Day Eight: Team Meeting

Today was our first team meeting where the ST, OT, psychologist and dietitian meet altogether with me. I asked a few questions that I pretty much knew the answers to but needed to be sure that it wasn't just my assumptions but their explanation.

The first was why I can't give ZZ food outside the program this week. Last night while I was eating he wanted a bread stick. Well, I can't refuse him food! He just wanted to play with it and be part of the crowd so I gave it to him. Right now they said it's not going to matter as much, but especially as I start doing the feedings in the program, they do not want him to confuse what is expected of him here with what is expected elsewhere with relation to food and eating. They also don't want him to be full from "grazing" and not participate because of that. Of course, they acknowledged that this not a worry with ZZ since he just licks and nibbles. I'm interested to see if this rule applies to the week-end this week. Last week-end, we kept things as normal and he actually did a lot of nibbling and seemed to enjoy himself throughly at mealtimes.

I also asked why we are going back to feeding him rather than having him handle the spoon as well as why we are using pureed food over what would be age appropriate. Like I said I think I know the answer, but I wanted to be sure. Beyond the obvious that he wouldn't give himself bites of things he doesn't want, we talked about where he is at in his feeding "life." Since he hasn't gone through the stages of eating, we have to go back and take him through them. He is already able to drink from a cup, sippy and straw so we don't go back to sucking on a bottle, he hasn't however taken pureed food from a spoon so that's where we start. Also the first day the ST mentioned that pureed food is higher in calories per spoonful (because it's denser) and so it's good to be using it when we start to wean from tube feeds. They do use pureed "real" food and soups rather than baby food. I like that because I think he'll transition easier and I think its easier and cheaper to just puree what we are having for dinner anyway. This week they have tried pureed fruit cup because he took the juice from it last week with no problem and tomato soup because he eats spaghetti sauce and salsa easily at home.

I also asked about how we know if ZZ has a physiological problem with swallowing versus all psychological and if they would react differently. The psychologist said that time is the main way they tell beyond signs of aspiration, etc. If his swallowing issues are habitual, he'll get over them quickly with their methods. If they are physiological he will continue to have difficulties and it will be a slower process. I mentioned that the Dr said his fundoplication is tight and that's why I asked. She said he'll have to be taking in a lot more volume before we would know if that's causing a problem. Everyone assured me however that they are always watching for indications of swallowing problems and that they hadn't seen any with ZZ yet.

The psychologist feels like based on the team meeting and her own observation that ZZ has some hypo sensory issues (I think that's what she said). In other words he needs more stimulation to help him be comfortable eating. She said this gives her some direction in determining his protocol. She said they can't make a lot of changes at once because then they won't know which is helping and today they had made a change so she would take things a step at a time. I asked her what the change was today and she said it was to take away the toy/video before each bite and give it back as soon as he took a bite. I noticed this during his OT feeding. This is to help him understand exactly what will happen when he takes a bite rather than perhaps just think that they are trying to make his life miserable by asking him to eat and taking away all the fun.

Therapies:
ZZ's morning feedings were fine with the dry spoon and then total refusals (crying for mom, moving his head, hand in front of mouth, etc.) for the rest of the session. Even in ST when she put food on the nuk brush he spit it out and refused. For the first afternoon session he started crying from the beginning even on dry spoons although I noticed he really wanted the puzzle she had out for him. After the session we went outside and he mentioned to me that he wasn't going to take his bite. I told him if he did he would get to watch Dora and play with that cool puzzle. He said he didn't want to see Dora and he didn't want that puzzle, so I asked him if there was a really fun toy he wanted to play with. This actually pulled him out of his grump and made him think. He said, "The rescue pack!" I told him that if he asked Miss S for the rescue pack, she would let him play with it when he took his bites. I don't know if our conversation had anything to do with it but we finally had a break-through during his afternoon feeding. He took his bites, played with the cool puzzle. At one point he started refusing and she asked if he what he wanted to play with. He remembered the rescue pack and was willing to take his bite to get it. Toward the end of the session he did spit out a bite and when she took everything away and told him he had to try again, he lost it and refused the rest of the time. But overall that is the most progress I have seen so far and the psychologist said she could tell he for sure understands now what he'll get if he eats his bites.