Home Again, Home Again, Jiggity Jig.

So we are home.

The doctor discharged us and we were out of there in less than 30 minutes.

The nurses were all phenomenal.

Everyone was really friendly.

The Neurologist says that her eye drooping does not correlate to anything abnormal going on in the brain. This is good news. I'm pretty comfortable now assuming that it's just muscle weakness but I will eventually make it over to the eye doctor with her to confirm this. Since it's only prevalent when she is sick or tired I doubt they will do anything about it.



For some reason she stopped having the abnormal brain spikes. She had them on Monday a few times and then NOT ONE on Tuesday. Since she is so sleepy he agreed we should change the medication. I'm nervous but I think it's the best choice. We are going to increase her evening dose of Topomax and slowly DECREASE the Keppra until she is weaned off of it. I'm comforted knowing that we have emergency medication AND that she is on an apnea monitor at night. If something happens we will catch it and can help her. I don't like messing with the medication at all but at this point it's been nearly A YEAR and she's just as tired today as she was back when the initially put her on it. It's just gotten worse. The doctor said by now if that side effect was going away it would have already.



He is going to see her in the office in a month and set up another EEG to make sure the spikes are gone completely and that the increase in Topomax is working.

I have to add this. Her Neurologist was so good to her. He said/sang something in Indian to her. I think it may have been a prayer, whatever it was I thought it was incredibly sweet. Then he picked an eye booger out of her eye with his bare hand and she giggled.



Made me want to hug him.

The only time she cried the entire two days was when they had to remove all the leads from her hair/head. It's left some read marks from all the glue. She cried really loud which she never does. Poor baby girl.

I'M REALLY PISSED OFF YOU GUYS.....NO REALLLLY!


I'm glad part of this mystery is over but I am nervous about the road ahead.

Whatever happens though we will just keep on going.

That's just what WE do.