Day 989 – Grayson’s Journey

Dear family and friends,

This afternoon I took Grayson to have his teeth cleaned.

Bless our new dentist. He decided to clean Grayson's teeth himself rather than delegating the task to a hygienist. He is young, patient, encouraging and soft spoken. Just what Grayson needs.
But the adventure comes with a few challenges.

First, because of Grayson's heart condition, I must remember to give him his antibiotics an hour before his appointment. Then I need to get him to stay seated in the chair for an hour. He bites the instruments (luckily not the dentist today). His tongue continuously gets in the way and he frequently closes his mouth. He turns his head to look at other things in the office. He pokes at the various water and suction tubes and other instruments and every few minutes his hand slowly reaches up to try and stop the dentist.

With constant encouragement, reminders to open wide ("Ahhh") and holding his hand we managed to get through this simple procedure.

Now, however, we are trying to figure out how on earth we are going to get him to cooperate through time-consuming sealants and (gulp) a couple of fillings. His first fillings ever if I'm not mistaken.

Can't wait. (Sigh)

Have a wonderful evening – and don't forget to floss!

Peace,

Regina

Day 987 – Grayson’s Journey

Dear family and friends

Late night – early flight – short blog tonight!

Grayson continues on his up-cycle – was bright-eyed all day. We enjoyed watching the Olympics tonight with Austin, Xixi and Lauren.

Life is good!

Pax!

Brant

Day 986 – Grayson’s Journey

Dear family and friends

My plane landed at 6:00 AM this morning and I was home by 7:15. I’ll be home until 7:15 on Monday morning before heading out again. Weekends are precious!

This evening we enjoyed the use of my Father’s Day present from Austin and Xixi – a new picnic basket. We were their guests at the musical The Producers performed at the Hollywood Bowl. While I have fond memories of attending concerts at the Bowl with friends, I never thought I would see a musical staged there. What a fun evening! It was great to be back in that historic venue with good food and family.

Grayson had a blast this evening. He appears to be on the way up out of his low period. If endorphins help him to escape the low points, he sure had his fill of them this evening. He was just rolling with laughter during the musical. Before and after the show he walked with purpose to and from the car – another good sign that he is on his way “up”.

It has been a busy 18 hours since returning home today!

Pax!

Brant

Day 985 – Grayson’s Journey

Dear family and friends,

Well, it is 12:40 a.m. and Grayson has gotten up and set off his door alarm for the fifth time. He is wide awake…and mom is half asleep. Grayson was more alert and bright-eyed today. Perhaps that has something to do with his being so alert at this evening. We watched the opening ceremonies of the Olympic Games and thoroughly enjoyed the spectacular.

I can only hope Grayson stays in bed this time.

Brant just called me. He is on the plane about to take off, coming home for about 48 hours.

I treasure our weekends.

Peace,

Regina

Day 984 – Grayson’s Journey

Dear family and friends,

Some days just remind me of the 1989 Ron Howard movie with Steve Martin – "Parenthood"; particularly the scene where the grandmother describes her love of the roller coaster. (It makes more sense if you see the movie).

Grandma: You know, when I was nineteen, Grandpa took me on a roller coaster.

Gil: Oh?

Grandma: Up, down, up, down. Oh, what a ride!

Gil: What a great story. [Said quite sarcastically]

Grandma: I always wanted to go again. You know, it was just so interesting to me that a ride could make me so frightened, so scared, so sick, so excited, and so thrilled all together! Some didn't like it. They went on the merry-go-round. That just goes around. Nothing. I like the roller coaster. You get more out of it.

Today was like that. I started my day around 5:45, unloading the dishwasher, taking the trash out, and doing several loads of laundry. By 7:30 I was handling several work phone calls and emails, tending to urgencies that needed immediate attention. I decided to work from home since I hadn't even showered by the time Grayson's caregiver arrived. That turned out to be a good decision.

By 10:30, I heard a shout from downstairs that there was water pouring from the family room ceiling. After doing the usual of turning off water valves, positioning buckets and rags, soaking up the water from the carpeting, positioning drying fans and calling for repair service, I settled back to concentrate on work.

Three hours later, I found the kitchen swarming with ants.

An hour later, Brant called to tell me that my father was at the doctor's office for various tests for his heart condition and would return for more tests tomorrow.

The agency notified me that our caregiver needs to take off three days for a medical procedure.

Brant is due to arrive in town about 6:00 a.m. on Saturday morning and turn around and leave again on Monday morning for a week in Seattle.

Life takes everything you've got. Some days you just have to hold on tight and enjoy the ride.

It really helps to keep a good sense of humour.

