What Is To Come: Figuring Out How to Come Home

Since we are in our last week of Greyson's feeding program, we have begun discussing what needs to continue and what needs to be done when we get home.  The Children's Institute would like to see Greyson once a month to track his progress and be the "hub" of his eating issues.  We've been working to find a program that incorporates an OT, SLP and a dietician to work with Greyson cohesively, and more frequently.  We're trying to set up a model where his therapists work closely together (including his early intervention therapists) so we are all working on the same skills and using the same techniques.  That is a work in progress....

There has been discussion about bringing Greyson back next spring or summer for another intensive stay, one that is around 6 weeks long.  Greyson was very successful learning the routine of a mealtime and tolerating small amounts of food for this stay, so the goal of another intensive stay would be to increase the volume of food that he is eating to (hopefully) begin tube weaning.  We will re-evaluate next spring and decide what's best based on how our winter goes and how much progress we can make ourselves at home.  

One thing I am concerned about is how I am supposed to fit everything in once we are home.  I have created a schedule for myself to stick to as far as housekeeping, working, and scheduled mealtimes go, however with multiple therapy appointments a week, things could get hairy.  I'll have to figure out a way to fit in once-a-month trips to Pittsburgh, frequent trips to Philadelphia for his follow ups at CHOP, and figure out how to do all this with the coming cold and flu season.  I'll be crossing that bridge as it comes, as I always do.