And Then There Were Questions.......

So the Dr. called a couple of days ago and my brain is finally able to begin to make sense of what the results of the EEG are. For a couple of days it was like my head was filled with cement and nothing was moving - as much as I tried to get my thoughts going, I just couldn't.  They were stuck - in my head - unable to be communicated - causing me to seem drugged. But now some time has passed, I've talked to the Dr again, read the results myself, and scheduled an appointment at Johns Hopkins with our go-to neuro ( the one we go to when we have more questions than answers).

So when the Dr called, of course I settled in with pen and paper and was told the EEG suggested that Kellyanne was not waking up at night due to seizures, necessarily. (Our primary reason for doing the EEG)  I wrote the following words on a piece of paper: lots of discharges all the time, episodes, partial seizures, generalized seizures, frequent, right, left, both, frontal, 1-5 secs. What the heck did all that mean?????? According to the report, the Dr. clarified, she has "lots of electrical discharges from multiple parts of her brain all the time".  The seizures that we saw and noted while the EEG was taking place didn't reveal any change from what is typically happening in her brain according to the EEG,. In other words, her EEG is a mess! Like her MRI that a shows a very abnormal brain, one that doesn't match Kellyanne's abilities, the EEG shows very disturbed brain activity that doesn't match what we are seeing in Kellyanne, Thank God!  I asked the Dr. if Lennox- Gastaut Syndrome was mentioned - she said yes - not what I wanted to hear! If you want to know why, just google it!  Of course, first thing the next morning I called Hopkins, scheduled our appt and then went to pick up a copy of the EEG report. I needed it in my hands. I needed to read it, to see if it would help my understanding a bit - it really didn't,  it was like reading Greek. There is a line in the summary that I keep dwelling on ......."consistent with (but not typical of) the diagnosis of Lennox-Gastaut Syndrome". 

The Dr. called me back the next day and went over a few more things. We talked about doing a video EEG monitoring (which I will discuss with the Dr. at Hopkins). We talked about the fact that if Kellyanne is "misfiring" all the time, how is it that she is reading, and writing, and running, and interacting????......very mysterious.  She suggested "perhaps the misfirings aren't bad" There is obviously a large part of her brain that is working very well to compensate for the parts that aren't working very well.  I commented to the Dr. 'this is really bad,  isn't it?' She asked, "why"?  I said 'the results, Lennox-Gastaut, the whole thing'. She said "Kellyanne is doing VERY well, and that's not bad". So I will focus on that. Kellyanne is doing very well. I won't think about what might lie ahead for her, for us.  I will shut that door to worry and live fully in the present moment, because that's all we really have anyway.  And it's times like this I am so grateful for the gift of  faith - because my God is Big, and what I can't handle, He can.