Dear family and friends
Grayson and I spent most of the day together again today as Regina worked at her office to try and get caught up on work. We had a fun day! First we did some chores (yes, the ski clothing was packed away before the 1st of August!), looked at Grayson's Facebook page, went for a walk (2500 steps!) and prepared dinner. A full day!
Grayson was a bit more alert and verbal today. Good news especially as we are reducing his last neuro medication.
Pax!
Brant
Dear family and friends,
Last week we mentioned that we added a new neurologist to our medical team. One of the questions I asked the doctor was why there are some days that Grayson's switch seems to be turned to slow. His explanation used the following illustration.
We all have mental/neurological reserves. If something is stressing us we utilize our reserves and still function quite well. Grayson, on the other hand, has little or no reserves. Consequently when something is stressing Grayson (e.g. inadequate sleep, dehydrated, infection, low blood pressure, overstimulation, even a change of routine) he has no reserve to draw on and the functioning slows or is impeded. Oversimplified, of course, however it reminds me to see if I can determine what might be stressing Grayson. He doesn't look stressed as you or I might look and he doesn't know what might be affecting him. He just slows down.
What's stressing you today? What reserves are depleted leaving you to handle challenges at less than full strength?
Get a good night's rest tonight. It's a good start.
Peace,
Regina
Dear family and friends,
Today was filled with sparklers.
Grayson has a hard time getting out of bed in the morning. I don't mean simply the "let me sleep a little longer" hard time we all experience rather he can't actually initiate getting himself out of bed. If I swing his feet over the edge of the bed and help him to a sitting position, he can be encouraged to stand up.
For the last few months, I have been letting him sleep a little longer and when I do go in to get him going in the morning, I stand next to his bed and ring a good old fashion alarm clock bell. The alarm clock was a gift from my sister to Grayson years ago and is an extra large version of an old fashion, round, black edged clock with a white face, large numbers and sweep hand. On top are two large bells with a striker between them. I manually keep ringing the bell, all the while talking him through the steps required to get him to a standing position. When he is fully vertical the ringing (mercifully) stops and I make a big deal of this reward. Today, the only verbal cue I gave him was "you know what to do". He got himself all the way out of bed without my having to put hands on him at all. This is a first.
This afternoon he accepted my challenge to "race" me down the sidewalk to a signpost. As we started off I suggested we jog. He actually jogged the entire way without giving up. Very unusual for him.
Later this afternoon he helped me take trash to the barrel in front of the house and he dropped a crumpled paper towel on the ground. Usually he leaves what he drops and walks away. Without any reminder, he bent down and picked it up, dropped it again, picked it up again and finally put it successfully into the trash barrel.
This evening he walked to his bedroom, sat down at his desk, turned on his monitor, grabbed the mouse, and tried entering his password to log onto his computer.
While getting ready for bed, he brushed his teeth for a full 40 seconds before quitting and handing the toothbrush to me to finish.
Each one of these is a spark of improvement. Each one represents hope to me that pathways may be rebuilding. Each one shows a spark of initiation blended with the memory value of repetition.
After my feeling a bit depressed yesterday, God found a way to lift me up today.
Thanks be to God and to each of you for the encouraging comments.
Regina
Dear family and friends,
Occasionally I wonder why we continue to keep this daily journal or if many are still reading it. It began as a way to communicate with all of you during the early days of Grayson's (and our) crisis. It has been a long time and the entries are not dramatic or particularly informative.
I do know that the discipline is good for us and encourages us each day to look for small signs of progress. The time spent writing the blog entry also allows an examination of conscience - whether we are becoming complacent or treating each day as an opportunity to stimulate and stretch Grayson's mental functioning. Complacency is certainly a seductively easier path.
This daily discipline also provides time for acknowledging gratitude for the many blessings hidden within the never ending tasks associated with Grayson's care. This has become a critical tool for me in my arsenal to battle burnout and impatience.
