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.
6 years with Asha
1 week ago