Thursday, June 4, 2009

Fumbling in the Dark

Back in the hotel room, Bennett has had all his tests and now we are in the room resting. Since I can never sleep in the day despite these awesome room darkening curtains I am fiddling around in the dark trying to type on a keyboard softly and with only being able to see the keys vaguely.

Yeah, I am a sophisticated hunt-and-pecker, I do not type in the traditional manner. I can do it fast, but I need to see the keyboard. It's nuts. If I had it to do over again I would take a typing class and actually learn a thing or two instead of punching a guy and getting sent to the principal's office. (Remember that, Richard?)

Not much to tell, well, not true, lot's to tell though no official results about the overall visit. The actual meeting with Dr. Yoda is tomorrow. I do have tons of thoughts and observations to write about but now that I have the time I can't freaking see! ARGH!!!

But, at least the testing is over, the kid is more comfy and snuggled up with his Mommy and we only have one thing left to do on this leg of the overall journey. Just one thing left. Simple, right? It's only the most important meeting with a physician in the history of our lives.

It'll be a LONG 22 hours. :) I am , however, still very optimistic and still keeping it together fairly well. Jen is too. All in all, having people here has been THE difference. In the event we need to do a multiple day trip again, and especially if we have any kind of surgery here or in Cleveland, I definitely plan to ask a ton of people to be involved. It is HUGE.

More later...time for me to do less clacking on the keyboard and more reading.


  1. Glad you are all back and resting now. In hope tomorrow's meeting is everything you expect!

  2. Glad to hear the testing went well. I hope everything goes well tomorrow!


  3. I've been silently following Bennett's story, but wanted to say that I'm glad that he's resting comfortable with Jen.

    I have to commend you Ken, you are a great father to your boys, no matter what you may think at times. There aren't many fathers out there that can claim the same.

  4. Hang in there Ken. I hope things work out well.

  5. What was I thinking? I had in my head the PET was tomorrow morning...duh, tomorrow's Friday!

    Anyway, glad the yuck is over and you can finally focus on Dr. Yoda's visit.

  6. So glad to hear you guys are doing well. I was planning on coming over to introduce and bring a little EEG survival kit, but Daniel is ill and there is a child in his class that has swine flu (no daniel doesn't-he got tested) but didn't want to risk it. Bummed we didn't get to meet you guys!!

  7. Dude first all the problem with the glasses and now you're in the dark? Seems like someone's trying to tell you something! lol Don't worry you're not alone, last night I actually had to tape my eyes shut, because I'm having allergies and they were causing me so much pain, that only with them taped and covered, was I able to avoid scratching them out.

    Good to hear all is "done", and that you have just that "one" thing to do.

    I'm miserable, and misery loves company, and I actually feel good reading your updates (especially because things are going well), but I cannot wait for the time you start posting about how Bennett is on the way to recovery.

    I hate to say the word "luck" so I'm not going to, I'm going to just say: May all go tomorrow as best as it can, and in the best possible way.

    Thanks for sharing your life and your experience with the rest of us. Makes some of "our" "insurmountable" problems, seems just silly, and trivial, which is really what they are.

  8. Hey there....Well, Bennett has done his part....Now we will see what miracles can be worked for HIM!

    I'll bet y'all are totally worn out....I hope sleep comes easily tonight so you can be well-rested for the big intro to the big guy tomorrow....

    Just waiting anxiously here down south for the news we are hoping and praying for!!!

    Stay strong!


  9. Hope tomorrow goes well. I'm rooting for Bennett.

  10. As soon as you started talking about typing class....and as I recall, the jerk really deserved a punch in the face!

    I wish I could be a fly on Yoda's wall...

  11. Just wanted to let you all know that we are thinking about you. Dr. C said he had an appt with a family yesterday in which their son who has IS was a clear cut surgical candidate. I am holding my breath that he comes by later today to say the same thing about a family he met today!!!

  12. A big cyber hug headed to you all. Take your time to sort your emotions. We are all here waiting tip you let us comment again. Vigabatrin was Austin's miracle. I am praying it's Bennet's too!


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