Day 411 – Grayson’s Journey

Dear family and friends

Grayson and the entire group at the clinic went bowling after lunch today. The group got in an entire game and a pizza! All of the therapists were there also. It is great therapy – out in the community, playing a game together, taking turns, the physical challenge of rolling a heavy ball down a lane, comprehending instructions, keeping score, even putting on bowling shoes and tying the laces – it is all the therapy of living. Grayson had a blast!

It is the last day of 2010. It has been a wonderful year. Even if our lives have been changed forever, it is wonderful to have lived and seen the changes and improvements in Grayson's life. While he will never again be the young man we knew, he is a wonderful and loving young man and we accept the special opportunity we have been given. We are blessed and challenged as we share his journey with him.

Pax!

Brant

Day 410 – Grayson’s Journey

Dear family and friends

Today Grayson and I had lunch together before going to the clinic. It was a nice change of pace for both of us! At the clinic today he focused on cognitive (speech) and physical therapy.

After we arrived home tonight, I unloaded the dishwasher. I put the basket of flatware on the counter and Grayson immediately began to put it away, sorting forks from knives and putting them all in their place. He put about half of them away before losing interest, but I was pleased with the help and pleased that he did so without being asked.

Little things in life are good!

Pax!

Brant

Day 409 – Grayson’s Journey

Dear family and friends

Today was another clinic day for Grayson. Today he worked on auditory comprehension, attention span exercises, balance drills and stationary bicycle work.

After we returned home, Austin and Xixi came over to use the exercise room. After their workout they joined us for dinner. Later a group of Lauren's friends came by to watch a movie. After much negotiation, they watched The Matrix. It was great to have a house full with the chaos of young(er) folks over. The house is alive again!

Pax!

Brant

Day 408 – Grayson’s Journey

Dear family and friends

After a four-day Christmas break, Grayson was back at the clinic today.

Activities at the clinic are great for Grayson as they really work on the areas where he needs focused attention. For example, today he spent time working on auditory comprehension and computer use with some basic typing and navigation. In physical therapy he pushed a 220 lb cart up and down the hallway 4 times and restocked 12 1-gallon water bottles on shelves. (FYI – One gallon of water weighs roughly 8 lbs.) Grayson was pooped when I picked him up tonight!

When we arrived home we gathered and took out the trash. After dinner we opened a gift that Grayson didn't get to on Christmas – the 25^th anniversary edition of the Back to the Future trilogy (yes, now I really do feel old!) We watched the first one tonight. I feel odd saying that I never saw the entire movie before!

Hard work and fun – this is what makes a great day!

Pax!

Brant

Day 407 – Grayson’s Journey

Dear family and friends

Grayson and I had a busy day today. We met with a roofer, did some work on a door lock, had new tires put on the van and dropped the van off for service at the dealer. Along the way, Grayson and I ran into several people that knew him from before his incident. One is a flooring contractor who worked with Grayson while he was helping us get a unit ready to rent. The other was a couple that we worked closely with in Cub Scouting, and who knew Grayson before he bridged to Boy Scouts. We took Regina to lunch and we encountered them at the restaurant. All were glad to see him out and about and all were touched with his current, very different state.

Grayson was a champ today as we ran here and there to get things done. He is still great company but not much of a conversationalist. It takes some effort to keep him engaged but that is what we do now!

Pax!

Brant

Day 406 – Grayson’s Journey

Dear family and friends

Regina got Grayson up this morning and brought him down for breakfast.

When he arrived at the bottom of the stairs, one of us said, "It's December the 26^th", and he responded, "The day after Christmas".  This was astounding as he rarely answers in more than a word unless it is a well worn phrase as in the next line of a song.  It was especially surprising since he is rarely verbal in the morning until he gets some energy going.

This was a good start to a good day. We ended the day watching one of our Christmas gifts – Harry Potter and the Half Blood Prince. Life is good!

Pax!

Brant

Day 405 – Grayson’s Journey

Dear family and friends

"Happy Christmas to all, and to all a good-night."

Pax!

