Day 745 – Grayson’s Journey

Dear family and friends

Well, it is one minute past midnight and a windy night has brought the power down here at the Reed Haus. I'll make it brief before all of the UPSs fail and the network switches, routers and the computers run out of power!

Grayson had a great day. Anishka was here again today and kept Grayson busy and full of activity – a great thing for him. We arrived home and had a wonderful time together at home this evening and Grayson was quite engaging – more so than he has been for the past few days. A great first week of Advent!

Pax!

Brant

Day 744 – Grayson’s Journey

Dear family and friends

Grayson had a good day with his caregiver today. Regina got to have another full day in the office – two in a row! Having someone dependable with Grayson on a regular basis is a blessing.

He went to bed and to sleep quickly this evening – one of the signs of an exhausting day OR a down cycle. He appears to be in a down cycle, but he also had a big day. In any event we were glad that he conked out quickly so we could get to bed ourselves!

Pax!

Brant

Day 743 – Grayson’s Journey

Dear family and friends,

Today was another milestone day (for me, at least). After six months of working from home in early morning and scattered hour segments, going into the office in the evenings and weekends, and taking care of Grayson full-time, I am back in the office. The delightful Anishka took full charge of Grayson's daytime care today allowing me to pack up several large boxes of files and return to working a more normal schedule at my job.

Grayson seems to respond quite well to his new caregiver. She is sensitive, quite coachable and willing to learn. Brant and I are both encouraged that this may be a really good relationship for all of us.

Acknowledging all of the positives surrounding this new chapter, I must admit that an old, yet familiar pang gripped me as I drove to my office this morning. It felt similar to the first day of school – excited about new prospects, yet apprehensive that it is someone else who will be encouraging him through the daily growth steps. Knowing in my heart it is necessary for me to share his care with someone, yet feeling a little guilty that I was not there maximizing each hour with him.

Finding balance in our new life with Grayson is certainly the short and long term goal and this is a good move toward that. This will allow me not only to focus more productively on work but also to schedule medical and dental appointments for myself. When I return home in the late afternoon I will actually BE with Grayson and Brant, instead constantly checking emails, voicemails, and catching up on work-related tasks.

When I came in the door tonight, Grayson greeted me with a warm hug and rewarded my unfounded worries with some fairly clear speech. What a treat! In addition to that Brant had a terrific pork chop dinner ready (and another hug).

It's all good.

With gratitude,

Regina

Day 742 – Grayson’s Journey

Dear family and friends

The first Sunday of Advent! Today I was off to church early because I was participating in both services. Regina got Grayson came to the second service and after a few "church chores" we took off for lunch. This afternoon was a quite one as both Regina and I were trying to catch up on some work.

Grayson was a bit slow to respond today, but he was also a bit more aware of things going on in him and around him – a good sign. We'll continue to watch and see if a new pattern is starting to emerge.

The 4-day weekend is drawing to a close. It was great!

Pax!

Brant

Day 741 – Grayson’s Journey

Dear family and friends

Sigh. The football season is over. At least the Trojans went out with a bang and delivered a one-sided victory over their cross-town rivals from just down the I-10. The Trojans couldn't seem to make a mistake and the Bruins just couldn't pull it together. I wish them luck in the Pac 12 Championship against the Ducks next week – Go Pac 12 South!

Grayson was a bit slow today. We went for a walk before the game and he was just having trouble moving faster than a stroll. He continues to have his happy disposition and affectionate ways but is having some difficulty executing tasks that last week were easy for him. I am now convinced that he is at the beginning of another down cycle since this has been going on a few days.

This too shall pass.

Pax!

Brant

Day 740 – Grayson’s Journey

Dear family and friends

I'm not one for Black Friday shopping – I don't need the hassle or the crowds. Generally the day after Thanksgiving is occupied with making stock from the gallant bird that graced our table the day before. It provides lots of delicious soup and, most importantly, the frozen stock provides the special flavor for the dressing that I make the next Thanksgiving! Unfortunately today was occupied with internet service issues and turkey stock has been deferred until tomorrow. By game time all should be well in hand!

