OK ... so tired of talking about the stupid medical things (nothing's changed ... they have no solution and they're still trying).
So how about telling you a few new things Manny's doing while we've been here?
When a person comes in our room that we haven't met before, he immediately says "Hi. I Manny" (and puts his hand on his chest). Then he points to me and says "That Mama" and then to Kaley, "That Kaley" (or sometimes he says "That Sissy"). He just started this in the past couple of days. It always gets a great reaction from the new person!
Next, he apparently likes our door closed. If someone walks in and doesn't close the door behind them, he will tell them to close the door repeatedly until they close it. He says it kindly but insistantly!
This morning we were playing with some Uno cards. I do different things with them like have him match colors. This morning I was having him identify the numbers and them match them with another one like it. I'd hold up a 7 and he'd say 7 and then I'd have him hand me all the 7's he could find on his tray. We got to the "reverse" card (has 2 arrows on it). And I asked him, "What is that?" (I expected him to say he didn't know.) He said "That way". Isn't that cute? I think that's a brilliant way to describe an arrow.
During one of his recent choking episodes, the nurse was in here with us and she was trying to get him to talk and see how he was doing. She asked, "You OK?" Once he could talk again, he said, "I just choking". (Isn't that just soo stinkin' pitiful?)
He can count to at least 13 without missing any numbers (counting objects).
He can recognize many of his letters and most of the numbers. He knows the basic colors. He knows the basic shapes (square, circle, heart, smiley face, triangle, etc.) Oh, and when he sees a triangle, he calls it a "Chip, a triangle" ... Does that tell you I must eat a lot of tortilla chips!?! :)
Now about the medical stuff. In summary, they gave him a day off on Saturday. Sunday at noon we started with 10% formula and 90% pedialyte. He didn't handle it very well either, but not as bad as the full strength. So we decided to try it again for his 6pm feeds ... we're still in the middle of that as I type. Clearly, his body is bothered by "something" ... fats? proteins? carbs? combo? and we'll have to sort that out. We have a looong way to go from where we are to where we need to be. And I appreciate the team is sticking with this and going to proceed until we figure it out!
Dan and Zoe drove the very long way up here to see us. It was good to see them but also very hard ... makes us all realize how much we're all missing out on. And when it was time to go? Let's just say there were tears. I plod along here, putting one foot in front of the other. But the truth is ... it's hard.