Brant

Day 404 – Grayson’s Journey

Dear family and friends

Christmas Eve! The day before the Feast of the Nativity of our Lord is always a special time.

Our opening hymn for tonight's 6:30 service was Once in Royal David's City. Since 1919, the Christmas Eve program at King's College Chapel in Cambridge opens with that hymn as the processional. The first verse is sung by a boy soprano a capella. When Grayson was in 5th grade, he was chosen to sing that verse to open the Christmas program at his school. Here is an encore of that performance from 1996. (I know that I shared it last year, but it is just too precious not to rerun!)

We are working late on our individual labors of love – preparing gifts and food for our extended family tomorrow. Christmas music is blaring (currently In the Christmas Mood, a fun Glenn Miller band version of Christmas music), the fireplace is roaring, and more and more presents are making their way under the tree.
May the promise of Christmas fill you all with joy and love that will carry you throughout the year.

Merry Christmas!

Brant

Day 403 – Grayson’s Journey

Dear family and friends

Today was the last clinic day before Christmas and the beginning of a four day weekend for Grayson! Regina and the rest of the family continue to scurry around getting ready for Christmas Day that looms perilously close.

Today Grayson had a good day at the clinic. There were lots of treats, but the staff was careful to steer Grayson to the carrots instead of the cookies! Grayson spent his therapy time carrying a 25 pound load up and down the stairs up to the clinic (five flights) twice, sorting items, finding stuff in Theraputty™ and working on multi-syllable word intelligibility.

For the administration and the parents, we are concerned with a change in the insurance carriers, as Grayson current authorization for therapy runs out as the new carrier takes over on January 1. We are hoping not to have another gap in service like the one we had after discharge from Bakersfield. We have one more week to work it!

Pax!

Brant

Day 402 – Grayson’s Journey

Dear family and friends

Another rainy day in "sunny" Southern California! As I go to bed, I "think" that the storm is over (isn't a week enough?) and we will be clear until Christmas when the next storm is expected. A record-setting winter already!

Today we participated in our monthly patient teleconference with the staff at the Centre for Neuro Skills. As always, it was a good conference with lots of data, questions and conversation. I would characterize the near term goals for Grayson now as improvements to quality of life. "Independence" is not really an expectation any longer.

I apologize that I did not take a picture of Grayson today, but he received compliments all day long on how handsome he was. He really did look sharp today!

We were excited tonight when we asked him if he wanted to watch a movie. Regina asked him if he wanted to watch a Christmas movie or something else. He said, Star Wars. We had to honor the request, so we enjoyed watching The Empire Strikes Back this evening!

Pax!

Brant

Day 401 – Grayson’s Journey

Dear family and friends

Yet another soggy Southern California day – this is starting to sound like Seattle!

Regina and I met with Grayson's new physiatrist today. Proof yet again how small the world is, he is friends with old family friends of ours.

Grayson observed another evening of holiday activity as Regina and her sister Rita made dough for Christmas pastry. We all look forward to trying these treats!

Pax!

Brant

Day 400 – Grayson’s Journey

Dear family and friends

We are now at day 400 of our journey.

The wet weather continues – not something that we are accustomed to. Southern California received 25% of its normal rainfall between Thursday and Sunday, and the wet weather will continue for a few more days. The ground our home is starting to saturate and we are starting to get a bit nervous. There was a minor slide just down the street tonight replete with fire engines, police and city workers. So far our home has had no issues.

Tonight was a fun night at the Reed Haus. Austin and Xixi came by and the house was filled with Christmas preparation. Wrapping gifts on the dining room table, shortbread baking in the oven 20 conversations going on at once – it was wonderful! Grayson was a bit overwhelmed with all of the noise and excitement, but he did OK with it all.

The clock is ticking down on Advent. The wait is almost over and Christmas will be here this weekend!

Pax!

Brant

Day 399 – Grayson’s Journey

Dear family and friends

Today was another rainy day in Southern California. Rainfall records have fallen across the Southland and this storm will leave on Monday only to be followed immediately by another. The only good news here is that there are also near record amounts of snow in the High Sierras – good for summer water and winter skiing!

