Progress

Emerson had his most recent modified barium swallow study on Oct. 2. We learned that he was sitting pretty comfortable with no decline in ability, but no improvement either. It was because of this, that our Speech Therapist Pamela recommended we challenge him a little bit - oh so catiously - by upping his thickened liquid by two ounces a day in the form of anything other than his formula (aka Kiddie Milk).

The rationale for this is that if we can give him an additional two ounces a day, every day for a month with no adverse side affects, then in November we can add another two ounces per day. With each ounce of thickened beverage that he consumes orally, we can then remove an ounce that he gets via the tube. In a completely perfect world, one could reason that if we could get him, albeit slowly, to consume all of his liquid in a thickened state - with no issues - then we could remove the tube. It's certainly something to work toward.

So last weekend we tried some organic, low sugar juice. Tonight, for the first time ever, Emerson had Grape Kool-Aid. Just two ounces, and he thought it was perfect. "That tastes really good, Mommy."

This is also the first night he agreed to reinstate the toilet for his more complicated waste removal.

Progress, no matter what form it takes, is progress.

When Toddlers and Scissors Mix

After a lengthy discussion, Emerson now knows the correct answers to the following questions:

1. Who cuts your hair? Miss Alice.

2. Who doesn't cut your hair? Not me!

The Blessing of Patience

I have never been a really patient person. It's something that's worsened as I have gotten older; the desire for results and immediacy often marring my attitude and view. And then Emerson came along and then challenges between T and me that forced me to slow down and embrace patience. I have had to redefine success and focus on the day at hand not the ones that may come my way. Or may not. It has felt slow--painfully slow--at times. And yet, I know I am on this journey to learn and this is one of the lessons I am to take with me.

So, after much time caring for Emerson and his dysphagia, after training myself that a plateau can be a good thing (it's better than regressing, remember), after reminding myself to walk the careful balance between hope and realistic expectations, we had movement today. Movement to the plus side of the page. Movement that will expand Emerson's diet into a greater realm of normalcy and one that tonight, let him drink from a straw.