OK. Here is the plan. On Monday we are going home! Yesterday we had a meeting with all people involved here with Ella’s care. They all felt that Ella is doing fine. The one issue that was the most discussed (out of proportion in my eyes) was the fact that Ella should not yet attempt to eat liquids out of a bottle because they feel she is not ready and can aspirate (breath the liquids). As a result we are going to go home with Ella still feeding with a feeding tube down her nose (NJ tube or ‘Zonda’). There is a pump that feeds a continuous flow of food to provide the calories and fluids she needs. In two weeks we will come back to the hospital for another swallowing test to see if we can allow Ella to drink from a bottle and get rid of the stupid tube. Ella is making a lot of progress, here is her current status: The sutures in her head are healing nicely, they won’t, in my opinion, leave a scar. Her hair is growing in. She is almost at Marine length now. The swelling has gone down from everywhere except the right and back sides of her skull. In those areas there is a noticeable pocket of liquid between the skull and the scalp. A bit strange. She is still a bit uncomfortable when moved. It isn’t clear what causes that, pain, muscle soreness or just the desire to remain stationary (I have a form of that). Ella is connected to the feeding tube and has an IV line in her left arm for the antibiotics. This will be taken out on Saturday when the antibiotics are stopped. No other connections exist. She isn’t connected to any monitors or beeping devices. Ella moves quite a bit, mostly with her right side. The left arm and leg are showing some signs of life (mostly the leg). It will probably be quite a while until she actually moves them. Her level of alertness, in my opinion, exceeds her alertness before surgery. She can be awake for hours (4-5) active, alert and interested, without a rest. She focuses more than before. She will look at something directly and keep doing it as long as it interests her, for long periods. Before surgery, her gaze was more darting around . Her attention span grows daily. She will play with a toy much longer than before, trying, for example, to put it in her mouth.

She is NOT happy. Yet (I hope). Most things are done with a somber face. This is very different from the happy, smiley Ella before surgery. Interested but not amused. We are doing more things with her now. Putting her in a stroller and walking around the hospital, taking her out of bed and holding her. She watches her videos very intently (Baby Einstein etc.). All in all, very optimistic. I am still amazed anyone can actually wake up after an operation such as she went through (half her brain was removed!). She is more or less back to her pre-surgery baseline. We are hoping for big strides in development once we get home. I told her to rest up.

There is lots of work ahead.