Day 807 – Grayson’s Journey

Dear family and friends,

Twenty two years ago today our sweet Lauren was born and Brant and I began the wild and wonderful journey of raising a daughter. After two boys, she added a new smile and giggle to the family dynamic.

Looking back now, it is easy to see that each of our children was born with their own temperament, learning style, and unique set of gifts. As a family we have shared so much joy together as well as our fair share of tears along the path to adulthood (theirs and ours). It is quite humbling to realize that there was no way to anticipate just where our journey would take us or where it will take us in the future. It's a good thing that we trust that God has a plan for us.

We are so thankful to have been blessed with our three children - Grayson, Austin and Lauren. We confess that, as parents we have not always chosen the perfect path and are grateful for their forgiveness. We are proud of how they are maturing and treasure the little time we have together, though it can never be enough.

With a look to the future we pray that, with God's help, we will all "do our best". To love and support each other, to do God's will, and each day to wisely use the gifts and talents that have been given to us.

Grace and peace,

Regina

P.S. Happy Birthday, Lauren. May this be the start of your best year yet. We all miss you and love you.

Day 806 – Grayson’s Journey

Dear family and friends,

Brant and I have shared with you several times how we measure Grayson's progress along his journey in mere inches. We don't know when the inches will be gained, exactly where his journey is going to take him or how long it will take. We do know that our ultimate goal is to insure that he knows that we love him and through our love and support he knows that God loves him.

Our intermediate goal is to help him improve his skills of daily living (personal hygiene, dressing, eating, safety, and communication) to the point where he may be able to function at a level high enough to qualify him to live in a group home. Should he outlive our ability to care for him, the cost of one-on-one care for the remainder of his life is prohibitive.

Each one of his daily living skills I mentioned above is significantly compromised hence every waking hour provides an opportunity to practice and encourage progress.

One of the challenges we have mentioned from time to time is his incontinence. It is hard to know if he is unaware of the need to eliminate or simply does not have the ability to choose to disengage from whatever activity he is engaged in. We work consistently on this most basic skill by taking him to the restroom every hour he is awake. Every hour, every day, every week, every month. That's a lot of repetitions.

Twice yesterday and three times today, Grayson stood up from his activity (eating, reading, or watching TV) and pointed out of the room. When I asked where he was going, three of these times he responded "to restroom". What a dramatic and welcomed milestone! Because his short-term memory is so compromised there is no guarantee that this will be the same tomorrow. We can't trust that it is a sustainable pattern yet, but a pattern begins – and that's progress. That's hope.

Those of you who have had small children know how rewarding this hint of improvement is. Imagine a 6 foot 2 inch toddler; imagine two years (so far) of potty training. Imagine mom's delight at progress.

Celebrate the small steps in life, they are all important in the long journey – we can't get from here to there without them.

In thanksgiving and in hope, I wish you each peace this night.

Regina

Day 805 – Grayson’s Journey

Dear family and friends

Late night – early morning on its way. I'm traveling to St Louis tomorrow at the crack of dawn.

Off to bed for a short while!

Pax!

Brant

Day 804 – Grayson’s Journey

Dear family and friends

It was "sleep-in Saturday" – for me anyway! Regina woke up at 0-dark-thirty as usual and we got Grayson up at his normal 9:30. I got to sleep in gloriously until 9:00 today – what a pleasure!

We took it slow this morning then Grayson and I went shopping for some home electronic widgets that we needed to chase down some issues with our home entertainment system. Regina took the opportunity to do some shopping on her own! Grayson and I had a nice lunch while we were out (hot dogs!) then spent an hour or so at Best Buy grabbing the $20 item I needed and wandering around the store looking at all of the shiny new "stuff" that we could live without. There are so many video monitors running so many movies that I was afraid that I would never be able to pry Grayson out of the store! I think that he would be glad to accompany me there for several hours every day.

We returned home and were able to isolate the problem to my AV Receiver (the bad news). At least we now know where the problem is and can address it since the system stopped working last week.

We used a gift certificate to treat ourselves to a dinner out tonight – a lovely end to a beautiful and relaxing day!

Pax!

Brant

Day 803 – Grayson’s Journey

Dear family and friends

Long day – long week. Time for everyone to go to bed!

