Day 684 – Grayson’s Journey

Dear family and friends

Grayson was a bit better again today. While still not at the top of his game, he was a lot more alert and active than he was earlier in the week.

After work today Grayson and I ran some errands then picked up dinner at our favorite Italian restaurant. We brought our feast home and watched a movie. By the time dinner was finished and the movie was over Grayson was tired and ready for bed – so ready in fact that he stayed down without getting out of bed once.

It was a wonderful end to our week and we have a big day ahead tomorrow!

Pax!

Brant

Day 683 – Grayson’s Journey

Dear family and friends

Today was a far better day. Grayson woke up significantly more alert than the past few days. While not his best, he was still so much better than he has been it was a relief. These cycles are real!

Today after hearing a music phrase he would sing the next bit with relatively good accuracy. He was more talkative, and he was more active. And as always when he is in the more alert and active parts of his cycles, 90 minutes after going to bed he was still setting off the perimeter alarm in the room by walking out – usually with some stuffed animal from his bed or his pillow. Finally he has been quiet for about 30 minutes!

So we are now in the "up" part of the cycle and have some more interesting things to look forward to over the next week or so!

Pax!

Brant

Day 682 – Grayson’s Journey

Dear family and friends,

Today was the kind of day that makes my heart heavy.

Grayson was far off his high today. He had a really hard time with just about everything.

The head scratching that Brant referred to yesterday continued from morning to late tonight. He could not remember what day of the week it was even for 30 seconds. He could not write a legible "X" on his calendar to mark off yesterday's date.

He also had more difficulty speaking today. He could not construct a complete sentence when asked and barely uttered "yeah" to yes or no questions.

I thought maybe getting him to breathe deeply and walk quickly might help so we walked a great deal this afternoon. We walked up and down the street, across parking lots, carrying groceries up the stairs, etc. He had a really hard time getting out of slow gear and more difficulty than usual cooperating with tasks.

Grayson stood up during meals, walked around the house with a book in his hand, and had a hard time making even an A or B choice. Days like this also bring an increase in incontinence.

There were two things of particular interest I noticed today. The first was that while he was brushing his teeth this morning he did not stop after 10 seconds and hand the toothbrush to me as usual. He kept brushing for nearly a full minute before he stopped. With encouragement he continued for another 30 seconds before stopping a second time. That's an improvement.

The second observation was that this evening his hands, which are usually cold, were very warm. This was so unusual that I checked his temperature to make sure he wasn't running a fever.

My heart was heavy because improvements are so slow, so small, so unpredictable and undependable. And life is so fast.

Grayson snuggled into bed tonight. We exchanged "I love you"s and I closed his door hoping for a better day tomorrow.

With God's help.

Regina

Day 681 – Grayson’s Journey

Dear family and friends

There must be a cycle going on. Actually, there is always a cycle – it is just a question of where we are in it. Today Grayson was way off target all day. He had difficulty accomplishing the simplest of tasks. It was very difficult for him to focus and he was very non-verbal all day. I look forward to the upswing in the cycle in a few days.

We all have good days and bad days. With the proper attitude and desire most of us are able to pull ourselves together enough to function in society on our bad days. This is because we have the mental capability to do so. Our brains have sufficient reserves to carry us along even when we are just not quite right with the world. Grayson no longer has the mental reserves to carry him along when he is having a bad day. We noticed this even when he was still at the clinic in Bakersfield before he came home over a year ago. One thing holds true good day or bad – Grayson is happy. Even if he can't button his pants, he smiles and gives you a big hug.

Good days and bad days. Next time you have a bad day, try to be happy like Grayson and maybe things won't seem so bad.

Pax!

Brant

Day 680 – Grayson’s Journey

Dear family and friends

Today Grayson was a bit off his mark. It was one of those "head scratching" days.

Now if you haven't seen Grayson in the past 18 months, that last statement might not make much sense. On a good day if Grayson really has to focus and think about something he will scratch his head. The more he has to think, the more the scratching – up to and including both arms all over and around his head. On a challenging day, the head scratching will manifest itself with much less challenging problems, such as asking him to stand up or to say a word. Today was one of those challenging days. He even had a hard time staying seated while he was eating. As he stood up from dinner for the third time I asked him where he was going. He looked at me and said, "I don't know."

