we are not alone on this journey.

Pax!

Brant

Day 205 – Grayson’s Journey

Dear family and friends,

The Los Angeles Lakers won tonight.

The Los Angeles Dodgers won tonight.

Several candidates are winning nominations tonight.

Grayson sang karaoke tonight and had a great time.

It's all about perspective.

Grace and peace,

Regina

Day 204 – Grayson’s Journey

Dear family and friends,

I called Grayson several times this evening there was no answer in his apartment. I took this as a positive sign that he was somewhere else in the complex enjoying some joint activity with other residents. When I finally made contact with him he was snuggled in bed and ready to doze off into dreamland. His RA was not able to chat as she was busy supervising the bedtime routine for another of his roommates. This may seem minor but in actuality it is a major improvement. It means that Grayson's behavior is stable enough for her to supervise more than one resident at a time for at least a portion of the evening. It doesn't mean he can be left unattended yet but keeping an eye on his doorway from the next room is a step in the right direction, even if it is just once in a while.

Tomorrow is our regular conference with all of the therapists responsible for Grayson's care. Since most of the feedback we receive daily is either from the staff at the residence or from our own observation, we are always quite eager to hear how he is progressing in the specific areas of therapy addressed at the clinic. Tune in tomorrow for more details.

Brant and I want you to know how much it means to us that, even after these many months, you still care enough to keep checking on our family. We appreciate each of your comments and can feel the support of your love and prayers. May God bless you all.

Grace and peace to each of you.

Regina

Day 203 – Grayson’s Journey

Dear family and friends

Grayson had a good and relaxing day today. He was able to sleep in this morning, since we were not there to take him to church. We attended the annual church musical with our own congregation this morning, and it was a wonderful service. I am sorry that Grayson couldn't be there with us, as he had been a part of so many of these in the past. Here is a rerun of a clip of this church musical from 2007, where Grayson and Austin joined me as we performed the parable of the prodigal son.

Today Grayson did his chores consisting of 2 loads of laundry and mopping of the floors. He did these tasks with little prompting today.

Grayson did his therapeutic home program (THP) this afternoon. He did well on his orientation questions, and this is one of several days in a row where he has remembered the address of the residence. This is great news as he has had much difficulty remembering the address in all but the past few days. It is also a safety issue should he stray away from the residence. If he knows the address, helpers can bring him home. Other THP's he did today are fill-in-the-blanks and the pairing of opposites.

For dinner this evening, he teamed up with one of his roommates to make baked pork chops with potatoes. After dinner they relaxed with some TV time until it was time for bed. It was a good day!

Pax!

Brant

Day 202 – Grayson’s Journey

Dear family and friends,

As we drove the 107 miles each way to see Grayson today, I was struck again with the marked contrast in the scenery from what it was when we started our weekly sojourn in January. In January there was snow in the pass and on the mountain peaks. As the snow melted the spectacular flower fields came into bloom – bright purples, yellows and oranges set off against vivid green grasses. Now the grasses have dried to golden and the hills are nearly devoid of flowers save the yellow weeds and cactus blossoms. The temperature has moved from the 30s and 40s to the mid 90s.

We also see a marked contrast in Grayson from January. He is brighter, less tired (though still moving somewhat in slow motion) and his hand tremors are greatly reduced. He is physically stronger, and able to make more decisions for himself with prompting. His speech is still unclear though understandable when he is encouraged to slow his pace. He chooses very short answers likely because of the frustration of his words tumbling out on top of each other and knowing he is difficult to understand. It must be hard to be asked to repeat yourself so frequently.

His cognitive abilities also seem to be improving. Tonight he completed several sections of exercises with his RA accurately answering questions about what was read to him and finding commonality in sets of words. He even remembered his address again.

Our day with Grayson was filled with many simple and delightful moments. For example, for lunch today we took him to a brand new Bob's Big Boy restaurant in Bakersfield. This particular location has only been open a week and yet it felt as familiar as if we were in Burbank. As a side note, the statue in front of this new location was stolen during this first week and has already been returned and reinstalled.

After lunch we ran errands to Costco, filled the car with gas, and hunted for pottery for my brother and his wife. Because we move slowly with Grayson, these simple errands, that you or I could finish in short order, can stretch out many hours. The outdoor walk through the pottery yard in the hot afternoon sun soon had us looking forward to taking a dip in the pool back at his residence. Grayson was quite eager to change into his bathing suit though he "got stuck" for a short time while changing clothes. When we sprayed sunscreen on him he cringed much less than last week and got into the pool more quickly. He was able to pull himself out of the side of the pool again but with much less effort than the week before.

While we sat by the pool in the shade we encouraged him to drink water and handed him a half liter bottle. He took a couple of sips and put the bottle down. I challenged him to drink more than a couple of sips and asked him to drink down to the top of the label. He looked keenly at the label and started drinking. He stopped, checked the label again and drank some more – repeating until he reached precisely the top of the label. He put the bottle down and grinned at me. How very engineer-like. I was delighted that he took the challenge, set a goal, and completed it.