Pax!

Brant

Day 802 – Grayson’s Journey

Dear family and friends

Well medical week is over – for Grayson anyway. I have my annual physical tomorrow!

Grayson and Regina went to visit his cardiologist at the Doctors of USC today. Everything was fine. The oblation procedure that we performed last summer was effective, and we will probably discontinue several cardio meds that he has been on as a result. We will wait until the results of the blood tests and echocardiogram have been analyzed and reviewed before making the final decision but things look good to further reduce the med load that Grayson's kidneys and liver are taking. Good news indeed.

I am so pleased with the care that we are currently receiving from Grayson's cardiology team. It certainly makes me sad to think that perhaps his electro-cardiac issues could have discovered and resolved prior to that horrific incident in November of 2009. Now there is no going back – only forward. We can only muse about what might have been.

With that melancholy bit of prose, I will bid thee adieu for the night.

Pax!

Brant

Day 801 – Grayson’s Journey

Dear family and friends

Today was day 2 or Medical Week – today was the internist. There was nothing scary about this visit except for the flu shot if you are afraid of needles! This was an annual physical with Grayson's internist at the Doctors of USC and there is nothing unusual to report. Tomorrow he has an appointment with his cardiologist and that will wrap up the big medical visit week for Grayson.

Anishka was here this morning to watch Grayson. When I saw him at breakfast, Grayson looked like he was a quart low on coffee. (Of course Grayson never has coffee – just a figure of speech!) He woke up hard this morning and it took a while for her to get him going. By the time that Regina arrived home to take him to his doctor's appointment, he was showered, dressed, had a long walk, had lunch and was ready to go. What a difference a few hours make!

This evening Grayson was pretty alert and aware. He went to bed quickly and is not stirring – a sign that he was tired and needed the sleep. That is my excuse also this evening and so I too am off to bed!

Pax!

Brant

Day 800 – Grayson’s Journey

Dear family and friends

Another 100 days has passed. We have settled into a new normal as a family. Certainly not the normal that we had hoped for – for us or for Grayson – but it is the "normal" that we have. We are blessed as things could have turned out much worse, we are handling it well for now, and we have become adjusted to the additional things that we have to accommodate and deal with in our lives. 800 days – we have seen small change in the last few hundred, but we do notice. It would be difficult for most to detect the changes as they are so subtle, but we see them. However the rate of change is so slow that improvement positively impacting his care needs is unlikely this decade.

This is "medical week" with Grayson! Grayson has a dental appointment, a cardiologist appointment and a visit with his internist. I was concerned about the dentist, not sure how Grayson will react to teeth cleaning, but he did wonderfully today. Of course Regina was there to make sure that he was comfortable and calm – likely the real reason that things went so smoothly!

So we now head into day 801 and beyond. The coming days will probably not be much different than the last, but we are in good spirits, Grayson is happy and affectionate and Regina and I still have our health. We have much to be thankful for.

Pax!

Brant

Day 799 – Grayson’s Journey

Dear family and friends

Today was back-to-work day. Anishka was here working with Grayson while Regina and I worked. Anishka reported that Grayson was a lot more alert than he was last Friday. Unfortunately, today was a rare rainy day in Southern California so the daily walks were out.

This evening we relaxed a bit after dinner before turning in. Not a lot of excitement to report today!

Pax!

Brant

Day 798 – Grayson’s Journey

Dear family and friends

This morning we were up and off to church. Both Regina and I noticed that Grayson paid particular attention to the sermon this morning. After church we had a quick lunch then we were off to a special treat – an open house at the home that the Shermer kids grew up!

In fact, all three of the Shermer kids were there – Howie, Regina and Rita – as they were not sure if we would ever be able to see the place again so this was a golden opportunity. The real estate agent showing the place was thrilled to hear the history of the home built in the mid 1920's. I only saw the home a few times before Regina's parents sold it and moved to Hawaii in 1984, but to the rest of the kids that grew up there it was like coming home again. A lot had changed – many improvements had been done to the place – but much of the original charm was still there. Things that struck me were the twin arched doors leading out of the dining room, the long curved steps up the front and the spectacular views out the many windows around the house. What a fun field trip!

