Getting Ready to Move…But Not Tomorrow

Well…our half day of busting Ethan out of the hospital yesterday turned into a 3 hour trip to home and back.  Ethan's feeding schedule is such that he cannot be off his feeding pump for more than 3 hours.  So, we made the best of the situation – we tested getting Ethan in/out of the van, the new wheelchair lift to get Ethan in/out of the house and maneuvering him around in a wheelchair (the hospital loaner chair – more on this shortly).  
The home modifications are perfect!  The best part of the home visit was letting Ethan "chillax" on the couch while we watched our dog, Cincy, lick him from head to toe and then snuggle into his side and join him for a brief nap.  
The time at home was full of many emotions and we did not realize how exhausting it was until later that night.  An afternoon full of emotion and physical effort.  We were successful!  As we expected and hoped, Ethan's discharge is being adjusted back a few days to allow for his feeding schedule to become more tolerable.  Ethan's new discharge timing is later this week – Thursday or Friday.  This is good news as we just need a few more days to get all of the details in place to be successful at home.  With the home modifications completed today, we move into the next phase – equipment delivery (hospital bed, lift, feeding pump, custom wheelchair, etc), home nursing support and discharge instructions.
Today, Ethan received his custom wheelchair—goodbye hospital loaner chair
—and what a difference!  He spent 5 hours in his chair today looking and feeling very comfortable.  With features such as Tilt In Space, Honeycomb Seat and adjustments specific to his body size and shape, the chair becomes part of him providing comfortable support.  The chair has metallic blue supports and the back cushion is embroidered with his name.  He looks really good sitting on his new mobile throne.
It is hard to believe we are down to the last 3-4 days and nights of our time in the hospital.  As with each of the transitions we have gone through already, we know there will be a settling in period before feeling at ease with the new environment.  However, there is a sense of calmness when thinking of having Ethan at home, having all five of us back under one roof, living together.  
We are so appreciative of all of your support over these past 136 days.  Can you believe Ethan's Caring Bridge site has had almost 97,000 visits?  THANK YOU.  Please join us as we move to a more flexible platform at
We know that our journey is still in the beginning phases—with many more transitions to deal with in the future—all on Ethan Time.  We will address them as we have all the others—head on and with the support of Team Ethan by our side.
Staying Strong and Looking to the Future,
Alexia and Scott
For those interested in helping directly with Ethan’s medical needs and expenses – tax deductible contributions can be made at HelpHOPELive which support Ethan directly.