Monday, May 29, 2017

Week 197: Duck to water

On Wednesday, we at long last had Lemon's feeding therapy evaluation. It had two parts. First, Lemon and I went into a room and had a "picnic" of foods that I'd brought from home, while two therapists watched through a pane of one-way glass. At the outset, I should say that Lemon was not fooled by the one-way glass for an instant. Pretty much as soon as we sat down, he looked at the "mirror" and said, "Is that a window? Is someone back there? I think there's another room over there." But, he wasn't really bothered by it, and ate a very typical snack: enzymes and one slice of orange pepper.

Next, one therapist went into the room with Lemon while I sat behind the one-way glass with the other therapist so that she could learn more about Lemon and his situation. Lemon had an absolute blast, because they were doing all kinds of silly things--blowing bubbles through a straw, making faces in a mirror, drawing on the mirror with ranch salad dressing, etc. He had the undivided attention of an engaging grown-up for about 45 minutes, and was pretty much in his element. Of course, the point of all this was to actually evaluate what his issues with eating actually are, but Lemon certainly would never have guessed that anything serious was going on.

What I learned is that, as I thought, there is nothing mechanically wrong that should prevent Lemon from eating. I'll get a more formal evaluation soon, but the things the therapist hit on were that Lemon doesn't feel like he's "good at" eating, and he doesn't like to do things he's not good at (true!). Also, since he's been tube fed, he really doesn't quite have the connections between feeling hungry, eating something, and feeling full worked out. It sounds like the broad strokes plan is to practice various things so that Lemon feels more confident about eating, and also to rework our tube feeding schedule/volumes somewhat to help Lemon establish the connection between hunger/eating/not feeling hungry anymore. Luckily we have a clinic visit coming up in a couple of weeks so that we can talk to our dietitian and get her input on how we can adjust the tube feedings without losing ground on nutrition.

In other news, Lemon learned how to ride a bike this weekend. Those of you who know me from my cycling past, will appreciate what a thrill this was for me. It really was amazing to watch. Two weeks ago, I took him out with his new two-wheeler and he could only ride at all if I held onto the seat the whole time and ran along behind him. Then, we were busy for a couple of weekends in a row and I didn't have the chance to practice with him. On Saturday, he hopped on the bike and almost immediately could ride short distances without help:

Then, today, after only one more day of practicing:



Crazy, right? And the cycling gene seems to have found Lime as well--his legs may be too short to pedal yet, but his own personal tricycle technique is remarkably fast.

And, as long as were going all in on cute video, here's one last one of the brothers in a park.
We did our last day of Cayston yesterday, finishing out 21 days. Lemon is still coughing occasionally, but we're pretty convinced that it's allergies at this point, not any lingering respiratory infection. Time will tell, I suppose. Fingers crossed that was it for a while and we can enjoy a few weeks of summer while only doing therapy twice a day!

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