Day 166 – Grayson’s Journey

Dear family and friends

Because of my travel, tonight was the first time since Monday that I had the opportunity to speak with Grayson. He was tired and it was a very short conversation, but it was great to hear his voice. I asked him what he did tonight, and he said that they had gone to the movies. I asked him what he had watched, and he said that he didn't remember.

According to his residential assistant (RA), he had a good night. He folded his laundry, checked the mail, vacuumed and dusted his room, gathered and took out the trash, helped prepare dinner, cleaned the dishes after dinner and then went to the movies. The movie that he watched this evening was Nightmare on Elm Street. He ordered and purchased his own candy and a soda before the show. It was quite a busy evening, and he had just gotten into bed when I had called at 10:30.

We will see him in the morning after the grocery run, and we are looking forward to spending some time with him in the rapidly warming Bakersfield!

Pax!

Brant

Day 165 – Grayson’s Journey

Dear family and friends,

"Grayson had a really great day". This was the first thing I heard from Grayson's RA when I called the apartment tonight.

After returning from the clinic this afternoon, Grayson was offered a time to relax on the couch. He told the RA that he didn't want to just relax. This is a departure from his normal routine which is to sit and watch TV for a ½ hour or so. Instead he agreed to get his lunch ready for Friday by choosing to prepare a sandwich, pack a yogurt and fruit.

Since his attention level continued to be relatively high the RA led him straight to his homework (which went very smoothly) followed by dinner preparations. Grayson selected a large lasagna. When it was pointed out that it would take at least an hour to cook he indicated that it was OK with him. He read the directions, preheated the oven, cooked the lasagna, and set the table. While the lasagna cooked Grayson "chilled on the couch" for a while and did NOT turn on the TV. When asked if he wanted to go for a walk he eagerly said, "Let's go". He walked several laps around the complex, stopping to shoot two or three baskets at the basketball court. He really enjoyed walking and talking with the RA.

Thursday is usually movie night at a local outdoor amphitheatre. Since the prediction was rain, they decided outdoors was not the way to go. Both Grayson and his roommate still wanted to go to the movies so the RA suggested he drive them to an indoor theatre - and off went the four of them. Two patients and two RAs. The movie was "Death at a Funeral" and it had Grayson laughing the whole time.

How incredibly blessed we are that he has staff who respect him and patiently cue him so that he can made decisions for himself. Many of the staff are creative and flexible enough to take advantage of the moments where Grayson is receptive and energetic rather than just sitting him down in front of the electronic babysitter (TV).

What I miss most from these daily updates is how Grayson is doing at the clinic with his other therapies. For that feedback we must wait until our group conference with the therapists. I can only hope that the progress in those therapies reflects the progress we see at the residence.

Even though I missed speaking with Grayson tonight (he went straight to bed when they finally returned around 10:00), I am encouraged by the "really great day" comment I mentioned at the start and I look forward to Brant coming home from St. Louis tomorrow night. For this and all our blessings, I give thanks to God.

Grace and peace,

Regina

Day 164 – Grayson’s Journey

Dear family and friends,

Grayson was a little out of focus today and "antsy" according to his staff. He stood up and started walking away several times during his home program tonight. With the enticement of a walk and playing some basketball he managed to get through all of his homework.

As Grayson was getting ready to go on his walk, he again got stuck and couldn't/wouldn't get out of his chair. Unfortunately, without giving you too many details, this led Grayson and another patient to get a good lesson in conflict resolution. Eventually they shook hands and walked to the mailbox. The rest of the evening, he played basketball, ping pong, and colored in a coloring book.

Nearly every day we ask Grayson if he remembers going to the clinic and the answer is usually "no". Tonight when I asked, he not only remembered going to the clinic but said he was "working out" there. He also used the calendar to name the date and checked the clock to tell the time.

This is a journey of miles and every inch is progress. Thanks be to God.

Grace and peace,

Regina

Day 163 – Grayson’s Journey

Dear family and friends,

What an encouraging report I received tonight during our nightly call to Grayson. When I asked his RA (residential assistant) how everything was this evening she gushed and said that the last three days he has been doing "so great". Naturally, I was excited to hear more of what had her so enthusiastic. So here are some of the details.

After returning from a full day of therapies at the clinic, a free/rest period and dinner preparations, the RA said, "Let's go do laundry". Grayson got right up from his chair, went with her to his room, retrieved his laundry basket and started his laundry. His willingness to get right to the chore is what had her so excited. There was no need for coaxing. (Hooray!) He still needed some cueing to complete the sequence of actions. For example, he stuck his hand into the laundry basket and held it there forgetting to grab the clothes. With gentle prompting he was able to complete everything.

Grayson's cooperative attitude continued later when she led him through other housekeeping tasks. He mopped the kitchen and bathroom floors and wiped the kitchen counters. (Made me feel a bit guilty about my own housekeeping this week).

His THPs (therapeutic home program) were also productive tonight. As Brant has mentioned the staff asks a series of orientation questions every day. Tonight, Grayson was able to correctly identify the date. (Woo hoo!) She thinks he referenced the calendar on the wall but is not sure. If he did, this is a major accomplishment. With brain injury, one of the most important skills is to learn to use the tools available where memory used to suffice.

Another section of his THP's was a list of 40 objects. Grayson had to identify in which group each object belonged. The fact that he stuck with the exercise through all 40 objects impressed me.

In the last section he was presented with picture pairs. Grayson had to explain how the objects were alike and how they were different. This was a really good exercise because it was open-ended. He had to use his own words to describe the similarities and differences. For example, a picture of pills and a picture of a shot. Among Grayson's answers: Alike – both use special formulas, both are medicines. Differences – administered differently; one liquid, one solid. Even though one word answers come more easily, the staff works at stretching and challenging him daily.

After all of this, he spent about 45 minutes singing karaoke and then returned to watch one of his current favorite TV shows "America's Funniest Videos". I can hear him laughing out loud and it makes me smile – and there is so much to smile about.

Grace and peace to each of you.