These mundane things may all seem small accomplishments but as we have said before, this is a journey of inches. Progress is progress and worthy of celebration.

Today I read to him from an amusing book entitled, Anguished English, An Anthology of Accidental Assaults Upon Our Language by Richard Lederer. To hear Grayson sit there and laugh his way through this crazy collection of language bloopers, two-headed headlines and mixed-up metaphors – I couldn't help but be thankful that the injury to his brain has left his sense of humor in pretty good shape.

Brant and I thank God for the opportunity to share these days with Grayson as well as for the opportunity to share the journey with each of you.

Grace and peace,

Regina

Day 201 – Grayson’s Journey

Dear family and friends

It's Friday – must be movie night! Grayson was off at the movies when I called earlier this evening. I called back at 10:10 just as the transportation bus arrived back at the residence. After a few minutes I got to speak with his residential assistant (RA) to get a report and then I had an opportunity to speak with Grayson.

Grayson was getting ready for bed, but he was still excited about the movies. When I asked him what he did tonight he said, "The movies!" (He remembered – that's good!) I asked him what he saw, and he couldn't remember. He also couldn't remember if it was an action or a comedy. He did remember having fun! I told him that we would see him in the morning, then said my farewell so he could get to bed – 10:30 – very late for Grayson!

I spoke with his RA and he said that Grayson was very well behaved this evening. The movie that they watched was Get Him to the Greek. The RA said that Grayson laughed out loud for most of the movie – what a treat! Prior to the movies, Grayson did his usual activities – chores (vacuuming and taking out the trash), dinner (chicken and mashed potatoes), walk, and his therapeutic home program (THP). I think that it was a good day!

Pax!

Brant

Day 200 – Grayson’s Journey

Dear family and friends

Can it really be 200 days? It seems both so short a time, and so long a time. We are just at the beginning of our journey.

Grayson had a good day today. He was well behaved and calm all evening. After he arrived back from transportation, he watched his usual 30 minutes of TV before starting chores. Tonight his chore was to clean the bathroom. His residential assistant (RA) remarked that he was much more helpful and cooperative than usual as this is his least favorite chore. Duh!

His dinner tonight was pizza and a salad, with a fruit cocktail for dessert. The pizza was frozen so he did not have much difficulty preparing it. Tonight when he finished eating, he left the table and took his plates to the kitchen to wash without being prompted. This is good!

Grayson worked on his therapeutic home program (THP) after dinner. Tonight in addition to the orientation questions (the address, phone number, etc.) he was given 4 words, then asked to choose one. (Blanket, shoe, newspaper, box – which one is the softest?) He was doing so well that the questions became progressively more difficult. He stuck with this exercise for almost 45 minutes – an extended period for Grayson. This is also good!

This month, Grayson has had a lot of backsliding. Fortunately, in the last few days things look like they are starting to turn around again.

Pax!

Brant

Day 199 – Grayson’s Journey

Dear family and friends

Grayson had a good day today. When he arrived back at the residence from the clinic, he quickly jumped on his chores and tasks. He did laundry first, before helping to prepare dinner. After dinner and clean-up, Grayson went to get the mail. Today he got a card from one of my cousins. He was so excited to get the card, that he ripped it open in the parking lot, read it, and beamed all the way back to his apartment. Since email, IM's and Facebook are no longer an option for Grayson to be touched by friends around the globe, the old fashioned way is pretty cool. Thanks to all of you who have sent him cards and letters. He is always so happy to get them, and they are always neatly laid out to show off when we arrive on the weekends.

After the mail run, Grayson did his therapeutic home program (THP). Tonight one of his THP's was to listen to a paragraph of information, then to answer questions on the material. He did very well at this. Because he did all of his tasks in such a short time, he got some extra TV time.

Tonight was Bingo night at the rec center. Grayson was excited and energized to go and play Bingo with the rest of the residents. He stayed and participated for over an hour before he needed to go to bed. I spoke with him just as he climbed into bed. Unfortunately, he didn't remember a thing about what had happened this evening. Such is the way with brain injury. Improvement is measured in months and years, not days and weeks.

Pax!

Brant

Day 198 – Grayson’s Journey

Dear family and friends

Grayson had a good day today. When he arrived back at the residence from the clinic, he was "stuck" in the bus for a while, but his residential assistant (RA) was able to get him up and moving. Grayson was particularly helpful with dinner prep tonight, adding ingredients to the stir-fry that his RA helped him make. He finished all of his dinner, which is a good thing as he looks as thin as ever.

His cleaning task tonight was to mop the hard floors. He did an exceptional task in the hallway, according to his RA, and she made particular note that perhaps it was because there are so few things to dodge, unlike the kitchen.

Grayson did his therapeutic home program (THP) and completed his orientation questions, some yes/no answer questions, then a series of sentences where he had to answer questions about the content. He did well on all of them.

After finishing his THP's, Grayson went to the rec center to spend the rest of his evening with other residents singing karaoke. He was down there a good long while, and didn't return to his unit until well after 9:00 PM. He was in bed but not yet asleep when I spoke with him. I asked him if he had fun tonight, and he heartily agreed!

Pax!

Brant