The Long Haul

I am learning that this process of eating will require me to be working with Ben for the long haul. There is no quick fix for him. His therapist estimates that he has the feeding skills of a 6-9 mo. old. He does not have a clue how to chew. I was initially hoping that Ben would be able to eat something more than purees when he left here, but I can see that will not be the case. He did tolerate grit in his food yesterday. Bread crumbs were added, and although soggy, they still gave some texture to his food. I still hope we can approach 3rd stage baby foods soon, but that may be a very lofty goal. We are doing different massages on his gums and cheeks, and some exercises to teach his tongue to move back and forth. He is also using a chewy tube to learn to bite on. These exercises are done at the beginning of each feeding. I went in to learn to do those today, but want to practice some more. My presence in the room threw him off again.

A couple of days ago, one of the psychs here told me about a study being done at Kennedy-Kreiger Institute in Baltimore. She explained that they thought maybe the hunger/satiation area of the brain was possibly underdeveloped in some of these non-eating kids. That area is supposed to be in the cerebellum. That reminded me that Ben had a small gap in one area of his cerebellum when I was pregnant with him. Also, the fact that he hasn't really ever been moved by hunger in his life makes me think that he may have that situation in his brain. I am hoping to find out more about the study soon. It would change the way I look at things I think.

On a good note, Ben ate well yesterday. He threw up in his first feeding, but they gave him pureed tomato, pasta, and rice. I think I might have the same reaction if I was given that for breakfast. I suggested easing him into the day with more breakfast like foods. He kept the rest of his meals down, and is back to taking larger volumes again. Yee-haw!

The Kiwanis Club also came yesterday and provided Christmas for the inpatient kids, and day patient feeding kids. I was still reeling from his sad first feeding, and the fact that the hunger/satiation area of his brain may not be working right, but found that my attitude changed when I was overwhelmed by their generosity. I was amazed by the toys they gave Ben. I have learned a lot about the difference generosity and service can make in the lives of others. I hope I can pay that forward sometime soon.