Regina

Day 162 – Grayson’s Journey

Dear family and friends,

Yesterday, I mentioned that Grayson went to the California Living Museum (CALM). The feedback I received tonight was that Grayson really enjoyed the fieldtrip. He said it was like a zoo. The staff said he was particularly taken with the bird exhibit and when I quizzed him Grayson remembered seeing owls at the exhibit. He sat for a long time, studying the different birds. When I inquired if there were any "furry" animals he remembered seeing a fox and it reminded him of "dad". This brought a smile to my face, because in our Scouting careers, Brant is a fox and I am an owl. Yay for memory recall – even a small one.

According to his residential assistant (RA), Grayson was quite cooperative, got right up and helped prepare his dinner. He completed three pages of his THPs (therapeutic home program). One section was comprised of a series sentences each followed by a question. Grayson answered each question accurately allowing him to move up the difficulty scale. Two cheers for Grayson.

The next section was a series of situation statements with a corresponding question asking the cause of the situation. A simple example would be, "There are no clean socks. What would the cause be?" Grayson also did well on these questions. Three cheers for Grayson.

When the RA went on her dinner break, someone else filled in for her. As with many patients with a brain injury change can be a challenge. Grayson wouldn't cooperate with this new individual. When another, more familiar staff person took over Grayson again became a little more cooperative. He took out the trash and went for a walk. He did have a behavioral issue and hit the RA on the back. Grayson claimed he was "playing" and with prompting apologized for hitting him. Recognizing inappropriate behavior and the beginnings of behavior correction seem like a significant step in the right direction.

Tonight after dinner, mopping the kitchen floor, and completing THPs he was allowed an outing to Cold Stone Creamery where he stood in line, ordered for himself (chocolate, chocolate chip) and sat patiently and waited for his order.

As I was saying goodnight at the end of our phone call, I encouraged him to do his best (that familiar Scout motto) at the clinic tomorrow so that he could get strong enough to come home. "I will" was his immediate response followed by "I love you". That's all we really have each day – the opportunity to do our best and love one another.

Grace and peace to each of you,

Regina

Day 161 – Grayson’s Journey

Dear family and friends,

On Saturday, Grayson was alert, responsive and comparatively rather energetic for most of the day.

On Sunday, it was as if he was literally moving in slow motion. He lacked much of the energy of the day before and seemed, once again, to be "stuck" while trying to stand up or respond. Additionally he was not as engaged during church service and his fingers turned slightly blue while eating his lunch.

It could be tempting to let my hopes and expectations run away on the "giant step forward" days and get disappointed or depressed on the "two steps backward" days. God, however, has a way of giving us the strength we need even on disappointing days. We asked Grayson to sign his name to a letter today and encouraged him to write slowly and carefully. The "G" of his written signature is quite clear and controlled with the remainder of the letters run together in a trailing line. That written "G" is a major improvement and I rejoice for him.

Brant and I needed to shorten our visit with Grayson today and drove back to Glendale to honor other commitments. Grayson hugged us and waved "Goodbye" as he and several other residents boarded a van and embarked on an outing to CALM, the California Living Museum in Bakersfield. It is a living museum of native plants and animal life including bobcats, mountain lions, eagles, owls, reptiles, badgers, ducks, porcupine and so many more. What a wonderful activity that allowed him to enjoy being outdoors on a beautiful, spring Bakersfield day. I rejoiced for him.

Tonight Brant and I participated in an Organ Vespers service at our home church in Glendale. Vespers is an ancient service that acknowledges that the day is a gift from God and as the day draws to a close we offer the day back to God in psalms, hymns, scripture, and prayer. As I sat in the service, the wonderful music washed over me and I was refocused on the truth that it is all God's. Once again I was lifted up by the hugs and warm greetings from this part of our extended family. Their steadfast support through prayer and messages has helped us to find, as Brant's cousin put it "joy in your calamity".

Each day, I open my eyes and recite Psalm 118:24. "This is the day the Lord has made; let us rejoice and be glad in it." Today, there was much to be rejoiced.

Grace and peace (and joy),

Regina

Day 160 - Grayson’s Journey

Dear family and friends

It is Saturday – grocery day! Grayson was eating a bowl of chili when we greeted him this morning. He had completed his shopping and put all of his food away before we arrived. It was such a beautiful day, that we went outside so he could enjoy his meal in the beautiful 80 degree spring weather here in Bakersfield.

The weather called to us! We packed him up, and headed out to the park for some "outdoor" time. While there, Regina spent some time working with him on some handwriting practice. His hand is less shaky, but those pesky hand tremors are still present, albeit reduced. His hard work there was rewarded with a trip to Moo Creamery for an ice cream.

When we arrived back at the unit, his brother Austin and his girlfriend Xixi had arrived with two other friends of Grayson's that had worked with him at USC's Bovard Auditorium – Lisa and Chris. We had a great visit chatting in the BBQ area by the "small pool" at the residence. After a long time, we moved into the rec center for some ping pong, and a game of Monopoly.

One of the highlights for me today was listening to Grayson read a letter aloud from one of the Bovard crew that was unable to be with us today. It was a full page typewritten letter and Grayson read it to us in its entirety. With Regina's coaching, he slowed down enough on many of the sentences for us to understand them. Unfortunately for us, many were too difficult to understand – his capabilities as a captivating and precise reader have been severely affected by this injury. Grayson got the message, however, and that was great. I read the letter later, and I was struck by its thoughtfulness and its sweet kindness. Thank you, Meirav.

All of us went out to break bread together before the "gang" headed back to LA. Well, it wasn't exactly "bread", since we went to eat sushi, but close enough! This sushi place knows us, and rolls out the red carpet whenever we come in. We actually had to explain to the server that they could give Grayson a straw, and that it was OK to fill his glass most of the way now – they remembered him so well from when we first arrived. What a wonderful place to dine – where they know you and treat you like family. Of course the food was wonderful!

After dinner, we bid "adieu" to our friends, and took Grayson back to his apartment to settle in for the night. Today is the end of Grayson's 3^rd month here at the facility in Bakersfield. What a wonderful place filled with caring individuals, experienced with the special needs of those afflicted with brain injury. We are fortunate to be here and hope and pray that we are blessed with additional time here for Grayson to benefit from the therapy that is offered.

