Fighting to Eat

This is a lot harder at home than in the hospital. At the hospital, they brought in a tray of prepared food that we had to measure out and serve. At home, we have to cook the meals and try to measure them out. The diet consists of a LOT of fat. The trick is to try to incorporate a good bit of the fat into other foods. This leaves less fat for Gracie to eat stand-alone but it also makes it very important that she eats the food with the fat mixed into it!

(The pictures today are prior pictures - however, they are some of my favorites.)

This morning we tried scrambled eggs with mayo and oil mixed into it. I think there was too much mayo and oil for the amount of egg that Gracie was allowed. She took a few bites because it was a food she liked in the past - however, today it just didn't taste right! Before the hospital she was eating butter on it's own, no longer. We now need to melt the butter and mix it with the heavy cream. Of course, she isn't drinking that either so we need to put it in a syringe and force feed her. Tom has gotten quite good at mixing in some flavor extracts to make it better. Gracie puts up a fight until the syringe gets into her mouth and then she stops fighting - thankfully!

It seems like meals are consuming all of our day. We got up and started preparing breakfast and medications. By the time that was done, Gracie was worn out and took a nap. While she was sleeping, I ran to the grocery store with Rita. We came home, played for a bit and then started in with lunch preparations! The girls are currently taking a bath and we are trying to figure out what to make for dinner! I'm glad we have a few days to work this out before everyone is back to school and work.

Grace has now lost over 3 pounds. It may not sound like much but this is a drop of over 10% of her body weight in just a few days. She was walking around this morning is a pair of jeans and they kept dropping off her butt! Gracie thought it was rather funny that her pants would not stay up. Her skin is starting to sag off of her body in spots.

We have been fighting with Grace to drink as well. She is not a big fan of her keto fluids. The only thing I can get her to willingly drink is decaf green tea with the liquid saccharine. She liked hot tea with sugar before so this seems the same to her. She keeps begging for juice and hot chocolate - definately not on her diet. She started to drink diet soda - she is allowed up to 12 ounces of diet soda a day. She laughed yesterday that the bubbles kept going up her nose. The effect of her not drinking are showing up as her skin dried out and is peeling!

Gracie is returning to herself more now at home than she was at the hospital. Her energy level is still much lower than normal but when she gets burst of energy, our same spirited little-girl pops out. We have seen many hands on the hips today and lots of silliness. Gracie is thrilled to have Rita to play with (and vice-versa). Gracie is singing and talking a lot. She did not do much talking in the hospital and her normal self emerged only for very brief periods so this is a great improvement!

Rita is having her own set of troubles with the diet - namely, we were not letting her eat things in front of Gracie that she can not have. Rita protested and it reminded us that Gracie will need to deal with kids eating things in front of her that she can not have. Predictably, Gracie wanted to have whatever she saw Rita eating. We had to tell her no and she cried. However, she will face this every day soon enough when she returns to day care! Rita was happier when she got to eat her own meal.

Thank you to everyone who is following along and sending their prayers and good wishes for Gracie.

Marie, Tom, Rita and Gracie