Today was mostly filled with cuddles and smiles.
We did have an update from neurology. To be honest, I’m having trouble sifting through the information we’ve gotten from 3 different teams. If you’ve tried reading each post and are confused by whether or not we’ve made progress on the sub clinical seizures…well…I’m confused too. Today’s discussion was that we were successfully treating clinicals seizures, but hadn’t made real progress on the sub clinicals. Meanwhile, last weekend we were told the seizures were happening all over their brain. And this week we were told by a different crew they were only in the lower left area. So if both assessments were true, I would argue we did make progress. We’ve also been told at various times that each of the 3 medicines did help, even if only a little.
That’s where Monday’s meeting will be helpful. At 2:00 we’ll recap the last 9 days of testing and medicating to find out how our main neurology contact feels about the progress.
Until then, this weekend will be filled with visiting friends and family. Unlike last weekend, the boys are EEG free and ready to be held!
Here’s a look at day 18.
We were also thrilled when daddy arrived. K will be up to visit tomorrow as well. I’m looking forward to a weekend with our whole family together!