As always Grayson was in good spirits. For that we count our blessings every day.

Pax!

Brant

Day 679 – Grayson’s Journey

Dear family and friends

Today Grayson's "alertness" level was about normal for him – he was better than some days, but not as good as his best. All in all, he had a pretty good day.

We started the day by going to church, and it was great to see everyone after being away for several weeks. (I was in the hospital last Sunday and on a plane the Sunday before that!) After much conversation after service, Regina, Grayson and I went to lunch then dropped Regina off at her office to do a little work. Grayson and I shopped at Home Depot for an hour until Regina had collected all of her work and was ready to return home.

Grayson and I then went to the grocery store where we laid in supplies for the week. We returned home, prepared dinner then watched a Sunday night movie. Tomorrow morning we will be back at it!

Pax!

Brant

Day 678 – Grayson’s Journey

Dear family and friends

Grayson was not as bright-eyed today as he has been for the past several days.

We let him sleep in a bit this morning while we had our coffee and read the paper. When we did get him up later this morning, Grayson and I spent most of the remainder of the day together. We did chores, ran errands and other things together this afternoon. This evening we settled in to watch the game while I cooked dinner. Unfortunately the game was a huge disappointment. Fortunately he went right to sleep afterward and did not get out of bed once.

Even when Grayson is a bit behind the alertness curve, he is still a sweet and loving guy. He always wants to let you know that he appreciates you by snuggling up close or giving a hug. When all is said and done, isn't this what it is all about – letting those that love and care for you know that they are appreciated? We are lucky indeed!

Pax!

Brant

Day 677 – Grayson’s Journey

Dear family and friends

Grayson was pretty alert today. He has been bright-eyed for the past few days now.

This evening we went to dinner with Rita and Richard at our favorite Chinese restaurant in Montrose. We had a delightful time and Grayson was very calm and well behaved for an extended period of time while we ate, talked and enjoyed the warm summer-like evening and sunset. We dined outside, something that will end shortly as the seasons will be changing soon. (In Southern California, summer weather continues for another month.)

It was a wonderful end to a week that had a very scary beginning!

Pax!

Brant

Day 676 – Grayson’s Journey

Dear family and friends

Today we were somewhat back to normal at the Reed Haus. Grayson was relatively alert today and that is good! After work today we went on our walk up the canyon and back for the first time in a while. The cardiac kids in this family need the movement!

I did notice that Grayson did a much better job keeping up with me on our walk today. He'll normally take a few steps, like 2 or 3, with me at my pace then fall back in to his normal saunter. Today he walked a lot of the way with his hand on my shoulder to keep pace with me. Other times he stayed pretty close while I was walking at a pretty good clip. The exercise is good for Grayson. It doesn't do me any harm either!

Pax!

Brant

Day 675 – Grayson’s Journey

Dear family and friends

Today I started getting back in the swing of things by catching up on a lot of personal business that I had fallen behind on, making medical follow-up appointments and starting to read the email barrage that I am now days behind on. Tomorrow I'll go back to real work and start to work down the backlog there!

Tonight Regina and I had the opportunity to assist the new Cub Scout Pack at our church with their recruiting night. What a joy to see those eager 1^st through 5^th grade boys embrace the program, and the nervous and very tentative parents try to figure out how they could possibly participate. The evening was a success and I am so glad to see Scouting back at our church after an 8 year absence.

Grayson was a champ today. During the Cub Scout meeting he was alert and following all of the conversations and presentations. He was patient, but more importantly he was interested in what was going on. He spent much of his youth in that room in den and pack meetings so the material and location was familiar to him. When Regina organized some games to keep the younger participants under control, he was observing with great interest. Just for fun, here is a picture of Grayson as a Bear Cub Scout in 1994. (Yes it was shared previously, but it is great fun to see it again!)

It is good for Grayson to be in the community and see life. It is equally good for the community to see him as he is the object of continued prayers for healing.

Pax!

Brant

Day 674 – Grayson’s Journey

Dear family and friends

What a difference a day makes. Not only is Brant home (yippee) but Grayson was much more alert today.

