Day 989 – Grayson’s Journey

Dear family and friends,

This afternoon I took Grayson to have his teeth cleaned.

Bless our new dentist. He decided to clean Grayson's teeth himself rather than delegating the task to a hygienist. He is young, patient, encouraging and soft spoken. Just what Grayson needs.
But the adventure comes with a few challenges.

First, because of Grayson's heart condition, I must remember to give him his antibiotics an hour before his appointment. Then I need to get him to stay seated in the chair for an hour. He bites the instruments (luckily not the dentist today). His tongue continuously gets in the way and he frequently closes his mouth. He turns his head to look at other things in the office. He pokes at the various water and suction tubes and other instruments and every few minutes his hand slowly reaches up to try and stop the dentist.

With constant encouragement, reminders to open wide ("Ahhh") and holding his hand we managed to get through this simple procedure.

Now, however, we are trying to figure out how on earth we are going to get him to cooperate through time-consuming sealants and (gulp) a couple of fillings. His first fillings ever if I'm not mistaken.

Can't wait. (Sigh)

Have a wonderful evening – and don't forget to floss!

Peace,

Regina

Day 987 – Grayson’s Journey

Dear family and friends

Late night – early flight – short blog tonight!

Grayson continues on his up-cycle – was bright-eyed all day. We enjoyed watching the Olympics tonight with Austin, Xixi and Lauren.

Life is good!

Pax!

Brant

Day 986 – Grayson’s Journey

Dear family and friends

My plane landed at 6:00 AM this morning and I was home by 7:15. I’ll be home until 7:15 on Monday morning before heading out again. Weekends are precious!

This evening we enjoyed the use of my Father’s Day present from Austin and Xixi – a new picnic basket. We were their guests at the musical The Producers performed at the Hollywood Bowl. While I have fond memories of attending concerts at the Bowl with friends, I never thought I would see a musical staged there. What a fun evening! It was great to be back in that historic venue with good food and family.

Grayson had a blast this evening. He appears to be on the way up out of his low period. If endorphins help him to escape the low points, he sure had his fill of them this evening. He was just rolling with laughter during the musical. Before and after the show he walked with purpose to and from the car – another good sign that he is on his way “up”.

It has been a busy 18 hours since returning home today!

Pax!

Brant

Day 985 – Grayson’s Journey

Dear family and friends,

Well, it is 12:40 a.m. and Grayson has gotten up and set off his door alarm for the fifth time. He is wide awake…and mom is half asleep. Grayson was more alert and bright-eyed today. Perhaps that has something to do with his being so alert at this evening. We watched the opening ceremonies of the Olympic Games and thoroughly enjoyed the spectacular.

I can only hope Grayson stays in bed this time.

Brant just called me. He is on the plane about to take off, coming home for about 48 hours.

I treasure our weekends.

Peace,

Regina

Day 984 – Grayson’s Journey

Dear family and friends,

Some days just remind me of the 1989 Ron Howard movie with Steve Martin – "Parenthood"; particularly the scene where the grandmother describes her love of the roller coaster. (It makes more sense if you see the movie).

Grandma: You know, when I was nineteen, Grandpa took me on a roller coaster.

Gil: Oh?

Grandma: Up, down, up, down. Oh, what a ride!

Gil: What a great story. [Said quite sarcastically]

Grandma: I always wanted to go again. You know, it was just so interesting to me that a ride could make me so frightened, so scared, so sick, so excited, and so thrilled all together! Some didn't like it. They went on the merry-go-round. That just goes around. Nothing. I like the roller coaster. You get more out of it.

Today was like that. I started my day around 5:45, unloading the dishwasher, taking the trash out, and doing several loads of laundry. By 7:30 I was handling several work phone calls and emails, tending to urgencies that needed immediate attention. I decided to work from home since I hadn't even showered by the time Grayson's caregiver arrived. That turned out to be a good decision.

By 10:30, I heard a shout from downstairs that there was water pouring from the family room ceiling. After doing the usual of turning off water valves, positioning buckets and rags, soaking up the water from the carpeting, positioning drying fans and calling for repair service, I settled back to concentrate on work.

Three hours later, I found the kitchen swarming with ants.

An hour later, Brant called to tell me that my father was at the doctor's office for various tests for his heart condition and would return for more tests tomorrow.

The agency notified me that our caregiver needs to take off three days for a medical procedure.

Brant is due to arrive in town about 6:00 a.m. on Saturday morning and turn around and leave again on Monday morning for a week in Seattle.

Life takes everything you've got. Some days you just have to hold on tight and enjoy the ride.

It really helps to keep a good sense of humour.

Keep smiling,

Regina

Day 983 – Grayson’s Journey

Dear family and friends,

Grayson is still in a relatively non-verbal phase. The two-, three-, four-word sentences are gone and I am lucky to get one word answers – even if I ask for a restatement in a full sentence.

Earlier this week I mentioned that Grayson tried to bite, kick, and hit his caregiver when she tried to get him to stick with a task for more than a couple of minutes. It doesn't happen much anymore but for the first year after his injury Grayson exhibited a fair amount of these behaviors. Most frequently it was in response to someone pushing him to try a little harder or longer. Sometimes we witnessed it in response to caregivers who tried to use power or anger to control his behavior. He pushed back when he felt he was being overpowered.

We must remember that Grayson does not have much control or power over his life any more. Where once he was an eloquent speaker and writer with a rich vocabulary, now he doesn't have good command of more than basic verbal skills. He is betrayed by his body and his mind. What tools does he have at his disposal to respond to a challenge? Self control? Goal setting? Delayed gratification? Understanding consequences? These cognitive abilities are severely diminished if not completely gone. He is at the mercy of those around him to be sensitive, supportive, and patiently keep him out of trouble while encouraging him daily to stretch his abilities.

When he does respond with anger or in self-defense, it is quite easy to redirect inappropriate actions. A step backward out of harm's way. A statement of the (no-hitting, biting, kicking) rule. An immediate acknowledgment of his frustration followed by a statement that we know he doesn't want to hurt anyone. Then a request to use words instead to tell us what he wants (demonstrating appropriate words). This is why I have him practice saying "stop" when he doesn't like what someone is doing. Sound familiar? Anyone who has had young children will recognize the offending behavior as well as the redirecting coaching. It is exactly what we did with our two- and three-year olds.

By the way, Grayson usually follows an episode like that with wanting to give us a big hug.

He is still a loving, little boy inside who wants to please.

With gratitude for our children to our loving, heavenly Father.

Peace,

Regina

Day 982 – Grayson’s Journey

Dear family and friends,

Grayson was non-verbal and very fidgety today. He couldn't decide whether he wanted to sit or walk around. He had a hard time staying seated during dinner and couldn't tell me where he wanted to go when he did stand up.

By the time I finally got him brushed and tucked into bed, I was ready to collapse in bed myself.

May your sleep be restful and healing.

Peace,

Regina