Update # 109

Monday, day 395 - go Ethan !

Ethan's hospice nurse Marta arranged for Ethan to get a
comfort pad to sit on and one to lay on.  Thank you Marta,
they have made a big difference.  As Ethan has lost weight,
his body has developed points where he gets sore spots from
laying or sitting.  Thanks to these cushions / pads he is so
much more comfortable.  Had his most calm  and peaceful
nights rest in ages last night.  It also allowed Dad to get some
good rest also. 

Ethan received the most amazing hand made ship fold out card
from Tristan in the mail..  He is a friend of  Dad (Kent)
who took the time to totally WoW Ethan. Was very nice of
Tristan to do something so special !

Ethan is still using oxygen on a continuous basis but is breathing
better and we have stopped using the suction machine almost
completely.  We still have times that we deal with a thick milky
colored flem, but so much less often and less in amount as well.

Ethan now has total control over not only what Papa reads him,
but also when we will stop (I know Konna, I know  :-))  ).
Have not read Zorro since last experience, he now wants to
continue with the book Dr. Epstein brought him, "Shiloh".
I am amazed at his interest, and his reaction to points in the
story that he feels the need to react to - makes reading so
much fun.

This past week-end Alisha (Ducky from CHLA) came by to
visit again.  Ethan really likes her visits and even allowed her
to take a "selfie".  Of late, Ethan does not really like pictures
because of his oxygen tube and his mouth (usually open). 
We try to honor his request, but on occasion Papa does sneak one in.

We want to thank all for their prayers and support, it really helps - Thank You.

Ethan and his friend Alisha
taking a selfie.

April  2014