OMG

Okay, Well he has a new trick.

Wednesday night, during the dinner feed, he spit out lots of chocolate milk. This was NEVER a problem. He decided to spit the milk directly into my face. He wasn't angry, he was hysterically laughing. This went on for almost 30 minutes. I would take the cup, say "keep it in your mouth and swallow" and he would spit it out. The sips got very small, but he would find a way to spit it out anyway.

I was covered in chocolate milk. My mom's walls and floor were covered in chocolate milk. (Those of you who have been to her house know, that her house is spotless, white, and everything is made of glass and has sharp corners).So imagine the scene.

I found it VERY hard to stay cool and calm. He kept laughing and the joy he got spitting this out was greater than my approval, playing with him , or any toy I had on hand.

I took off his shirt, beacuse he was having fun wiping the liquid with his shirt. I had to turn away from him and slowly count to 30 to keep cool before repeating the steps.

The feed took over an hour and he didn't drink more than 3 teeny tiny sips.

We called them on the phone and it was explained to us, that he is losing control and knows that liquid is controlled by him, it is the hardest to make him drink and he is smart.

We were doing the right thing and to stay strong.

He did this "milk trick" at all 4 feeds Thursday when we stayed home to practice. It did get less by the last feed, but it was still present. It also didn't matter if it was Phil or me doing the feed.

This morning we are back in hospital and he did it for the therapist, so she got to see him spitting it out. Crazykid.

We are down about 50% on tube feeds and if we can get him to DRINK then it could be over faster. He doesn't drink enough and needs these tube feeds to stay hydrated. The therapist saw our frustraions and reminded us to keep strong and that they are on call all weekend and will talk to us about concerns and any "new tricks" he discovers.

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.