Ella made a lot of progress today. Besides the gradually better control over her fingers, toys and anything else that goes in her mouth, Today she made huge strides in sucking her pacifier. Up till now she only showed mild interest in it and dropped it after a few seconds without attempting to suck on it. Today she went back to her pre-surgery interest in the pacifier and sucked on it vigorously. She even fell asleep with it in her mouth tonight. This is good news and has bearing on her ability to feed from a bottle.
Tomorrow we are finally going home.
That will be a welcome change. I can’t wait to get rid of the feeding tube already, but I guess it is a small inconvenience (if it only lasts two weeks) after all she has been through… She also seems a bit more cheerful, not her old self, yet not as grumpy as she has been these past few days. She can concentrate on something and it keeps her interested and focused (and not cranky) for that whole time. I am curious to see her reaction to being back home, and to her bed, which she has always had a special connection to. The rounding neurologist today decided that the dose of her phenobarbitol (anti seizure medication) needs to be increased. This has me totally baffled. The intention is to decrease the dose to nothing not increase it and not try to maintain a certain level. The logic of this is even stranger if you consider this is done three weeks after surgery. Tomorrow I will try to talk to Dr. Duffy, Ella’s neurologist and see what this is all about.