So, we sit down at the table tonight, and I ask the question to Jennifer I often ask as we sit down to dinner, after I've asked Carter about his day and what he learned and all the other things that one day he is just not gonna tell me about but does happily now. After THAT, I turn to the wife...
So...how did he do today?
He actually had a light day, only two clusters of LESS THAN TEN seizures each. Hmmm...at first, I thought, well...super! But that little negative tickle started and then I realized The Truth.
Well SHIT, the big one is coming then isn't it?
And it didn't waste ANY time. It hit right there at the table, with some very peculiar, very strange elements that I have not seen before. And it lasted. And lasted. And lasted. 12 minutes total. A new record. It was alarming at times. VISCERAL. He nearly slammed his head into the table so I got him out of there.
Not used to this level of intensity. Not at all.
I am just wiped emotionally right now. We have an appointment tomorrow with an Epi here in town, the Dr. Yoda visit is next week, and it can't get here soon enough. There were times tonight where we were saying Bennett and waving our hands in front of his face and he had ZERO response. Not even a flinch. He was breathing, he wasn't shaking or convulsing, he just wasn't there.
I'm scared. It's official. I'm unquestionably, irrefutably, 100% scared to death.
IN THE MEANTIME, how about something hopeful for a change?
Sophie is a young girl who has battled Infantile Spasms a LOT longer than Bennett. A lot longer. Her mother, Elaine, maintains a blog for Sophie at Our Sweet Sophie. Elaine is a terrific person, has been nothing but awesome when it comes to reaching out to us in our need and giving tons of advice, info and encouragement.
See you gotta remember, I'm the newbie here, people like Elaine, Danielle, Sinead, Mike, Cynthia, Holli, Jen, Liz, Karen and on and on (PLEASE forgive me if I forgot to mention you here by name...just frazzled tonight)...they are the vets. I only hope that I can one day pass it along, pay it forward, and be as generous with my time to some other new entry into this world as they have been for me.
Anyway, Sophie started her surgery today, in Detroit, and Elaine has been incredible about updating her blog all day long about the status of her daughter. If you haven't already read her blog, do it now, because she has a lot to share, both informational and emotional, about this whole thing, and she's taking the time to share the journey with all of us.
Good luck, Sophie...you are often the subject of discussion in this house, and I hope that this is the beginning of a new, amazing, wonderful chapter in your life. We are constantly wishing you all the best. Here's a photo, from the Coleman's trip to Detroit taken yesterday I believe, that I swiped from their site.