Keep smiling,

Regina

Day 983 – Grayson’s Journey

Dear family and friends,

Grayson is still in a relatively non-verbal phase. The two-, three-, four-word sentences are gone and I am lucky to get one word answers – even if I ask for a restatement in a full sentence.

Earlier this week I mentioned that Grayson tried to bite, kick, and hit his caregiver when she tried to get him to stick with a task for more than a couple of minutes. It doesn't happen much anymore but for the first year after his injury Grayson exhibited a fair amount of these behaviors. Most frequently it was in response to someone pushing him to try a little harder or longer. Sometimes we witnessed it in response to caregivers who tried to use power or anger to control his behavior. He pushed back when he felt he was being overpowered.

We must remember that Grayson does not have much control or power over his life any more. Where once he was an eloquent speaker and writer with a rich vocabulary, now he doesn't have good command of more than basic verbal skills. He is betrayed by his body and his mind. What tools does he have at his disposal to respond to a challenge? Self control? Goal setting? Delayed gratification? Understanding consequences? These cognitive abilities are severely diminished if not completely gone. He is at the mercy of those around him to be sensitive, supportive, and patiently keep him out of trouble while encouraging him daily to stretch his abilities.

When he does respond with anger or in self-defense, it is quite easy to redirect inappropriate actions. A step backward out of harm's way. A statement of the (no-hitting, biting, kicking) rule. An immediate acknowledgment of his frustration followed by a statement that we know he doesn't want to hurt anyone. Then a request to use words instead to tell us what he wants (demonstrating appropriate words). This is why I have him practice saying "stop" when he doesn't like what someone is doing. Sound familiar? Anyone who has had young children will recognize the offending behavior as well as the redirecting coaching. It is exactly what we did with our two- and three-year olds.

By the way, Grayson usually follows an episode like that with wanting to give us a big hug.

He is still a loving, little boy inside who wants to please.

With gratitude for our children to our loving, heavenly Father.

Peace,

Regina

Day 982 – Grayson’s Journey

Dear family and friends,

Grayson was non-verbal and very fidgety today. He couldn't decide whether he wanted to sit or walk around. He had a hard time staying seated during dinner and couldn't tell me where he wanted to go when he did stand up.

By the time I finally got him brushed and tucked into bed, I was ready to collapse in bed myself.

May your sleep be restful and healing.

Peace,

Regina

Day 981 – Grayson’s Journey

Dear family and friends,

After several up days in Grayson's cycle, today was a challenge for his caregiver. He wouldn't cooperate in games and refused to drink many liquids. She said that he tried to kick at her, bite her and swung at her at various times including lunch, game time, and question/answer period.

He was exceptionally non-verbal all day and this evening. Even yesterday I thought that he was headed into a down cycle and today's feedback indicated the same. True to form, it is 11:30 pm and he just got up from bed and set off his door alarm.

Let's hope this cycle doesn't last long. The frustrating thing is that it is hard to see progress sustained. Obviously if I look back 2 ½ years the progress is more obvious.

Keep the long game in sight – good advice for us all.

Peace this night,

Regina

Day 980 – Grayson’s Journey

Dear family and friends

Today the house was filled with family and friends, talking and laughter. All of the kids were here – Austin and Xixi, Lauren and Zach, and Lauren’s friend from high school – Jenna. For several hours this evening the chatter and activity reminded me of days gone by – and we were only too happy to be back there again!

Grayson loves a crowd like this. He listens in to conversations intently and laughs at the funny parts of the stories. He was a happy camper all evening.

I leave for Hawaii tomorrow to spend the better part of a week to give Regina’s father a hand, so Regina will have her hands full for yet another week. It has been an unusual heavy period of business and personal travel!

Pax!

Brant

Day 979 – Grayson’s Journey

Yesterday my father flew home to Hawaii. Brant flew home from Alabama. Zach drove to California from Texas. Our home and our day was filled with all of our children plus.

In my life I have, on this earth, said goodbye to my grandparents, my mother and father-in-law, my mother, my brother, and my sister-in-law. Tonight I hold my entire family close to my heart and thank God for every day I have with them.

In peace and thanksgiving,

Regina

Day 978 – Grayson’s Journey

Dear family and friends

I returned home after 6 days of business travel. Grayson was so glad to see me that he just snuggled up and did not want to let go. Regina took this picture and I think that it says it all.

Pax!

Brant

Day 977 – Grayson’s Journey

Dear family and friends,

Every day I am more pleased with our new caregiver.

Among the very thorough written notes and remarks I received at the end of the afternoon was the following statement: "We went for 2 walks and by the second walk I had to 'power walk' just to keep up with him". The last caregiver was content to stroll with Grayson on his walks.

