It was brought to my attention that not everyone following Giovanni's story is on Facebook, so I was asked to keep this updated as well. Here is the update that I posted two days ago...
I am going to be completely honest for a moment. I started this page as a way to keep everyone informed about what was going on with Giovanni, as well as a way to raise awareness about the two rare neurological conditions that he has. I often struggle with how much to share, and what is best kept unmentioned. I have mentioned previously that I often teeter between acceptance and denial, but I realized today that if I keep quiet about certain things, there is no benefit to this page.
I had vaguely mentioned a couple of weeks ago that the neurologist confirmed that Giovanni was still having seizures and we were given a few options, with our final decision being a medication increase. What I haven't talked about is how, despite the medication increases (yes, two of them) he is continuing to have seizures.
On Sunday I posted a picture of his tractor and talked about how my husband and I were in the midst of modifying it. The reality is that Giovanni had a seizure shortly after I took that photo. I wrote that post as if nothing ever happened, and that my husband and I were happily going about our day. That is not the case. We are scared that this is the first step in Giovanni's seizures becoming intractable. We are scared that Giovanni is going to have a seizure in his sleep, and that something terrible is going to happen. We are scared that these seizures are going to start changing, becoming more traumatic. The honest truth is that my husband and I are scared shitless.
I have been going back and forth with his neurologist since Monday morning. I cannot say enough about this man. He is one of the most caring and compassionate doctors that I have ever known...and not to mention, he is able to put up with me! It was decided, upon my request, that we are going to give this second medication increase until next week. He said that if Giovanni continues to have episodes into next week, that something needs to be done. He briefly mentioned doing an ambulatory EEG at home, but I am not sure if we are going to pursue this yet.
I will keep everyone posted.