I took Grayson for a haircut this afternoon. He had a very sweet and very pregnant stylist today. As she cut his hair she asked me what had happened to him. I explained a very short version of his condition. At one point Grayson gently put his head on her belly. While it would be odd if you or I were to do that, for Grayson and the stylist it was a very touching and innocent moment. She started to cry, and could barely contain herself for the rest of the haircut. She gave me a big hug as we left, telling me through her tears what a handsome man he is.

Grayson still touches lives, though in ways far different than he did when he was younger. We are vessels.

Pax!

Brant

Day 398 – Grayson’s Journey

Dear family and friends

It's Saturday – a happy cozy sleep-in day. Rain has been falling for 2 days and is expected for another 4 – an unusual situation in Southern California!

Grayson slept in late today – as did I. As the holiday break approaches, our annual ski trip does also. This year it will be what we in the Reed Haus refer to as Mammoth VI – our 6^th trip with various family members to the ski resort in the Eastern High Sierras. This year we are considering taking Grayson and having him participate in a disabled ski program offered by Disabled Sports Eastern Sierra. Today, at the recommendation of the folks at DSES, I put Grayson in his ski boots and had him walk around for about 20 minutes. He was surprisingly stable on level ground. While I am concerned about icy conditions, this was a promising sign. The jury is still out as to whether or not we will take him this year – it depends on our comfort level. Stay tuned!

Pax!

Brant

Day 397 – Grayson’s Journey

Dear family and friends

There was s cookie decorating contest at the clinic today. Grayson was the champ decorating (instead of eating) the cookies. Self control? A good thing! After the contest (and a few cookies), Grayson worked off those extra calories by walking up and down the stairs carrying 15 pounds in a bucket. The clinic is on the fifth floor, and he went down to the ground floor and back up – twice!

Is next Friday really Christmas Eve? Isn't it wonderful? Last year we spent all of our time in the hospital. This year we are getting ready for a wonderful Christmas at home – a long time tradition that we missed last year.

Pax!

Brant

Day 396 – Grayson’s Journey

Dear family and friends

One of the things that I like about this time of the year is the atmosphere. Everything looks so festive – houses, Christmas trees, decorations. Even the houses smell better because of baking and mulled cider and the like. I am always disappointed when Advent and Christmas fade away.

One of the other things I enjoy is sitting around and enjoying special Christmas movies. Last week we started Fred Claus. We finished it tonight to the delight of Grayson and Regina.

One final week of Advent and waiting. Promise abounds!

Pax!

Brant

Day 395 – Grayson’s Journey

Dear family and friends

There are times when I think that this is a blog not JUST about Grayson, but how the Reed family is coping with the journey. Each life touches so many other lives that it is impossible to determine how intertwined we are as a people. I remember when I was at an electronics store with Grayson a few weeks ago and the salesman recognized Grayson from before his incident. Their paths had crossed through friendships in the past, and I saw genuine concern in his eyes for a very changed young man. This is goodness! The more we all believe that our fates are intertwined, the more that reason and understanding will guide our actions.

As we madly prepare for our special Christmas with our families, let us remember to take a few minutes and give thanks for the people in our lives that make us feel like celebrating!

Pax!

Brant

Day 394 – Grayson’s Journey

Dear family and friends

Tonight was not unlike many other nights. Grayson arrived home from the clinic. We did some chores together, played some games and waited for Regina to arrive with a) Lauren and b) groceries. We had a great dinner experiment (chicken with kalamata olives, marinated artichokes and tomatoes) made up as we went along. (It was a success!)

After watching an old Christmas movie (Jack Frost), I gave Grayson his meds – in applesauce as always. After we finished, he stood up. I asked him where he was going. He said, "To hug you." He put his arms around me and said, "I love you Dad."

I was touched to tears.

Then I completely lost all control. Waves of emotion rolled over me like an ocean as I relived the grief of the loss of my son's capacity to live independently, to read voraciously, to speak so eloquently, to be so informed, all while being so caring. I was consumed for a long time before letting go. Then we were back to normal – taking care of our loving and wonderful 25 year-old man-child.

