This morning, I was given a report of things that happened while I slept, including that Mallorie had had some visible seizure activity, and had received an extra dose of medication for that.
This evening, the main neurologist who has been covering her, said that the 24 hour EEG they had been doing to watch for seizures had shown NO seizures. So I asked about the seizures the nurses saw last night. The doctor said, "Well, she was moving her legs, and we were going to ask you about that. Usually people who are paralyzed can't move their legs."
Well, Mallorie can. The nurse later asked me, "Purposefully? Rhythically?" Well, I didn't see what they saw, but I know if she listens to some Bob Marley, she does like to move her legs. And arms. Maybe she's paralyzed, but she does move those legs. I have no idea what they saw, but the EEG did not pick up any seizure activity while she was moving those legs. And it reminded me again, that it's really helpful if we can just learn not to let our moods go up and down with whatever the news of the day happens to be. Not that I'm good at it yet, but I'm very aware that I'm getting a chance to get plenty of practice.
So they are going to start to wean her off the seizure medications to see how she does. And they will see if she starts to wake up and try breathing on her own as they change the ventilator settings.
She's been started very slowly on milk feedings through her tube, and seems very comfortable. If I had a cable to download the pictures I got today, I could show them, but I don't. She's 3 years old, so she is sleeping in a "big girl bed" (adult bed). I had to quickly get some pictures before I let them know that when she starts waking up, well they're going to want to put her in a crib. Because the girl can move!
Thank you all for praying.
Holiday Sensory Time
1 week ago