She gets excited when she can get him to accomplish something – how wonderful is that! She reviewed some Spanish vocabulary and had him put the names of his family in alphabetical order. She loves getting him to laugh.

What a joy to have someone who takes her responsibility so seriously and genuinely cares about Grayson. Thanks be to God.

Tonight our extended family gathered for a goodbye dinner for my father who returns to Hawaii early tomorrow morning. It has been wonderful to have him close for the last couple of weeks. We also remembered my sister-in-law Julie as today was her birthday.

At the end of a stressful, emotional yet joyful day, I bid you peace.

Regina

Day 976 – Grayson’s Journey

Dear family and friends,

After the sobering emotions of the last few weeks surrounding saying goodbye to our sweet sister-in-law we spent time reflecting on the love and joy she shared with all of us. Hers was a life well-spent and we are better because of her.

Continuing in the reflection mode we made the decision to make another change in Grayson's caregiver situation. So far, so good. His new companion is a sweet young lady who brings a bright smile with her every day. Not only does she take coaching well but she takes initiative and is creative as well.

For example, yesterday she was playing the card game War with Grayson. He rarely makes it through an entire game before standing up and trying to leave the game table. She quickly made the game more fun by sticking a card on her forehead and making him tell her what the card was.

When I returned home this afternoon I found that she had him sort the mail into stacks based on the name in the addressee line.

Among her written comments was a statement of her delight in making him giggle and laugh today.

I am so hopeful that this is a good match for us all. Settling is not an option.

In peace and gratefulness,

Regina

Day 974 – Grayson’s Journey

Dear family and friends,

If I stay attentive to Grayson throughout the day, there is always something that either surprises or delights me.

A couple of days ago Brant, Grayson and I were having dinner in our kitchen. Grayson loves bread and will always eat it first if there is any served with his meal. Grayson polished off his piece of toasted bread, reached across and took my half-eaten slice off my plate. While I certainly don't need the bread, letting him get away with the theft was not a good teaching option. I took it back and told him it was unacceptable to take food off someone else's plate. As his eyes pleaded for more, I asked him if he had something he wanted to ask me. I expected the usual gesture such as pointing to his mouth or giving a one word answer of "food" or "bread". You can imagine my shock when he responded, without any hesitation, "May I have a piece of bread like yours?"

A responsive eight word answer is an absolute first – and it was understandable!

It still makes me smile just to think about that sentence. Of course, he received another slice of bread, a huge hug, and lots of praise.

These are moments (rare as they may be) that keep me going.

Rest peacefully, my friends.

Regina

 

Day 973 – Grayson’s Journey

Dear family and friends,

One of the blessings of caring for Grayson on a daily basis (and having a husband that travels so frequently) is that I am becoming more patient. Heaven knows I have a long way to go and I am frequently tested but I am learning to slow down. Thank you, Lord for that.

May you each have a wonderful week.

In peace,

Regina

Day 972 – Grayson’s Journey

Dear family and friends

Today was a laid-back day after yesterday’s memorial service for Julie. We relaxed around the pool with Julie’s daughters and Howie, and I worked with my father-in-law Howard setting up his new computer. Later in the day Jimmy’s family showed up and joined us for a swim and dinner. Today included lots of sun and soak time and we also made a pretty big dent in the left-overs! Now that the memorial is over, the journey to healing begins.

Grayson enjoyed his time today – his favorite is always listening to stories. He pays rapt attention and smiles as the story is told. He laughs at the funny parts so he is quite engaged in the story. He also spent some time in the pool today cooling off. He finished his day there with two full plates of food – how does he stay so skinny!

We probably stayed too late as I am wheels-up for Houston at 11:30 AM tomorrow. I need to get packed and off to bed!

Pax!

Brant

Day 971 – Grayson’s Journey

Dear family and friends

Today we said Aloha to our sweet Julie. The day was a full one from morning until the end of the day. Grayson was a champ and as I predicted yesterday, he thoroughly enjoyed listening everyone’s stories.

It’s late and we are all headed off to bed.

Aloha!

Brant

Day 970 – Grayson’s Journey

Dear family and friends

Today was a very full day for all of us. In addition to work, Regina was focused on the final arrangements for the memorial service for our sister-in-law Julie. I joined her at church at 3:00 to rehearse music with the organist and to test the audio-visual equipment. She then finished the programs and had them printed while Grayson and I went to my physical therapy appointment at 5:00. After therapy I ran an errand for Regina then ran home to cook dinner. Regina completed her errands and arrived home just as dinner was ready.

