Day 470 and Ethan continues to set the bar higher.
Ethan has had a good past few days. His ability to eat
goes from easy and a lot to difficult and not very much.
He still continues to hover about 38 lbs (17.2 kg) so
I guess he is okay.
His left eye has become quite red and waters a lot. His
nurse ( Marta ) got him some eye medicine and hopefully
that will clear up quickly.
The past couple of days Ethan has been really into watching
the DVD "Mulan". Seems as if the want has changed again.
He usually has several days in a row where he wants one
specific DVD or genre then will totally switch to something
different.
Yesterday afternoon Ethan agreed to stay with Dad ( Kent )
and let Grandma and Papa go out for some time with good
friends Tom & Karen. We had a bit to eat and was back
to see him before bed. Ethan also got to visit a short time
with Tom and Karen and showed them his "Camel" card.
A card that Ethan thinks is special which just happens to
be from Tom & Karen's son Logan - very cool !
We continue to be thankful for the prayers and support
we continue to receive. We are also lucky to have great family
and friends - thanks Tom and Karen.
Saturday, June 28, 2014
Saturday, June 21, 2014
Update # 124
Just a quick post on this Saturday morning. Ethan went to bed
Friday night happy and smiling and is still the same this morning.
The big laughs came yesterday via the mail. Ethan received a card
from Kuwait. A very special friend was passing through there as
he travels to some other strange and unusual place. It was really
nice that he remembered me in his busy day, and the card was
great. The picture of a camel wearing sun glasses and a scarf,
looking all cool, was just too funny. Ethan really found it funny
and had to show everyone for the rest of the day. Thanks Logan !
This morning when Ethan got up he had an Angel Baseball cowboy
hat and an Angel baseball. Uncle Keith went to the Angel ballgame
last night and brought these items back for him - WOW - what a
great uncle !
Ethan continues to check out the garden and as always is interested
in what is harvested. Our big issue now is that Ethan wants to eat
the goodies, but is not physically able to. What a sad position to
be in. Just does not seem fair to go through this - but he gets over it
and moves on. I think there is a lesson for me in there, he is such
an amazing young boy.
Thank you for your prayers and support. We are as always very
grateful.
Friday night happy and smiling and is still the same this morning.
The big laughs came yesterday via the mail. Ethan received a card
from Kuwait. A very special friend was passing through there as
he travels to some other strange and unusual place. It was really
nice that he remembered me in his busy day, and the card was
great. The picture of a camel wearing sun glasses and a scarf,
looking all cool, was just too funny. Ethan really found it funny
and had to show everyone for the rest of the day. Thanks Logan !
This morning when Ethan got up he had an Angel Baseball cowboy
hat and an Angel baseball. Uncle Keith went to the Angel ballgame
last night and brought these items back for him - WOW - what a
great uncle !
Ethan continues to check out the garden and as always is interested
in what is harvested. Our big issue now is that Ethan wants to eat
the goodies, but is not physically able to. What a sad position to
be in. Just does not seem fair to go through this - but he gets over it
and moves on. I think there is a lesson for me in there, he is such
an amazing young boy.
Thank you for your prayers and support. We are as always very
grateful.
Wednesday, June 18, 2014
Update # 123
Day 460 and all is well !
It has been a week of exciting events at Ethan's house.
We all enjoyed a happy father's day, then we had Papa's
(me) birthday. Also during this week, Ethan received
phone calls from Dr. Brooke (his local doctor) and also
Dr. Epstein (his lead doctor from CHLA). Both are
really happy with how Ethan is doing and how long he
has been doing it. Ethan continues to push the norm for
what so many expected.
Ethan continues to receive mail from so many people
and from all around the world. To those that have sent
Ethan mail, thank you. He really enjoys the cards
(posted all around the house) but he also enjoys being
shown on the map where he is and where the card came
from. And your comments have been very nice - again
thank you.
Ethan's garden has really started to take off. He enjoys
watching it grow and seeing the harvest that Grandma
collects. He had a big smile today as we send our neighbors
some squash and peppers. This is an act that has taken place
for several years and Ethan enjoys giving them "his stuff".
They enjoy the goodies and make a big deal of it to Ethan.
We have Really Good Neighbors - Thanks Lupe & Betty.
We did our measurements today. Ethan's weight has dropped
to 38 pounds (17.2 kilograms) but his height increased to
47 inches (1.19 meters).
We continue to be blessed with your prayers and support.
Thank you all very much for keeping us in your thoughts
and actions.
A VERY casual Father's Day
pic of Uncle Keith, Kent (Dad),
Ethan, Papa.
16 June 2014
Ethan giving a "thumbs up"
after giving some chocolate
cake his best shot. Note icing
on his lip.
