Updates on Nolan

so last week our pt gave us the go ahead to take Nolan off the g-tube calorically (hmm, maybe not a real word…). What that means is he gets all his calories by mouth while still getting some fluids (pedialyte) by g-tube until he increases his liquid intake. Once again this is a fine balance since we don’t want him dehhydrated but we need him to be thirsty enough to want to drink…

I was worried about his weight gain because it hadn’t been that great for a couple of weeks and now he would be less 160 (guaranteed) calories. He has become pickier with food in the last few weeks (someone taught him “No” and it wasn’t me!); He didn’t eat all that well last week, there were several days he didn’t meet his calorie goal and his fluid intake suffered a bit as we adjusted to the new schedule. So, as I said as we went to his weekly weigh in I  was just hoping he hadn’t lost weight so we could stay off the g-tube.

Tell us already you say? In typical Nolan fashion he gained 6.5oz which is close to the most he has ever gained in a week. I have no idea how that happened but I am gonna take it. I am also going to try and relax about him refusing food or not meeting his calorie goals and figure he will eat if he is hungry. Let me emphasize “Try”.

I think that may be all the news for now. He remains the most beautiful and amazing being I have ever known.

take care all. Kara, Ronan and Nolan