OK, since nothing else gets accomplished on the weekends I decided to work on PT a LOT!!!! So, Tucker and I did physical therapy activities three times a day. Whether it was walking, crawling, or getting from sitting to standing position. NORMAL ACTIVITY they say. Wait til they see us tomorrow. Tucker was much more like himself today...jabbering and trying so hard to laugh and enjoy himself. We got some foot stomping during Jacks music show and laughing when Little bear laughed, I even got a fake sneeze. We went to the outdoor playground and climbed the stairs to the slide, but were too tired to try to go down. It was a nice day to be outside. We walked around the garden several times and even felt the grass and talked with the little birdies that were looking for food. We went to the cafeteria for dinner and Tuck ate some bites of pizza (without gagging) a few bites of salad, and of course, yogurt.
His belly is still over sized....due to poop. Even after two enemas and the poop they caused to come out, we are still only about 2 cms smaller than before we pooped. I know that has to be part of the reason he gags so often. There just isn't any room left in there.
I have lots of pictures and no way to post them. I will try to figure it out. I need one of those adaptor thingy...so maybe I will look at CVS tomorrow to see if they have one. They had the hair cutting kit that I needed with the razor for cutting Tuckers hair...which by the way looks pretty darn good....so hopefully they will have the adaptor thing too. (fingers crossed)
We are almost off the adivan and have weaned one of the diuretics. They are planning on taking one more off tomorrow, as long as the chest xray looks OK that is. Maybe then they can also take the fluid restriction off as well. Tucker is so thirsty, that is all he asks for .....Dink. It is so pathetic, he holds his little finger out, (crooked mind you), pointing to the sink in the corner of the room, with a little smile and a whisper... Dink Dink...while shaking his head yes as if to convince me to get him one. Never mind that I have to thicken it to look like hair gel......he just wants it! I would give him all the water in the ocean if that is what it took. I feel so badly for him. Soon though....very soon.
1 week ago