Happy Birthday Papa
17 June 2014
It has been a week of exciting events at Ethan's house.
We all enjoyed a happy father's day, then we had Papa's
(me) birthday. Also during this week, Ethan received
phone calls from Dr. Brooke (his local doctor) and also
Dr. Epstein (his lead doctor from CHLA). Both are
really happy with how Ethan is doing and how long he
has been doing it. Ethan continues to push the norm for
what so many expected.
Ethan continues to receive mail from so many people
and from all around the world. To those that have sent
Ethan mail, thank you. He really enjoys the cards
(posted all around the house) but he also enjoys being
shown on the map where he is and where the card came
from. And your comments have been very nice - again
thank you.
Ethan's garden has really started to take off. He enjoys
watching it grow and seeing the harvest that Grandma
collects. He had a big smile today as we send our neighbors
some squash and peppers. This is an act that has taken place
for several years and Ethan enjoys giving them "his stuff".
They enjoy the goodies and make a big deal of it to Ethan.
We have Really Good Neighbors - Thanks Lupe & Betty.
We did our measurements today. Ethan's weight has dropped
to 38 pounds (17.2 kilograms) but his height increased to
47 inches (1.19 meters).
We continue to be blessed with your prayers and support.
Thank you all very much for keeping us in your thoughts
and actions.
A VERY casual Father's Day
pic of Uncle Keith, Kent (Dad),
Ethan, Papa.
16 June 2014
Ethan giving a "thumbs up"
after giving some chocolate
cake his best shot. Note icing
on his lip.
Happy Birthday Papa
17 June 2014
Thursday, June 12, 2014
Update # 122
Day 454 and Ethan continues to push the limits !
Ethan has had a pretty good week so far. We quietly assess his
abilities each time we are with him, but formerly do so as
something happens or weekly. We are totally aware that
he continues to decline physically, but the speed at which
it takes place is also important to us. His changes at times
happen quickly with several in a short time. Other times they
are few and spaced apart. This week has been a slow week
with only a couple noticeable changes over the past week.
To us, that is good news !
Ethan continues to receive mail. Over this week, he has received
about a dozen cards and one package. The package helped Ethan
celebrate "flag day". Thank you Russ and family. He was a teacher
that worked with Grandma - real nice person !
Alisha came by to visit also. Ethan really enjoys time with her and
she can always get a smile on Ethan's face. She also brought him a
DVD - "Alvin and the Chipmunks". Thank you Ducky.
Today Ethan got all excited when Grandma brought in some
harvest from their garden. He helped select what would be planted
and really enjoys watching things grow and then picking them.
One of his favorites from past years has been carrots. He helped
plant them, them would pick - wash - and eat them. This year
is no different except he cannot eat them. It was so special
watching today as he gave his first picked carrot of the year to
our dog Chip. We call laughed as Chip ate it fro Ethan's hand.
We continue to be blessed with prayers and support. To all of you,
thank you very much.
Ethan taking a 10 a.m. power
nap Wednesday. Such a neat
young guy.
11 June 2014
Ethan has had a pretty good week so far. We quietly assess his
abilities each time we are with him, but formerly do so as
something happens or weekly. We are totally aware that
he continues to decline physically, but the speed at which
it takes place is also important to us. His changes at times
happen quickly with several in a short time. Other times they
are few and spaced apart. This week has been a slow week
with only a couple noticeable changes over the past week.
To us, that is good news !
Ethan continues to receive mail. Over this week, he has received
about a dozen cards and one package. The package helped Ethan
celebrate "flag day". Thank you Russ and family. He was a teacher
that worked with Grandma - real nice person !
Alisha came by to visit also. Ethan really enjoys time with her and
she can always get a smile on Ethan's face. She also brought him a
DVD - "Alvin and the Chipmunks". Thank you Ducky.
Today Ethan got all excited when Grandma brought in some
harvest from their garden. He helped select what would be planted
and really enjoys watching things grow and then picking them.
One of his favorites from past years has been carrots. He helped
plant them, them would pick - wash - and eat them. This year
is no different except he cannot eat them. It was so special
watching today as he gave his first picked carrot of the year to
our dog Chip. We call laughed as Chip ate it fro Ethan's hand.
We continue to be blessed with prayers and support. To all of you,
thank you very much.
Ethan taking a 10 a.m. power
nap Wednesday. Such a neat
young guy.
11 June 2014
Saturday, June 7, 2014
Update # 121
Day 449
The past couple of days have been very strange for Ethan.
Through this whole process to date, Ethan has exercised his
independence when ever possible. However, of late he wants
to be held, hugged, or have VERY close contact with either
Grandma or Dad. He will out of the clear just start a very
weak cry . He tells us nothing is wrong and he does not hurt ???
