how it is

So we were to relax over the weekend. We relaxed.

On Monday, I did the 3 meals here, and they were a bit problematic, but we got through them, and I did not have the therapist in the room. They watched, but it was all me.

Tuesday was Phil. He did the meals with the therapist and then today he did the first 2 meals without her.

He still is inconsistent and tests us. He wil spit out food again and again, but we keep replacing the food. if he spits it out 12 times, we will give him the 13th bite. He eventually will learn this. It is exhausting and tiring and draining and really hard to ignore and stay relaxed during the meal.

I've been reciting poems in my head and song lyrics, to stay focused and calm.

Yesterday Phil almost burst out laughing at Adam's antics. He kept screaming, "Dad, Daddy, it's me. Look at me" over and over, but because he was spitting and refusing to chew his food for the therapist, Phil was ignoring him. It was difficult to keep it up, and it's even more difficult to remain cool and calm when replacing bite after bite after bite of food.

They are giving us the day "off" tomorrow. it's not really a day off, they are really just sending us home to practice at home. We have to do 4 meals tomorrow at home. So, this will take about 4 hours plus mealprep time. Then we will report and share with them on Friday how it went. They will also talk to us tomorrow on the phone if we have any problems so we can get questions answered before the next feed.  Then Monday is our discharge meeting and we are DONE. We follow up every 2 weeks for some time and hope for the best.

We entered here being 100% tube fed, eating nothing but  an occasional slice of Land of Lakes American White Cheese.

Now he will eat at a structured meal therapy session :3 ounces of food and drink 3 ounces of milk.

He will eat: grilled cheese, mac and cheese, broccoli and cheese, green beans, bananas, peaches, applesauce, scrambled egg, pancakes, yogurt, meatball, spaghetti and tomato sauce, chicken nugget, and mashed potato.

It's a struggle and will continue to be one on one eating for a while, but it's a start.