Day 592 – Grayson’s Journey

Dear family and friends

Grayson was wide-eyed and alert today. He was also wound a bit tight! He couldn't sit still for more than a few minutes – sort of like a second grader. Poor Regina was totally unable to focus on anything. All she could think about as he would jump up and walk out of the room is what trouble he would get himself into.

All day long he carried his birthday card from his aunt and uncle, Rita and Richard. The card played the Indiana Jones theme song every time he opened it. He must have opened it 500 times today – watching TV, reading his book, walking around. At one point he walked up right behind Regina who was concentrating on something important and opened it. She practically jumped out of her skin!

Pax!

Brant

Day 591 – Grayson’s Journey

Dear family and friends

Grayson had a good and alert day today. This evening before dinner, Grayson and I took a walk – our usual one mile round trip up the street to the golf course and back. Grayson generally walks at a snail's pace while I walk circles around him. Tonight he put his hand on my shoulder for about half of the walk and it kept him moving at my pace – a brisk walk. So I consider tonight a success!

Keeping Grayson physically active is always a challenge, however it is also critical to his long term health. This is one of the reasons that I love taking him skiing – he enjoys it and he is physically active. I have fun too!

We returned home to a hot shower then we grilled a tri-tip roast for dinner. Beef is becoming rarer (no pun intended) in our diet, so we don't waste it on hamburgers!

Pax!

Brant

Day 590 – Grayson’s Journey

Dear family and friends,

Brant arrived home this evening about 10:30 after a meeting at church and we were having our first real conversation of the day. In the first 15 minutes our train of thought was broken three times by the sound the Grayson's door alarm going off. Some days are just like that.

For the most part Grayson had a very alert and responsive day. His eyes were bright and his answers were on target. Even at breakfast, normally a time of Grayson slowly climbing out of a fog, his reactions were quicker than usual. For example, usually when he eats a bowl of cereal he chases the bowl as he slides it around the counter. I remind him to use his other hand to hold the bowl steady. He makes a feeble attempt at holding his opposite hand on or near the bowl – rarely closing his fingers on the edge. Today, he not only held the bowl but when it did slip off the counter and onto his lap, he caught it before any of it spilled out. I was shocked – and pleased at his reaction.

We don't know why some days are better than others or why some weeks are better than others. We take each day as it comes and try to make the most of it. Of course our hope is that someday the better days will be the majority and that he will be able to function happily in a group home after we are gone.

In the meantime, we are grateful for any kind of day, as long as they keep coming.

Peace to you this beautiful summer evening.

Regina

Day 589 – Grayson’s Journey

Dear family and friends

Grayson woke up bright-eyed today! From the moment he got out of bed until the moment he laid back down tonight he was alert. This evening Grayson and I did some chores before making dinner – a salad topped off with left-over grilled salmon from last night. We finished out night with a little TV before showering him up and heading him off to bed.

Water – the human body needs it to survive. Grayson just hates to drink more than a sip of liquid anymore. We find ourselves pushing liquid during the winter in Mammoth, but we really have to push it now during the summer. One of the challenges that we have when the weather warms up, and it is now getting pretty warm, is keeping Grayson sufficiently hydrated. This is one more thing that I never thought I would have to worry about!

Pax!

Brant

Day 588 – Grayson’s Journey

Dear family and friends

26 years ago today Grayson was born. It was an exciting and terrifying day – exciting because of the new baby, and terrifying because 12 hours after he was born we were told he had a congenital heart defect that was "not compatible with life". Fortunately the initial diagnosis was incorrect, but we vowed to take care of this young life as long as necessary. Who would have guessed that we would still be at it after 26 years!

Grayson still makes us smile, but in ways quite different than 25 years ago, and also different than 25 months ago. We are blessed.

Pax!

Brant

Day 587 – Grayson’s Journey

Dear family and friends

26 years ago tonight, Brant and I had dinner at the Holiday Inn in Culver City with old friends, Angie and Sam. Angie was (is) a dear friend who sang with me in college and church choir. I was 9 months + 2 weeks pregnant. Over dinner we discussed baby names since we still had not finalized our name choice for "Curly Joe" (obviously he was two weeks overdue already). Angie laughed at us and said he was waiting until we made our decision regarding his name. We decided on the name "Grayson" that night and he was born about nine hours later.