We helped him brush his teeth and get ready for bed before tucking him in for the night.

Pax!

Brant

Day 393 – Grayson’s Journey

Dear family and friends

Tonight we put the ornaments on the tree! Austin and Xixi came by and we added all of our favorite ornaments. Every year we add at least one new ornament to our collection. As we get older, we find that our tree gets more crowded. It's a wonderful journal of our life and we are quick to bore people with stories of the history of each ornament.

Grayson participated tonight due in part to his dear friend Xixi keeping him in the game. He hung ornaments along with the rest of us. He was excited and enjoyed himself this evening. He is like a little child excited about Christmas and all of the promise that it brings.

Advent is a time of waiting, after all.

Pax!

Brant

Day 392 – Grayson’s Journey

Dear family and friends

Today was a wonderful church day. Gaudete Sunday, the third Sunday in Advent, is a day to rejoice, and we did so at church!

Regina, Lauren and I each had different reasons to arrive at church an hour before the 11:00 AM service. In addition to the regular Sunday happenings, Regina was the AV tech this week, Lauren was playing handbells and I was rehearsing quartet music for the concert this evening. After the service we had lunch and Lauren returned to church for more rehearsal. I arrived at 4:00 for my turn, and Regina and Grayson arrived at 5:00 for the concert. All of the choirs (3 children choirs and the adult choir) as well as the handbell choirs (2 children choirs, the high school group, and the adult choir), our organist, a vocal quartet and some soloists made up the ensemble. (I was one of the soloists and a member of the vocal quartet.)

It was a lovely concert!

Grayson probably spent more time in a church pew today than he was comfortable with, but he was a champ. Keeping in mind that he is not unlike a five year-old, 4+ hours in a pew is a long time! He did a great job today, and he followed much of the program tonight.

We returned home to find another surprise – Austin over for a visit! Xixi was tutoring someone in math locally, so she dropped Austin off for a visit before meeting her pupil. She joined the rest of us for dinner – what a treat!

So today was a day for us all to rejoice together – Gaudete!

Pax!

Brant

Day 391 – Grayson’s Journey

Dear family and friends

Today we decorated for Christmas! After last year's holiday season spent in the hospital, it was such fun to put the house on its Holiday best!

Austin came by and joined Lauren, Regina and I to bring the mound of boxes of up to the main floor for unpacking and deployment. After the boxes were up, Austin and I put the lights on the tree – 615 lights to be precise! Mom hung the garland then Austin put the angel on top. We are now ready to hang the ornaments, but that will be a job for another day – likely Monday because Lauren and I are performing in the Christmas Concert at church tomorrow evening. 'Tis the season to be busy!

Grayson followed us around and watched as we put delicate things out. He was also a bit withdrawn today. I suspect that was because of the change to his environment. Change to the familiar is not easy for Grayson any longer. Adjustment takes time – even for the beautiful and familiar decorations that we have always put around the house.

After dinner, Grayson became a bit more comfortable because we watched the Christmas move Scrooge for the second time this season. A delightful film with wonderful music, it is a family favorite.

What a wonderful day! All of the kids home to decorate for Christmas – I don't think that I could ever get a better Christmas present!

Pax!

Brant

Day 390 – Grayson’s Journey

Dear family and friends

Tonight was a guy night. Regina and Lauren went shopping and Grayson and I were left to our own devices. After doing some chores around the house, we went out for sushi – Grayson's choice! The two of us had a nice time at the sushi bar and having our fill of our favorite rolls.

We returned home and watched half of Fred Claus, and Grayson laughed like crazy! I'm looking forward to watching the other half so we can find out how the story ends! We were on the couch watching the movie when Regina arrived home with Lauren.

While Grayson's speech appears to be getting worse over time, other parts are getting better. Tonight while doing a household task, I asked Grayson to dispose of the trash. He picked up the pieces and took them to the trash can in the kitchen with no assistance or cues. I would not have done that in mid-September when he came home.

Step by step!

Pax!

