A Glimpse into Levi's Day

As there only a few days left of Levi's treatment at the Mayo Clinic, we thought we'd give you a little insight into what he (and his parents) do while they are there. Here's a walk-through of a typical day:

• wake up, play
• prepare and give medicine 
  • no food before treatment, so no breakfast
• finish getting ready with
  • AFO boots (his feet need help to be in proper position)
  • hearing aids
  • mask
  • hat 
• a short drive to the Mayo Clinic
  • he chooses which level to park on (he likes Level 4 followed by 2 every now and then)
• check-in with a bright "Well hi!", and "I'm good, how are you doing?" 
  • he also likes to push the button to open the automatic doors
• he plays while the nurses get his vitals and other information about his night
• he will then ask for a warm blanket
  • he loves to snuggle because he knows the anesthesia is coming
• once the doctor gives the anesthesia a whole crew comes in to take him to treatment
  • this is a hard part because he hates it when the doctor comes in and he cries because he can feel the medicine going in
• while in treatment a doctor, social worker, or other advocate meets with Beth and Zach to go over daily appointments, reviews treatment progress or changes, and other important information they need for the day
• when Levi gets back from the treatment they take care of his skin
  • radiation burns the skin
  • you can see how precise the laser by the marks on his spine and head
• also during the time when Levi is out, other things happen like blood draws, line cleaning, and even fingernail clippings
• when Levi wakes up you need to be ready to GO
  • he is ready to leave and asks to get dressed including Ninja boots, etc. so he can "go back to the hotel now" in "Mommy's blue car"
  • he's also getting hungry
• lunch break and playtime
• off to the hospital again for therapy and/or other appointments
• downtime before supper
  • sometimes a nap -- if everyone is lucky!
• supper
• playtime while more meds are given
• skincare, stories, and bed
  • Levi reads the stories... he knows them by heart after only hearing them a few times!
• then the adults need to get to work getting overnight feeds ready and prepping for the next day
  • although Levi is eating, he needs supplemental nutrition through his feeding tube
  • this is also the time for some grocery or pharmacy runs, email checking and general catch-up

This has happened EVERY.SINGLE.DAY. for SIX.WEEKS.STRAIGHT.  

We can't express how proud we are of Beth, Zack, Owen, Levi, and all those who have supported them.

(That includes you!)