Pax!

Brant

Day 159 - Grayson’s Journey

Dear family and friends

By the time we arrived in Bakersfield tonight, Grayson was in bed. He had a full day today, but he didn't go on any outings. He spent almost a full day at the clinic, then he had a follow-up visit with his cardiologist. When he arrived back at the residence, he rested for a bit, then started his chores. Tonight he washed the hard floors, following his picture checklist, then he started dinner prep.

Tonight, following his meal plan and menu, Grayson made tacos and rice. According to his residential assistant (RA), he thought they were very good! After dinner and clean-up, Grayson sat down at the kitchen table and had a nice chat with his RA's and his roommate. According to the RA, they all talked at the table until bedtime – the TV was not turned on all night!

Tomorrow is Saturday, which means grocery shopping in the morning. We'll see him after the food is put away, as we do almost every weekend.

Pax!

Brant

Day 158 – Grayson’s Journey

Dear family and friends

Today is Thursday, and this is week three of the outdoor movie at the Bright House Networks Amphitheater. Unfortunately, tonight it rained, so the movie was cancelled. Fortunately, the ever adept staff at the residence brought in a movie and the residents watched it in the rec center. All was not lost – it was still movie night!

Because of the length of the movie, Grayson had little time to spend on chores, after he finished dinner preparation and his therapeutic home program (THP). He did do some vacuuming, but that was it tonight!

Our nightly phone call with Grayson included a long series of single word responses – "Did you have a good day? Yes." "Did you go to the amphitheater? No." "Would you like to see us this weekend? Yes." "What are you doing now? Nothing." We couldn't get very much information out of him today, and even the information we did get was suspect, due to his short term memory deficits. The call ended with Lauren and him chatting for a short time and exchanging "I love you's".

It is almost the weekend, and we will get to spend some time with Grayson to see how he is doing. It looks as if several friends will be coming by to visit on Saturday, so Grayson should have a good time.

Pax!

Brant

Day 157 – Grayson’s Journey

Dear family and friends

Grayson was most helpful and productive this evening. After his 30 minute rest time after he returned home from the clinic, he folded his laundry (he did it last night and it was in the dryer), then helped prepare dinner. He made the salad on his own, then helped his residential assistant (RA) prepare Sloppy Joes. He required just a small amount of cueing to rinse his plates and put them in the dishwasher.

He spent the usual 30-45 minutes on his therapeutic home program (THP). Tonight there were several series of questions. The first was "causes" (There are no clean socks – why?). The next was "consequences" (You handled food with dirty hands – what could happen?). Then he was read a paragraph and needed to answer questions on the subject. Finally there was orientation questions (what is the address, what is the date, what is the phone number, etc.)

After this, it was karaoke night in the rec center. Grayson went there with several other residents and stayed for about 90 minutes. When I called he was getting ready for bed (it was 8:30) and he was more than ready to crash, as he still needs around 10 hours sleep each night. As an information point, brain injury patients seem to require a tremendous amount of sleep compared to their pre-injury lives.

Grayson "lost" a roommate this week – lost in that the roommate was moved to a more independent living situation. There are four levels of care here depending on the supervision levels required, and the capability of the individual. Grayson is still in the highest level of care due to several factors including orientation, risk of injury, cognitive awareness and elopement risk (due to poor orientation and impulsiveness). For now, there is an empty bedroom in Grayson's unit.

I know I've said this a million times: Progress is slow in the recovery from brain injury, but we continue to see progress.

Pax!

Brant

Day 156 – Grayson’s Journey

Dear family and friends

As I do almost every night, I had a nice chat with Grayson. Tonight we talked about a lot of things, or I talked and he listened and responded with one or two word answers. As I have come to expect, he had no idea what he had done this evening.

I did ask Grayson something different tonight. I asked him about friends that he had there. He mentioned two names, one male and one female. Both were "younger" (I take that to mean not over 30!) He said that the female was a day person, and the male was a resident (awareness – that's good!) I asked him if he knew why he was there. He has been trained to say, "Brain injury", but tonight he said that he didn't know why he was there. I explained that like his friends, everyone there was a victim of brain injury, and they were all trying to get better. One of the things I explained to him was that he could probably remember things in the distant past, but not recent events. I asked him the name of his second grade teacher, and he said, "Mrs. Ramm." I asked him the name of the headmaster of his high school, and he said, "Peter Bachmann." I asked him what he had for dinner, and he said, "I don't remember." I then explained that one of the goals of his stay there is to bring back his short term memory, and he understood. Unfortunately, I expect that 10 minutes later it was forgotten. This is the frustration of brain injury.

Tonight Grayson and I also spoke about a cousin of his that was awarded his Eagle Scout rank at a Court of Honor yesterday. He responded, "Cool!" Grayson understands the significance, and is proud of you, Kevin. So, in honor of Eagle Scout Kevin Klett, who is also a member of his council's 2010 Jamboree contingent, here is a picture of Grayson and three other Scouts just after laying a wreath at the Tomb of the Unknowns during the 2001 National Scout Jamboree tour. Enjoy your time "On the Hill", Kevin – the last National Jamboree at Fort AP Hill in Virginia.

Pax!

Brant

Day 155 – Grayson’s Journey

Dear family and friends

I spoke with Grayson this evening. We had a nice chat as we do almost every evening. Unfortunately his short term memory doesn't do much for conversation! What are you doing? "Nothing." What did you have for dinner? "I haven't eaten". (Not true – he just forgot.) Did you have music therapy this evening? "No." (He did.) Did you go to the clinic today? "Yes." What did you do there today? "Not much." When will we see you again? "Tomorrow?" What day is today? "Monday." When do we usually visit? "Saturday and Sunday." That's right! We'll see you on Saturday! "Cool."

I consider it good news that Grayson is aware of the day of the week, and when we usually visit. I continue to be saddened about his other short term memory deficits. While it is improving, the process is so, so slow.

