Day 807 – Grayson’s Journey

Dear family and friends,

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

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

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

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

Grace and peace,

Regina

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

Day 806 – Grayson’s Journey

Dear family and friends,

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

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

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

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

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

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

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

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

Regina

Day 805 – Grayson’s Journey

Dear family and friends

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

Off to bed for a short while!

Pax!

Brant

Day 804 – Grayson’s Journey

Dear family and friends

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

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

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

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

Pax!

Brant

Day 803 – Grayson’s Journey

Dear family and friends

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

Pax!

Brant

Day 802 – Grayson’s Journey

Dear family and friends

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

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

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

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

Pax!

Brant

Day 801 – Grayson’s Journey

Dear family and friends

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

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

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

Pax!

Brant