Last month, right near the 19th anniversary of Sophie's diagnosis of infantile spasms, I had the great opportunity to tell our story to a crowd of folks at the Realm of Caring fundraiser. Here's a video which features some clips from my own speech but also from some of the other families, as well as the phenomenal Dr. Bonnie Goldstein who is working with many of these children with refractory epilepsy, as well as other illnesses. She explains the whole shebang in the clearest, most professional way. Please listen to the whole thing -- it will be thirteen minutes of your day well spent.
The video was made by Weedmaps TV -- I know, I know. The name. Get over your hang-ups, folks, and embrace it. If you hold-outs do that, I'll get over my hang-ups about being photographed at angles I'd prefer to never see. I took the first step by even posting this thing. You take the next. My vanity for your ignorance.
As for our Sophalofa, she is struggling a bit as we adjust both the CBD, THCa and her regular anti-epileptic medications. Overall, she's excellent. Breakthrough seizures are perhaps more difficult to deal with as we've now seen so many seizure free days! As Henry said the other day when I lamented how hard it is: Mom! Think about how many seizures Sophie had every single day for so long! We haven't picked her up off the kitchen floor in months!