Grayson's residential assistant (RA) went home early this evening, so I missed the opportunity to get the normal back stories that are not generally recorded in his notes for the evening. So you get a gift of a short posting this evening (or morning depending on when you read this!)

Pax!

Brant

Day 154 – Grayson’s Journey

Dear family and friends

Today we picked up Grayson and went to church at Redeemer Lutheran as we do most weeks. We were welcomed with open arms as usual. It is so nice to have a church home away from home!

After church, we took Grayson to lunch. Lunch was great, but a bit rushed as we had to have him back at the residence in time to catch transportation to the theater. When it comes to theatre events, generally Grayson is the only one signed up to go, so we weren't too worried. When we arrived, they had one of the big transports ready to go, and a whole bunch of folks waiting to board the bus. It turns out that there was a late pile of sign ups to go to the matinee today. It was a comedy, The Maltese Chicken. Perhaps the adventures of Hemlock Stone caught the attention of the residents! I am told that all had a great time.

When they returned, Grayson was hungry – a really good sign! He helped with dinner prep, then after dinner walked with his roommates and their residential assistants (RA) around the complex and through the park across the street. When they returned to the apartment, they did laundry, but Grayson had to go to another unit because the machines in his were in use. It's all about working together!

We had a good visit with Grayson this weekend. We are concerned about his curious behavior we spoke of yesterday, but will chalk it up to the meds until we talk with the neurologist.

Pax!

Brant

Day 153 – Grayson’s Journey

Dear family and friends

We went to the residence to see Grayson as soon as he was done putting his groceries away from the weekly shopping run. We had a nice uneventful day. We started with a pleasant outdoor lunch, as it was in the high 70's here in Bakersfield. We are trying to enjoy the wonderful spring weather, because in about two weeks it will be scorching!

Because the restaurant was next to Sports Chalet, I stopped in to get a new pair of swim trunks. Now I probably wouldn't share that normally, except that I had Grayson in stitches demonstrating various swim suit articles that are SO not me. We had some fun together while Regina was at CVS next door. After we finished at Sports Chalet and joined Regina at CVS, I picked up a few necessities and Grayson helped himself to some candy – and opened the wrapper and ate it. I retrieved the wrapper and paid for the candy, but this is yet another indicator of impulse with no concept of consequence.

Next stop for the day was a nickel arcade. Now I must admit, the games only took nickels, but some took 10 or 12, so it was a bit misleading. However it was fun, and an easy way to get Grayson to focus for a bit on making choices, hand to eye coordination and reaction time. Every bit of practice helps!

I was quite pleased at the significant reduction in his hand tremors – shaking – that have been plaguing him since the incident. They are still there, but so reduced over what they were even a month ago that I am thrilled. This will lead to an ability to use a pen or pencil again, something that has been quite impossible so far.

I have known that Grayson remembered much from his education. Today I decided to casually do some basic arithmetic tests, and I am pleased to tell you that he can do calculations in his head quickly, including the addition of fractions. Next week, I'll attempt to do some basic algebra with him. It better be basic, because my last math class (calculus) was 34 years ago!

Grayson is still very difficult to understand. Any combination of words over five is tough to understand, and will always require a request to repeat and slow down. Another curious observation is harder to describe – we call it getting "stuck". When we arrived today, Grayson was sitting in the easy chair. When we asked him if he wanted to go to lunch, he smilled and nodded "Yes", but didn't move. It was like he lost the ability to command his body. We eventually got him up, and went on with our day. Later while he was preparing a fruit shake (strawberries, bananas and milk in the blender) he needed milk. His residential assistant (RA) asked him what was missing, and Grayson said, "Milk". When the RA asked him where he should get it, Grayson pointed to the refrigerator. When the RA asked him to get it, Grayson reached from across the room with his hand, and very slowly his body started to move toward the refrigerator. Once he became "un-stuck" and moving toward the refrigerator, he was fine. He knows what he wants, but is sometimes unable to take the first step towards execution – very strange phenomenon that we observed several other times during the day.

Tonight Grayson wanted to go to the movies with others from the residence, so we bid adieu while he was preparing his dinner. I suspect he will have a good time, as both movie choices were comedies. We'll see him again when we pick him up for church in the morning.

Pax!

Brant

Day 152 – Grayson’s Journey

Dear family and friends

Today was dental day! Grayson had a dental evaluation in the morning, and a cleaning in the afternoon. With all of the time at the dentist, transportation and lunch, he only managed to get 1½ hours of therapy in. However, good oral care is critical for someone with a cardiac condition, so the time was well spent. He was quite overdue for a cleaning, as he was scheduled for one the week following his incident five months ago.

Because we were not sure how Grayson would respond to the cleaning, Regina thought it was critical for one of us to be there. I worked from our lovely accomodations while Regina went with Grayson to the dentist. His reaction was hard to predict, but with encouragement from Regina he was very calm and allowed the dentist and the hygienist to work away while causing little problem. The good news – Grayson's teeth were in great condition!

Because we were in Bakersfield during a weekday, Regina had a rare (for us) opportunity to see the going's on at the clinic. We frequently see the residence, as we are here every weekend. But the clinic where Grayson works every day is closed on the weekends. Regina got to observe Grayson during his therapy sessions before heading back to the dentist.

During physical therapy (PT), Grayson did a workout on a stationary bicycle, then back exercises using a large exercise ball. During occupational therapy (OT) Grayson worked on peripheral vision, reaction time, fine hand motor skills and eye coordination.

At the end of the day Grayson was rewarded for his efforts by shopping for a new electric toothbrush at Target, and dinner with a group from the residence at the Moo Creamery, a local restaurant and ice cream parlor. How can a day that ends in ice cream be bad?

Pax!

Brant

Day 151 – Grayson’s Journey

Dear family and friends

Today marked the end of the first five months of Grayson's journey. Five months ago, we were in blissful ignorance of the event that would change our lives the next morning. It was a normal Sunday – church in the morning, and Grayson helped me with the BBQ as we prepared and cleaned up after dinner. What a difference a day makes. 24 hours later I had flown to Dallas and back, Regina had spent the afternoon in the ER, and Grayson had just been moved to his room in the ICU. We did not know if he was going to make it.

