A lot has happened since the last update. Ema has been doing very well, but she still has some trouble swallowing. This is something we expected with the DiGeorge Syndrome. In order for her to get nutrition, she has what is called a G-tube (gastronomy tube). This is a tube surgically inserted into her stomach with a nozzle on the surface of her skin. It's painless and doesn't seem to bother her at all.
Right now, Becky and I are in Kansas City getting trained on all of the new equipment we will be bringing home with us. Ema will require a feeding pump that will administer food through her G-tube. Though she is breathing room air, we will have oxygen tanks handy in case her oxygen saturation drops too low. She will also require a number of medications that will need administered throughout the day.
In spite of all this, she is a wonderfully normal baby girl. We just put a tube in her belly when she needs burped instead of patting her on the back. We are all ready for her to be home, including Grahm, who says, "Ema," every time we ask him what his sister's name is.
She has given us quite a few ornery grins while we've been up here. She knows she's about to go home.