We returned home to put the rest of Christmas away. All of the boxes found their way back on to the shelves in the garage for another 10 months of storage until they are once again called upon to brighten up our home.

Grayson was content to watch and observe as we saw the old homestead and then put Christmas away. Always a sweet kid, he was playful as we worked today.

Pax!

Brant

Day 797 – Grayson’s Journey

Dear family and friends

It's Sleep-in Saturday – the one day of the week where there are no regularly scheduled obligations! We enjoyed an easy morning together before spending the afternoon on the essentials of living – grocery shopping and other critical errands!

This evening, the Christmas decorations were packed away for another year. Boxes upon boxes of decorations were loaded up in preparation for Christmas 2012. The house always looks so dreary after we put Christmas away, but that also increases the anticipation for the next year. It's only 10 months away!

Grayson has been a charming young man, but a bit off his game the past few days. I suspect that we are heading into another one of his down cycles. I look forward to the other side of the cycle!

Pax!

Brant

Day 796 – Grayson’s Journey

Dear family and friends

I spent some time with Grayson late this afternoon and evening. He was quite slow and unfocused today compared to his "normal". I have no idea if there is a cause or this is just another cycle. Grayson's cycles have been rather subtle lately. We'll see in a few days if they are becoming more pronounced again.

We had a movie night at home tonight. Grayson picked the movie – Mama Mia. What a great movie! The song, Slipping Through My Fingers rips my heart out every time. All of the rest of the movie is a blast. Thanks for the good choice Grayson!

Pax!

Brant

Day 795 – Grayson’s Journey

Dear family and friends

Grayson had a good day today. One of his Christmas presents was a large gingerbread man (about 18 inches long) with a decorating kit. Grayson spent time decorating his gingerbread man (after pausing to devour a leg) as an activity today. He consumed about half of his efforts over the course of the day. There is still more for him to enjoy tomorrow!

Regina and I talked about Grayson becoming more and more non-verbal. It is getting increasingly difficult for us to get him to use words to express himself. This video from January 30, 2010 was taken just a few days after his arrival at CNS in Bakersfield. He was reading a script that we gave him and he is difficult to understand, but he read it out loud. He is not able to do this today. While he has improved in many areas, speech is not one of those areas.

Another brain injury challenge.

Pax!

Brant

Day 794 – Grayson’s Journey

Dear family and friends

Anishka kept Grayson busy today. In addition to the normal routine, he went for two extended walks today – about an hour in length each – and when he went to bed tonight, he never budged! She also had him playing a game that required him to think – putting shaped pieces in a template correctly – squares, circles, triangles etc. When he is challenged like this, he scratches his head like crazy – it's almost like he needs to scratch his brain. Slowly he comes to the correct answer, if he gives himself enough time, and he can execute the solution. It is always something to watch – you can almost watch him think.

Grayson and I ran some errands after work tonight. He is always fun to have out in the community. We went to Sport Chalet and Office Depot. He loves to people watch, to touch merchandise and just to be there. At Sport Chalet, he climbed up on the Ski Boot try on area (about 4 ft off the ground) and walked around there exploring for a bit. At Office Depot he loves to look at the technology section – reminders from his past. He is interested, he is observant and he will do whatever I ask, especially if I need him to stop doing something!

It is always an adventure taking Grayson out on errands!

Pax!

Brant

Day 793 – Grayson’s Journey

Dear family and friends

Regina and I both had very busy days at work. Grayson spent his time with Anishka!

This evening we prepared and easy dinner, then we relaxed and enjoyed some TV. Downtime is good!

Pax!

Brant

Day 792 – Grayson’s Journey

Dear family and friends

For much of the nation, today was a holiday. For Regina and I – not so much! We were both busy working early this morning. Regina worked from home as we had no caregiver today. Anishka has only been with us since Thanksgiving week, but she has become a valued member of our team. We missed her today!

Late today Regina took Grayson on some errands to get him out and moving. They were gone a few hours and returned with a treasure of domestic goods from Costco. When I heard them arrive home this evening, I opened the door and Grayson was carrying an enormous container of paper towels – Costco sized! He is always willing to help – we just need to keep the chores within his capability. In this case, the package was large but light so he could handle it safely.

