Right now she gets 90mL of water with Miralax and Prevacid first thing in the morning, 30mL of BD (blenderized diet) with 160mL of water at 11:30 and 5:30, and 170mL of BD and 20 mL of water with a vitamin and Prevacid at bedtime. That's about 30% of her calorie requirements. Is she making up the remaining 70% orally? No, but it will take some time, and we're not really counting oral calories anyway. What's more important is that she doesn't lose weight, she's happy and has energy. She seems tired to me sometimes, but is in a good mood. I am hoping that she starts eating a little more volume. She has a doctor's appointment tomorrow and I hope that he doesn't get too concerned about the weight loss. This will be a process of perhaps going back up on tube feeds if she has lost weight, then decreasing as she maintains her weight. Karen says she has no doubts that Catherine will be an eater, she just isn't sure about the timeline for that. She said Catherine isn't eating the volume that she normally sees and that we should expect some more weight loss, and that's ok, we'll adjust accordingly.
Thank you for your continued prayers for us and for Catherine! I won't update everyday, but you can all assume that no news is good news!