Our vigil that evening was filled with uncertainty and joy and was shared with friends – as is every day currently.

Thank you, friends, for sharing our journey.

With gratitude for the love of friends,

Regina

Day 586 – Grayson’s Journey

Dear family and friends

As cycles go, Grayson seems to have been on a downward cycle for the past couple of days. If he were a light bulb, he would have days of bright light, and days of dim light. His internal bulb has been dimming for the past few days. We have been through enough of these cycles to know that his light will shine brighter in a week or so. This is just how it is.

Construction continues in Lauren's room and the laundry room. We are approaching completion – the paint went on the walls this week. All that remains is flooring, cabinetry and closet doors. A few more weeks of living in this construction zone before putting everything back in order!

Pax!

Brant

Day 585 – Grayson’s Journey

Dear family and friends,

Keep Watch.

Today Grayson and I spent many hours together that looked nearly identical to hours on other days. The routines of waking, washing, brushing, dressing, room straightening, meal preparation, eating, and clean up are intentionally quite similar. The mantra of repetition, repetition, repetition plays constantly in the background of our lives now.

The days are also, as you can imagine in our family, broken up with lots of laughter and affection. Today was no different as we "chatted" and "sang" and worked. This afternoon while Grayson and I drove to Costco, I had him practice shouting. His voice is now quite soft so this was an exercise in breathing deeply and supporting his tone better. We walked a great deal and had plenty of up and down stairs practice. Grayson is so woven into the routine of our lives that we are firmly settling into "new normal".

This new normal is not, however, without a heightened sense of vigilance. Grayson must constantly be monitored for his safety. For example, we cut food into small pieces since he has little or no impulse control. He invariably loads his mouth to overfull and risks choking. Even turning away to engage another family member in conversation is a little unsettling to me. I have no confidence that if he took a misstep on a stair he would be able to catch himself. We don't leave medications in sight, leave him by a hot stove, or serve him overly hot food. Even when we remind him to check the temperature of his food, he tests the first bite and then starts shoving in the food anyway – immediately followed by the wide-eyed look of panic that his mouth is burning.

Just as with a toddler, we can't turn our backs. Yet there are times when it is easy to look at this nearly 26 year old and make false assumptions. Today I had a moment of panic.

As I mentioned Grayson and I were at Costco. We pushed an overloaded cart of jumbo sized everything to the van and managed to load it all in the back. I walked Grayson to the passenger side door, saw him safely inside, strapped in his seat belt with the windows down. I told him to stay put, walked the mere 20 feet to the cart return and walked back to the van (which was clearly in my sight). When I opened the van door, my heart froze. There was Grayson with an opened package of a sample that had been handed to him while we walked around Costco. I knew it had been dropped into the bag he always carries whenever we go out. This was not a chocolate, a cup of chips or an energy bar sample. No, this was an automatic dishwasher detergent Powerball tablet – and here it was completely unwrapped like an after dinner mint, crumbling in his hands. How many samples were in the package? "DO NOT ingest. DO NOT get in eyes. Call Poison Control Center immediately." After a quick, thorough check of his mouth, face, hands and the packaging, and a second and third check of his mouth, I started to breathe again. All four tablets were still there. I cleaned the residue from hands and said a prayer of thanks. Keep Watch has additional meanings in our family these days.

"Therefore keep watch, because you do not know on what day your Lord will come." Matthew 24:42

Grace and peace (and vigilance) to each of you,

Regina

Day 584 – Grayson’s Journey

Dear family and friends

Grayson was alert today.

Regina's highlight of the day was one of memory. After getting him up this morning and doing their daily routine of marking the day off on the calendar, they observed that today was Wednesday. She quizzed him on it again a few minutes later. After breakfast, perhaps 30 minutes later still, she asked him what day of the week it was and Grayson answered, "Wednesday".

How cool is that!

Pax!

Brant

Day 583 – Grayson’s Journey

Dear family and friends

Grayson had a good day today.

It is late, so I'll just share that Grayson spent most of the day running errands with Regina. More tomorrow!

