Update # 85

It is about 8pm on the last day of 2013,  what a year this has been !
Ethan and family would like to take a minute to thank all the people
who have offered prayers, support, and amazing events in our life.

As we move into 2014 we wish you all health, happiness, and a
closeness that only very good friendships and family can give.
Happy  New  Year  !

Ethan displaying some "New Year's"
cheer.  This young man amazes me
every day.

31  Dec.   2013

Update # 84

 On this Christmas morning 2013,  Ethan sends you all Holiday greetings
and good wishes for your New Year.

Update # 83

At about 5:30 pm a fire engine, a ladder truck,  a rescue truck,  and a chief's truck
came to our house with lights and sirens going.  On the truck was Santa,  and he
along with all the fire crews wanted to say  "Merry Christmas" to Ethan.

Ethan was totally surprised and happy with the entire visit.  Between each person
shaking his hand and wishing happy holidays,  to  all the lights,  and Santa - WOW  !

With all the people, events, prayers , and support shown to Ethan since this all
began back in March 2013,  our family is at a loss to express our thanks.  The
words "thank you" seem so little to all the wonderful experiences that have
come our way.  Ethan and family are truly blessed - THANK YOU !

Update # 82

First,  we had to sign off allowing them to take video
and photos in our home of the event.  Second,  we had
to sign off that we would not post or make public any
video / photos of the event.

                                     THEN

The Grinch arrived with gifts for a visit with Ethan !
The look on Ethan's face was beyond words, he was
so surprised.  They chatted, opened gifts, laughed,
discussed the "movie" and the Grinch read the story
to Ethan !  It was such a fantastic event for Ethan.

There were several emotional moments for all the
adults present.  Let me see  :
     Dad     Grandma     Papa     Uncle Keith     Mom
        3 Hospice folks     2 Universal Studios folks
                 1 make-up person     the Grinch
I cannot think of one thing that could have happened
for Ethan, at this time, that would have been better.  He
enjoys the story to be read to him, he enjoys watching
the video, and to meet the Grinch this way...

They (Universal) will in a couple of weeks, give us
copies of photos and an edited video for our keeping.
We just have to keep it private within the family.
A very small price to pay for such a wonderful
event.  And to the Hospice folks who set all this up,
and got it to happen in such a short time - THANK YOU !
THANK YOU !              THANK YOU ! 

Update # 81

Monday 16 December found Grandma and Papa making a trip
to L A at Ethan's request.  Beginning when our two boys were
born,  each Christmas we  deliver presents to those less
fortunate.  When Ethan joined us, he got right into the routine
with the rest of us.  This year as we went about mailing cards
and putting wrap on gifts Ethan would talk with us.  Due to his
speech, it took some time to get it understood, but he wanted
to give something to Ronald McDonald House and his  doctor
and friend Dr. Epstein at CHLA.  So we made the trip for him
and delivered our combined gifts.  Was a very nice and VERY
emotional visit.  As we were leaving CHLA,  Dr. Epstein
reached across her desk and picked up a card and asked us to
take it to Ethan.  It was a card, already addressed to Ethan,
what a surprise,  for her friend !

We continue to be blessed with prayers and support from so many.
It is truly great, and not just at this time of year, to be thought of
by all of you - THANK YOU !

A thought from Ethan and his
family to all of you.

December  2013

Update # 80

We are enjoying day 274 that we once did not think we would have.
As Ethan goes through this phase, he now is restricted to a thickened
liquid diet only.  His ability to swallow is almost gone.  He again
cannot walk or sit upright on his own, but tries too.  He spends most of
his days listening to stories (enjoys this a lot), watching TV / videos,
or playing with his toys.  The toy activities are sometimes stressful
as his hand movement and the toys do not always cooperate with what
his mind (still very good) wants to do.  The worst part is the speech.
He wants to communicate so bad and gets frustrated when we do not
understand.  We made some picture cards which help a lot, but using them
is a pain sometimes for all of us.

As we enjoy our time with Ethan, we are constantly reminded of the
great friends we have and the power of prayers.  Ethan has friends
from all over the world, and many other states.  He receives more mail
than anyone else at this address and likes to point that out to us.  Ethan
enjoys an older TV show called "Zorro", and thanks to Tom and Karen
we now have a book of Zorro adventures that we read .  And he still
talks about his big truck ride with Dave and Wendy - who are also
responsible for much of the mail and gifts we have.  Yesterday Ethan
received about 35 get well / happy holidays cards from same age
students at a school in Arizona. This morning two friends from teaching days
invited me out for dinner - get away for a bit.  So very nice, thanks Kim and
Deb, you two are so nice !  There really are some truly great people
out there and we are lucky to know some - THANK YOU !

Here are a couple of pictures, one year apart.  Amazing the difference
a year makes.  Again thank you all for your prayers and support.

Ethan hanging out on the floor
with his Uncle Keith.

12  Dec.  2013

Ethan and Dad (Kent) playing
in the back yard - good times.

11  Dec.  2012

Update # 79

Ethan is such a trooper !  He cannot walk or sit up on his own,
but he still tries.  His understandable speech is only about 25 %
now, but we have some great picture cards that help a lot.  I
hope when my time nears that I am as nice to those around me as
Ethan is.  He finds enjoyment in his life, laughs, and reminds us
of things he has done or enjoys.   We have reflective stars on his
bedroom ceiling and when the light goes off the stars shine ( for
a while ).  So we now have a light off / light on routine for a bit.
You can find happiness and joy if you look - but yes, sometimes
the looking is difficult.

Thank you again to our friends and family who continue to pray
and offer support.  Our ability to be there for / with Ethan is
only possible because of you.   Thank You !

Update # 78

Received this quote from a friend who is living in Israel.
It was part of a conversation about Ethan and how everyone
is holding up.

" Yesterday is history,  tomorrow is a mystery,  and today
is a gift;  that's why they call it the present. "

a quote from  Eleanor  Roosevelt

Update # 77

It has been a tiring week.  Ethan continues to battle, but it is
very tiring for him physically and emotionally.  His ability
to sit on his own is now becoming difficult and he is getting
frustrated with his inability to control his movements.  Add
that to his labor to speak clearly and you have an unhappy
Ethan.  We also notice that he is taking in less food and liquid
and this has us all worried (chew and swallow is very hard)

By his choice, he wants no one but Dad, or maybe Grandma
near him at night.  During the day he likes Dad always, then
Papa, Grandma, and Uncle Keith.  He is most at ease and
comfortable when very close to us as we read to him and
sometimes watch TV with him.

We continue to thank all of you for your prayers and support.
We could not have gotten this far without them !

Ethan resting on the couch under
his prayer blanket from Auntie Kay
and his two friends from
"Monsters U", Mike and Sully.


2  Dec.  2013