After two days of virtually sitting around the emergency room and Brant's hospital room I really focused on getting Grayson some extra physical exercise today. We went for a long walk up our street/hill and back and I was impressed that his pace was faster than usual. Even got him to jog for a short time. Then I had him help me take out trash and recycle, strip the linens of his bed, help with his laundry, remake his bed, wipe the kitchen counters and make countless trips up and down our stairs putting things away.
 
Simultaneously, I kept up a constant banter with him – asking him questions, seeking his opinion, asking him to name things, and having him make choices. His speech is still very hard to understand so I frequently have him repeat what he says asking him for "big lips" so that he emphasizes his consonants. It helps tremendously.

Yesterday he was not speaking much, resorting to pointing (to his mouth, the television, etc.) when he wanted something. As I have mentioned before I don't let him get away with that. At one point last night after we returned from the hospital, I was trying to get him to tell me what he wanted rather than merely pointing. The conversation went something like this.

"Grayson, you need to speak words to me. If you don't use your voice you will lose it. I want you to be able to speak with all of us. Don't you?"

He said, "Yes".

"Tell me what you want. 'I want…'" (I often start the sentence for him and he finishes it.)

"I want to do stuff".

Wow! He wasn't parroting back to me what I had just said; he was digesting what I said and made his own statement. That simple little sentence was loaded. Because he has a hard time communicating doesn't mean he doesn't have something to say. Because he has a hard time concentrating doesn't mean he isn't thinking.

I am humbled by the responsibility to help him recover some of his ability to process and communicate.

The peace of the Lord be with you.

Regina

Day 673 – Grayson’s Journey

Dear family and friends

You never know what life will bring.

I'm home again tonight after two days of some intense medical attention. While a bit frustrated that we were not able to get completely to the bottom of it, we were able to rule out a cardiac problem. That is great news! So I'm home and a bit tired – the hospital is not a place for rest! I'm going to take it easy for a few days then I'll be back at it.

Grayson has been a champ these past few days. He was bored to tears sitting with Regina and I in the hospital, but he hung in there. He has been a bit off his mark the past few days, but routine is important, and the past few days have been far from it.

I am grateful that I still have not had a heart attack. I am joyful that I have such a loving and supportive family. I am thankful for knowledgeable and caring physicians, technicians and nurses who are there for all of us. I am humbled by all of the messages of support and prayer. I am blessed each day that I am able to draw breath and play in this beautiful place with all of you.

Pax!

Brant

Day 672 – Grayson’s Journey

Dear family and friends,

On Friday I wrote about things being beyond our control. Today was another perfect example.

While we were getting ready for church this morning, Brant started having chest pains. While not quite as intense as three months ago it was significant enough for another ambulance ride. Thankfully no evidence of heart attack but no clear explanation either. Tomorrow will bring an angiogram and hopefully some answers.

There were several things that amazed both of us. The attending physician today was the same one that was on duty on June 3^rd when Brant had his initial symptoms and had his stent put in. The cardiologist on duty today was the same one that cared for Brant in June and so ably handled his testing and procedures. He was also the cardiologist that handled Grayson's cardiac care when he had his cardiac arrest two years ago. The ER nurse assigned to Brant today was the same one that cared for Brant in June and Grayson two years ago. She is one of the sweetest, most caring individuals you could ever hope to meet. Of all the many nurses and doctors who work in this hospital, what are the chances of having the same ones?

While it certainly is not our goal to have the local emergency room medical personnel recognize us and greet us by first names, it is comforting to have such wonderful people in our community whose goal it is to care for us and ease our way.

As Christians, isn't this what we should all be doing?

In peace and with hope,

Regina

Day 671 – Grayson’s Journey

Dear family and friends

As Regina mentioned yesterday, DFW had "issues" last night and I was forced to spend a (very short) night in a hotel near the airport. I got a flight out this morning and Regina and Grayson were there to meet me at the airport when I arrived early this afternoon.

Grayson and I spent the afternoon together unpacking my stuff, doing a few chores around the house and getting some groceries. We were all done and in our places for the kick-off of the USC game – today they handled Syracuse quite nicely.

Grayson was generally alert and, as is the new normal, pretty non-verbal. Today however he did something that both Regina and I found unusual. Regina was telling me something and walked out of the room still talking. She said a word that I couldn't understand. I asked Grayson what she said, and he spoke the word – very clearly. He heard and understood and was able to repeat it back.

