Tons of Frustration as Arthur is Eating Less

As you may have read, Arthur's liver numbers came back normal last week. And indeed he looks much healthier and acts much healthier. He's been very active and assertive, even trying to wrestle his brother (which we break up, because of fear it will dislodge the feeding tube). He even nags us for food, but then when we go in the kitchen and give it to him, he eats maybe two licks or just rubs our feet.

On a good day, he's eating maybe 100 to 125 of the 250 calories he needs on his own, but the past couple of days have not necessarily been good days. This morning I spent about two hours trying to cajole him into eating, after he woke me up and begged for food.

Here's how it went:

1. 7 a.m.: Arthur knocks on the bedroom door and wakes me up (Liz is asleep in the living room where she sleeps to watch the boys at night). I get up and open up a can of Solid Gold Tuna for Arthur and dump some dry food for Beowulf. Arthur runs over the bowl and starts eating, but after a few licks, he tries to follow me back to the bedroom. I leave the food out for an hour, but he doesn't go back.

2. 8 a.m.: I go back into the kitchen weigh the food bowl (it's like .5 ounces lighter than it was so maybe he got 15 calories). I then put down dry food for Arthur. I make him follow me in and put tuna flakes on top of the kibble. He eats the flakes, but none of the kibble. I try this several times. Each time he follows me back to the bedroom rather than staying in the kitchen and eating. I sit on the kitchen floor with him for a while. He still won't eat.

3. 9:30 a.m. I tell Liz Arthur needs his full 83 calorie tube feeding again. The same thing happened yesterday and last night for his night feeding.