Additionally, I know that every comment knits my heart to yours and allows a communication channel for your support and prayers to flow in. For that I am so grateful.
I bid you goodnight and God's peace,
Regina
Dear family and friends
Today was a day of rest and relaxation! We spent the afternoon and evening at Rita and Richard's lounging around the pool and grilling a fabulous meal. It was a glorious afternoon – not too hot and plenty of sunshine. Grayson enjoyed himself sitting with his feet in the water (a bit chilly for him to get in the pool!) and time reading his comic books and listening to the conversations going on all around him. He does listen and he regularly laughs out loud when funny things are said.
We are so blessed to have Rita and Richard so close by and to have the ability to go spend an afternoon and evening there! What a day!
Pax!
Brant
Dear family and friends
Today we attended the wedding of a girl that we watch grow up into a beautiful woman. We first met Kirstyn when she and Grayson were in elementary school, although Kirstyn was three or four years ahead of Grayson. They were both in the church youth group together and participated in some awesome trips and adventures. Kirstyn eventually went off to USC to major in architecture. Grayson followed a few years later majoring in engineering. Kirstyn is active in our church and it is a pleasure to work with her as an adult. Grayson joined us as we attended the wedding this afternoon and it was a beautiful event. What a joy to see Kirstyn so happy with such a great guy. Grayson was well behaved during the wedding and was more attentive that I would have expected.
After dinner this evening Grayson and I continued our Harry Potter fest – tonight was The Order of the Phoenix. Two more discs to watch before we run out of Potter!
Pax!
Brant
Dear family and friends
Grayson was very alert today. All day long he was much more alert and active than normal. As an example, after dinner tonight, he got up from the table and went to the sink to wash his hands. My jaw about hit the floor because I can't remember the last time that he got up from the table and did that – unless it was before his injury. Awesome!
Pax!
Brant
Dear family and friends
Today was another day of alertness for Grayson.
When walking, Grayson usually moves at the speed of a teenager doing a chore – slower than molasses! Today Regina had him walking at a brisk pace – a nice and welcome change!
Grayson was extremely kind and loving again this evening when I put him to bed. He really is a sweet boy.
Pax!
Brant
Dear family and friends
Grayson woke up wide eyed and alert again today. There was lots of commotion around the house today as carpet was laid in Lauren's room first thing this morning. After that, she started moving the furniture back into her room from its temporary storage location in the hall – its home for the past 2 months. Most of the construction is over, but there will continue to be some additional disruptions as we aren't quite done yet! Grayson has been a champ dealing with the chaos – not the first choice for brain injury survivors. Routine is best for familiarity and comfort. But he has been dealing with the displaced furniture and belongings quite well while her room has been redone.
I was touched by Grayson's affection this evening. As he was getting ready to go to bed he came over and wrapped me in big hug with his long arms. He is so loving and sweet – just like a little boy.
Pax!
Brant
Dear family and friends
Grayson awoke a bit brighter than usual today – especially unusual because I woke him up an hour earlier than normal! We had one service at church today followed by our annual congregational meeting so we had to get to church by 9:30 instead of 11:00. With Grayson this is a challenge! Fortunately we were there with a bit if time to spare.
Grayson was amazingly good during the 2 hour annual meeting. I handed him an anthology of the "Get Fuzzy" cartoons and he was entertained for the entire time. I was not sure that it was possible!
The rest of the afternoon was errands, Regina to work, Grayson and I to home where I did some work in preparation for my upcoming week. A good end to the weekend!
Pax!
Brant
Dear family and friends
Today was a wonderful day! We all got to sleep in a bit, and I got to readjust to the Pacific Time Zone! Grayson was alert and fun all day. While Regina and Lauren were out shopping for window-treatment hardware for Lauren's bedroom, Grayson and I occupied ourselves with unpacking from my trip, watering plants, some home repairs, taking out the trash – the stuff that needs to get done.
