Day 538 – Grayson’s Journey

Dear family and friends

It's Saturday! Today we all escaped from the harsh reality that the world gives us sometimes and spent some time enjoying the beautiful day and doing some projects that needed accomplishing. We had lunch with Austin and Xixi and for a brief time celebrated her belated birthday.

I feel compelled to say that after our discharge conference at CNS on Friday there was a minor celebration of our transition to home care. Good wishes were shared all around and we felt some closure after our time there.

We are taking a few days off of making plans and are just going to celebrate life this weekend – especially that of Regina who exemplifies all of the best in mothers. It is why we celebrate Mother's Day tomorrow.

Pax!

Brant

Day 537 – Grayson’s Journey

Dear family and friends,

Yesterday Brant spoke of the end of one chapter in our journey. I could feel his uneasiness about the uncertainty of the next steps.

I had mixed feelings about the changes but I was also encouraged because we had located a loving caregiver that Grayson seemed to respond well to. We invested several weeks paying her to attend Grayson's therapy sessions so she could observe techniques and become more familiar with the rhythms of his on and off days. Brant and I both really liked her and were grateful that we could have a loving individual care for Grayson at least a couple of days a week. This would allow me to return to my office during normal business hours on those days – with fewer late evenings and weekends. We would also save a fortune in mileage driving to the clinic. I was looking forward in many ways to the new rhythm of our lives.

Late this afternoon, we got a message that she changed her mind and is no longer available to us. No warning, no explanation. Needless to say, we are extremely disappointed. Yes, we can start interviewing again. Yes, there are other caring individuals out there. We will, however, not have the opportunity for a new individual to attend therapy sessions with Grayson and learn from observing professionals interact with him. 

Some things are hard to understand. They can come out of the blue and hit you in the stomach. That's how we feel this evening.

We will shake off our disappointment, our confusion, and yes, our anger over a wasted investment. There is still a plan for our lives. It will unfold in due time as it always does.

"I lift up my eyes to the hills – where does my help come from? My help comes from the Lord the Maker of heaven and earth." (Psalm 121:1-2)

God's grace and peace to each of you.

Regina

Day 536 – Grayson’s Journey

Dear family and friends

Today was another alert day for Grayson. As an example, Regina asked him to reach into the car and pick up some trash when they arrived home this evening. He did so then he proceeded to take it to the trash can without prompting. That is unusual for Grayson, but wonderful! Thinking to the next step and executing without prompting is a huge win! This has been several days of alertness in a row – almost every day for the past two weeks with the exception of Sunday morning. I wonder what is going on in there.

Today was Grayson's last day at CNS in Encino. Unlike his departure from Bakersfield, there was no fanfare, no farewell, no celebration – not even a "good luck". We simply went home after cleaning out his locker and getting our parking ticket validated. We will return for a discharge conference tomorrow, but I have the nagging feeling that they are relieved that we are leaving. Anoxia is just too complex an injury for this facility and Grayson is too injured for them to deal with effectively.

In 10 days we will hit the 18 month mark since the incident that put us in this predicament. We are now at the place I was told we would arrive at very early on – on our own (from a resource point of view and without the financial benefit of insurance) to provide the best care and therapeutic environment we can to maximize Grayson's quality of life. We will do our best as long as we are able.

Pax!

Brant

Day 535 – Grayson’s Journey

Dear family and friends

Grayson woke up bright eyed today, and he ended the day the same way!

Grayson had his penultimate day at the clinic today. Tomorrow will be his final day at CNS Encino. For Grayson there appears to be little fanfare compared to his leaving CNS in Bakersfield last September. His time there is just coming to an end.

Grayson and I did some errands this evening after he came home, then we did chores. He has been more alert since our ski trip, though I'm hesitant to correlate the two. Let's just say that he has had a pretty good two weeks!

Pax!

Brant

Day 534 – Grayson’s Journey

Dear family and friends

Today was back to normal for Grayson, but "normal" is about to change again. This is the last week of therapy for Grayson. We were told that this week would be the end of the three-a-week therapy days before reevaluation in 6 months.

Grayson woke up bright eyed this morning. Sarah had him ready to go to the clinic well before Regina arrived home to take him. When Grayson returned this evening he helped me with chores before getting dinner ready.

A normal day before things change again!

Pax!

Brant

Day 533 – Grayson’s Journey

Dear family and friends

As promised, I will give you an update on Grayson from Sunday as well as today.

On Sunday, Grayson woke up very groggy. He was slow in the room and his slowness extended into his first lesson in the morning. After trying several things, Grayson finally started to act alert just before lunch. The secret was giving him some downhill speed to keep him alert!

His afternoon yesterday was much better. He actually had three instructors Sunday afternoon – a father-daughter pair and an assistant. Grayson worked very well with them, especially the 15 year-old daughter. She is a member of the local race team and a ski instructor that has been volunteering time at Disabled Sports Eastern Sierras (DSES). What a great kid! Here is a shot of the parade going down the mountain working on turns!

We finished our last lesson of the season, said our good-byes at DSES, then went back to the inn to change clothes and finish packing. We did that in short order and were on our way home well before 6:00 PM. After an uneventful drive we arrived home at 11:30 PM.

Today Grayson got to sleep in until his normal 9:00 AM time – quite a change from his 7:00 AM vacation-time wake up call. After his morning routine we all piled into the car and drove to the USC Health Sciences campus for a follow-up exam with his cardiologist. There we had some minor med changes and we scheduled a procedure for June. That procedure should eliminate one of his meds going forward and eliminate the case of his arrhythmias.

It was over 90° here today – quite a change from Mammoth! It suddenly feels like summer!

Pax!

Brant

Day 532 – Grayson’s Journey

Dear family and friends

Grayson and arrived home safe and sound, but tired, just before midnight. We had a full day of skiing before our 6 hour drive home. I'm going to bed and tomorrow I'll update you on the last day of our trip to Mammoth Mountain.

Pax!

Brant