Amid all of the chaos of life some things shine through!

Pax!

Brant

Day 670 – Grayson’s Journey

Dear family and friends,

Grayson was stuck in low gear all day today. He had a hard time speaking, walked slowly and struggled with the simplest tasks.

Brant's plane from Huntsville to Dallas was diverted to Shreveport for hours waiting to refuel and for storms to pass. By the time he got to Dallas his connecting flight to Burbank had already departed and he will spend an additional night away from home.

My internet connection is down tonight so I am not able to post this until it is functional again.

Some days things are just beyond our control. All we can do is control the way we respond to them.

Peace,

Regina

Day 669 – Grayson’s Journey

Dear family and friends,

Grayson was awake when I went into his room this morning and he got up without me ringing his alarm. His alertness level was fairly sharp for most of the day though his answers were back to one word.

While we were walking today he was able to keep up a pretty good pace compared to his usual saunter. This doesn't happen often.

The day held an especially sweet surprise this afternoon when we ran into Dr. Parker - a friend, mentor, and former teacher of Grayson's. They have not seen each other for nearly two years and the short reunion was a warm symbol of how close a bond they share. Dr. Parker's personal journey with neurological challenges gives additional gravitas to his frequent supportive comments and prayers. He is an important part of Grayson's extended family and we still see his fingerprints on Grayson's interests.

When quizzed, Grayson was able to remember for a couple of hours who we had seen this afternoon. It is encouraging that he is stretching those memory pathways ever so slightly. (Thanks Dr. Parker for all of the extra time you spent with Grayson over the last 13 years.)

Brant and I are not able to adequately tell each of you, dear friends, just how much it means to us to have your ongoing prayers and support. We love you all and thank God for each of you individually.

Peace to you this night.

Regina

Day 668 – Grayson’s Journey

Dear family and friends,

Grayson was right back to being alert and more focused today.

Right from the moment I triggered his wakeup alarm and got him up I noticed he was "with it". As you may recall, I ring the alarm clock continuously until he gets himself to his feet. It only took about 25 seconds today. Much quicker than usual.

He was able to make breakfast selections and finished his liquids today with a minimum of coaxing.

Yesterday, I mentioned that he bites hard on his toothbrush while we are brushing his teeth. Today, I expressed my frustration by putting the toothbrush down, walking out of the bathroom and closing the door. I stood outside the door and in a few seconds Grayson opened the door and said "sorry". I was shocked by his response. Shocked that he could sort through the situation's dynamic but even more so by his initiating a verbal apology. The whole exchange served to remind me that in spite of his inability to control his actions or express himself verbally, he still has emotions that need to be respected and not taken for granted.

This evening we watched a television show that had the characters gathered together mourning the death of a respected co-worker. One of the characters started humming and then singing "Amazing Grace". I started to sing along and Grayson voluntarily started singing with me - on pitch - clear through the end of the first verse.

At his usual bedtime, Grayson stood up and started walking down the hall to his room. I asked where he was going and he responded "to bed". He went straight to sleep and hasn't gotten up once.

Truly a day that was amazing AND filled with grace.

Regina

Day 667 – Grayson’s Journey

Dear family and friends,

After several days of encouraging alertness and verbalization, Grayson spent the whole day in an unfocused fog.

He was unable to speak more than an occasional one word answer and was incapable of making even a simple "A" or "B" type choice. His hands were shaky and he was wiggly all day. He couldn't stay seated even to watch TV for more than a few minutes but kept leaping to his feet and wandering.

He was less steady and straight walking down stairs and needed more cues than usual to complete various daily sequences.

During meals he had a hard time focusing, picking up food with two hands at the same time, reaching for the food on my plate instead of his own.

Background noises affected him more today than on other days and made it difficult for him to function with any distraction in the room.

When I was helping him brush his teeth this evening, he kept biting down hard on the toothbrush.

When I put him back to bed for the third time tonight, he was standing in his doorway holding two stuffed animals, his pillow and a book.

We've had other days similar to today and there doesn't seem to be a way to determine why or when they come. But they do come. I get frustrated but I'm not as frightened or as discouraged by these days as I used to be. I am learning that Grayson's progress curves don't look like the steady upward curve you might expect (or wish). The pattern is slower and more erratic, uneven, and mostly unpredictable.

