As Thanksgiving draws near, and it’s a holiday celebrated around a meal, I thought I’d share some day to day details about living with Koan — particularly food. As I’ve said before, Koan is nonambulatory and also can’t (or won’t) feed himself. He does love food. But, it’s up to his caregivers to get the food ready and to feed him. After ten years, we’ve gotten into some habits related to feeding– some good, some not so good.
Koan loves meal times. Words about food, meal names, and even certain types of food need to be spoken very carefully if Koan is around. A misplaced suggestion of lunch or a reference to feeding will send him into spasms of excitement. Koan is feed in a custom-made feeding chair. It is really cool. It’s very adjustable, and we can change the configuration to make it fit him better as he grows. There’s a large wooden tray we can attach to the front. The tray is notoriously messy. We try to keep it clean, but there always some type of food left on it somewhere despite our best efforts to keep it clean. We can belt him into his chair seat as well — although that never happens. We’ve had this appliance for the last six or seven years. I’m not sure what we will do when he does finally outgrow it.
We ran out of yogurt yesterday at home. This is a pretty big deal because that’s Koan’s primary food. For his evening meal most nights he gets a cup of infant cereal mixed in with four cups of Yoplait yogurt. That’s what breakfast often looks like, too. If there’s a yogurt flavor that Koan doesn’t like, we haven’t found it yet. We don’t buy anything with banana in it because Jeri can’t stand the smell. But, that’s our only restriction. On a typical week during the school year, we’ll buy eight packs (8 units) of Yoplait a week for him. When summer is here it’s even more. It’s not uncommon for us to completely deplete a store’s shelved supply of Yoplait in one trip. I often joke (sort of) that I need to invest in Yoplait so we can recoup some of our spending with them.
A few years back, our wonderful private occupational therapist got Blendtec to donate a really awesome blender to us. The idea was that we could blend up whatever we were having for supper and give it to Koan. We had no idea the value of this device until one of our friends recognized it from the “Will it blend?” YouTube series. I had no idea this was even a thing. I’ve since watched a couple of these videos– they blend iPhones, golf balls, marbles, etc… the Blendtec shreds them all with little trouble. After viewing these, I was a little worried (and frankly, I still am) that my oldest son, Tiber, will get ideas about running his own “will it blend?” experiments. But, so far, we’ve been able to impress upon the entire family that the Blendtec is only for Koan’s use and that rule has stuck.
I don’t typically spend a lot of time on guilt. But, our lack of use of the Blendtec this is one case where that’s true. It’s such an awesome tool and we just don’t use it enough. But, it’s so much faster and easier to mix up a yogurt meal for Koan. Particularly after a long day of work and school. Everyone is tired and the routine feels exponentially easier to execute than to bust out the Blendtec. We know he’s going to enjoy the yogurt, and it will fill him up. While Koan’s not a really picky eater, like everyone there are foods he does not enjoy. It’s really a bummer to blend up some food only to find that Koan has no interest in pureed chicken noodle stew or some other concoction. It’s so much easier to whip up a meal I know he’s going to like.
As I’ve written before, we’ve needed to put Koan back on anticonvulsant medication. I’m not sure if it’s the medication or Koan just being Koan, but we’ve not seen a seizure since the day after Labor Day (knock on wood). The medication we give him is a liquid. We had noticed as we got closer to giving him a full dose twice a day (it took about a month to get ramped up to his maintenance dose) that Koan would drool, cough, and gag for several minutes after we gave it to him. We figured it tasted pretty bad. So, we started mixing the medication in with his food. One particular evening, I decided to try something new. I mixed up a batch of chicken fried rice and ran it through the Blendtec for Koan. I mixed in his medication, but it didn’t dissolve well with this food. Koan didn’t like this arrangement and refused to eat. Jeri got home as I was feeding Koan. And, she grabbed a portion of his food and ate it to try and model that it was good — and because she was hungry, too, and she likes chicken fried rice even if it’s blended up. But, she apparently got a glob with a lot of medication on it. The look on her face was memorable, to say the least. I’m taking her word for it, but apparently, Koan’s medication does indeed taste awful.
Thanksgiving is the one time of year, however, when I’ll know we’ll use the Blendtec for sure. Like any Iowan, Koan loves mashed potatoes and gravy, stuffing, and turkey. And, I’m sure he would eat an entire pumpkin pie by himself if we let him. And, while I’m all in favor of him eating more quantity of food and greater variety, I do have some mixed feelings, too. The more he eats, the heavier he becomes. It would be great if he would finally realize that he has all the tools he needs to walk independently or at least get into and out of his feeding chair on his own.