Friday, April 10, 2015
Back Home and the Real Work Begins
Secora was discharged from her feeding therapy program just before Easter. Yay! It was very exciting to be able to go home after being away for so long, but it was also a little bittersweet to leave new friends we'd made in Dallas. Secora had a lot of "mood swings" between being really happy and really sad and has already asked to go back and visit.
Eating-wise, we made a lot of progress, but not quite the progress I had envisioned before we went. This was partly because of her hospitalization and big set back before we went up there. A lot of time was focused on simply keeping her safely on 100% oral intake. She went in with her calorie count low and her fluid intake extremely low. Those had to be brought up to adequate levels before they would even introduce a new food. So at the end of it all, the "new" foods we added in while we were there were mostly foods she ate recently, but had dropped with the last illness. We did get her eating sweet potato fries and got a good head start on eating cheese and plain noodles (3-4 bites at a time).
Mostly, what we accomplished was establishing a steady routine and plan for introducing new foods as time goes on. This is where we’re using her resistance to change as a tool. Her meals are extremely structured now and that clear expectation and her hesitation to deviate from what she expects to happen have made it infinitely easier to get her to try a new food and then to continue eating it over time.
All of that means that the real work is just now starting. She has anywhere from two to four hours of work to do each day. Thankfully, all of this is now happening at home. Four or five days a week we do about an hour of dedicated OT work. This is when she explores a new food (just playing it with, no pressure to eat), is exposed to various scents and textures and works on core strength. Four or five days a week, there is also a “speech” session. This is a 30 minute session where she’s required to taste a new food and it comes right before a mealtime. The new food is always something she’s already explored through OT. We talk about the food and where it comes from and if there are different forms of the food, then she’s required to go through the whole SOS progression (look at it, smell it, touch it, kiss it, lick it, take a bite of it). With each step she earns the corresponding parts to a Mr. Potato Head and she really enjoys assembling those in crazier ways each day. My job is to pick something she’s capable of eating. For instance, I was told to just not even think of green vegetables for a long, long time. Just like in the feeding program, she has the option to quit cooperating, but if she does that, she has to sit and wait out her 30 minutes. Three times a day, she has a structured meal where Josh or I sit next to her. She doesn’t get to pick what she eats for these meals or the size of her bites. It’s almost always 2 preferred foods, a challenging food and a drink. These meals last for 25 minutes (she has a timer set) and she has 45 seconds to finish each bite (this is because she started pocketing food in an effort to avoid eating while still keeping her reward). She’s generally watching a movie or playing a game during these meals as her reward so that it can be immediately paused when doesn’t follow the rules and restarted when she complies. Not my ideal choice in reward, but I can see why they gravitate towards it because it’s really easy to remove quickly. Our interaction with her is full of praise and silliness as long as she’s eating. When she stops, she gets frequent reminders in a neutral tone of voice, “take your bite” or “I will restart your movie when you finish your bite”, etc… From my point of view, it’s all really monotonous and boring, but I can’t deny that it’s working.
I’ve been told to expect this level of structure to be necessary for months, at the very least. I was hopeful for more immediate results when we entered the program, but the reality is much more long term. We have tools to keep making steady progress and to help prevent future hospitalizations or recover oral intake and lost foods if she does have another big set-back. It will be a very long time before she’s eating like a normal kid or before we can jump right into "here's this new food off a restaurant menu, try it", but there is a light at the end of the tunnel even if it’s a long tunnel.