"Game time" refers to the cross-town rivalry of Southern California – the USC-UCLA game. This year the game pits the Pac 12 South champ against the Pac 12 South champ that is post-season eligible. The game is always a hoot and the teams look great in their home jerseys – a great tradition reborn a few years back. We look forward to cheering on the Trojans and hope that we prove an admirable tune-up for the Pac 12 championship game that the Bruins will play next week.

Grayson was a bit slow today. That may be due to the late night on Thanksgiving, the excess of food, or one of his cycles – we'll know after another day or so.

Off to bed – a big day tomorrow. Fight On Trojans!

Pax!

Brant

Day 739 – Grayson’s Journey

Thanks be to God.

Amen.

Regina

Day 738 – Grayson’s Journey

Dear family and friends

The pies (pumpkin and blackberry) are baked, the pumpkin bread is cooling, and the celery, onion, parsley, sage and garlic for the stuffing are all cleaned and cut for the morning ritual of preparing the bird. Thanksgiving is here!

Grayson was a bit slow today but he still had some encouraging signs. While getting ready for bed I asked him to remove his socks. He did then went over and put them in the laundry basket without being asked. Very cool! Anishka worked with him again today and he seems to respond well to her low key style and friendly smile. This is the end of her first (holiday-shortened) week and I think that she is a good fit with Grayson!

May the blessings of Thanksgiving fill your household with joy!

Pax!

Brant

Day 737 – Grayson’s Journey

My dear family and friends,

Anishka returned for a second day to work with Grayson today. The good news is that she came back. The even better news is that when it came time for her to leave this afternoon, Grayson stood up and hugged her goodbye.

My gratitude overflows.

Peace,

Regina

Day 736 – Grayson's Journey

Dear family and friends,

What an answer to prayer today has been.

Grayson's new caregiver started today and what a sweet individual she is. She has a ready smile, is patient, encouraging and intelligent. I know it has only been one day but I am very encouraged that she will be good for Grayson.

If I may be so bold as to ask, please keep those targeted prayers coming that she finds this opportunity a good match for her as well.

With a new sense of peace and hopefulness, I bid you good night.

Regina

Day 735 – Grayson’s Journey

Dear family and friends

Regina and I were discussing our anniversary (yesterday) and she reminded me of our friends – including one of the groomsmen – that were so upset that we scheduled our wedding on the day of the USC/UCLA game in 1983! The game was on live in the bar area of our reception – a separate room so as not to distract from the 17 piece swing band playing hits from the 1940s!

Grayson was pretty sharp today. We got up and ready for church this morning, then returned for an afternoon and evening indoors out of the rain and cold that has settled over Southern California. "Cold" is relative, but when it barely gets into the 60s here, we think that it is cold!

We had a wonderful weekend and we are looking forward to a long Thanksgiving weekend in just a few days!

Pax!

Brant

Day 734 – Grayson’s Journey

Dear family and friends

The Trojans beat the Ducks tonight! Thank you USC for the 28^th anniversary gift, even if it is at the expense of many of my Oregon relatives. Since it is our anniversary, we are signing off for the rest of the evening.

Pax!

Brant

Day 733 – Grayson’s Journey

Dear family and friends

The big news today is that we hired a caregiver that will start next week! That is good news for us but will also require an investment in training time. Sometimes you can be so busy that help can actually be a burden in the short run. We are aware that it is the only way to get out from under, but there is that near term dread! Fortunately she is calm, has a big smile and is a mother. All of these are characteristics that will help her be a good fit with Grayson.

Grayson was alert again today. He has had a long stretch of good days – I love it when we have streaks like this!

Tonight Rita and Richard joined us at a local restaurant for dinner. It was an early celebration of our 28^th anniversary tomorrow. I can't imagine being with anyone other than Regina on this wonderful journey we know as life. It is a roller coaster ride but it is sure comforting to know that Regina is the person sitting next to you through it all. I am humbled and blessed.

Pax!

