Tuesday, May 26, 2009

A Shitty Entree with a Side Serving of Hope

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.


  1. So sorry to hear about Bennett's nasty cluster. I'm crossing my fingers that these do not become the norm. It absolutely sucks to worry about everything in sight being a potential head injury.

    And Miss Sophie has definitely been on my heart all day. I can't quit checking for updates!

    What a coincidence that you all will be there at the same time!

  2. Yeah it will be cool to meet them. Hopefully I will get the chance. I assume the places we are going to be are close by. But if not I can always go on a mission, she gave me the cell number to reach them.

  3. I know surgery, any surgery, even the word is nasty (I've had several myself, will have another soon), but maybe surgery will end up being your best bet.

    I read a bit about Sophie and it seems she's fine with hers. Hope it'll keep, and it'll last forever.

    Paying it forward is a noble thing, but I wish you never have to do it. Because that would mean there would be no one needing the knowledge, because there wouldn't be any more kids with CD and IS

  4. Thank you for the sweet words. We are actually in the room you will mostly likely be in when Bennett is having his 24 hour VEEG. There are only 4 rooms (I think) that are dedicated to an extended VEEG...all clustered together at the end of a hallway on the 5th floor. The PET scan will be down on the ground floor. We will be in this room until Friday and then back in the ICU until Saturday. I think after that we come back to the 5th floor but on the other side. So we will be right down the hall from each other :)

    It sucks to hear that Bennett had such an intense cluster. Sophie use to slam her head into so many things. It's horrible to watch. Somehow, someway...those went away after time.

    By the way, e-mail me if you have any questions at all about coming to Detroit next week. Can't wait to meet you and family.

  5. Elaine,
    We opted to stay in a hotel downtown, since we actually would only even be in the hospital for the one overnight, so I do have some questions, I'll e-mail ya.

    Great pics of Sophie, glad everything is going so well.

  6. Since we are only at this two months more than you, if you count me as a pro then you must also count yourself. Sorry about the mega cluster. Inching ever closer to June I am glad to say. I look forward to hearing about the options you are presented and to watch as you navigate the next leg of this journey. You could not do more. You guys are fabulous.

    I met with a mother yesterday who has travelled from outside the US for treatment for her child (without any insurance) and am reminded about how hard other people have this too. It never ceases to amaze me how difficult this path is. Hang in there. Every day that there is an untried option on the table for you to choose is a good day because there is hope.

  7. Hate to hear they are getting stronger. I know what you mean about being scared to death. Connor has slammed his head with such force into toys, the table just out of nowhere, and it freaks me out everytime! Hopefully Dr. Yoda (ha ha ha..love it!) will give you some insight into what is going. i have a feeling we will end up with him eventually. just waiting for that day.

  8. UUUGH- I can imagine your fears when the "big ones" hit. They suck. They suck BIG BIG time.

    We are in the Detroit area, and have had many 24 hr VEEG. If you are coming here, make sure you ask for the private room. Tell them that your child wakes easily...otherwise you could end up in the one room that has to share and that sucks. Last time we almost had to open a can of whoop a$$ on the people we shared with. :) If you're here and you ever need anything, feel free to contact me!

  9. Sinead:
    Not sure why I count you as a vet, but I do. Even two months more is a lifetime, and wasn't it actually going on longer?

    Monica~ James~ Connor:
    The head slamming is fairly new, it just means I am never on yellow alert or at ease with him around. I am always in the red. Watching. It is tough on the sanity.

    It might be too late to ask for the private room, we might be stuck. We hadn't asked for it prior to booking the appointment. SHIT...the rooms should all be private for the kids. That's the one thing going for the local hospital here I suppose, all rooms are private.


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