We have gotten several calls from Kennedy Krieger, keeping us updated as to where we are in the process of "getting there." Currently they have written a letter to our insurance company detailing what Griffin is currently doing/not doing by mouth and via tube feedings. They have gotten some feedback already asking for a specific referral from Dr. Ingerowski, our pediatrician. We are so ready to get Griffin started at KK.
Last night was a terrible night as he threw up several times overnight (lots of late night bathing which Griff just loves.) He's had such great success gaining weight and keeping feedings down since he has been on the Periactin. He has gained 2 lbs. this month alone. The problem though is that he needs to cycle off the medication so that he doesn't build up a tolerance to it. Ideally we would have 3 weeks on then 3 weeks off but Hugh and I just can't do it. The vomiting is just too much to deal with, especially over night. (So THIS is why we registered for so many crib sheets!) He has been off of the Periactin for 1 week as of today. Dr. Fishman (GI dr. in Boston) said that the 3 week cycle is arbitrary and we can adjust as needed.
I started him back on the Periactin this evening.
