Day 10
Here's an overview of Annie's progress after a week and a half of feeding therapy:
1. She willingly touches an empty spoon by leaning forward and either touching or biting it.
2. She is off the food pump during the day and receives boluses, bringing the 2 1/2 hr long feeding times down to about 1/2 hour or less.
3. She is able to sit at the table in her Activity Chair for 25 minutes at a time--me reading to her while she tastes and tries new foods.
4. Before feeding therapy, she would bite carrots and apple consistently, as well as occasionally bite Cheez-its, Ritz crackers, or goldfish. Now she does all of that, and is getting proficient at eating peanut butter from a spoon or dipped on a carrot or apple. Today she was also taking tiny bites of Pirate Booty, and then chewing and swallowing it.
She had been on 30% calories for a few days, with the thought that decreasing her calories would kick-start an appetite. Then we discovered from dietician, Kim, that one of her seizure meds, Banzel, is "the worst" at suppressing a person's appetite. So, we had to rethink our approach and expectations, with the understanding that because she may never have a huge appetite, self-feeding may take more time. But we know that things take time, eh?
All in all, I am encouraged by her progress, and feel like I finally have some tools to help her learn to eat again. Karen Quinn-Shea and Danielle Dolezal have been wise and patient coaches in helping Annie and I work on this. I would recommend them to anyone looking for help in overcoming feeding aversion issues.
It's interesting, as I was talking with one of the clinicians today, they said that when a decision is made to place a g-tube, there should be a plan in place as to when or how the g-tube comes out. In other words, let's not send kids home with g-tubes without some support in getting them off of them, if it's at all feasible. Now, in Annie's case, she gets so many meds, it seems like she will always have a g-tube--a reality I can deal with. She also has frequent episodes of seizure activity and medical low-points, all of which make having a g-tube almost a necessity. But, to be able to eat by mouth, with her family, at the dining room table, is such a quality of life issue, and I am very happy that we are closer to achieving that goal. Very happy.
And, very tired. Thanks again for all of your prayers. We know she has been virtually seizure-free and healthy and cooperative and patient because God has answered your prayers.
Jean