Yup, we felt it…being on the fifth floor of a hospital built on rollers, we felt significant swaying from this afternoon’s 7.2 magnitude earthquake!  Other than rattling our nerves, everything is well here at the hospital but we haven’t been home yet to check for any damage.
The new chloral hydrate regimen worked pretty well the first night with Evan sleeping through the night. Unfortunately, these last two nights, Evan woke up at 3am with a bowel movement.  Both days,  he stayed up from 3am till nearly noon until finally crashing after more than eight hours of his contractions.
Over the past two days, we placed Evan in the wagon and took him for some rides around the pediatric floor.  He enjoyed the movement of the ride and even had his eyes slightly open to see the bright lights and activity around.  This is something we will continue to do daily.
Today things were a little better.  Evan took a couple of naps on his own without drug.  In fact he has been down for three hours as of now.  Dena came by again and really worked him over, even climbed into his crib for several hours. He appeared to tolerate her more than the last few visits and perhaps even enjoyed it.  We saw Evan’s eyes peak open a few more times.
Today his Baclofen dose was increased by 30% and will continue to increase every three days up to 40mg per day (he’s at 32mg as of today).  This is the muscle relaxant which we hope will reduce his stiffness and contractions.
When the doctor came in this morning, he again brought up the idea of transferring Evan to Healthbridge.  It is a pediatric medical and rehabilitation hospital in Orange, about 25 miles from our home.  We hear they have wonderful programs from which Evan will benefit when he is ready.  Until then, our goal is to get Evan to be more calm and to adjust his baseline to reduce the extremes in his day.