Monday, May 29, 2017

Things Are Looking Up And Down

feeding tube check
supra pubic catheter check
healthy yellow pee check
liquid hope, food for feeding tube ordered check

but the feeding tube needs to be flushed
every four hours
the supra pubic catheter causes bladder spasms
whenever I have gas
the ventilator which I need to use
eight hours a day
causes gas

I have had a low grade fever
for two weeks 

the pain in my arms is firing up
making me not able to think straight
we keep trying new arm pillows
but nothing seems to work

the ALS clinic in Salt Lake
was very useful
but in the end
nothing was truly accomplished
all my issues
are still here

but I don’t go pee anymore
well, I do
but straight from my bladder
into a bag

I don’t have to eat anymore
or swallow pills
but I still can
if I want to

things keep progressing
it’s a boxing match
I’ll never win
but I’ll stay on my feet
or in my chair

First Stop: In And Out Burger

Micah is learning how to use the cough assist 

A long day at the ALS clinic
It's a potty party
Cousins Jessica and Hunter join the Robin family for a sushi party the night before my feeding tube procedure
After getting the feeding tube

Candice exhausted

Andrew says Good-bye as we leave Salt Lake City

Back from Salt Lake City
Out for a walk with Cece and Nahza

Blogging this post with Cece


  1. The "Potty Party" made everything else okay😂😂😍😍😍 Head back, full on laughter-priceless. Sending love! M

  2. Sending you love, mystical hugs and prayers every day--so much love to you!