Cuddles with Grandma

The EEG came back the same as the previous EEG a week ago. This means she has no active seizures but she shows signs of abnormal brain activity that represents potential for having seizures. The doctor said this is normal and a good thing. The EEG didn't get worse, which would have led to increasing her meds. The fact that it didn't get better isn't a horrible sign as it takes time for the body/brain to adjust to the seizure meds and the doctor is not surprised that she needs more time. So, because her EEG is the same, her meds remain the same as well.

The nurses have all agreed that Gesina has shown improvement in her sensitivity from last week to this week. For example, one nurse said that just last week she felt that anything she did to Gesina was hurting her. This week though, Gesina isn't overly sensitive to stimuli. In fact, when we try to wake her up to get her to use the bottle, it doesn't matter what we do to her, she isn't interested in waking up and she's not mad at us for trying either. When she does cry, it's an "I'm annoyed" short wail and not the "You're hurting me and I'm scared" inconsolable cry she would use on the nurses last week. So this is good. She is also making progress on using the bottle. I'm really hoping we get the bottle situation figured out as the idea of putting her feeding tube in doesn't make me particularly excited. I'll do whatever I have to to get her home though.

In other news, grandma got to hold her today with minimal drama! Her grandpa got to see her eyes, her cry, and even a smile (yeah, not really a smile but we can believe what we want). Adrian and I have a family meeting on the books for Friday morning so hopefully we'll have more of a sense of what happened, what is happening now, and what the near future holds. We are planning on meeting with the neurologist, hematologist, and attending physician. I'm looking forward to seeing her scans, etc. with an expert so I can begin to wrap my head around what my baby has gone through. I'm just hoping that education is power in this situation!