Pax!

Brant

Day 582 – Grayson’s Journey

Dear family and friends

Back-to-work Monday!

Grayson had a very slow start today. The good news is that by the end of the day he was not only firing on all cylinders, but accelerating!

After work Grayson and I went to the grocery to do the shopping that didn’t get done yesterday! He was most helpful at the store and carrying the goods upstairs and putting them away at home.

Grayson helped me to prepare dinner tonight, gathering all of the things I needed out of the refrigerator and other places. As always we had fun with the work and the rewards are always edible!

Pax!

Brant

Day 581 - Grayson's Journey

Dear family and friends

Today was a full and wonderful day! We started out at church to celebrate Holy Trinity – perhaps the feast day most difficult to understand. Today there was also a baptism and the blessing of high school graduates – both emotional events. After church there was a well attended Father’s Day BBQ. By the time we left church at 2:00 the day was already pretty full of love, emotion and blessings!

This evening, Austin and Xixi joined us for dinner at Clancy’s Crab Broiler. There we enjoyed great company and great food. Among the thoughtful gifts I received was a card from Grayson. I was particularly impressed with it because he addressed and signed the card himself. This is the first time that Grayson has written something even vaguely legible since his incident exactly 19 months ago.

I leave you with a picture of the boys and me at dinner tonight.

Pax!

Brant

Day 580 – Grayson’s Journey

Dear family and friends

Today was "sleep-in Saturday" for all of us but Regina. As always, she was up with the chickens while the rest of the house slept.

We selected carpet for Lauren's room today (pending her approval, of course) before heading to lunch. When we returned home, Regina called her father to work tax issues while Grayson helped me do the annual cleaning and overhaul of the BBQ. We worked at it for about three hours. It looks brand new, and all of the internal parts are in as good an order as the day they were delivered three years ago.

Grayson brought tools, took out trash, carried bags and generally was available to do anything required in the annual BBQ cleaning process. Tonight we used the last of the chicken I grilled on Wednesday to toss in a salad with several other interesting (and available) vegetables for dinner. Grayson provided little help preparing the meal, but he was a hearty participant in the consumption!

Pax!

Brant

Day 579 – Grayson’s Journey

Dear family and friends

Today Grayson bounced out his period of fogginess that he has been under for the past few days. He was alert, calm, observant and aware of things going on around him. Tonight we went to dinner at our favorite little Italian place in La Cañada. Normally I have a comic book in his bag to keep him occupied while Regina and I have a more leisurely dinner. Tonight Grayson was calm and just sat through the entire meal – an unusual state!

After dinner we went next door and (finally) saw Pirates of the Caribbean – On Stranger Tides. Ar, matee. 'Twas a funny film they be showin' us. Grayson loved it, he did!

A great day all around!

Pax!

Brant

Day 578 – Grayson’s Journey

Dear family and friends

Grayson was pretty quiet today. After work I took him on our regular walk. He was slower than usual, and I found myself looping back a lot to encourage him to keep going forward at anything above a snail's pace.

I had a follow-up appointment with my cardiologist yesterday and my internist today. My numbers all looking very good – A1C, cholesterol, and blood pressure. This goodness is probably due to a combined effort of weight loss, exercise and meds. With my blood sugar numbers today you would never know I had diabetes! I just wish there weren't so many meds (I picked up another today). Unfortunately the risk factors of my diabetes contributing to cardiac issues are too great.

Pax!

Brant

Day 577 – Grayson’s Journey

Dear family and friends

Grayson's cold is all but gone. Today Grayson was a bit agitated – not angry, just distracted like there was a lot of noise in his head. He scratched his head over and over today, and would not sit down for more than a few minutes before suddenly leaping up. When asked where he was going, his reply was usually, "I don't know."

Regina spent several hours working with Grayson on his therapeutic home program (THP). They did a lot of cognitive activity and some physical strength activity.

Grayson helped me grill chicken for dinner for a bit, but then he got caught up in his comic books. At least he was happy!

Pax!

Brant

Day 576 – Grayson’s Journey

Dear family and friends

Grayson's cold seems to have finally run its course – finally!

