Still waiting to hear about the referral to Shriner's.  However, I did call the GI and ask to have Eve's feeds cut back since she gained 7 pounds in the last year (but no gains in height).  After some miscommunication (he thought I was asking why she wasn't getting taller and told me to wait 6 months until our next appointment), they finally got the right message to him.  AND...he agreed!!  So, he told us to cut back her feeds from 20 hours per day to 18 hours per day.  I don't know why I was thinking of reducing the feeding rate (and time spent getting food), but this is better!  It will give her body a 6 hour break from doing the work of digesting and it gives her more time to be free of the tube and backpack/pump. 

She's been doing well since last Saturday.  It has been warmer these past few days...

(side note: I saw a post this morning on FB about the "unreasonable heat and humidity"...well, they actually said "unseasonable," but I think my brain substituted the better word)

...so she hasn't been as tight.  I did buy a space heater for her bedroom to help when we are changing her clothes in the morning or after a bath so she won't stiffen up.  We're supposed to get a cold snap on Sunday.