Day 438 and counting !
Ethan is back to his normal routine and behaviors. He is
interacting as before with family and is smiling at the new
day. We got Ethan's weight today, 41.3 lbs (18.7 kg). So
from his last weight until today, he has only lost 0.3 lbs.
(0.1 kg). That is very good news !
If their is a down side, it is frustration at his inability to
communicate with us. He tries to talk, which is just
soft noises. When we are unable to understand, we look
for possible clues and take a guess. We are sometimes
correct and everyone is happy, but when we are wrong - we
try again until we get it or he (Ethan) gives up. On occasion
he gets upset and it really shows. His verbal noise gets louder
and he starts to fling his arms. This really wears him out and
he usually is very calm or even naps briefly afterward.
It is not only frustrating for Ethan, but to the rest of the
family as well.
Ethan's mail has slowed down, only three last week and then
no mail over the holiday week-end. Ethan discovered two
new movies this week-end. He is very happy with Emma
Thompson in "Nanny McPhee" and "Nanny McPhee Returns".
Watched them both on Sunday and Monday. Thanks to
these two movies, I can no longer use the phrase "when pigs fly".
Digging into my bag of phrases to use that will please Ethan.
We continue to be thankful for all the prayers and support from
so many. Thank you all so much.
Tuesday, May 27, 2014
Thursday, May 22, 2014
Update # 118
Day 433 - who could of guessed ?
The late afternoon of the 20th through the night of the 21st was a
second big scare with Ethan. His breathing became VERY labored,
he had several uncontrolled body shakes ( not violent but lasting
about 15 - 30 seconds ), unable to get much of anything in
because of his lack of swallowing, and he was overall very
uncomfortable.
We were all very surprised and super happy when Ethan awoke this
morning and had his special personality back and was showing no
signs of what was the day before. This is the second time that he has
had a health issue and almost like magic he seems to will himself
back to how he was before !
When Marta, hospice nurse, came by to check on him this morning,
she was also surprised to see how he was doing. He now has his
oxygen flow amount turned back down, and the frequency of his
breathing treatments are also reduced again. Really glad Marta comes
by so often, great peace of mind for us.
Each night when Ethan goes to sleep, his ceiling has reflective stars
attached that glow for a bit after the lights are out. He also has a
night lite type item that shines star shapes all around his room.
As I shared with his Dad, if the stars come out in his night sky,
all is well . Ethan sure likes them - so they continue to shine.
Thanks to all for the prayers and support. They obviously are
working in his behalf - Thank You .
The late afternoon of the 20th through the night of the 21st was a
second big scare with Ethan. His breathing became VERY labored,
he had several uncontrolled body shakes ( not violent but lasting
about 15 - 30 seconds ), unable to get much of anything in
because of his lack of swallowing, and he was overall very
uncomfortable.
We were all very surprised and super happy when Ethan awoke this
morning and had his special personality back and was showing no
signs of what was the day before. This is the second time that he has
had a health issue and almost like magic he seems to will himself
back to how he was before !
When Marta, hospice nurse, came by to check on him this morning,
she was also surprised to see how he was doing. He now has his
oxygen flow amount turned back down, and the frequency of his
breathing treatments are also reduced again. Really glad Marta comes
by so often, great peace of mind for us.
Each night when Ethan goes to sleep, his ceiling has reflective stars
attached that glow for a bit after the lights are out. He also has a
night lite type item that shines star shapes all around his room.
As I shared with his Dad, if the stars come out in his night sky,
all is well . Ethan sure likes them - so they continue to shine.
Thanks to all for the prayers and support. They obviously are
working in his behalf - Thank You .
Tuesday, May 20, 2014
Update # 117
Well it finally happened. For the first time since we began
hospice, Ethan displayed discomfort to the point of pain.
Hard for Ethan, awkward for the family. Our ability to
communicate is difficult at best, but trying to determine
what is wrong or have Ethan tell us is almost impossible.
In addition to this (as if that is not enough), Ethan has on
several occasions the past few days passed a small amount of
blood in his urine. Does not seem to be any pain at time of
urination but scary to us all the same.
The good news is "hospice". Our regular nurse Marta was here
very soon after our call. She was calm, knowledgeable, and a
known face to Ethan. In addition to her visit, Ethan's doctor,
Dr. Mall, came to visit Ethan. Again, on top of what is going
on and very reassuring to Ethan and family. Ethan really likes
him as does the family !
