Day 71 - Ever Watchful

Daniel was not nearly as hungry today as yesterday, but he did muster (mustard) a bit in the afternoon and ate some chicken. A few of the other items we tried for lunch were experimental in that we weren't sure if he would like them or not, but they had a lot of protein and calories so we wanted to give it a chance. We talked with his nutritionist about some alternatives to the Breeze Boost drink that he consumes massive quantities of.  We wonder if he will eventually not like the Boost Breeze as much and wanted to have some alternatives to this drink because it's so packed with protein and calories in a small 8oz package. He will remain hypermetabolic for a as long as a year. I realize now that getting as much food in him as we need to will take diligence on us once he comes home. I know he can eat and graze all day as he has in the past, but we intend to track his intake closely and will probably have to sort of "force" extra food on him.

Around noon time Dawn discovered a large bluish-green "thing" under his top lip. We had no idea what it was, but it looked fuzzy and alive so we attempted to remove what there was of it and inform the nurse who got a doctor to look at it. Once the orders are given a wound culture will be taken to see if it grows and what maybe it is. It seemed at first like it might have been the casing to a pill or something else, but we aren't really sure and it looked like it had been there for awhile even though we've been brushing and doing other things with his mouth (MPA and lip stretches and what not). Anyway maybe that was also causing him some discomfort and making it hard for him to not want to eat.

Today was much like other recent days. We got up and walked about, ate some, watched some videos, wore our devices, OTs came by and worked our arms and stretched out neck. The usual.

Later today we may get a visit from Uncle Gordon and Aunt Karen as they drive through on their cross-country quest to retrieve a van for their son Joshua. Pictures may follow.