Update # 96

Day 348 and Ethan is back to his old self.  Joking with us and
laughing at funny moments on TV.

Marta (Hospice nurse) came by this a.m. ,  all is well
considering.  We also took his weight today.  Ethan checks in at
44.3 lbs ( 20.09 kilograms ).  That is a loss of about 4 lbs. in
the last month.

Monday Ethan got a package from his friend Alisha (Ducky) at
CHLA.  This was great and made for lots of smiles that afternoon.
That was followed up by a text message on Tuesday,  Ethan
thinks Ducky likes him (BIG smile !).

Ethan is really starting to slow down.  He prefers to just lay and
watch TV or get read to.  Moving about seems to be quite a chore
and he tires quickly.  However,  yesterday Dad did get him in his
wheel chair and outside for some "sun" time.  Once it was over, all
was good.

We continue to be thankful for the prayers and support that comes
our way.  Our thanks to all of you.

Ethan with goodies from
Alisha.  Notice the "Ducky"
on his shoulder - he wanted it
placed there for the
photo.

Feb.  24, 2014

Update # 95

Ethan is not having a very good day.  He does not want to
respond to any questions,  and he does not want any play
contact.  He just turns his head or rolls to his side.  As much
as this concerns us,  we are giving him his space and will do
the wait and see thing.  We think part of his attitude is due
to planned visitors coming by today.  This has happened before,
and when the visitors leave, the "old Ethan" slowly returns.

A relative was talking to me yesterday afternoon about this blog.
He said he was happy it was available to view, but got after me
about my writing skills,  or lack there of.  We looked back over
the entire blog and I am a bit sad.  My former students would not
be happy with me.  In my defense I will say that the writing is
done quickly and also endures some emotion.  With that said, thank
you for following along and I hope you are able to understand
what I am trying to say.

We also dug into the computer's records to discover who YOU are.
Ethan's blog has had readers from 14 countries, some I am aware of
and others surprise me.  Here is the list and the number of contacts
from each.

USA                            4864
Russia                          152
Kazakhstan                  130
Germany                      48
United Kingdom          46
S.  Korea                      33
Greece                          20
China                            15
Poland                          13
Belgium                       10
Israel                             7
Brazil                            3
Switzerland                   1
France                           1

We continue to be thankful for your continued prayers and support .
Here is a photo of Ethan prior to his  DIPG  diagnosis.

             
Remember to click
on most of the photos
for a larger view.

Update # 94

Feb. 21, 2014 marks 343 days for Ethan !  He is back to his old
self again today.  He woke up with a smile and his usual trick.
He sees you enter his room and he pretends to be asleep, then
flails his arms and laughs at you.  It's a must be there to appreciate
moment.

His renewed zest is being attributed to a beautiful rainbow over a tree
that was text messaged to us (thanks Tom & Karen).  I have zero
scientific proof mind you, but good friends and good thoughts ALWAYS
make every one's life better !

Today we had some real laughter while playing with Uncle Keith and
Papa can also claim some.  Ethan wanted to go outside today and spent
about an hour with Grandma looking around and reading.  Ethan
received a package in the mail today (four books),  which followed an
earlier package with 2 books last Sat. from the same friend of Grandma's in
Northern Calif. (thanks Marge).

Ethan's hospice nurse (Marta) came by today.  He has come to both expect
and enjoy her visits.  She really makes us all feel good when she is here.

We continue to be thankful for the prayers and support that we receive
from so many. Ethan says good night to you all.

Update # 93

Ethan is having a "just let me rest" day.  He usually wants to
watch TV,  be read to,  or go outside and look around.  But today
was just let me lay down.  When we would ask him what he
wanted to do,  or when we would offer suggestions  -  the response
was always  "no" .  He did,  late this afternoon,  agree to sit and rock
with grandma.  This also provided the picture at the bottom of this post.

Over the past month Ethan has moved between several days in a row of
stable health and abilities,  to a day or two of obvious decline,  to then stabilize
for several days again.  I am hoping that tomorrow will find him back to a
more involved and stable condition.  He is such a strong fighter.