Tasks accomplished – it was a good day!

Pax!

Brant

Day 791 – Grayson’s Journey

Dear family and friends

Today was a busy day for us. We were back on our normal Sunday routine this morning for the first time in 4 weeks. Between Christmas (that fell on a Sunday this year) and two Sundays in Mammoth, it seems like a long time since a normal service. Of course we were there for Christmas Eve and a few meetings, but no regular services since December 18^th. It was good to be back!

A major focus at church this morning was the baptism of Pastor Sarah's new baby – Zoe. Baptisms always get to me and this one was no exception. I still remember when Grayson, Austin, Lauren and I were at the font being baptized together in 1994 – just 3 months before my mother passed. It was an emotional time then and every baptism I witness evokes those same emotions.

The afternoon quickly disappeared with some Scout business and suddenly the sun was setting. Was the weekend gone so quickly? (Especially for those of us that have no holidays between New Years Day and Memorial Day!) Grayson, Regina and I dusted off the Wii that has been lying dormant for the past few months and played some new games that we received for Christmas. We decided that we were going to play with our remaining hours of weekend!

Pax!

Brant

Day 790 – Grayson’s Journey

Dear family and friends

Today was a sleep-in day after a late night last night. Rita and Richard were over and we talked and laughed until the wee hours of the morning!

Today was characterized by relaxed start, some errands late in the day and a kicked back evening. My kind of day!

Grayson was alert and affectionate all day. He ran errands with me today and was very helpful in carrying skis and a snowboard to Sports Chalet to erase the effects of Mammoth's rocks. Without Grayson I would have had to make two trips. Given a little bit of direction and a simple task he still does what he can – he wants to please and do his part. We just have to make sure that his part is within his capabilities and then celebrate success!

Grayson is not all that different from all of us – we want to do our part then celebrate success!

Pax!

Brant

Day 789 – Grayson’s Journey

Dear family and friends

It was a very late night, so we'll skip the post this evening!

Pax!

Brant

Day 788 – Grayson’s Journey

Dear family and friends

The advantage of having a caregiver during fora caregiver for us is that our days are now worry-free as we go about our business of working for a living. The disadvantage is that we do not see what is happening with Grayson during the day. Tonight I was at a church planning meeting and I didn't get to hardly see Grayson all day so it is difficult to relay information about his day to you.

What I do know is that Anishka got his up this morning, fed him breakfast and meds, showered him and put him in clean clothes, took him for a morning walk, let him have reading time, fed him lunch, took him for an afternoon walk, let him have afternoon reading time and played a mind game from the pile of games that we have.

Grayson was almost ready for bed when I returned from my meeting at church tonight. I tucked him in and he said, "Good night Dad." When I told him that I loved him he responded, "I love you too."

Life is good.

Pax!

Brant

Day 787 – Grayson’s Journey

Dear family and friends

We are now in full non-vacation form! Busy days – year end filings for Regina, establishing goals and objectives for Brant as we look forward into 2012. The busy beginning of the year – always a welcome time of start up and renewal and new opportunities!

Grayson has been more alert and active than ever since returning from Mammoth. Skiing is good for Grayson, and the extended opportunity afforded by our stay in Mammoth has done him some good I believe. The cognitive challenges presented while determining where to ski and avoiding obstacles, all the while dealing with uneven snow conditions is a good workout for Grayson's brain. All together he participated in 11 half-day sessions over the course of our trip and the repetition showed in his improved skill while on the trip and the effects seem to be crossing over into non-ski activity since we have returned. He is a bit more verbal, he is much more alert and he is more tuned for longer periods than we have seen in a very long while. In fact, tonight I said to Grayson that, "Ogres are like onions." He completed the line from Shrek – "They have layers!" The particularly funny part for me is that he said "layers" with a bit of a Scottish accent – something I have not heard since his incident. We witnessed a rare little window into the old Grayson.

Recovery from brain injury is a game of microns, but it still moves forward. We recognized a wee bit o movement tonight!

Pax!

Brant

Day 786 – Grayson’s Journey

Dear family and friends

Long day today – short night ahead. We'll catch up tomorrow!

Pax!