Well, he did. He is with us today, albeit much changed. He has improved significantly, but he has a very long way yet to go to be able to live without constant supervision. He has gained much of his physical capability back, but he is severely challenged in cognitive skills. He does have his long term memory and his characteristically cheery disposition, and those are precious gifts indeed. We enjoy seeing him, and he enjoys seeing us. Those too are precious gifts.

So we are five months in, and a very uncertain future lies ahead of us. Every day is a gift. We have been blessed by many angels so far on the journey, and I suspect that there are many more we haven't met yet that will bless us in the future.

Pax!

Brant

Day 150 – Grayson’s Journey

Dear family and friends

Day 150? We are practically at the five month mark since our journey started.

I called Grayson when I returned from my meeting at church this evening. He was in bed, but while I was talking to the overnight person (his residential assistant (RA) had gone home already), Grayson got up to use the rest room. I got an unexpected treat to talk with a sleepy dude for a few minutes, before he went back to bed. Because Grayson's RA had left for the evening, I wasn't able to get an update on his day.

One thing I expect you may be interested in is his living space. I took the opportunity this weekend to take some pictures of his unit so I could share. Here are pictures of:

Grayson's room (looking in)

Grayson's room

The hallway (looking past Grayson's room)

The living room

The kitchen and dining area from the living room

The kitchen

What I did not show are the rooms of his two roommates and the bathroom area.

These units have been specially reconstructed for the specific purpose of housing neuro rehab patients. You can't see the super-sized bathroom with special walk-in showers, the locked areas for medications and for kitchen knives, or the special fire doors in the extra wide hall. In a future blog I'll show some photos of the outside to complete the "picture"!

Grayson is blessed to be able to spend rehab time in such a wonderful place.

Pax!

Brant

Day 149 – Grayson’s Journey

Dear family and friends

Recently Grayson dropped and broke his electric razor. Since he shaves once or twice a week, we didn't think that anything was unusual with his "furry" face this weekend. Now we know why he was not clean-shaven for church on Sunday! Tonight, he and his residential assistant (RA) went to Wal-Mart to buy a replacement. They found a good deal, and made the purchase. No excuses for not being clean-shaven in church this week!

Other than the shopping excitement, Grayson had a couch-potato evening. He was low energy, required multiple reminders to help with chores, cook dinner and do his therapeutic home program (THP). His RA said that it was a down day.

In my final installment of the patient conference from last Tuesday, I'll share a bit about the home program. Grayson's independent living scale (ILS) has improved from 63.9 to 75.3. This is a significant gain and very encouraging. To calibrate you, an ILS score of 96 and above is what would be considered as able to live without supervision. Grayson likes choices, and not being told what to do. His sequencing (doing things in the correct order) is improving, and his behavior continues to improve. All in all, this was a very encouraging patient conference, and there is data to back up the continued improvement that we are seeing.

It has been a long time since I have stopped and recognized all of you – our prayer angels – daily delivering messages of hope, good wishes and reminders of God's love. You give us the strength to go on, and your hugs, both real and virtual, give us strength. Please accept our love and our thanks.

Pax!

Brant

Day 148 – Grayson’s Journey

Dear family and friends

When I called tonight, Grayson was at the nickel arcade with his residential assistant (RA) and others from the residence. Later when I called back to see how he was doing, he was ready for bed. When I asked him if he did anything special tonight, he said, "No." I asked him if he went anywhere tonight, and again he said, "No." I prompted further, and asked him if he went in the bus to a fun place, and he said, "No." Finally I asked him if he went to the arcade to play games this evening, and again he said, "No, I didn't go anywhere." At this point he had not yet been home an hour.

I spoke with his RA, and Grayson indeed did go to the arcade. He was well behaved, and he played several games. He took his winning tickets to the front, and chose to get a ball and a finger puppet with them. This particular RA who had been off all weekend, said that the last three outings he has been on with her, Grayson "has been an absolute angel". Behavior improvements are good!

Another item of particular interest and good news was dinner preparation the other night. Grayson chose to make macaroni and cheese. He removed the box from the shelf, read the directions, then went to the fridge and pulled out milk and butter. This is huge, because the written instructions don't tell you to go to the fridge and get the milk carton and a stick of butter. The instructions just tell you how much to use. He was able on his own to make the leap, fill in the "obvious" and prepare the meal. I know that he wasn't making béarnaise sauce, but given his condition, the ability to prepare food is a necessary life skill.

I think that Grayson's speech difficulty is starting to discourage him. I haven't seen too much of this so far, but I am starting to see him get frustrated with his inability to communicate what is on his mind, and after several attempts, he just gives up.

Joys and concerns – we have our fill of each. We rejoice with every improvement, and refuse to be discouraged by challenges. Fortunately we have someone special to watch over each of us every day.

Pax!

Brant

Day 147 – Grayson’s Journey

Dear family and friends

Today we picked Grayson up and went to our church in Bakersfield – Redeemer Lutheran. As always, we were welcomed with open arms, and it was great to see our new friends again. Afterward, we went off to lunch.

Today we chose to have sushi. When we arrived, we were greeted with shouts of welcome and joy – How nice! The server also remembered to only fill up Grayson's glass halfway, though it is much less necessary than it was a few weeks ago. We had a lovely and leisurely lunch before heading on to our next stop. Grayson's hands were noticeably less shaky than they have been. This is another sign of improvement.

When we returned to the residence, we discovered that the miniature golf outing scheduled for the evening had been moved to earlier in the day, so we just had a little time left with him before he went off on an outing. We said our farewells, gave hugs all around, and climbed into separate vehicles.

Today we helped Grayson script and record a message for all of you – the first since January 30^th. Here it is! It is a bit difficult to understand, so here is the "translation":

"Hello – this is Grayson Reed. I'd like to say "Hello" to all of my friends and family. I'd also like to say thank you for all of your good wishes. I am getting better, and I hope to be home soon. See you then!"

Pax!

