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

What day is it?

I had big plans of updating our progress in Feeding 101 on a daily basis, but I had misjudged how exhausting doing something new can be. Like when you start a new job, or when you become a new mom--you figure it's a good day when you remember to brush your teeth. That's where I am. And, yes, I have brushed my teeth at least 7 times in the last 7 days.

So, today we finished our first week of intensive feeding therapy. Each day, the goal is to sit down with Annie 4x, for 20-25 minutes, and in a calm, relaxed way introduce new food. Yeah, right. Smile, chat, ignore the gags and watery eyes. "Annie likes crackers. Annie likes apple. Annie likes carrot. Annie likes peanut butter." Fortunately, she keeps touching the spoon with her lips, occasionally opens her mouth a bit, and continues to persevere through the gags. She really has been a trooper, and quite patient through all the "newness" of this routine.

And, in an effort to prepare her little system for real food, we started feeding her a combination of 1/2 her regular formula mixed with 1/2 real food--or what is known in g-tube circles as a "blenderized diet." I think the plan is to transition her to a complete blenderized diet, maybe next week. Her calories have been cut 50% so that she might develop an appetite, and her weight is being monitored closely. It's assumed that she will lose some weight as she learns to eat, but I think that especially in Annie's case where she is already on the lean side, they really want to see her begin to eat significant amounts of food...quickly.

Today she had tiny licks of peanut butter, strawberry jam, applesauce, and ketchup as well as tiny bites of carrot and apple. She didn't like the Pringles or Cheez-its. She hasn't been too keen on the Veggie sticks either for some reason. So tonight I went to the store and slowly pushed my cart up and down the aisles trying to come up with something that she might like. I got a few different kinds of yogurt, flavor-blasted goldfish, a few different kinds of baby food, and dill pickles. A few people have mentioned that sometimes kids who haven't eaten in awhile like the strong flavors. We'll see how it goes tomorrow.

My prayer is that she will turn a corner in the next few days--tomorrow would be good--and open her mouth and willingly receive a spoonful of real food. I would so love to have her eating real food again. And I know I need to be thankful for the progress we've made--but she needs to begin to get the calories in her mouth--not just on her shirt--sooner rather than later!

Grateful for all your prayers,

Jean

Gracious words are like a honeycomb, sweetness to the soul and health to the body. Proverbs 16:24

Day 3

Annie is getting into a groove of three practice meals a day. I put her in her Activity Chair, open one of her favorite books and begin to read. The catch is, I don't turn the page until she tastes, licks or otherwise touches whatever I put in front of her: a spoon, a spoon with a bit of yogurt, a chip, a veggie stick, a small carrot, or a slice of apple.

It goes like this: "Brown bear, brown bear, what do you see? I see a Red Bird looking at me. Brown Bear loves apple. Mmmm. Annie loves apple, too." Then I put the apple in front of her, and wait for her to lean forward to taste--which she does, most of the time. Anyway--she's doing well, and hopefully, soon, she'll be actually biting, chewing, eating and swallowing.

Meanwhile, you're praying, right?

Jean

Day One

We had three appointments through the day to work on feeding. The first two went pretty much like they do at home. I offer the food, Annie throws it on the floor. Actually, she did taste the apple twice. Under duress. We taped it so they could document her progress, and to brainstorm ways to overcome her charming behavior. Actually, there are times at school with nurse Patty and at home with me that she IS cooperative and does taste food. Today just wasn't one of those days.

The last appointment was to nail down how/when we'll titrate her calories down. Typically, when you've cut kid's formula calories in half, that's when their appetite kicks in and they begin to be interested in eating. We're going slowly so that we don't add undue stress to her system, but not so slow that she doesn't make progress.

Please pray that Annie stays healthy, and that the therapists have wisdom in everything. This is a group effort--and I appreciate your work in prayer!

Jean

Then many will give thanks on our behalf for the gracious favor granted to us in answer to the prayers of many. 2 Corinthians 1:11b