Grayson and I – the cardiac kids – took a walk this evening. We walked our usual course uphill to the golf course and back – a one mile trip for Grayson, and about a mile and a half for me. The reason it is longer for me is that I loop back to Grayson throughout the entire walk. Over the course he just doesn't keep up the pace and needs encouragement to keep going. So I loop back to him and he walks faster, and I get in more exercise!

We had a relaxed evening tonight and a movie. Both Regina and I fell asleep on the couch. Grayson enjoyed the movie. Everyone was happy!

Pax!

Brant

Day 575 – Grayson’s Journey

Dear family and friends

Grayson's cold finally seems to be on the wane. Today he was less congested than he has been in days. Thank goodness! Now Regina seems to be coming down with it. Great – something that the whole family can share.

This evening Grayson and I did the grocery shopping for the week. He was helpful as always as my grocery cart driver. He is pretty good about navigating through the store. Only rarely does he get stuck, and that is usually when he gets too close to the shelves and gets the cart jammed up against them.

Grayson was tired tonight and went down to sleep and never budged. Sweet dreams!

Pax!

Brant

Day 574 – Grayson’s Journey

Dear family and friends

Grayson went church with us this Pentecost Sunday. It was a wonderful morning hearing the faith statements of the young confirmands – the powerful yet simple words of young teenagers sharing their walk with God. It always pleases me to see that the church is in good hands in the future as our youth steps up to take our place.

The small children of the congregation shared the Pentecost message with us this morning. They came forward and sang "Jesus Loves Me" in four languages at once – Spanish, Armenian, Czech and Japanese. It was, of course, gibberish – and that was the point. Later on the congregation joined them in singing the song in English. Grayson started singing right along with them. Regina and I became so emotional that we were unable to continue singing. How wonderful to hear Grayson sing again without prompting. How also I wish things were different.

Point 2 of Pastor Sarah's message today was that God will never abandon us, even in the midst of terrible trials – and, as she told the confirmands, you will have terrible trials. Today it felt as if she was talking directly to us.

Pax!

Brant

Day 573 – Grayson’s Journey

Dear family and friends

Saturday! Sleep in day for the entire family. We decided that today was all about dreaming and planning – and picking carpet for Lauren's room.

Lauren's room is under construction, but almost finished. Paint goes on the wall next week, and the only thing left to select is the flooring. She decided on carpet so we were on a quest today to see what we could find. While we were at it we started looking at items for our master bath that is the part of the next, and final, element of our update that has been underway for 8 years. Nothing like living in a construction zone for a decade!

Grayson was a trooper spending about 6 hours walking around bathtubs, carpet samples, flooring, fixtures, hardware and all of the rest. He did have lunch and dinner with great enthusiasm! He is still bothered by his cold, and we are grateful that we have postponed his cardiac procedure. When we arrived home this evening he went straight to bed and never budged. That boy was tired!

We ended the day happy rested AND with a carpet selection that we think is perfect. Blessings come in forms great and small!

Pax!

Brant

Day 572 – Grayson’s Journey

Dear family and friends

Today was a busy day for both Regina and I. Late this afternoon we had a conversation with Grayson's cardiologist. Several factors contributed to a decision to postpone Grayson's cardiac procedure scheduled for next week. A few more weeks will allow him to get over his cold and runny nose, and it will also allow the team to prepare for Grayson's recovery. This is all good!

The three of us had a late sushi dinner with Rita and Richard this evening. The company was wonderful and the food was divine! Now to go hop in bed and not set an alarm clock!

Woo hoo!

Pax!

Brant

Day 571 – Grayson’s Journey

Dear family and friends

Grayson is still fighting his cold, but it is considerably better than last earlier in the week. He was again way more verbal than he has been for quite a while. He had a bit of a relaxed day as Regina and I were consumed with activity most of the day.

As the day draws near, Regina and I are getting nervous about the cardiac catheterization that Grayson is scheduled to have next week. Based on my recent unplanned experience in the cath lab last Saturday, I contacted his cardiologist to start the conversation on strategies to keep Grayson still during and after the procedure. Grayson will just not be able to comply with a request to lie flat on his back and keep his leg straight for four to six hours. I could barely do it and I don't have the cognitive challenges that Grayson has.

