Thursday, November 18, 2010


When I was still working as a Music Therapist, my jobs were always in fairly limited settings--- a maximum security psychiatric hospital, a residential psychiatric treatment center, an Alzheimer's unit. . . I learned to think in terms of what we COULD do instead of our limitations. Sessions were set up to challenge patients but also set up to promote success. When a teenager I would see in 1:1 sessions would approach me about learning how to play an instrument as part of his/her therapy, and I asked him/her if learning to read music or being able to play was most important, and I was usually met with a surprised look, but a relieved look. The goal was not learning specifically to play the piano or guitar or whatever, but to foster a longer attention span, to organize thoughts, to promote interaction, to promote frustration tolerance. . . and so on.

And here we are in FPIES, potentially looking at another fail, though I am still holding out hope for a pass. And tonight I have decided to gain a fresh perspective and take a breather. Tonight, I will say to myself, ok, what CAN we DO? We have a small roster of foods but it is something. It is time to focus on what is and has been safe and try to expand our menu without adding any new foods.

Next week, we will consult with the dietitian about ways to get the most "bang for our buck" out of what we DO have, and see if there is a way to avoid introducing formula when B turns two. I will be back in the kitchen with our fool-proof ingredients, and I WILL find new ways to use them, new textures to introduce, and maybe ways to improve the nutritional profile of B's diet, simply by using our foods in different ways. We have been contemplating adding enzymes-- maybe this will help B get out of this failure rut? And we will do our best to stop asking when she will outgrow this, or IF she will outgrow most of this. . . we have to focus on WE CAN. Hopefully, seeing allergist and GI next week will also give us some ways to move forward, some ways to move past these frustrations. Some new ways to say YES. . .I know many foods are not safe for her today, but I have to tell myself that SOMEDAY they really could be.

When at the store the other day, B was looking at some interesting-to-her food (don't remember what) and looked at me with her big eyes and said "Maybe one day will be good for you. Might be nice!" (She is at the age where "you" means "me"). One day, we will tell her yes. But for now, I need to create more to say yes to, even if it is only beneath our "safe food" umbrella. One day, hopefully more, much more. . . But today, we CAN do THIS!

1 comment:

  1. Amanda- this would be a great post for PIC! :)
    I agree- We CAN do this!!