Brant

Day 732 – Grayson’s Journey

Dear family and friends

Grayson remained relatively sharp again today. He has no idea of the milestone that we passed yesterday. Today was just another day for Grayson – another happy day at the Reed Haus because Grayson is always good natured and happy.

We are fortunate indeed. God bless you all for remaining with us on this journey.

Pax!

Brant

Day 731 – Grayson’s Journey

Dear family and friends ("my brothers and sisters, you whom I love and long for, my joy and crown…" Philippians 4:1)

Two years ago today, Grayson experienced cardiac arrest, was with little or no oxygen for nearly 12 minutes resulting in a severe anoxic brain injury.

These two years have been difficult to say the least. Our world was completely turned upside down and will never be the same again.

For Grayson, it means struggling to be understood for the remainder of his life, dependent on the love, patience and support of his family or caregivers. It means having long term memories of what his life was like before, friends, interests, and independence yet unable to remember how to tie his shoes, write his name, what he just ate or how old he is. It means the young man who was curious about everything, now is content to read the same magazine or comic book for hours. It means having to be stretched every day to relearn the basics of daily living.

It put an incredible stress on Lauren and Austin, who found the older brother they grew up with now taking the role of helpless sibling. Their relationship with him forever altered; having to find their way through unfamiliar dynamics both with their brother and their parents. I acknowledge how hard this has been on them just as they were starting to launch their own independent lives and regret the obvious stress Brant and I must spill onto them at times. Our hope is that they know how deeply we love each of them and appreciate their efforts to find new ways to love Grayson and be patient with us.

The personal stress comes in many forms, including financial concerns for Grayson's future, curtailing our volunteer work, with little privacy or free time away from home. Overnight I went from taking pride in being a reliable, dedicated employee to indulging my employer's grace in allowing me to work from home and at odd hours. We are reshaping dreams of what our life was to be like when our family grew up and are trying to salvage our goal of the travel we put off for 26 years.

This journey, however, is filled with many blessings and joys. Grayson is a loving individual who responds to encouragement and cheerleading. He is trusting and fills our days with giggling and laughter. Who could ask for more than that?

Our circumstances have allowed us to become aware of just how loving and supportive our family, friends, and church community are. We continue to experience their love in countless ways and we thank God for each of them.

Not insignificant is the fact that sharing all of this together has allowed Brant and me to grow even closer. As we look to celebrate our 28^th anniversary this weekend, I cannot imagine taking this journey with anyone else and I am thankful to have such a good partner.

Thank you all for taking this journey with us.

As our friend, Mike Sutherland posted to his Facebook page this week, "We have all been given so much in life. So in life how do we respond? Let our response be as extravagant as God's grace."

Regina

Day 730 – Grayson’s Journey

Dear family and friends

Grayson was pretty sharp again today. The normal response to this was in full force and effect tonight – he kept getting out of bed until almost 1:00 AM. That perimeter alarm just kept beeping. I guess he is having a major "awake" period inside that head of his!

Two years ago tonight marks the last evening that we spent with the "old" Grayson. I was packing for a trip to Philadelphia in the morning and he was doing stuff in his room. We all had a nice dinner together. Nothing unusual – just family doing what family does when normal life is happening. In the morning I would head to the airport after a few early morning teleconferences, and Grayson would walk down to catch the bus to work – leaving about an hour after I did.

It was a normal Sunday night and we went to bed in preparation for our big week.

Pax!

Brant

Day 729 – Grayson’s Journey

Dear family and friends

Grayson had me in stitches today. First off, he was as sharp as a tack. Yesterday was an aberration rather than part of a cycle and he woke up bright eyed and alert today. What cracked me up was at dinner and we were joking about a theoretical dog and I said that he was named Fido. I asked Grayson how to spell Fido and he said, "P-h-y-d-e-a-u-x"! He said it so fast that neither Regina nor I could understand, so I asked him to repeat it. He did so more slowly and we were able to understand him. We lost it. "Phydeaux" was the dog in a story that our Boy Scout Camp Ranger Terry Hall used to tell about a Cajun family. He used to have us all in tears laughing at his stories around the campfire. This one was always one of our favorites, and Grayson clearly remembered.