I guess with all that is happening these past few days, Ethan really
does demonstrate his bravery, as his recent award proclaims.
Ethan sat in his wheelchair on the back porch and watched Dad
give Chip (family dog) a bath this morning. This was great fun for
Ethan but not as much for Dad or Chip. But it was good to get
outside - no strong winds or real high heat. It is good that we have
a central location for Ethan's oxygen machine and a long hose from it.
As always, we are grateful for the continued prayers and support
that are offered for Ethan and the family. Thank you all very much.
hospice, Ethan displayed discomfort to the point of pain.
Hard for Ethan, awkward for the family. Our ability to
communicate is difficult at best, but trying to determine
what is wrong or have Ethan tell us is almost impossible.
In addition to this (as if that is not enough), Ethan has on
several occasions the past few days passed a small amount of
blood in his urine. Does not seem to be any pain at time of
urination but scary to us all the same.
The good news is "hospice". Our regular nurse Marta was here
very soon after our call. She was calm, knowledgeable, and a
known face to Ethan. In addition to her visit, Ethan's doctor,
Dr. Mall, came to visit Ethan. Again, on top of what is going
on and very reassuring to Ethan and family. Ethan really likes
him as does the family !
I guess with all that is happening these past few days, Ethan really
does demonstrate his bravery, as his recent award proclaims.
Ethan sat in his wheelchair on the back porch and watched Dad
give Chip (family dog) a bath this morning. This was great fun for
Ethan but not as much for Dad or Chip. But it was good to get
outside - no strong winds or real high heat. It is good that we have
a central location for Ethan's oxygen machine and a long hose from it.
As always, we are grateful for the continued prayers and support
that are offered for Ethan and the family. Thank you all very much.
Thursday, May 15, 2014
Update # 116
I have let time get the better of me, sorry. Ethan has been
holding his own physically and his moods have been generally
good.
Ethan has been staying inside for the past week. Between the
winds ( Ethan does not like them ) and the heat, he has
stayed in doors. This past week has been full of TV, music,
reading, computer time, and naps. Full days yes, but he
does miss getting outside.
Ethan continues to receive mail. Lately they have all been
from the U.S. and most from Southern California. He enjoys
the pictures and looking to see where they are from.
Ethan had a friend from kindergarten come and visit this
past week. It started out well, but he was quiet towards the
end. He got sad because the friend was moving about and
playing with various toys and Ethan could not join him. I
cannot imagine how hard this experience must be for Ethan,
so sad.
We continue to be thankful for the prayers and support that
come our way. Will try and post again in a more timely
manner. Thank you all.
holding his own physically and his moods have been generally
good.
Ethan has been staying inside for the past week. Between the
winds ( Ethan does not like them ) and the heat, he has
stayed in doors. This past week has been full of TV, music,
reading, computer time, and naps. Full days yes, but he
does miss getting outside.
Ethan continues to receive mail. Lately they have all been
from the U.S. and most from Southern California. He enjoys
the pictures and looking to see where they are from.
Ethan had a friend from kindergarten come and visit this
past week. It started out well, but he was quiet towards the
end. He got sad because the friend was moving about and
playing with various toys and Ethan could not join him. I
cannot imagine how hard this experience must be for Ethan,
so sad.
We continue to be thankful for the prayers and support that
come our way. Will try and post again in a more timely
manner. Thank you all.
Thursday, May 8, 2014
Update # 115
Day 419 and Ethan continues to do well ! This little guy
never stops amazing me with his fight and humor as he
pushes back against some pretty tough odds.
Ethan's Dad and Uncle Keith just recently had their
birthday. It was a fun day and Ethan did his best at
singing "Happy Birthday" to them both. But the best
part was pulling his wheel chair up to the dinner table
for some "D Q " birthday ice cream cake. It was
a really good time for all !
Yesterday afternoon Ethan had a surprise visitor.
Ducky (Alisha) from CHLA came by for a visit.
In addition to an enjoyable visit for Ethan, she
also brought Ethan a hand made book. The story
was all about their meeting while at CHLA. It was
a super gift that has been read several times already.
