Lunchtime

Tom took Lukas to the model train expo at the Anaheim Convention Center today, so Natalie and I got to spend a quieter morning together. I try to feed Natalie by mouth when there are few distractions, so I usually do it when Lukas is napping. I have to pay close attention and listen for her swallowing to make sure she doesn't aspirate. Here are before and after shots. She likes the apple/cherry sauce the best, detests the green beans and will tolerate the chicken dinner if I mix in some of the apple/cherry. The chicken dinner is still a little too thick for her to handle, so we add a few drops of water, or the applesauce, to make it a consistency she can handle. I'll try the green beans a few more times before giving up for a couple weeks. She loves squash and sweet potatoes, so it isn't all fruit that she enjoys. I think she ate about 1 ounce of food in about 20 minutes. She was happy during the feeding, but it's still a challenge to get her to continue to take food...she thinks it's a game and doesn't see the necessity for it, even though she's hungry. She kept making the sound that she's hungry and doesn't understand why I don't get her bottle for the tube feeding.

Then she sees me shaking her bottle for the tube feeding and gets very excited, because she knows that's what makes her tummy feel better...the feeding by mouth takes too long and is too much work. She loves watching us eat and wants to put her hands in our food when we hold her at the table, so hopefully she'll understand soon that eating will also fill her stomach, and the tastes are much more interesting.

The last time we saw her GI (gastroenterology) doctor a few weeks ago, he asked if she is ready to be pushed (as in limiting tube feeds to make her hungry so she will learn eating makes her full). Sarah (her swallowing therapist) and I don't feel she's quite ready. It is still a lot of work for her to feed by mouth. The key point is, if she can stay well, she makes improvement. Every time she gets sick with a cold, she stops eating by mouth because it's all she can do to handle the mucous from the cold...and then we take steps back in her therapy. During e-stim, she takes about 3 ounces in 30-40 minutes because the e-stim helps her swallow; at home, I've been giving her 1 ounce by mouth a day. Next week I will try to increase it if she stays well.