After our chores we fired up his computer. Today I decided to try and tie one of the things he loves (the comic strip Zits) with some therapy. I found the website that carries the comic, and picked a date for the strip. He laughed, just as he normally does, his entire body writhing. No doubt here. When it's funny, he lets you know! Then I showed him the button to navigate to the next day's strip and had him click it. That is where the therapy comes in. He moved the mouse over to the spot, but had difficulty clicking the button while maintaining the cursor over the spot. He really had to work at it to accomplish it, but there was a reward at the end – another comic. He worked it longer than I thought he would before the reward wasn't worth the effort any longer. A new trick for the tool kit!
Tonight we went out to dinner at our favorite little Italian restaurant before seeing the final Harry Potter movie. It felt a little like reading the books – a great ending, but sorry to see the saga conclude. No more Hogwarts. Grayson was thoroughly entertained and loved the movie – who wouldn't!
This really was a wonderful day – brilliant, as Harry would say!
Pax!
Brant
Dear family and friends,
Grayson had his follow-up appointment today following last week's hospitalization. I continue to be impressed with his new cardiologist. Every time we meet with this doctor he educates us in another aspect of Grayson's condition and prepares us for possible future developments. Grayson is healing nicely and there have been no further sustained episodes of flutter or tachycardia. We will continue to transmit his cardiac activity weekly by way of telephone transmission directly from his implanted device. (Isn't technology wonderful?)
This afternoon Grayson seemed to wake up. He was bright eyed again and walked more quickly than he has in about a week. At one point today an upbeat dance-like song came on and I suggested he dance to the music. I started rocking out and he followed suit really getting into the motions. What a pleasant surprise and great exercise if I can get him to sustain it longer than 30 seconds or so.
Even though I got him up an hour and a half earlier than usual this morning, at nearly 11:00 pm he is wide-awake and happy. Go figure.
I am grateful for so many things today including the wonderful fact that Brant comes home tomorrow night.
Peace to you all,
Regina
Grayson is still quite non-verbal. He must be encouraged throughout the day to put his thoughts, feelings, and desires a word and then into a sentence. He will answer a direct question and will finish a sentence if I start it for him but I can't remember the last time he initiated a sentence.
At one point today Grayson did do something a little unusual. Grayson's appearance to an outsider reflects that he has some cognitive challenges. He walks a little stooped, with his neck extended forward, his hands frequently held at waist level in a mild claw posture. If I whisper a reminder to him to stand up straight, his posture straightens up and he holds his head up high. It only lasts a few seconds. Unless he is laughing or otherwise responding to something, his face is now naturally in a somewhat serious expression. He listens intently with a slightly furled forehead. Some might think it a little intimidating as if he is staring or menacing. If I remind him to smile, he breaks out in a wide, cheesy grin.
Today, we walked past an outdoor table where two women were talking over lunch. One of the women engaged Grayson's eye and gave him a smile. He smiled back and gave her a wave as we past them. I thought he recognized her from somewhere but he said no. This small moment really warmed my heart.
Moment by moment.
Peace,
Regina
Dear family and friends,
Today Grayson seems to have turned a small corner and is once again on the upside of the alertness curve. The head-tuck, nose-rub, head-scratch motion that accompanies the down days was noticeably reduced.
Today was also a rare treat for Grayson – he spent the entire afternoon with his sister Lauren while I was at my office and Brant was on a plane to Philadelphia.
Is there a meaningful connection between these two statements? God only knows.
Grace and peace to you all this summer's night.
Regina
Dear family and friends
Grayson had a slow day today. He woke up "thick" and he was still having difficulty at dinner. It was just one of those days, although with Grayson they are always more pronounced.
Grayson spent the afternoon with me as the girls were out raiding the Great Indoors – the store in California is closing so the discounts were worth checking out! Grayson and I did some chores around the house before I started packing for a trip to the east coast this week.
Pax!
Brant
