Well, all of July we were in Philadelphia, in the hospital and we've been home for one week. It has been one hell of a week. Basically, it's just like being in the hospital, but I can stay in my pjs- and really I have to stay in my pjs because I have no time to do anything.
We need to do 3 structured meals each day and one unstructured meal. He also needs to be constantly reminded to eat and drink a snack midway between the meals. They said the structured meals would be 30 minutes, but they are not. It takes a bit of time to measure and make his meals. We bought a little scale and bowls that are microwavable, plastic, and solid in color so he can't be intimidated by the amount of food. We feed him 3 ounces of food- so for example this might be: 1/2 a chicken nugget cut up, about a 1/4 of a small applesauce and maybe 1/2 of a small kids yogurt and 3 ounces of Carnation instant breakfast mixed with whole milk. This has been taking an hour to feed him because of how often he spits and vomits up the food.
I am remaining calm and picking it up and giving it right back to him, but it takes forever. Then there is the clean up- of him, the floor, kitchen, etc. Because we are doing this like every couple f hours it feels like all we do is feed him, no time for showering, laundry, cooking for anyone else.
It's like having a newborn. Except when you have a newborn, your family comes over and sends food, and offers to feed the baby and hold him and help you and the baby doesn't do anything in between- they just lie there. Well, Adam is an energetic 3 year old and the only people who can feed him are me and Phil.
Also his newest trick is that he takes the spoon/fork with the bite on it and acts like he's picking it up to eat, but then he throws it full force. So I have splatters of yogurt and pudding everywhere. I have to stay even and calm and scrape it with the spoon and then forcefully place it in his mouth and say, "take your bite, keep it in your mouth" Then he spits at me and I repeat this. Typically by the 6th time, he is swallowing it, but each time, I have to stay calm and centered. No attention to anything negative. All negative behavior is ignored. It's very hard to be your child's therapist. 3 times a day.
I bought some bins for "feeding toys" and need to scout some garage sales because he's already getting bored with them and I bought some shower curtain liners to put down all around where he eats. I feel like Dexter taping up the surrounding area before I slaughter my victim, a real serial killer.
Tomorrow is his follow up and I hope he didn't lose weight, but with all his antics and vomiting, he might. I just hope we don't go backwards and need to increase tube feeds.