Update # 110

Today is day 399  -  Amazing  !

Ethan has endured a very stress filled week.  He has periods
of time when he is comfortable to times when nothing we
can do allows him to be comfortable.  He is having rough
times sleeping the night through.  This is new for Ethan, he
has had a night here or there, but never several in a row.  His
routine of one or two power naps during the day has now
become several during each day and range from 15 minutes
or so to about two hours, and no routine or pattern.

He has been on a liquid or super soft diet for what seems like
forever, but this week has been a mess.  During any given day
he will be okay to not being able to swallow anything at all.
This upsets Ethan which then adds to his being uncomfortable.

He has moments when he tolerates his oxygen hose to others
when he removes it and fights to prevent you from putting
it back on.  He always gives in, but his struggles and emotions
have his breathing all messed up then.  After this happens, he
is so exhausted he wants nothing to do with anyone or anything
and will fall asleep for a bit.

Dad and Grandma are getting real tired by days end ( as is Ethan )
and all just want a nights sleep. Papa tries to stay out of the way
and only step in to help when really needed.  Tried to read to
Ethan today, he was letting me but was difficult for him to be
focused / involved.   Will hope and see what tomorrow will bring.

Ethan continues  to receive mail, got about 55 cards on Thursday.
We showed some to him, but he really was not in the mood, so are
planning to try again later.

Thanks to all for your prayers and support.  We appreciate them
all very much.