What a joy tonight, and what a joy it was to relive a few of those awesome camp memories from our Scout days. For all of you that are involved in the Scouting movement, the effort you make leaves a lasting impression – even on those affected by severe brain injury. God bless you all!

Pax!

Brant

Day 728 – Grayson’s Journey

Dear family and friends

It was like someone switched off the "alert" switch today – Grayson was really low energy today. We got up this morning and had difficulty making it to church on time because he was dragging so slowly this morning. We did make it and it was an awesome service.

This afternoon Grayson and I ran some errands. One of the things we both had to acquire was new jeans. Now that the weather is finally turning away from shorts-appropriate, both of us have lost so much weight that new jeans were in order. We both scored new pants today, but were amazed at the crowds in the stores – it is not even Thanksgiving yet, but the stores were packed! (Hooray for the economy!)

True to form – a dull day and he went to sleep immediately tonight.

Pax!

Brant

Day 727 – Grayson’s Journey

Dear family and friends

Today was a wild day for Pac-12 Football! The Trojans pounded the Huskies, the Carindal got blown out by the Ducks, the Bruins got thumped by the Utes and the Sun Devils fell to the Cougers. Bowl-banned USC is back on top of the South and Oregon now has the inside track to host the first ever Pac-12 title game. Wow!

We of course cheered on our Trojans this afternoon. Between games late this afternoon, the three of us went for a walk. Regina even got Grayson running for a bit – a very rare sight! We had a nice time in the cool evening just before sunset. We returned to watch the Stanford/Oregon game and eat the beef stew Regina and I had prepared during the USC game. Nothing like a bowl of how stew on a damp and cold night!

Grayson, not a particular sports fan, tolerated the mass quantity of football today primarily by reading one of his Garfield comic books. He was a good sport, and he always enjoys it when USC wins. The exercise is always good for him and he was quite alert today. Unfortunately he was still getting out of bed after midnight – not so fun for Regina and I. Alertness seems to bring on the difficulty in going to sleep. The only sure-fire cure I have found is to have him ski for 5 hours. Last winter he would lie down after a day on the slopes and never even move. The good news is that Mammoth is already open. Soon we'll be there again!

Pax!

Brant

Day 726 – Grayson’s Journey

Dear family and friends

11/11/11 – Today was a special day to honor our veterans. While working this morning, there were squadrons of WW II era fighter planes flying over the skies of Los Angeles going from event to event. There is just something so awesome about the sound of piston-driven airplane engines as they drone overhead. We all owe a tremendous debt of gratitude to all of the veterans of our military. It is great that we set aside one day a year to remember.

Today was also the day when the final Harry Potter movie was released to the home market. We had dinner and then watched Harry Potter and the Deathly Hallows - Part 2 from the comfort of our couch. Movies on demand – how cool is that!

Grayson was still pretty sharp today. We are looking forward to our "sleep in" day tomorrow then the USC – Washington game. Should be a good Saturday!

Pax!

Brant

Day 725 – Grayson’s Journey

Dear family and friends

Grayson was still in a pretty good place today. He was alert and aware of his surroundings. He was able to do some multi-step activities without help today. This is a good thing!

We had the second of several interviews this afternoon in an attempt to hire a caregiver for Grayson. Let's hope that the correct choice is placed before us. The candidate today was very good!

Pax!

Brant

Day 724 – Grayson’s Journey

Dear family and friends

Grayson was still pretty sharp today, but it appears that this cycle may have peaked yesterday. While he was with me at the grocery store this evening he had some difficulty. His task when the two of us go to the store is to follow me and push the cart. Today he couldn't seem to keep two hands on the cart and he kept trying to drive it with one hand. Steering is a real problem when only using one hand. Several times I had to remind him to use both hands – then further remind him to space his hands far apart as placing both hands on the cart next to each other does not help the steering problem! Several times I asked him to come along, and he left the cart and came up to me. He just had difficulty with some concepts that were no problem yesterday.