Brant

Day 389 – Grayson’s Journey

Dear family and friends

I arrived home this evening from a business trip to Arizona. Grayson greeted me with a big hug as I came in the door. (Regina did also!)

Since I left on Monday, it seems as if a little something may have awakened in Grayson's brain. He initiated a multi-step task and took some independent action. I was shocked (and pleased!) He also was more focused on doing some tasks, even if they were the mundane things like putting on pajamas. It is way too early to draw any conclusions, but there are some indications that a new "pathway" may have opened up and the results are promising!

Not a bad homecoming surprise!

Pax!

Brant

Day 388 – Grayson’s Journey

Dear family and friends,

This week Grayson walked five flights of stairs carrying 11 pounds of weight in a bucket (the other hand on the hand rail) and then walked five flights with 20 pounds of weight. He walked on flat ground with 20 – 30 pounds and then walked backwards carrying 20 pounds. He pushed a cart loaded with weights, walked 100 steps on a NuStep machine, played Wii Fit games and helped decorate the office Christmas tree.

The occupational therapist worked with Grayson on coin identification and safety (what-if scenarios). She also focused on personal hygiene routines, shoe tying, fine motor skills and identifying multiple sensory stimuli with Grayson's eyes closed.

Another therapist used memory tasks, auditory comprehension, naming categories (e.g. words that begin with the letter "p"), three-step direction following, and word fluency exercises.

How fortunate we are to have access to such varied therapies and creative therapists. Those of you who have been through a rehab and recuperation program know exactly what I mean. In the meantime we are trying to learn as much as we can so that we can recreate this on our own when insurance no longer covers the therapies.

I pray that day is later rather than sooner.

Grace and peace,

Regina

Day 387 – Grayson’s Journey

Dear family and friends

As we have shared several times, Grayson, on a regular basis, will not be able to act out the accurate steps of simple tasks. He needs cues to either get unstuck or remind him of the next step. Then suddenly, without supervision, he will completely follow through and complete several steps without any cueing or supervision. I take this as an exciting and encouraging sign of progress. While not dependable, it shows that pathways are slowly re-establishing with the consistent repetition that is provided in therapy and at home. Day by day and step by step.

This really is a journey. The last several days Grayson has shown many moments that reveal there is much more going on in his mind than he is able to express or act upon. It is a humbling and important reminder that we cannot take for granted that we understand completely what he is experiencing. We learn from him as he re-learns from us. We try to give him choices throughout the day rather than making all of the choices for him. Early on, you may recall, if we offered Grayson a choice of A or B, he would nearly always choose B. More an echo of the last option heard rather than a true expression of preference. Lately he has been communicating some of his preferences and sticking to them. Another encouraging sign of improvement.

A slow, sometimes unsteady, patient, and exciting journey.

Thanks be to God for the opportunity.

Grace and peace,

Regina

Day 386 – Grayson’s Journey

Dear family and friends,


The therapy center Grayson attends Monday through Friday is located on the fifth floor of a medical building. Today, among the varied exercises the therapists ran him through all afternoon, was carrying a bucket loaded to 15 pounds. No big deal you might think but he had to carry it down all five flights of stairs AND back up again.

On the way home Grayson and I stopped by Costco, parked a long way from the entrance, loaded our cart with the usual king sized packages, hiked back to the car, unloaded the cart, drove home and carried everything up our flight of stairs. By the time we were finished Grayson was tired and hungry. After dinner and dishes, we put in a load of laundry and put clean sheets on his bed. I think we managed to tire him out this evening. He went right to sleep.

With Brant in Arizona I think I tired myself out, too. I miss my partner.

Give yourself a hug from me.

Peace,

Regina

Day 385 – Grayson’s Journey

Dear family and friends

Grayson had another good day today. It has been several days in a row that we have noticed some slightly different and more alert behavior. It appears that there is a little something awakening. Because we are with him so much, we notice the very subtitle changes. We will continue to monitor and watch for changes.

This evening I made a large pot of beef stew that we can graze on for several days. While it was in the oven, we watched Santa Clause 2 for the second time this Advent. Grayson laughed and giggled his way through the movie. It is so fun to watch him laugh!

