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