Brant

Day 146 – Grayson’s Journey

Dear family and friends

Today we traveled up to Bakersfield, and took Grayson out as soon as he had put his groceries away. Our first stop was lunch. Because of Grayson's continued weight loss, we were determined to make sure that he had enough to eat! We went to Chipotle for lunch, and Grayson had a burrito. After eating about a third of it, he was done. (Remember the loss of taste and smell, and my opinion that it is affecting his appetite.) We encouraged him, and before we left he had finished most of the burrito.

We followed lunch with a trip to Borders Bookstore. There we bought a book for Grayson, an old favorite – The Hobbit. As you may recall, Regina bought him the audio book last week. She thought it a good idea to have the print book alongside so that he could follow along – sort of like learning to read all over again.

We departed Borders, and headed to a pottery store we discovered a few weeks ago. There we found a perfect pot for one of our plants at home that needed more spacious quarters. We were grateful for a little bit of normalcy – shopping for our home. It is hard to describe how nice that feels, even if it is only for a short time. Grayson was actually quite pleasant and fun while we were there, so all was good for everyone!

Next we were off to a special treat – Cold Stone Creamery. There Grayson had an ice cream (OK I did too!) and he enjoyed the experience. The next stop was Target – next door to Cold Stone, as Grayson said that he wanted to go there. Why he wished to go there is still a mystery, but we nonetheless got a bunch of needed "stuff" for home at a fraction of grocery store prices! There was the added benefit of having Grayson doing normal things out in the community.

After Target, we headed back to the residence. There Grayson listened to The Hobbit, while following along in his new book. After reading four chapters, we headed to the rec center for a late afternoon of ping pong, and Wii.

I have been sharing snippets from our patient conference all week. These are the observations of professionals in the field of brain injury. I promise to finish the last of the patient conference reports within the next few days, but I thought you would appreciate our actual experiences instead today.

Some of our observations about Grayson – his speech is still quite difficult to understand, and the stuttering is quite pronounced. His hand tremors have reduced significantly, and he is able to eat more normally. His balance has improved, and his hand to eye coordination gains, as evidenced by ping pong plays this evening, was impressive. He continues to show solid gains, even with a few areas of challenge.

God continues to work small miracles daily in Grayson.

Pax!

Brant

Day 145 – Grayson’s Journey

Dear family and friends

I called the residence tonight and discovered (not that it was a big surprise) that Grayson was at the movies. Friday night is movie night, and Grayson has been attending pretty regularly lately. So regularly in fact, that Regina and I decided to stay home this evening. We'll drive up in the morning, and arrive after he finishes his grocery shopping.

Continuing the outbrief of Tuesday's patient conference, tonight I'll talk about speech therapy. Grayson has progressed to a new level in his therapy module. There is an increasing length in the readings he is working with, and he needs to remember more facts in order to answer the questions on the reading. He is now working with 50 word passages, instead of 35 word passages from the prior reporting period.

The staff is now incorporating task check lists in more areas for Grayson. Lists are helping him to remember what tasks need accomplishing, but he still doesn't remember to check the task list itself. Grayson has had great gains in orientation, and he is able to say where he lives, and why he is there (brain injury). He also remembers the year and the names of our newly elected officials. (If you recall, he still thought that George Bush was president and Gray Davis was governor when he first arrived here.) He still has difficulty not substituting our phone number for his new one.

Grayson is being given assignments to be completed in an increasingly distracting environment. His first assignments were in a quiet room. His next assignments were done while music was playing on the radio. The next assignments were done while TV was on. Grayson was able to keep focused on the first two scenarios but not the last – the TV is Grayson's Achilles' heel. When the TV is on, Grayson just freezes in his tracks, and all other meaningful work is over. This tells us that Grayson needs a very un-distracting environment to accomplish tasks. In the real world, where does that exist?

I'll share the final bits of the patient conference within the next few days. We look forward to visiting Grayson tomorrow!

Pax!

Brant

Day 144 – Grayson’s Journey

Dear family and friends

When I called to talk to Grayson tonight, I found out that he was at a screening of Ice Age: Dawn of the Dinosaurs at the Brighthouse Networks Amphitheater. The residents had the opportunity to attend this free screening, and Grayson wanted to participate. According to the few staff remaining behind, Grayson hustled through his chores, dinner, and therapeutic home program (THP's) so he wouldn't miss the bus. How fun is that!

If you read the posting yesterday, bees were a problem in Grayson's apartment. Tonight Grayson and his roommates had dinner in the temporary apartment. While the residents were at the movie screening, the RA's moved the "boys" back into their unit, as the bees had departed (with some encouragement from the beekeeper dispatched to deal with them.) The bees are back making honey, and the boys at the movie screening will get to sleep in their own beds tonight.

As promised, here is some more information from our patient conference on Tuesday. Tonight I'll speak to occupational therapy (OT). Grayson has improved his range of motion since the last report. His grip strength has improved, and he is able to perform tasks like opening a jar, or getting a milk carton out of the refrigerator without dropping it. His hand tremor has reduced, allowing him to more easily pour liquids, eat with silverware and drink from a glass. He is "scanning" very well, which is taking in a mental picture of a variety of objects in the area and remembering them for working recall. He loves puzzles, and if given a choice of activity to perform in OT, puzzles are always his choice. His sequencing is also improving (doing multi step tasks in the proper order).

Grayson's kitchen and social skills are also showing gains. As an exercise, Grayson will ask fellow patients in the OT area if they want lemonade. He will mix the lemonade then serve it to them. He is doing a good job of mixing, pouring and carrying the lemonade. He is having difficulty remembering who it was that he made it for. A similar situation is happening with the microwave. He is able to independently put the food in the microwave, read the instructions, set the controls, and determine that the food is done by hearing the beep. Unfortunately, Grayson can't seem to remember which of the microwaves that he put the food into. This is not a problem at the apartment, as there is only one microwave. It is a problem at the clinic, as there are 4!

God continues to bless us with Grayson's improvement. I'll share more of the patient conference tomorrow.

Pax!