We recently did a weight check on Ethan. He has
only lost 1 pound since last check. He now weighs
41.6 lbs. ( 18.8 kg ). But he has also gained length,
He also is trying very hard to talk. Most of it is
still not understandable, but every once in a while
a word gets out. Really exciting for us, but also
exciting for Ethan - he tries SO hard.
We as always are thankful for your prayers and support.
Without them and your friendships (Tom & Karen), Our
lives would truly be difficult.
Ethan listening / reading
stories on the laptop. He
sure loves stories !
7 May 2014
never stops amazing me with his fight and humor as he
pushes back against some pretty tough odds.
Ethan's Dad and Uncle Keith just recently had their
birthday. It was a fun day and Ethan did his best at
singing "Happy Birthday" to them both. But the best
part was pulling his wheel chair up to the dinner table
for some "D Q " birthday ice cream cake. It was
a really good time for all !
Yesterday afternoon Ethan had a surprise visitor.
Ducky (Alisha) from CHLA came by for a visit.
In addition to an enjoyable visit for Ethan, she
also brought Ethan a hand made book. The story
was all about their meeting while at CHLA. It was
a super gift that has been read several times already.
We recently did a weight check on Ethan. He has
only lost 1 pound since last check. He now weighs
41.6 lbs. ( 18.8 kg ). But he has also gained length,
He also is trying very hard to talk. Most of it is
still not understandable, but every once in a while
a word gets out. Really exciting for us, but also
exciting for Ethan - he tries SO hard.
We as always are thankful for your prayers and support.
Without them and your friendships (Tom & Karen), Our
lives would truly be difficult.
Ethan listening / reading
stories on the laptop. He
sure loves stories !
7 May 2014
Sunday, May 4, 2014
Update # 114
The past five days have been good for Ethan. His mood has been
generally up beat, and he has been caught laughing on several
occasions. In addition he has been doing well with a lower dose
rate on his oxygen and even has periods of time with no extra
oxygen at all.
Ethan received a card from Alisha (Ducky) from CHLA this
week. He enjoys hearing from her and got a good laugh at
the art work she put on the card. I think he likes the
" 3 and 3 " the most though ! Ethan also received a phone call
from his friend Dr. Epstein from CHLA as well. She has kept in
contact with us and always makes us feel good about what is
going on. Everyone should be able to have contact with a
doctor that is as skilled, positive and optimistic as Dr. Epstein.
Ethan and us (the family) are truly fortunate !
On Friday Ethan had a short visit from Auntie Kay and Winston.
This was really enjoyable for all of us and Ethan got a special treat.
A while back, Ethan received several cards in the mail from China.
Turns out Winston knows some Chinese and was able to read some
and showed Ethan how to say " I Love You " in Chinese - Wow
what a treat !
Ethan received a text message from the Willman's this week. It
included a very neat picture of a "frog garden". We had to count
the frogs and try and name some. This is because of a past Ronald McDonald
House experience where Grandma named Papa and Ethan big burp and little burp.
It is all good and provided a great smile and laughs - thank you so much Karen !
We as always are thankful for the prayers and support that come our way.
This entire process would not be possible without them and you.
generally up beat, and he has been caught laughing on several
occasions. In addition he has been doing well with a lower dose
rate on his oxygen and even has periods of time with no extra
oxygen at all.
Ethan received a card from Alisha (Ducky) from CHLA this
week. He enjoys hearing from her and got a good laugh at
the art work she put on the card. I think he likes the
" 3 and 3 " the most though ! Ethan also received a phone call
from his friend Dr. Epstein from CHLA as well. She has kept in
contact with us and always makes us feel good about what is
going on. Everyone should be able to have contact with a
doctor that is as skilled, positive and optimistic as Dr. Epstein.
Ethan and us (the family) are truly fortunate !
On Friday Ethan had a short visit from Auntie Kay and Winston.
This was really enjoyable for all of us and Ethan got a special treat.
A while back, Ethan received several cards in the mail from China.
Turns out Winston knows some Chinese and was able to read some
and showed Ethan how to say " I Love You " in Chinese - Wow
what a treat !
Ethan received a text message from the Willman's this week. It
included a very neat picture of a "frog garden". We had to count
the frogs and try and name some. This is because of a past Ronald McDonald
House experience where Grandma named Papa and Ethan big burp and little burp.
It is all good and provided a great smile and laughs - thank you so much Karen !
We as always are thankful for the prayers and support that come our way.
This entire process would not be possible without them and you.
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