Yesterday, his hospice nurse (Marta) said everything sounded
good, but she could tell he was anxious. His limited intake
has decreased a bit and he seems happiest to just be held.
Since Ethan's last post, he has received about 35 cards in
the mail. He received a couple from Washington, D.C.
Those cards came from Tom and Karen while on their trip.
Surprise, Surprise, guess who came by Friday for a visit ?
Yes, Tom and Karen. They brought me (Ethan) a really nice
T-shirt and a pair of socks, which gave him a really big smile !
Ethan was really happy late Friday afternoon. As he was held by
Dad, he watched Grandma in the (their) garden. Yesterday
saw the picking of some hot peppers and some yellow
squash. Tomatoes are growing and will be ready soon. The
garden has always been a Grandma / Ethan shared adventure.
He loves growing carrots, pulling them from the earth, and
eating them. this season it is a more vicarious adventure for
Ethan, but shared all the same.
We continue to be thankful for the prayers and support offered
by so many. Thank you all very much.
The past couple of days have been very strange for Ethan.
Through this whole process to date, Ethan has exercised his
independence when ever possible. However, of late he wants
to be held, hugged, or have VERY close contact with either
Grandma or Dad. He will out of the clear just start a very
weak cry . He tells us nothing is wrong and he does not hurt ???
Yesterday, his hospice nurse (Marta) said everything sounded
good, but she could tell he was anxious. His limited intake
has decreased a bit and he seems happiest to just be held.
Since Ethan's last post, he has received about 35 cards in
the mail. He received a couple from Washington, D.C.
Those cards came from Tom and Karen while on their trip.
Surprise, Surprise, guess who came by Friday for a visit ?
Yes, Tom and Karen. They brought me (Ethan) a really nice
T-shirt and a pair of socks, which gave him a really big smile !
Ethan was really happy late Friday afternoon. As he was held by
Dad, he watched Grandma in the (their) garden. Yesterday
saw the picking of some hot peppers and some yellow
squash. Tomatoes are growing and will be ready soon. The
garden has always been a Grandma / Ethan shared adventure.
He loves growing carrots, pulling them from the earth, and
eating them. this season it is a more vicarious adventure for
Ethan, but shared all the same.
We continue to be thankful for the prayers and support offered
by so many. Thank you all very much.
Monday, June 2, 2014
Update # 120
Can you believe, Day 444 and update # 120, WOW !
Ethan has been holding his own over the past few days.
He continues to spend most of his days listening to stories.
He usually selects the books to be read, he has very specific
wants. He also likes to let Grandma surprise him with a story.
He also enjoys stretching out on his soft mat (thanks hospice) and
watching TV or a special DVD. We also try to get outside
before the heat arrives, he enjoys checking out his garden. He has
tomatoes, peppers, carrots and squash growing already.
This past week was a good communication week for Ethan. He
received a text message with photo. Tom and Karen sent it on
their flight from the west coast to the east coast. He also got
an e-mail from Central Park, N.Y.. Was very cool and enjoyed the
horse and feather very much ! In addition to that excitement, he
received a package from Grandma's friend in northern California.
Marge sent Ethan four new books, all have been read and enjoyed
several times. Then to top it all off, Ethan received three special
post cards. They came from England, Scotland, and Ireland.
All these contacts (text msg. and cards) mean a lot to Ethan, to all of
you who have made the time to do this for Ethan - Thank You !
We continue to be thankful for the prayers and support from so
many, thank you all very much.
How about a hug Grandma ?
One of Ethan's favorite things
to do !
1 June 2014
Ethan has been holding his own over the past few days.
He continues to spend most of his days listening to stories.
He usually selects the books to be read, he has very specific
wants. He also likes to let Grandma surprise him with a story.
He also enjoys stretching out on his soft mat (thanks hospice) and
watching TV or a special DVD. We also try to get outside
before the heat arrives, he enjoys checking out his garden. He has
tomatoes, peppers, carrots and squash growing already.
This past week was a good communication week for Ethan. He
received a text message with photo. Tom and Karen sent it on
their flight from the west coast to the east coast. He also got
an e-mail from Central Park, N.Y.. Was very cool and enjoyed the
horse and feather very much ! In addition to that excitement, he
received a package from Grandma's friend in northern California.
Marge sent Ethan four new books, all have been read and enjoyed
several times. Then to top it all off, Ethan received three special
post cards. They came from England, Scotland, and Ireland.
All these contacts (text msg. and cards) mean a lot to Ethan, to all of
you who have made the time to do this for Ethan - Thank You !
We continue to be thankful for the prayers and support from so
many, thank you all very much.
How about a hug Grandma ?
One of Ethan's favorite things
to do !
1 June 2014
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