We don't face challenges – we have opportunities!

Pax!

Brant

Day 570 – Grayson’s Journey

Dear family and friends

Today was another day of "alert Grayson". Today we were particularly impressed by his speaking attempts. If you have heard Grayson recently, he is not very understandable when he does talk. (The use of consonants is minimal with Grayson.) I suspect that he knows this and therefore resorts to non-verbal methods of communicating. Regina does not let him get away with this and makes him put in the effort to verbalize what he wants.

Today on four separate occasions he responded to Regina with voluntary multi-word sentences without being cued. I was there for the last one. Regina asked him, "Grayson, what time is it?" he responded, "Time for me to go to bed." I couldn't believe it – those 7 words just came out, and they were understandable!

Pretty cool!

Pax!

Brant

Day 569 – Grayson’s Journey

Dear family and friends

Grayson's cold is starting to get a bit better. He was quite alert again, and he and Regina ran several chores today. As always, he was a sweet companion on her activities around town.

Today Grayson showed some remarkable task memory. With only a cue to use the restroom, he accomplished the entire task himself – a very rare thing indeed. When getting ready for bed, Regina asked him to take his pants off. He proceeded to remove his sandals and put them in the closet. He completely removed his pants and put them in the laundry hamper all without being reminded of the next step. Frequently he gets his pants down around his ankles and can't remember how to get his feet out. Today was quite different!

All of this may not sound very exciting, but it is showing us that for one day, he is able to accomplish some tasks start to finish by himself. Tomorrow is a new day and he may not be able to replicate this feat, but the repetition he gets daily on these things may actually be translating itself into new memories. For us this is very exciting indeed!

Pax!

Brant

Day 568 – Grayson’s Journey

Dear family and friends

Today was a laid back day for Grayson and me. I took the day (mostly) off of work and that allowed us both to sleep in. Regina took the opportunity to spend about 12 hours at her office!

Grayson and I did a few light chores (no heavy lifting or physical activity for a few days), and ran to the pharmacy to pick up some new meds for me (yes I am cleared to drive). On a side note, I started the year out with zero meds. I am now starting to rival Grayson with the number of pills I pop every day! Fortunately some are "temporary" – 6 to 12 months.

Grayson continues to suffer with his cold, but it appears that it may just be starting to wane. He is pretty miserable with his runny nose. His impulsive eating is also an issue, as unsupervised he will fill his mouth with food, then not be able to breathe because his nose is so congested. An eagle eye needs to be kept on this Eagle Scout to make sure he doesn't choke.

Grayson remains alert and this has been the case for about two weeks. How cool is that!

Pax!

Brant

Day 567 – Grayson’s Journey

Dear family and friends

I'm home!

I know that this is supposed to be a blog about Grayson's journey, but we've had a bit of a detour in the blog, and in our lives, the past three days. There is nothing remarkable about me today, and that is a good thing! The wheels of the hospital machine move slowly, but the discharge was actually accomplished at 3:15 PM. That was the only thing on the agenda for me at the hospital today, but it just about took the entire day to accomplish! (I know that this will not surprise anyone that has ever spent any time around a hospital!) I am now at home and trying to follow my instructions not to "overdo it".

Grayson is still suffering with his cold. His fever is gone, but he is really congested. Tonight he kept getting out of bed and I was unsure how long it would take him to wind down and go to sleep. Fortunately the door alarm stopped going off about 20 minutes ago, so I think that he is down for the night.

We are all home together again. I am so thankful for Regina for holding things together at home while watching out and caring for me at the hospital. This was not the birthday weekend for her that either of us was expecting to enjoy. But we are grateful for the detour that the weekend brought us.

Pax!

Brant

Day 566 – Grayson’s Journey

Dear family and friends,

Today was a day for us to be grateful for pain.

Brant's debilitating pain on Friday morning could not be ignored. Because of the pain he was forced to take action. The two narrowed areas of his left main artery were discovered and opened with a single stent. Because he took action, Brant averted what inevitably would have been a more devastating outcome.