Ethan received an e-mail from Alisha (CHLA) this evening..  This message
brought a grin to his face at his bed time  - thanks Alisha !  Not sure what
pleased him more,  the subject or the "3" at the end.  Knowing these two,  it
was probably both.

We continue to be thankful for the prayers and support offered by so many.
Life both surprises and amazes when you least expect it.

Ethan and Grandma while
sitting and rocking together. 

Feb.  2014

Update # 92

Today marks 335 days !  I honestly did not think these days would happen
for Ethan,  so glad to be wrong !

Hospice nurse came by today,  she put in a request for a new wheelchair.
Because Ethan is having a terrible time sitting and keeping his head upright,
she is getting him a wheelchair that reclines.  We all hope that this will
allow Ethan to be a bit more mobile and able to be more comfortable.

Ethan spent a good bit of time picking Valentine cards for people that
he wanted to send them to.  He actually wanted specific cards for specific
people.  Glad Grandma had patience, it was quite the task.  Now, several
days  later,  Ethan has quite a collection himself.  So many people being
so nice to Ethan - Thank You.

Ethan received a Valentine phone call today - from Dr. Epstein at CHLA.
Sending good wishes and checking in on "her friend".  This was a very
big surprise for us,  and for Ethan.  Everyone at CHLA goes the extra
mile,  they really are the best !

We continue to be blessed with prayers and support from so many.  We
all thank you so much for all that you do.

Ethan's collection of Valentine
Cards.  Not shown is a huge
collection of balloons  thanks to
Auntie Kay.

A  VERY  special card and frame
with "Zorro" on it.  Thanks  to
Tom & Karen.

Update # 91

Ethan is having a pretty good day.  We have narrowed his communication
cards down to a much more manageable number, and this also seems to
please Ethan as well.  Our experience is a learning one that offers new
insights almost daily.

We also started using a suction machine to assist Ethan with an ever
increasing amount of thick saliva building up in his mouth.  The way to
explain it is like what a dentist uses on you (you all have that picture
now huh).  As it was demonstrated for us by our hospice nurse, she cautioned
about getting to deep in his mouth or attaching to tongue or a cheek.
Guess who tried to suction off Ethan's face ?  Even Ethan got a laugh
out of that and is now the never forget what Papa did story.  Mention it
to Ethan and he laughs and does the cover the eyes thing - cute.

Ethan continues to smile and make us smile on a daily basis.  This in
spite of the fact that he has dropped more weight (weighs 48 lbs. now), and
his lack of strength causes him to need a short power nap or two during
the day.  He was very excited yesterday when he received a note
from "Ducky" in the mail.  Totally amazes me the reaction he has when
talking about her or when they see each other - neat Lady !

We continue to thank everyone for the continued prayers and support.
Following is a recent picture of Ethan with his new "Superman"
pillow pal - Thanks Dave and Wendy.

Feb.  2014

Ethan and pillow pal.

Update # 90

Ethan is sitting in Grandma's lap listening to stories being read.
He has always liked getting read to and it is something we totally
enjoy doing with him.

Ethan continues to start each day with a grin.  He has a way of making
you feel that he was just waiting for you to show up.  A really
terrific kid !  This past week-end was a bit slower on his part.  He was
happy to just lay and watch TV or look out the windows.  If we asked
him if he wanted something he would indicate no, so we just had
a relaxing week-end with him.

Ethan recently received a "Superman" pillow pal in the mail.  The
box was exciting to open and now his bed is getting quite full
if you count Ethan and all his bed time friends !  A special thanks
to Dave and Wendy - Ethan thanks you.

We continue to thank everyone for their continued prayers and
support.  Ethan is really happy that "Ducky" (Alisha from CHLA)
has said she will check out this blog on occasion.  She is one of
his all time favorite friends and never fails to boost his ego when
they make contact.

Here are some pictures of Ethan and some of his favorite friends ...

 Ethan, Dad (Kent), and
Grandma with a very
bouncy Tigger at Disneyland
this past January.

Ethan, Dad (Kent) and Eeyore
at Disneyland this past January.

Grandma, Winnie-the-Pooh,
Ethan, and Dad (Kent)
at Disneyland  this past
January.