07-09-11

Emery is very observant. He is gradually getting stronger physically and is picking up where he left off with his fine motor skills and cognitive ability. We had a consult and a few blocks of time with the occupational therapist, who said his abilities in those areas are appropriate and he still seems interested in tasting and putting things in his mouth. After a few visits she said we didn't need her yet.

...Yet? Well, if I can help it we won't be needing her more than for check ups! Not that she wasn't nice and great with Emery- he loved seeing her because she let him taste food. :) I just don't want to sit around and let him develop a food aversion from not eating and being intubated for so long. (After the tube comes out they have to put a small rubber hose in his mouth and down his nose over and over to get him to cough). The snot sucker and the tooth brush were the only oral stimulation he was getting- not altogether a positive experience with things in his mouth. After speaking with her about my concerns, she agreed to recommend to the doctors that I continue to introduce new tastes of things that will fit right out of his G tube, like baby food. He only gets one dip of whatever will stick to the little wand she gave me but I will take it. Something is better than nothing and the doctors agreed.

He is able to control his hands better now that he is getting weened off of the morphine and ativan. He loves to push buttons and figure things out. He also loves to be the doctor. He puts the stethoscope around his neck and up to his chest or mine to "take a listen." You can tell he is so proud of himself. All of the nurses and visitors we have had do such a great job reinforcing that. At this time he wasn't quite blowing kisses again but he did wave. Still no words but he communicates with gestures. He did mouth the word ball. I mentioned before that David and I considered taking bets about what his first word would be. No big surprise, really- his motivator is ball, he loves playing ball, of course his first word would be ball.

He never seems to get frustrated. He is always so patient. Now that he is more "with it," we noticed that he has developed an incredible coping mechanism. Whenever we are messing with him he will get very quiet and still almost immediately. He holds his hands by his sides, closes his eyes, and his breathing evens out- almost as if he were sleeping, though you can tell he is not because his hands are not limp. He just lies there until whatever we are doing- dressing changes and bath time mostly- is over. When he thinks the coast is clear he will snap right out of it as if nothing ever happened. Or if he is like that and we say ball in a playful way he will look at me out of the corner of his eye and show me a big grin.
   

He still gets tuckered out pretty easily. Not long after he is playing we will usually find him like this. Peacefully sleeping like a perfect little angel.