He also had difficulty sitting down to eat today. Food is usually a great motivator for Grayson, but today he just couldn't focus.

We'll see what opportunities and challenges tomorrow brings!

Pax!

Brant

Day 723 – Grayson’s Journey

Dear family and friends

Grayson was as sharp as a tack today – at least as sharp as Grayson can be. He was alert, was way more verbal than normal (not saying much here), attentive, and he was paying attention and following. It was fun to see him so interactive this evening.

This has been a rather rapid and radical swing this week. These upswings are always fun and they generally follow rather dull periods.

He even went to bed quickly and quietly and stayed down tonight. How cool is that!

Pax!

Brant

Day 722 – Grayson’s Journey

Dear family and friends

Wow – Grayson woke up way more alert than he has been the past week. He walked with much more speed and confidence, was very attentive and alert to even the most subtle humor, was bright-eyed and smiling all day – not the same Grayson that we have seen for a week or so. We are now out of the down cycle and in to an up one!

What a difference a day makes!

Pax!

Brant

Day 721 – Grayson’s Journey

Dear family and friends

Grayson was much more on his game today than in the past few days. He initiated activity, followed instructions well (except when the TV was on) and was a little more verbal than he has been over the past week or so.

After church today, Grayson Regina and I went to lunch then ran several errands. Grayson was right there with me all day.

Perhaps this down cycle is ending!

Pax!

Brant

Day 720 – Grayson’s Journey

Dear family and friends

Today Grayson was still a bit off his game, but I saw glimpses of his coming out of it. He was still very non-verbal today. However he did react and respond better than he has in the past few days. I did notice that he was quite jumpy all day. At one point he startled himself and jumped when his knee hit the electric lock button in the car and they unlocked. I have absolutely no explanation for the jumpiness.

While I prepared dinner we watched a low scoring game between a couple of SEC teams tonight. No one even scored a touchdown! The team with the ugly yellow helmets eventually won in overtime. Grayson had his comic book to keep his interest!

Pax!

Brant

Day 719 – Grayson’s Journey

Dear family and friends

Grayson was off his game again today. He was even less verbal than normal. He had difficulty saying, "Good night Dad." as he does every night when I put him to bed. It was difficult for him to accomplish most tasks, and certainly a task that had multiple steps. We are in a down cycle and I expect that it will be a few more days before we pull out of this one.

There was one bright spot for us today. Grayson was laughing and squirming so much this evening that we thought that there must be an endorphin pipe in the house that sprung a leak. We laughed out loud at his giggling and squirming and laughter this evening while reading a comic book. He got to a place that anything caused him to start laughing. It reminded us of how we are blessed that Grayson still has his good humor.

Perhaps it was caused by the USC romp over Colorado tonight, but I doubt it!

Pax!

Brant

Day 718 – Grayson’s Journey

Dear family and friends

Grayson was pretty out of it today. He was extremely non-verbal and had difficulty with completing even the simplest of tasks. I put him to bed at 10:00 tonight – a bit earlier than normal because he said he was ready. I thought he was sound asleep but at 11:45 he wandered out of his dark room carrying a pair of pants, a pillow, a stuffed animal and a book. I straightened up his bed and put him back down and told him that I loved him. Let's see if it lasts!

A very confused day today.

Pax!

Brant

Day 717 – Grayson’s Journey

Dear family and friends

Grayson was particularly alert today – a sudden shift from the past few days. He was attentive and able to focus and he was, as always, in good humor. As is typical when he becomes more alert, bedtime, or more specifically staying in bed, becomes more of a problem. Tonight was no different as he was popping up and out of his room until after midnight. Fortunately the perimeter alarm hasn't gone off in a while so I think he is down for the night!

Pax!

Brant

Day 716 – Grayson’s Journey

Dear family and friends

Regina had Grayson walking a lot today, anything to get his blood pumping a bit harder. He walked around the parking lot at Costco, inside the store, around the neighborhood – just about anywhere they could. He appeared alert today but was very quiet.

Most likely as a result of his exercise today, he went to bed and never budged this evening!

Pax!

Brant