This is really a reply to a question someone asked at one of the forums i go to yesterday…. I thought I should post this here though it’s not very interesting…. maybe that’s why…
Question: What are your days like?
mornings
wake up (normally) around 6 or 7am…
get dressed… and turn on the computer… start my email program
flush the tube /get meds down the tube /flush tube again/and hook back on to the feeding pump
get on the computer
depending on the day… i may have a doc/therapy appt, (pdoc/therapist or tummy doc)
get on the computer again
noon(ish)
My wife might come by (sometimes the kids come too) …especially if she needs to see my doc 😐
more computer…
maybe play the piano a little
computer again…
afternoon
more computer
evening
TV
visit from my wife or my sister….
computer…if i’m lucky to get access to the public computer (or even luckier than lucky… my own computer)…
flush the tube /get meds down the tube /flush tube again/and hook back on to the feeding pump …
(there is a lot more tube stuff that has to be done through out the whole day…. more flushing …getting more formula…. boring stuff like that…)
sleep
