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