Pax!

Brant

Day 384 – Grayson’s Journey

Dear family and friends

Grayson was a bit more with it all day today. He displayed more self awareness and awareness of others than usual. He was my helper at the grocery store this afternoon and he pushed the cart the entire time. When we arrived back home, he helped me carry the groceries up stairs and put them away.

We watched the big game (as far as LA was concerned!) this evening. The Trojans are once again the champs of Los Angeles after beating their cross-town rival Bruins today. As always it was a great game, and anything could have happened so that the outcome was in doubt until the final few minutes. It is cool that the Pac 10 has 2 BCS-bound teams this year, and that the Ducks will be playing for the crystal football. Go Pac 10! Actually, tonight was the last Pac 10 game ever – Go Pac 12!

Pax!

Brant

Day 383 – Grayson’s Journey

Dear family and friends,

Today Grayson, Brant and I stood with two attorneys before a judge - one attorney representing Grayson and another representing the two of us. We listened as the judge agreed that Grayson was not able to make medical or financial decisions for himself. She approved the petition that Brant and I serve as Grayson's conservators and have authority to act on his behalf in any financial or legal capacity.

It was difficult to hear the words spoken that "based on the extent of neurological damage suffered during Grayson's arrest, his future prognosis affords little hope for recovery sufficient for Grayson to function independently". It was sobering to hear that he would need our approval to marry but curious that his attorney felt Grayson had sufficient capacity to vote in elections.

Nothing is really any different than it was yesterday but it was a harsh reality moment to have so many of our adult son's rights legally removed and relinquished to us. How could anyone understand what it truly means when you agree to become a parent? We certainly could never have imagined this chapter.

When the judge dismissed us, Grayson said, "thank you" to her. She smiled and said, "You are most welcome".

In my heart I am also grateful that we still have Grayson here with us, that we are still able to care for him, and that he seems happy. I am grateful that he still shows small improvements that steadily mark progress. Remember that grass also grows so slowly that its progress may seem imperceptible on a daily basis yet look at it at the end of two weeks. It's undeniable.

Grayson needs us and trusts us to care for him. We don't take that responsibility lightly. We accept the responsibility and ask God's help to guide us.

Grace and peace,

Regina

Day 382 – Grayson’s Journey

Dear family and friends

This evening while I was at a meeting at church, Regina took Grayson out to dinner. While there, a few remarkable things happened. Midway through dinner Grayson took off his sweatshirt. Now that may not seem remarkable to you, but it was to Regina. He responded to a stimulus (too hot) and took independent action on it (took off his sweatshirt). We have become accustomed to him sitting until being told what to do.

Also while at dinner, Grayson looked perplexed or concerned. Regina asked him if anything was the matter or bothering him. He furrowed his brow. She asked what he was feeling. He took a long time to reply. Slowly he pointed his finger at himself. Regina said, "You?" Grayson then pointed at the sky and said, "Am happy!" (Regina cried.)

How can I add to that!

Pax!

Brant

Day 381 – Grayson’s Journey

Dear family and friends

Grayson was a bit slow all day today. He stood up several times with no particular place to go at each meal and several other times today. He had moments of focus and clarity, but they were pretty rare while we were with him today.

This afternoon we had a patient conference with the staff at CNS. The impression that I took away is that Grayson continues to improve physically and although within "normal" range, he is still far from the robust youth he was a year ago. The major problem with Grayson's physical abilities is the lack of cognitive ability to control his actions. He remains a risk to himself and requires supervision at all times to maintain safety.

Grayson's inability to maintain focus and attention on a task continue to inhibit the administration of certain standard tests. The staff really has to work to keep Grayson engaged, and they are always finding new ways to motivate and encourage him beyond the usual 2½ minute attention barrier!

Grayson's speech has continued to be a challenge. This is one area where things seem to be getting worse rather than better. We continue to work at turning this around.

Fortunately, Grayson's pleasant demeanor remains a major positive as he works to recover.

Pax!

Brant