Brant

Day 143 – Grayson’s Journey

Dear family and friends

Grayson, his roommates and their residential assistants (RA's) had a bit of unexpected excitement this evening. It appears that a swarm of bees decided to make a visit to a vent in their unit. As a result, they had quite an impressive number of "friends" joining them this evening – the buzzing kind. Fortunately there was a vacant unit in the complex, and everyone grabbed what they needed for the evening and morning, and moved temporarily into the empty unit. Tomorrow we expect that the bees will be "encouraged" to move out, and everything should be back to normal.

The excitement sort of threw off the normal chore plan tonight, so they ate dinner (Chinese food was ordered and delivered), then hung out at the rec center after dinner. Grayson had completed his therapeutic home program (THP) prior to the bee invasion.

I promised I would share some details about Grayson from the patient conference on Tuesday. The first area I will share is physical therapy – probably the area of his greatest recovery to date. Grayson has increased his strength, and on a scale of 1 to 5 where 5 is normal, Grayson scored a 4 in most of the strength areas. In aerobic endurance, he was able to go 9 minutes and 15 seconds on the treadmill, with the final 15 seconds being an aggressive stage 4. His balance has improved significantly. His coordination continues to improve, but he is still quite challenged in this area. An example of the deficit here is rapid heel and toe taps. Grayson just can't tap his toe then tap his heel for a sustained period. In spite of this, overall his physical strength and capability continue to show solid gains.

Grayson's weight is down to 193 pounds – still within the 190 +/- 10 pound ideal for his height, but still concerning. The nursing staff is starting to look at supplements to halt further reduction, as this represents the loss of another 7 pounds since the last reporting period. As I mentioned in an earlier post, this could have something to do with his lack of taste and smell impacting his appetite. Given that he was at 248 pounds on November 16^th, his weight loss has been significant. Fortunately, he is still in the healthy range.

That is enough for tonight. I'll share more from the patient conference tomorrow.

Pax!

Brant

Day 142 – Grayson’s Journey

Dear family and friends

Grayson spent the evening tonight preparing dinner, and then he joined the other residents at the rec center for a town hall meeting. The topic for discussion was outings and activities. Never the shy one, Grayson did make a suggestion. He suggested that an outing to Magic Mountain would be a good idea. The staff politely thanked him for his good suggestion, and said that they would look into it. (The chances of them taking a group of recovering brain injury patients to a roller coaster park is pretty slim in my estimation!) Nonetheless, he spoke up, made a suggestion, and was understood – all good in my book!

After the town hall meeting, Grayson and a few others sang with the karaoke machine for a while. When they had their fill, Grayson and the others returned to their apartments. Back at his home, Grayson finished his chores (mop the floor today) and then got ready for bed.

This morning, Regina and I met virtually with the staff for our monthly patient conference. Grayson has made some good progress in the last month, and I will detail out some of the areas of improvement over the course of the week.

All in all, it was a good day!

Pax!

Brant

Day 141 – Grayson’s Journey

Dear family and friends

Grayson had a good day today, according to his residential assistant (RA). While there was no music therapy today, Grayson did have a good time doing other things. When I spoke with him this evening, it was about 8:30. He asked me how I was doing (how polite) and he explained that he was getting ready for bed. He didn't remember what he had for dinner, but he was in a good mood.

Dinner tonight consisted of teriyaki orange chicken that Grayson and his RA made. His RA said that Grayson was a big help this evening preparing the meal. He said that Grayson did a great job of cutting up the yellow bell pepper – with a butter knife! Due to the conditions of the residents, and the need for safety, knives, such as they are, are kept under lock and key. Having used them before, I am here to tell you that you would be hard pressed to cut butter with most of them. A cooking school it is not! Fortunately Grayson was patient enough to cut up the pepper while his RA used one of the "sharp" knives to cut the onion. When all was done and the meal was prepared, even the RA said that it was very good.

After dinner, the RA took Grayson on a walk around the grounds. His routine with Grayson is to ask the orientation questions while on a walk, so he is away from the distraction of roommates, television, etc. Grayson seems to respond well to this, and he was able to answer most of the questions tonight with little prompting. The orientation questions are very important – date, year, where he lives, the phone number of the facility, why he is there (brain injury), what city he is in, etc. All of these are stressed so that if he should become separated from the protection of the RA's, he will know how to communicate where he is from.
During the walk, Grayson and his RA passed the basketball hoop. Grayson wanted to shoot some hoops, but the ball couldn't be found. So they went back to the apartment to get Grayson's blue ball that he uses for hand/eye work. His roomies wanted to join him, so all went out and shot baskets. Three young men, all with brain injuries, shooting hoops – they had a blast!

I realize that I forgot to post the picture of Grayson, Lauren and Regina from Easter Sunday. In an effort to correct that oversight, here it is!

Pax!

Brant

Day 140 – Grayson’s Journey

Dear family and friends

As many of you know, I remained in Glendale this weekend to help with the music program in church. Regina and Lauren went to visit Grayson and have Easter with him in his new home. Today the day started with church services celebrating the Feast of the Resurrection of our Lord, more popularly known as Easter. Our Bakersfield church home was filled, and Regina said that it was great to see so many people in the sanctuary this morning.

Following the service, Grayson, Lauren and Regina went out to lunch, then to a bookstore. At the bookstore, Grayson bought The Hobbit as an audio book. He doesn't seem to have the patience to read, but he wants desperately to enjoy literature again. Perhaps this will help.

After the book spree, the three returned to the residence for an Easter dinner with all of the patients and staff. Grayson filled his plate as he is accustomed to doing, but as this was already his third meal of the day, he only ate about half of it.

Grayson seemed to be "stuck" and unable to move at times. When Regina arrived to take him to church, he sat in the chair and smiled at her, but didn't get up. When he was asked if he wanted to go to church, he said, "Yes", but didn't get up. Finally with additional prodding from the staff he stood, then walked out and got into the car. Similarly he got "stuck" in the pew during the service. Normally he stands right up at the appropriate parts in the service. Today, he just couldn't find it in him to stand. His speech is still difficult to understand. I think that he is still adjusting to the med change.