Meanwhile, Lauren, who was en route home after living in Kentucky for the past 10 months, was stuck in the Las Vegas airport waiting for weather to clear. Her 8:00 PM arrival came and went while she was waiting for a plane for the final leg home.  Her chariot finally arrived and she was wheels-up at 9:30 for the short hop to BUR. She was home a little after 11:00. My little girl is home!

Grayson was a champ through it all today. Tomorrow will also be a challenging day for him as he will be with us through all of the preparations, the service and the reception. I know that he will enjoy seeing all of the people and listening to stories – one of his favorite things!

It was a day full of emotion and activity, of welcome and farewell, of love and family. Tomorrow will be even more so.

Pax!

Brant

Day 969 – Grayson’s Journey

Dear family and friends

Today was not a big day for Grayson, but he has come down with a cold. As a result we had him kept in the house and quiet and resting most of the day. That was probably a good thing because it was at least 94° here today. His caregiver also used a box of Kleenex on Grayson. While his nose was running away with his face, his spirits were still good and he still wanted to get up and out today.

We are all looking forward to Lauren relocating home tomorrow from Kentucky. It will be wonderful having her close to home once again!

Pax!

Brant

Day 968 – Grayson’s Journey

Dear family and friends

Grayson accompanied me to my physical therapy session today as he usually does. They really do like him there. All of us “regulars” do our exercises in a room that is not huge but very adequate for what we need. As a result the regular patients tend to get to know each other over time. Today the staff treated Grayson with cookies – he was thrilled! When he was asked if they were good he responded, “Yes!” A fellow patient commented that it was the first time she had heard him talk. I asked him a few questions to show that he does respond in one or two word responses. One of the questions I asked him was who was the headmaster of his high school. He responded “Mr. Bachmann.” Upon hearing the name, the patient said that her daughter went to Flintridge Prep also and it turns out that she graduated the year after Grayson. We then had a long chat as we were doing our exercises about Grayson’s experiences at prep. She was shocked and thrilled to learn that Grayson was one of the leads in My Fair Lady when her daughter was attending.

Isn’t it amazing when someone you assume is practically a stranger turns out to have traveled some of the same ground with you in life? It truly is a small world.
Pax!

Brant

Day 967 – Grayson’s Journey

Dear family and friends

Tonight Grayson walked up to Regina as she was washing dishes after dinner. She asked him if there was something he wanted, knowing full well that he was going to ask her to watch TV. He responded, “I want to kiss you”, then he planted a nice kiss on her cheek. He still knows how to get to a mother’s heart!

Thanks for all of the unexpected and special gifts we receive every day!

Pax!

Brant

Day 966 – Grayson’s Journey

 Dear family and friends

Yesterday we discovered a digital picture frame that we thought had stopped working months ago. This was the digital picture frame that we had with Grayson during his recovery in acute rehab in Burbank and at CNS in Bakersfield. By some miracle of the electronics deity, we plugged it in last night and it began working again. This device had a slide show on it that we had prepared specifically for Grayson during the early days of his injury so that he could look at it to remind himself of his family and some fun events in his past. This morning at breakfast Regina played the slide show for Grayson. She asked him to start identifying the pictures or the locations and he was spot on. The one that really blew her away was one of Lauren wearing a hard hat and posing with a large wrench – one as large as she was at the time. Grayson immediately identified the location as inside the Hoover Dam. This was a picture from the summer of 2000 – 12 years ago. Not only could he identify the location, but he was able to use words that Regina was able to understand easily.

What a great start to the day!

Pax!

Brant

Day 965 – Grayson’s Journey

Dear family and friends

Today may have been Sleep-In Saturday, but the day was full. Lauren is moving home from Kentucky on Thursday and we were focused on getting her room back in shape for her. We made enough progress today that it looks as if her room will be ready for her on Thursday!

Grayson was active and alert today. While we were working in the garage or Lauren’s room he was never far away. Grayson was curious as to what we were up to and he hung close to try and figure out what was going on. While we explained to him what we were doing, after 15 minutes passed he no longer could remember. The challenge of brain injury is that the people we love no longer are able to function in the way in which we expect.

Pax!

Brant

Day 964 – Grayson’s Journey

Dear family and friends

Grayson was bright-eyed this evening! After such a slow day yesterday it was fun to see him alert this evening.

I pondered aloud yesterday about the cause of these swings. I think that my least favorite neurologist put it best: “You need to be comfortable with ambiguity.” Ambiguous or not, these swings are real. In the 22 months he has been back home the swings have gone from a multi-day cycle to a much shorter clock – yesterday down, today up.

We had dinner with Howie and the girls this evening after final plans for Julie’s memorial were made this afternoon. Nothing like good Mexican food to brighten your mood!

