Update # 108

This morning marks day 392 in Ethan's struggle with DIPG.
This  past  week has been a real challenge for Ethan.  His health
has leveled off but he has lost ground to where he was a week
ago.  He is using oxygen continuously now and has added a couple
of naps to his day.  He still has his humor, but does show his
frustration at not being able to communicate as he would like.
He also is disappointed at his ability to only get  liquids down
and not much of those.  As we (family members) sit or lay
with Ethan we all get the feeling from him that he really wants
to just be a six year old boy.   Those are the moments I wish I
had not looked into his eyes.

Ethan continues to receive and enjoy mail.  I have stopped
counting the cards when he reached 575, a day or two ago.
He received a package from a friend of Grandma who lives
in Northern California.  She sent 3 books and we have read
two of them already.  We also spent some time yesterday
trying to understand some rapid arm movements of Ethan's.
We finally discovered he was sword fighting, a result of
reading "Zorro" in the a.m.  We have almost finished the book
and ended yesterday with a sword fight.  Papa needs to
realize that stopping at an exciting moment might not be
a smart move. (ha ha)

We are as always thankful for the many prayers and
support we receive.  Thank you all ...