Brant

Day 785 – Grayson’s Journey

Dear family and friends

Today it was back to the rush of normal life after 10 days of vacation, and a week of holiday before that! Anishka was here for the day while Regina and I worked.

A belated report on Sunday: We were in a mad rush to get out of the condo and off to Disabled Sports Eastern Sierra in time for Grayson's afternoon lesson. We made it, but after 9 nights, it is amazing how much effort it is to get moved out and pack the car. We refer to packing the car as "Tetris" if you are familiar with the computer game. If we would have had one extra bag of potato chips I don't know where we would have put it!

Grayson had a great lesson Sunday afternoon. Although a bit uneasy because of the flurry of activity surrounding moving out of the condo, Grayson seemed to perk up a bit in the afternoon. He skied well and kept his speed in control. Here is a short clip of him skiing on Sunday.

It was a great vacation!

Pax!

Brant

Day 784 – Grayson’s Journey

Dear family and friends

We made it safely home late tonight. We are all off to bed and I will give you a full report tomorrow!

Pax!

Brant

Day 783 – Grayson’s Journey

Dear family and friends

I'm not really sure how to describe today as anything other than "WOW"!

I decided to let Grayson have two sessions (morning and afternoon) instead of just the afternoon. I rousted him early (7:30 AM) and got him to Disabled Sports Eastern Sierra in time for his 9:30 lesson. This morning he had one of the instructors that he enjoyed yesterday and another that he had not worked with before. Both ladies worked well with Grayson. He did much better than yesterday on the beginner hill – following instructions, turning to control speed on command and the like. The decision was made to grab a harness and take him to more challenging terrain. The harness was, like yesterday, to keep him from just flying out of control down the hill. On the last run of his session (down Mambo) they only had to slow him down once as he was doing well controlling his speed. Here is a photo of Grayson and his instructors at McCoy Station with a special guest – Woolly!

Grayson and I went to the Main Lodge for lunch and spent a nice hour alone together – Grayson had pizza and I had a salad.

This afternoon we had the privilege of having two of the professionals (not the usual volunteers) work with Grayson. I wasn't about to miss this! Grayson did three runs down the beginner slope then we were off to the gondola. We came down Mambo then rode chair 6 back up. Then we went down Mambo again but instead went to Mill Creek. We stopped there to get some water and use the rest room before getting on Chair 2. We went to the top of 2 and headed down Broadway – without any restraints. Zachary talked Grayson down the entire way – coaching him on making his turns, keeping him in control and encouraging him the entire way. Brian and I took up positions in the rear to keep people clear of Grayson and Zachary (they call us "blockers"). This was a red letter day since the last time Grayson was on Broadway was before his incident. All of us – instructors included – were so thrilled! Here is a picture of Grayson going down Broadway with Zachary leading the way.

Tomorrow morning we pack and check out. We'll ski in the afternoon before heading back to LA. Tonight Grayson, Austin, Xixi and I went out to dinner on our last night at Mammoth – this trip. The Reed Family Mammoth VII trip is almost over, however we'll be back for certain!

Pax!

Brant

Day 782 – Grayson’s Journey

Dear family and friends

Grayson had a bit of a rough day today. I say a "bit" because on one hand he was very alert. On the other he was unable to focus or to do some the things he usually does.

He had one of his favorite instructors from Disabled Sports Eastern Sierra today. He just couldn't seem to follow instructions, especially when it came to keeping himself in control by turning to reduce speed. He did a few good parallel turns but he just wanted to point his skis forward and barrel down the hill. His lead instructor, one of his favorites, put a belt and straps on him so she could keep him from running away. Then to my surprise, she took him to more challenging terrain. The other instructor skied right next to him and held his hand to steer. With one instructor behind applying the brakes and one next to him steering, he did really well. He actually went down Broadway as the last run of the day.

On a day that was a bit rough we had a great finish!

Pax!