Pax!

Brant

Day 963 – Grayson’s Journey

Dear family and friends

Today Regina and I were back to work and Grayson spent the day with his caregiver.

Grayson was way off his mark today. We all know that he has good days and bad days. Today he just couldn’t find the neural paths to do much of anything. The simplest of tasks, such as putting on a sandal, had him completely perplexed. I have no idea why these bad days occur, or why the good ones do either. I just know that they do and we have to deal with it.

Today was an exercise in patience.

Pax!

Brant

Day 962 – Grayson’s Journey

Dear family and friends

Today we spent the afternoon at Rita and Richard’s hanging out around the pool and enjoying the mild temperatures and warm sunshine. We were joined by Regina’s father and Richard’s sister for a day of relaxation and family. We finished the day by grilling two tri-tips for dinner and paired them with the delicious sides that Rita had prepared. We had a marvelous feast on this Independence Day!

Grayson had a good day today. He was much more comfortable in the pool than he has been the past two summers since his injury. It may be time to get him in for some adaptive instruction. I would love it if Grayson were to become water-safe again. Grayson also was a bit more verbal than he has been of late, even answering some questions in sentences of three words or so. This is quite an improvement over the “Yes” or “No” that we are accustomed to.

On the way home we were treated to a fireworks show courtesy of Crescenta Valley High School. We pulled to the side of the road and enjoyed the beauty of the fireworks and we stayed until the show was finished. Our Independence Day celebration was now complete!

Pax!

Brant

Day 961 – Grayson’s Journey

Dear family and friends

Today was another busy day – hard to believe that tomorrow is a holiday! I can only assume that the rest of my office is planning to take Thursday and Friday off and is piling it on the two remaining days this week!

Today I learned a lesson that I should have learned several times in my life, but it never quite sticks. The topic is communication. Communication is not achieved by broadcast alone. Communication is generally characterized by both the transmission and reception of data, but that is still incomplete. True communication is the transmission, reception and understanding by both parties of what was intended. Many things can interrupt this – language, culture, personal experiences – the list can go on forever.

Today I told Grayson’s caregiver to allow his feet to air out while he is in the house and to let him wear sandals. She heard me, but missed the “in the house” detail. I didn’t test for complete understanding. As a result she took him on two long walks and played catch outside with Grayson wearing nothing but sandals. After she left at the end of the day, I took Grayson with me to drop off a package at FedEx before going to physical therapy for my knee. He was walking very slowly behind me – even slow for Grayson. I started to get frustrated then noticed that he had a slight limp. I checked and sure enough, he had a huge blister on his left heel. He didn’t complain but just pushed through it. I felt awful. He is not really capable of speaking up for himself even if something he is being asked to do is hurting him.

When we got to the PT office, we performed some first aid to protect the injury and start the healing. They love him there and as I do my exercises, they give him things to do also. I am grateful that he can accompany me to these sessions that are about 90 minutes twice a week – when I’m in town!

Today it hit me in the face that Grayson will need a lifelong guardian angel to keep him safe. I pray that we can find that angel for him.

Pax!

Brant

Day 960 – Grayson’s Journey

Dear family and friends

For a holiday week, today was remarkably busy! I did seem like everyone was trying to squeeze in one last meeting before escaping on vacation.

While there was nothing unusual today, Grayson did have a good day. With his new caregiver he took several walks, played some games and did some exercises out of his home therapy book. This evening, one of my old pals from high school dropped by for a visit before flying home tomorrow. Grayson enjoyed the visit – paying close attention and laughing at all of the antics we described. So I guess that there was one more reunion activity after all!

Pax!

Brant

Day 959 – Grayson’s Journey

Dear family and friends

This was a weekend filled with great joy. Last night was my 40^th High School reunion, and several of my classmates gathered to continue the celebration later last night at a nearby restaurant. This morning we gathered again for brunch which looks to be the final activity in the extended celebration of the 40 years that have passed since we left our high school. I think that we could have talked another several hours if it weren’t for other commitments. Many will be on planes home in the next few days so it was great that we spent the extra time to visit today. How wonderful it was to reconnect with these old friends again! Many that were not able to join us have also plugged into our group and we hope to reconnect with them again also.

This afternoon we gathered at my brother-in-law Howie’s home for some family backyard pool and BBQ time. All of us are still grieving the loss of his long-time spouse Julie and having a back yard full of family is a joyful reminder the love that she gave us all.

Grayson accompanied me all day – to my after-reunion brunch, to the store and to the gathering at Howie’s. He was alert and quite attentive to the conversations all day. He was a happy camper about town!

Pax!

Brant