One bit of encouraging news. Regina and Lauren covered Grayson's eyes, and had him touch a cup containing hot coffee, and a cup containing a cold drink. When he touched the cups that he could not see, he correctly identified "hot" or "cold" each time. This is great news, as we thought his ability to distinguish temperature was gone forever.

Tonight after Regina and Lauren left to travel home, Grayson went to the movies to see Percy Jackson and the Olympians: The Lightning Thief. He was very well behaved, and his RA reported that he thoroughly enjoyed the movie.

A blessed Easter to all – He is risen indeed. Alleluia!

Pax!

Brant

Day 139 – Grayson’s Journey

Our dear family and friends,

When Lauren and I got to Grayson's today, he was waiting at his apartment door, wearing his coat and a great big smile. He was so happy to see us and eagerly walked straight to the van and climbed in the front seat. It reminded me of the unbridled enthusiasm of a puppy going out on a walk.

Among the "exciting" things that filled our day, I asked Grayson if he wanted to get a haircut. He declined. I told him it was his decision and that it was okay if he didn't want one but asked him to look in the mirror and then decide if he wanted a haircut. After a couple of minutes he did change his mind and off we went to Supercuts. This time he reminded me of a six year old, grinning and looking around the salon and at himself in the mirror. What a handsome guy! (I'll try to post a picture tomorrow).

We walked for a couple of hours around various outdoor shopping centers, pausing to look at birds, flowers, and shop windows. When I tried a hand cream at one store, he wanted to smell it on my hands. At William Sonoma and Trader Joe's he went straight for the food samples (even though we'd just had lunch). He patiently waited at another shop while Lauren and I looked at clothes.

Some of the time he sat with his novel open in his lap (he has had the habit of carrying a book in his cargo pocket for years). At one point Lauren sat next to him and asked him what he was reading. He handed the book to her. When asked the name of the novel, he pointed to the cover. When asked what kind of a book, he said an adventure. After repeated tries to get him engaged in a discussion about the book, she finally asked him to read the first page to her. He read her the first two sentences and gave up. I must point out that since the weaning off of yet another anti-convulsive drug this week, his speech is very hard to understand. He is stammering much more and the pace is quite rapid. His whole demeanor is – not quite agitated but really restless. He can't keep his hands or legs still. Even when he stretched out and tried to snooze on the bed, he couldn't stop moving. I can only imagine how frustrating it is when your body won't cooperate. This additional challenge of adjusting to medication changes is indeed a mixed blessing. What a chemical balancing act considering that even minute changes have a major impact on him.

We spent several quiet, undistracted hours at the hotel together today exploring my laptop. With our help Grayson successfully remembered two of his three passwords and was able to check email, voice mail, and his Facebook page. While he didn't have the focus to dictate any response, he read each message out loud and smiled as if he was hearing it directly from his friends. His hands shook so badly that when he tried to type he just typed gibberish in long strings. This is another example of what must seem like physical betrayal but in actuality is another step in reestablishing old (or looking for new) paths of communication. I rejoice that he even has this opportunity to be frustrated. Four months ago I could not have guessed this would ever be possible.

As I look back on November 16, 2009 and turn to look forward to uncertain yet hopeful tomorrows, it is impossible on this Easter Vigil not to see the parallels in our faith journey. Tomorrow we celebrate the great miracle of resurrection and new life and walk in the joy of all that is represented in that promise.

Grace, peace, and Happy Easter to each of you.

Regina

Day 138 – Grayson’s Journey

Dear family and friends

Grayson had a good day. His plan was to go to the movies tonight, but at the last minute he chose not to go. I'm not sure why, but he made the choice. Instead he went to the rec center and had art therapy – the lone patient with his residential assistant (RA) and the art therapist. Grayson built a battleship tonight. I'm anxious to get a report from Regina tomorrow on how it looks!

After the art therapy, Grayson and his RA stuck around for a little karaoke. When that was over, they went back to the apartment and watched America's Funniest Home Videos. According to his RA he practically fell out of the chair laughing so hard. It does my heart good to hear him laugh out loud, and I'm sure that the endorphins can't hurt him either! Humor and music – what more could anyone ask for?

Today Grayson was not sleepy and sluggish as he was yesterday, and he was well behaved and cooperative. His speech was still very unintelligible, and I had to have him repeat everything twice or three times in order to understand. There were some things he told me that I completely missed. At least he is trying to communicate.

It is Day 2 of the Triduum – Good Friday. Tomorrow night, we will celebrate the Vigil of Easter. For the past several years, Grayson has built the new fire outside the church at the start of the Vigil for the "Service of Light", and read the Genesis reading, traditionally the first and longest of the many readings at that service. This year we will all miss his Boy Scout experience at fire tending, and his wonderful reading style during the service. I pray and dream of Grayson once again taking an active place in the service.

Pax!

Brant

Day 137 – Grayson’s Journey

Dear family and friends

Today was not as good a day as yesterday. Grayson was sleepy and tired all day. His speech was very difficult to understand, and he stuttered a lot. When I called him tonight, I asked him what he was doing, and he responded with something I couldn't understand. I asked him to repeat it, and he said, "I-I-I-I-I'm getting re-re-re-re-ready for b-b-b-b-b-b-b-b-b-b-b-b-b-b-b-b-b-b-b-b-b-bed" I didn't think that he would ever get the word "bed" out. Today was another med change – the elimination of an anti-seizure drug – and he has been harder to understand since they started weaning him off of it last week. We'll have to see how he adjusts to the change.

He had to be prodded a bit to do his chores and therapeutic home program (THP) tonight. He also kept exiting the kitchen during dinner prep. He was generally unable to focus and had difficulty completing tasks tonight. His residential assistant (RA) motivated him with a promise to go on the outing to the ice cream parlor if he knuckled down and finished his THP's. That helped, and he finished them up, then joined the gang for the bus ride for ice cream.

Grayson was given his own money to purchase the ice cream, and he ordered by himself and paid for his purchase – more practice for dealing in the "real" world. After the treat, they rode back to the residence, and Grayson got ready for bed – day over!

Yesterday Grayson took two steps forward; today he took one step back. I am still grateful that we continue to have a net gain, but I sure hate the backwards part.

Pax!

Brant