The keys are to keep trying, be sensitive and flexible, listen to what he can't express, and just keep on loving him.

With God's help,

Regina

Day 666 – Grayson’s Journey

Dear family and friends

I spoke with Regina this evening and she tells me that Grayson is still in the "alert" stage that we have observed over the past few days. When he is like this we are always excited because it shows us that progress is always possible. The sad part is that it always seems to come to an end and we feel like we are right back where we were before. We never give up hope!

I spoke with a dear friend from church this evening and she told me something that really touched her yesterday. Grayson, as you might expect, is always a bit overwhelmed by all of the people that want to greet him at church. He is pretty famous at our house of prayer and everyone knows who he is. He is pretty shy and non-verbal anymore and seldom reaches out to greet or say hi unless someone else initiates. Yesterday our friend made eye contact with Grayson as she was walking down the center aisle. He raised his hand and waved at her. She was floored! She told me tonight on the phone that she was never sure if he knew who she was. I explained that he remembers everyone from at least several months before his injury. She was so touched because she always loved Grayson. Tonight she told me that he was always so happy to share all of the things that he had learned in school and how he was always so interested and interesting. He was always one of her favorite children of the congregation.

Grayson is still a favorite of the congregation, just not in the same way as before.

Pax!

Brant

Day 665 – Grayson’s Journey

Dear family and friends,

We rousted Grayson early from bed this morning so that I could drive Brant to the airport for another week of business travel. I wondered how Grayson would do with less sleep. He did wonderfully.

During our church service he joined in with me on the responsive petitions and on several of the hymns. After the service, Grayson and I attended lunch and the first session of this year's confirmation class series with our Jr. High school members. At one point the pastor was outlining that the focus for the year's program would be on the scriptures which are, of course, made up of the New Testament and …. (he paused for response). Grayson's loud voice responded, "Old Testament". He was hanging on every word being spoken around him.

Twice today, Grayson stood up from his activity and when asked where he was going responded "to the restroom". This is very unusual for him. Perhaps it is an indication that he recognizes and is appropriately responding to the sensations we take so much for granted. Or it may merely be that the hourly behavior reinforcement of the restroom sequence is becoming a habit he can occasionally initiate. Either way, I'll take it.

Obviously he was mentally more alert today and on alert days he has a harder time falling asleep. It is 11:45 and I just put him back down for the third time.

I'm sure you've had days like that when you can't seem to shut off your thoughts. It must be especially hard for him. That's why we try to keep the nightly routine simple and regular. It is now 11:53 and he is down for the fourth time.

Peace and sweet dreams,

Regina

Day 664 – Grayson’s Journey

Dear family and friends

Today Grayson was almost as alert as he was yesterday. We had a generally active day that included chores around the house, the running of errands, and the all important watching of the USC/Utah football game. We squeaked by again but it was scary!

Grayson was more alert and attentive to detail than normal today. He was using his voice more than normal too. And when he went to bed this evening he stayed down, unlike last night!

It was a good day!

Pax!

Brant

Day 663 – Grayson’s Journey

Dear family and friends

Yesterday Grayson was out of energy – today he had plenty! This morning he was talking more than we had heard in weeks. He was alert and active all day. This evening when I put him to bed, he was still coming out of his room and setting the perimeter alarm off at 12:30. Ah for a regulator to dampen these swings! All in all I'd much rather have Grayson active and alert than the alternative.

Regina took Lauren to the airport at 5:45 this morning. She is now living on the other side of the country. We are naturally a bit apprehensive at this big change but remain supportive of her dreams. We pray that she makes the wise choices that she is capable of as she begins this new chapter of her life.

Pax!

Brant

Day 662 – Grayson’s Journey

Dear family and friends

5,000,000 households were out of power today from San Diego, CA to Yuma, AZ. It was almost like Grayson was "on the grid" as he was mostly out of juice today also.

Grayson was particularly challenged today. He was slow to respond, slow to react and had extreme difficulty executing tasks that he normally would take in stride. I don't know if it was the heat, dehydration, or just one of those days. In Grayson's case, with no mental or emotional reserve, an off day could look a bit like a shut down. You and I can function by pushing through it. He is no longer capable of doing so.

