It’s been a couple of days since our last update. We were hopeful to post something new and exciting about Evan’s progress, but there is not much to report.
We visited HealthBridge (see previous post) last Thursday.  Our first impression was more of a kindergarten than a hospital.  The staff was incredibly friendly and caring, and it was clear that they would do their best to advance Evan along to as far as he can go.  It’s actually a fairly small facility and after subtracting the long term residents they only have nine beds that turn over on a regular basis.  We are near the top of the waiting list and Evan will move there sometime in the next few weeks.  In the mean time Evan continues to receive wonderful care here at Children’s Hospital and we are in no rush to leave.

Bath Time


Before the weekend we got the post-PEG (see previous post) go-ahead to give Evan a real bath, so he’s had one each day. We fill the tub with blankets and towels to make it soft and comfy for him. Evan’s bath last night was so relaxing, he fell asleep right afterward!
The Docs continue to adjust Evan’s multitude of meds in search of the elusive “perfect cocktail”.  Recent changes include upping the Baclofen to the max 40mg/day.  He is a bit more flexible, opens his eyes more often, and has longer moments of calm between contractions.  They have also added a small regular dose of antibiotics to aid his digestion. Also beginning tonight we are going to eliminate the scheduled dose of chloral hydrate and try to get him to sleep for longer periods on his own.  May take a few nights to get him on a more regular schedule, but it’s worth a try…