Today, I was going through some old books looking for something in particular, and came upon Max's seizure journals. I have notebooks full of start time, end time, what the seizure looked like, what his post-ictal stage looked like, what medicines were administered, did they work, did they not work, when we called the doctor, when we took him to the hospital.
Some people have baby books outlining the first year of their baby's life. I have seizure journals. I flipped through them and saw scribbles of terms I didn't understand at the time. Questions I hoped the doctors could answer. His doctors' handwriting, explaining his very rare diagnosis. I got teary remembering, but so very thankful we're not in that spot right now.
I put the books back on their shelf, and continued looking for the poetry book I was searching for, when I found the book, The World According To Mr. Rogers. It made me smile. Mr. Rogers always makes me smile. His words always warm my heart. My friend Susan gave me this book nine years ago this upcoming week. We were just given the preliminary diagnosis of seizures. Max was admitted for long-term EEG monitoring to try to get an idea of the why, what, and when of his seizures. Before we came in for the long-term EEG monitoring, we had also received a phone call from his pediatrician at the time giving us a preliminary diagnosis of a metabolic disease that was very rare. To say that this book came at a perfect time is an understatement. It was a bit of peace to flip through as I stayed up all night wondering what was going on in my 4 month old's little head and body.
As I flipped through the book today, I found a bookmark. Not on any page in particular. I'm sure we just stuffed the piece of paper into the book as we were packing up to go home after the longterm EEG monitoring was finished. This note was written by Max's neurologist.
He had just given us the word that while Max was being monitored, he had had over 200 seizures. His doctor could tell that they all were starting in one spot from the tests, and surgery would be his best option for a quality of life. He wrote these words down 9 years ago this week. President's Day weekend, 9 years ago we started down this journey.
We were to take this note home and research about focal cortical dysplasia, malformation of cortical development, and surgery. We were to do a bit of research, and then get back with him the next week about what we would like to do.
We went home, and that evening were back in the ER with a baby which was non-responsive and being intubated to breathe. Whether it was the newly diagnosed metabolic disease, or the newly started seizure medicine which made him stop breathing, we don't know, but we got him to the ER just in time. I know that now. I didn't know it then.
It's funny the bits of things we keep along the way. And how we come across them at later times. Last week, Max had an EEG, as a follow up, just a check-in really. It was 9 years ago this month he had his first EEG, when we were told he might have a "slight tendency towards seizures", by a neurologist who was flat out wrong. That same neurologist was to read Max's EEG this week. When we got a call from Max's regular Epileptologist (his neurologist who specializes in epilepsy), it was more of a catching up than report on the EEG results. He asked how we were doing, asked about Max, and said his EEG looked good, better than he's seen it, in all these 9 years. But, of course there is always the risk of seizures.
Of course, always that risk. But, looking back at where we were 9 years ago, I'm so thankful we've come so far. And I'm thankful for finding this note to remind me to stop and appreciate that. I placed the note back in Mr. Rogers book and have it back on the shelf. Maybe I'll find it again some day when I need a little reminder.