It was painful for Brant to wake up to pain. It was painful for me to watch my sweet husband brought low by his pain. It was painful to wait for the results of each test. It was painful to try to sleep last night still not knowing the cause. And I will thank God for the rest of my life for that pain.

Without the pain, he would not have been forced to take action. Without the pain of the uncertainty, we would not have recognized our gratitude for diagnostic tests and intervention medicine. If the pain had been mild or merely uncomfortable, it would have been easy to delay action, ignore the pain or rationalize the cause as from some other source. Waiting would have allowed everything to get worse.

I suppose it is that way with many things in life – not just physical pain. If something is uncomfortable or painful, we are faced with a decision. We can ignore it, try to avoid it and resent its intrusion. Or we can dig for the cause, take corrective action, and then make better decisions in the future.

Brant comes home tomorrow after only 2 ½ days in the hospital with better blood flow to his heart muscle. We both come home with hearts filled with gratitude for a weekend filled with pain and cancelled plans.

As for Grayson, he spent the day with Austin and Xixi – wandering around the mall, going to the library, eating Thai food and playing Kinect games. Here is a picture of the brothers in the middle of a Double Jump.

Thank you, Lord for pain.

Regina

Day 565 – Grayson’s Journey

Dear family and friends,

You never know what each day will bring.

This morning Brant and I planned to drive up north to see dear friends for the weekend. Rita, Austin and Xixi agreed to share the weekend with Grayson to allow us this weekend getaway. At 5:45 a.m. Brant was awakened with severe back and chest pains, sweating, and rapid pulse. By 6:20 he was in an ambulance headed to the hospital.

After a frightening day of tests, they have ruled out some of the most frightening scenarios. No aneurism, dissection, heart attack, or embolism. The pain has been controlled and Brant is resting comfortably. Tomorrow he will have more tests, including a Lexiscan Stress Test to determine the blood supply to the heart muscle.

Throughout all of this, Brant continues to have his usual sense of humor and charm.

When I came home late tonight to allow Rita to go home, I found Grayson with a fever of 99.5 and a nasty head cold. He is miserable and sweet at the same time – though he is finding it hard to sleep right now.

The day and weekend we had planned? Not at all! Is there much to be thankful for? A resounding YES!

"Let everything that has breath praise the Lord. Praise the Lord." Psalm 150:6

Day 564 – Grayson’s Journey

Dear family and friends

Today was another alert day for Grayson. This is several in a row strung together and that is good news indeed.

Tonight Regina and I went to Salem Lutheran to help some parents get a Cub Scout pack organized again. It was a wonderful group of concerned parents and I am confident that with a little encouragement and support they will do just fine.

At the meeting tonight, I had a little difficulty (emotionally) telling the story about my decision to become a Cub Scout Leader. It is a story about 2^nd grade Grayson excitedly bringing home a flyer about a Cub Scout program, and how he wanted to join. Later that week we attended an information meeting together. While listening to the speaker I looked over at Grayson. As I gazed at this beautiful 8 year-old boy, I realized that I had blinked and he had gone from infant to 8. If I blinked again he would be 16 and I would lose those precious opportunities to be together. I raised my hand to volunteer and never regretted it for a moment. For the next 12 years our family participated in Scouting to the fullest. Two Eagle Scouts later I will tell anyone who asks, that this was the 2^nd best decision of my life. The best decision in my life was asking Regina to marry me.

Speaking of Regina, June 3^rd is a milestone birthday for her. I offer prayers of thanksgiving for all of the lives that she continues to touch just by walking on this planet. I am humbled to be called her husband.

Pax!

Brant

Day 563 – Grayson’s Journey

Dear family and friends

Grayson was alert again today. He and Regina ran a number of errands today while construction activity continued at home. Grayson, who is usually bothered by noise, has coped very well with the sounds and disruption of the current construction activity. With some luck, we may get Lauren's room back together before she returns home in a few weeks.

There are a number of things that Grayson has seemed to master and no longer require cues. One of these is the seat belt – now he sits in the car then buckles up. This may seem rather mundane, but Grayson has required a reminder to do this for as long as we have been taking him out post-injury. Some activities are starting to stick – perhaps repetition is the key. Whatever the reason, the outcome is good!

Pax!

Brant