It’s been a few days and by now you know that means that everything is ok.  We’re getting him up to 3 cans of food a day but he really needs at least 4.  Tomorrow we are going to get there, and I think he will keep it all down.  I talked to Robin, the nutritionist for Quram today and she agreed that we probably should talk to Dr. Galan about maybe trying Mikie on Reglan for a while to get his stomach moving a little bit more. We’re going to give it a few more days to see if we can accomplish 4 cans without resorting to more drugs.  Robin stressed how important it is for Mikie to get his nutrition so he will be strong enough to do necessary things like coughing.  She also reinforced her belief that the Peritive is the right food right now and that we shouldn’t dilute it with water.  I’ll try to resist and instead will be sure to flush the lines after each can with plenty of water.

Otherwise Mikie is doing great.  He gives the best hugs and has been in such a good mood lately.  He’s alert when he’s awake and sleeping well at night.  It’s been a few days since we have seen any seizures.  We’ve been leaving the pulse-ox monitor off during the day as he just hasn’t needed it.  We really don’t need it at night either but it gives us great peace knowing that we won’t wake up in the morning to find that Mikie has sneaked out on us.