Brant

Day 781 – Grayson’s Journey

Dear family and friends

Today was a great day for all of us! Grayson got up early and took a morning ski lesson from Disabled Sports Eastern Sierra. Xixi took a lesson from the Mammoth Ski School and Austin and I got to ski all over the mountain for a short time this morning. Grayson had an awesome session this morning from (no kidding) a high school sophomore who not only really knew her stuff, but was an absolute pro at keeping Grayson engaged by talking and encouraging him the entire time. At the end of his lesson, she and her adult assistant took Grayson over to more challenging terrain and he did quite well. Austin and I went along for the more challenging terrain and saw firsthand just how well Grayson did.

We had lunch at the Main Lodge then Grayson was back for an afternoon session. Grayson skied with two of his favorite instructors who kept him laughing and engaged the entire time. We returned to the condo tired but happy!

Pax!

Brant

Day 780 – Grayson’s Journey

Dear family and friends

This morning we (sadly) put Regina on a plane back home. We will all miss her for the rest of our trip (especially me).

It was an amazing day here at Mammoth. In the Ski Capital of California, the temps at the main lodge were 58 degrees! Everyone is praying for colder temps and a bit so snow. The snowmaking equipment put in during the droughts of the 1990s are paying off for Mammoth as they are able to open more trails than anyone else! While I am having a ball, I realize that I am creating my new "rock skis" as I continue to ski the mountain!

Grayson had a great day today skiing with some new friends from Disabled Sports Eastern Sierra. He has had some amazing progress this week that we have noticed – most particularly in problem solving. Little things like responding to a request to put his hands in his pockets yesterday. While a seemingly innocuous request, he couldn't put his hands in because the pockets were zipped. He took the initiative to unzip the pockets and put his hands in. This is real problem solving at the practical execution level – something that Grayson will need in the future. Quite an inspiration!

Pax!

Brant

Day 779 – Grayson’s Journey

Dear family and friends

Today was a busy day for us all. I was up and out early to take a ski lesson – something I do every year in order to improve my skills (from bad to less bad!) I met up with the rest of the gang at Disabled Sports Eastern Sierra in time for Grayson's lesson this afternoon.

Grayson did well today mostly just having fun on the slopes. Not every day is a breakthrough!

Tonight we went out to dinner at my favorite restaurant here in Mammoth since Regina will be flying home tomorrow. Here is a picture of us all on our last night together here in Mammoth!

Pax!

Brant

Day 778 – Grayson’s Journey

Dear family and friends

Today was an easy sleep-in-drink-coffee-and-relax-while-we-watch-the-Rose-Parade morning! Austin and I eventually skied across the mountain and met up with Regina, Xixi and Grayson who drove to the Main Lodge where Disabled Sports Eastern Sierra (DSES) is located. We managed to make it with some time to spare for his 1:00 lesson!

Yesterday I spoke about how well Grayson was skiing for someone in his condition. Here is the video I promised from January 1^st. It may take a little time to load, so I'll apologize in advance!

Today Grayson did extremely well. He was with some of his favorite instructors and they took him on an adventure! He was doing well enough that they decided it was time to move from the Discovery Chair to a bigger hill. Today he did an intermediate run – Mambo – and he did very well. He is skiing in control, knows how to stop, and knows how to avoid other skiers. His turns were looking very good and his skis were nice and parallel. One run was about enough for his legs and we decided not to push it, retiring back to the discovery chair for some fun.

After we departed DSES for the day, we walked to the car. Xixi asked Grayson to get in the car and he tried, but his gloves didn't allow him to properly engage the handle. On his own initiative he removed his gloves, opened the door and climbed in. Good problem solving Grayson!

Tonight we watched the tail end of the Rose Bowl (yea Ducks!) and the Fiesta Bowl (sorry Trees) as we prepared a simple dinner of Cajun Salmon on mixed greens. We made sure everyone had their 5 servings of fruits and vegetables today!

It's 10:30 and everyone is already in bed. Must be REAL vacation!

Pax!

Brant

Day 777 – Grayson’s Journey

Dear family and friends

In Hawaii today we would say "Hau'oli Makahiki Hou", or Happy New Year!

Today was a great day for Grayson. He woke up refreshed, alert and ready to go! He had a great day on the slopes. He did so well skiing it was wonderful to see. I have a great video, but it will have to wait until tomorrow because the upload times on my cellular modem are way too long!

Tonight we stayed in and cooked and tomorrow will be another Great day at Mammoth!

Brant