Inpatient Update

First off, I think I left my camera cord at kasey's so I can't post some of the CUTEST pictures ever that I took this weekend. Maybe I'll find it soon. But, I do feel like I have things going on worth updating you on. Yesterday we checked in and that was really it. We just hung out in our room. Today we kind of "got started". All of the therapist that will see him came by and did their evaluation and kind of started to make a plan. When I say plan, that doesn't mean anything really in stone. This whole process requires a lot of observation and trial and error...hence the slow pace of it all. Here is where we are headed (this might get long):

Physical Therapy: Nothing new here, more of the same... He will see the PT 2-3 times per week. This is really just icing on the cake since we are technically here for feeding.
Occupational Therapy: She will do mostly gross motor things like the PT, but with a little different focus. She will focus on his hips, left arm movement, and working on his whole body balancing out his 2 sides (his left is weaker than his right)

Speech Therapy: This is where the action was today. She agreed with the ladies last week that the NG tube is the way to go. I feel really good about it and the way she explained it was good. I'll do my best to communicate what she told me. Basically he eats (and always has) sporadically with volume and time. So because of that, his body has never really learned what it is like to have a full tummy, let it empty, get hungry, and then fill it back up again. That whole rhythm has never really happened. So the NG tube will allow us to be on a strict time schedule giving him 30 min. to eat. We will offer the bottle first and let him take as much as he will and then put the rest through the tube. This will not only meet his daily intake goals and help him gain weight and get bigger which can only help his whole situation, but it will also give his body a chance to learn how this whole process of getting hungry and eating works. I feel like this makes sense and is a good step. This is NOT a fast process...things don't move in days...they move in weeks, but that is OK. We are hopeful and praying this will get us on our way to fixing this.

They put the NG tube in this afternoon. Not pretty. I wasn't in the room, but I could hear him and let me tell you, I was hearing sounds come out of him that I have never heard. I would have never known it was him because I've never heard him cry like that. Obviously the whole tube thing is annoying to him and less that 2 hours later he had pulled it out. The nurse that put it in didn't do a good job of taping it down. I knew it was going to happen. He just ate (and did great) from his bottle and I'll give him a bath and then they are going to put the tube back in. I am hoping this nurse will do a better job taping it down (I'm not saying its easy, I'm sure its hard to get that done when he's all over the place) and we can keep this one and let Kanyon start getting used to it being in his face. It shouldn't hurt him or anything, its just annoying on his face.

Needless to say we've had lots of holding since trauma of the tube. I just feel so bad that he has to deal with this junk. I would do it for him if I could. I wish so bad that he could catch a break and let something be easy. Paul and Katie came and brought me supper so they got to love on him while he was sad. Right now he's in his bouncy seat loving life (little does he know the tube is coming back!)

Tomorrow we will get going with somewhat of a schedule and settle in to how our days will go. This is a good place and I have been very pleased with everyone here. We are thankful to be here and really really praying/begging for this to be our help.

I'll hopefully get my camera cord tomorrow so I can have pictures to post. I'll end on this...can you believe the bachelor said "monkey will you marry me" I mean we all know I like monkeys, but come on....when you're proposing!! oh well...whatever bach.