Like Joy, Bella uses her feet like hands. Here she is kicking her ladybug. I wish she would use her hands and reach for toys, but that’ll come. Her OT teased she’ll probably go to school writing with her feet so her fingers are free to suck on. :) As you can hear, Lizzy is here with me today! :)
Our current doctor has a background in nutrition. So to him the most important thing is that she gets good nutrition. He wants her to gain weight before he messes too much with the vent settings. The lower the vent settings, the more she has to work, so the more calories she has to expend. (Current weight 5.2 kg, weight on April 9th 5.2 kg) There is truth to what he says, but I really wish there was more consistency in the plan. Oh well. He has increased her volume and added more protein and oil. He did say she could go down to a PEEP of 9 and a rate of 26. He told me that is it for the week for vent changes. We’ll see. I’m sure Bella will show us the way if we will just listen to her.
The three of us
The pulmonologist that specializes in pulmonary hypertension stopped by. He said that a reasonable goal would be to decannalize (remove the trach) next summer! Wahoo!