In any event, he went to bed with little fuss and stayed put tonight. Perhaps tomorrow will be a better day after a refreshing night's sleep! Hopefully the folks suffering 110°+ heat in inland California and Arizona will get some energy from the grid to ease their discomfort also.

Pax!

Brant

Day 661 – Grayson’s Journey

Dear family and friends

It was a blistering hot day here today. We expect warm weather here but it was 105° today – even a dry heat is hot!

Grayson was doing his best to keep his cool. One of the challenges for us is to keep Grayson hydrated, especially in this warm weather. He will rarely chug down a significant chunk of water and it takes about 50 small sips to empty a small glass of water. That doesn't cut it when the weather is this dry and hot!

One more thing to remember to monitor!

Pax!

Brant

Day 660 – Grayson’s Journey

Dear family and friends

After a long and refreshing weekend it was back to work today. It appears that we now have 4 days to get done in what normally takes us 5. On top of that, it was over 100° here today – the boss is really turning up the heat!

Grayson was unfazed by the return-to-work day – he will never have to worry about those responsibilities again. He was content today to do some therapy, accompany his parents on a few errands, watch some TV, eat some wonderfully balanced meals and get ready for bed. His life is much simpler now. Fortunately he is happy and content in the place he finds himself, and he remains as loving as ever.

Pax!

Brant

Day 659 – Grayson’s Journey

Dear family and friends

Today we held a farewell dinner for Lauren before she heads across country to start a new life. She is taking a leap of faith in herself to try a life in a part of the country that she has visited twice previously, and that she really feels connected to. There is also a romantic interest there which increases the attractiveness of the area! We are understandably sad that she will be so far away, but we have faith that she will make the right choices to make her new life in Kentucky a success. Here we are today at Gladstones in Malibu enjoying our meal together.

There was a lot of audio and visual noise for Grayson today – not something he always deals well with. However today he was a champ. He stayed at the dinner table with us for several hours without incident and was pleasant and accommodating all afternoon.

We have a few more days with Lauren as she will depart early Friday morning. I am reminded that as parents we are charged with giving our children roots and wings. Wings seem to grow themselves. Let us pray that the roots we gave are solid as Lauren takes this cross-country step.

Pax!

Brant

Day 658 – Grayson’s Journey

Dear family and friends

Today was a relaxed Sunday – especially relaxed as we do not have to go to work tomorrow! We went to church this morning then had a casual and relaxed lunch outdoors at a local restaurant called Recess. After a delightful lunch we headed home. Regina stayed home to work on some projects and Grayson and I ran some errands.

While in the car today Grayson and I sang some songs together. While not as good as he was when he was doing karaoke at CNS last spring, he did a pretty good job of matching pitch and remembering words to old songs. I wish we could keep him singing more!

After arriving home and putting away the groceries, we prepared dinner, watched a movie and enjoyed our time together. Sounds pretty much like a normal family day!

Pax!

Brant

Day 657 – Grayson’s Journey

Dear family and friends

Today was a great day! While all Saturdays are wonderful, today was special because it marks the start of the college football season! Today we got to watch our beloved, albeit bowl sanctioned, Trojans out on the field again after what seems to be a long absence. Today they won even after trying to give it away in the second half.

With the new Pac 12 I'm still trying to learn the names of all of the schools. All in all, the Pac 12 went 8 and 4 overall today – not bad! My view – The states of Washington, Arizona and Northern California won, Southern California and the newbie's split, and the state of Oregon lost. I look forward to several more weeks of exciting football as the year matures!

After the game, Austin, Xixi and several of Grayson's other friends that all worked with him at Bovard Auditorium came by for a visit. It is thrills to me that Grayson's old friends still come by to visit. They touch my heart deeply every time they walk through the doors. Here is a picture of all of us resplendent in Cardinal and Gold.

Fight On!

Brant

Day 656 – Grayson’s Journey

Dear family and friends

Today after going out for a sushi dinner, Regina said to Grayson, "You're my bud!" Then she asked him, "Who's your bud?", and Grayson answered, "Austin!"

Even after a serious brain injury, brothers are special. Forever.

Pax!

Brant

Day 655 – Grayson’s Journey

Dear family and friends

I came home late this evening after a meeting at church. Grayson was so affectionate when he saw me. His hugs are the best!

Some things make it worth it all.

Pax!

Brant