Update # 89

Today has been a really impressive day for Ethan.  Dr. Mall
from hospice stopped by for a visit.  He gave Ethan a general
exam and asked him to do some physical activities.  He knew
his left / right and was able to move each arm and leg when
requested correctly.  His overall strength was good and his
ear for humor was great.  Dr. Mall is very happy with how Ethan
is doing - surprised is the word I use.  Great morning - even
if a bit tiring.

Later in the morning Dr. Epstein from CHLA called to check on her
friend.  She is really happy / surprised with Ethan's attitude and
current physical abilities.  She made us feel real good when she
talked about care (physical and emotional) that Ethan is getting.
We hope (if Ethan's condition allows) to make a visit to CHLA in
the near future.  He sees pictures of staff there and calls / texts from
them that he asks about them on his own often.

Ethan also got mail !  One was a package from a 12 yr. old girl
living in Minn. named Emersyn.  She has a program called
"Cards for Kids".  She heard about Ethan and sent him a card
and a stuffed bear that is about the same size as Ethan !  A very
special young lady !  And today he received a "wolf" post
card from Tom and Karen.  He posted it right next to his raccoon
postcard - THANKS.

Thanks to all for your continued support and prayers - they mean
a great deal to all of us.  Today is 319 days - a miracle !

 Ethan on an outing to Tom's Farm
on Jan. 11th.

Update # 88

Ethan continues to surprise all and have a nice day.  He has his moments
as we all do, but he has a routine that is working for him.  Hope it lasts
as long as he wants it to.

Ethan received two phone calls ( text messages ) in recent days.  Both
were from CHLA, staff members that had worked with Ethan when
he was an inpatient.  Just checking on him and sending along prayers
and good wishes.  The staff at CHLA totally impress me with their
continued support and caring.  They have to be the best group that
this family has ever had contact with !

Being with Ethan is a full time job, not that we would have it any other
way.  But you sure discover how age (ours) gets you at the close of a day.
I should have been nicer to myself in my youth - naw - I'd still be tired.
I hope that both Deb and Kim understand,  it sounded like such a great idea.
Thanks to both and we will try again another time (please).  Also,
thanks to Tom and Karen for the very enjoyable break and company.  You
are both the best and the timing was perfect !

Ethan and our family continue to thank all of you for your prayers and
support.  Thank you all very much.

Update # 87

Ethan is having a really good day today.  He starts his days with
some quiet time (usually with Grandma) in the living room.
Once awake and ready to get on with it, we head to the tub
for his morning "soak".  He really enjoys the tub and just
soaking in the warm water.  Then it is massage and dress
time - always an adventure.

The majority of the day is filled with reading stories, watching
TV or videos, playing with toys (when he's able), and
weather permitting - outside.  Sometimes we read outside or
just look around.  He does not like "walks"  anymore so we mostly
travel front to back.  He likes to just sit and watch clouds or
the trees along Victoria Ave. move in the breeze.

The evening usually finds Uncle Keith, Grandma, Papa, and  Dad
all wanting some Ethan time.  This is really enjoyable for
Ethan - he likes all the family being together.  We try not to get
him to worked up,  but we usually do.

Then comes the evening bath and calming down time.  He has to have
his evening reading time - it has always been that way.  Then he is
ready for sleep - and often so are we (smile).

Again thanks to all who pray for Ethan and offer support.
As a family we are truly grateful.  Thank You.

Ethan under his superman (very special) towel.
This is a daily post morning bath look.  Pretends
to sleep and when you get close he flings his
arms and makes noise.  Then we all laugh.

Neat kid  !

photo taken 1-17-2014

Update # 86

Ethan is one week into the new year and Thursday will mark 300
days !  He gives us a grin / smile every morning and usually has
a pretty good attitude.

Ethan spends most of his days listening to books we read to him,
watching TV,  or weather permitting - outside looking around. He
really likes the constant attention.  His motor skills have really
dropped off.  Except for rolling over he needs us to help him do
everything now.  He has 99 % no understandable oral language.
Because of this all communication is ether sight cards
or thumbs up / down.  If he gets upset it is usually because he cannot
get us to understand.  This really makes us sad, but we continue to
try.

He enjoys looking at pictures of several fantastic events that he has
had over the past month or so.   He gets post cards in the mail which
thrill him,  and he has his Tennessee shirt / hat.  He likes his adult
book - "Zorro" , and all his Grinch stuff and photos.

We all wish to thank you -  for your prayers and support.  We
cannot put into words how wonderful you all are.  THANK  YOU.

Ethan wearing his wolf hat with mittens
(thanks Tom & Karen)  His howl is
really funny.