Showing posts from May, 2010

For the Newbies

I thought that I should, primarily because so many other blogs I frequently read are smart enough to have this, create a brief summary (as brief as I CAN) of what this place is all about for those who might be visiting for the first time. If you are visiting for the first time...welcome.

As for me, my name is Ken Lilly. I was born in 1967 in St. Louis, Missouri but consider Baltimore, where I spent a great bulk of my existence, as 'home'. Currently I reside in Columbus, Ohio. Why? Because my wife, Jennifer, is from here, and this is where the bulk of her close family lives. We've been married since 2002.

We have an older son, named Carter Maximus, born in 2004. We also have a younger son, Bennett Leonidas, born in 2007. This blog started out initially as a hobby for me, something to pass the time since I enjoy writing and have been a part of online communities throughout my career as a Product Designer/Product Manager for various Toy and Collectibles companies.

It quickly mor…

Here's Another Video and the Carter Re-Cap

Another video, taken a few weeks ago. Bennett spins a Frisbee in the driveway of his grandparents house.

He loves to spin things.

Listen for the coughing thing in the video. He imitates a cough he hears in the background, which he does rather frequently now (though we never know if he HAS a cough or is imitating) and that's something to note. When you are dealing with a situation like this, it's the little things that you have to use as positive reinforcement for your own peace of mind.

Sinead, one of my SN Sisters, calls them 'Inchstones'. I loved the term, and use it now as if it were my very own. In a journey with your kid who is disabled for whatever reason, you have to measure things in 'Inchstones', not 'Milestones'.

If you don't, it's extremely easy to get bummed right the fuck out. Hell, that's easy anytime, but it's even easier unless you can hang on to small positives.

Oh and I know some folks were expecting a report on Carter and …

In the Meantime...

I've actually been working on an 'introductory' time-line for Bennett for people who are new to this space. It's been harder than I thought researching all the dates and junk. That, along with some extra work shipping some stuff out, has kept me off the blog for a while.

In the meantime, here's a recent video I took of Bennett. He does this kind of thing a lot.

I'm starting to really see the sensory stuff more now than I used to. Guess I was in denial or something. I dunno. He still ain't talkin' much, if at all. In fact, even 'Dadda' is pretty much gone now. Now its 'Gaga'. Still hear a 'Mama' every once in a while and sometimes a 'NahNah', but he is still very non-speechy.

Loves to giggle and play though, so there is that. And things could always be worse, I get that.

I'm bummed today. Can you tell?


For Those Who Check In

This quickie post is just for those who like to check in to see the skinny on Bennett and his journey down the Special Needs Rabbit Hole. We had the MRI on Tuesday, and it was still clean. Translation? No evidence at this time of regrowth of the Grade II Oligoastrocytoma. (That's a brain tumor that usually occurs to middle-aged people, for those of you who might be new to the party.)

Next scheduled MRI will be in late August/early September. That visit to Cleveland Clinic will be major, probably requiring three days. Lab work, MRI, PET, EEG, meetings with Epilepsy, Neuro-Surgery, Neuro-Oncology and Neuro-Psychology. I think that's it.

As for a more detailed report of the trip, I'll get it done tomorrow or Friday. Today is a catch-up day with work-type stuff.

So that's it...light is green, trap is clean. For now.


On The Road Again...

Off to Cleveland Clinic, for just a couple of things. Another MRI...remember Bennett has to get one every 3 months, and Neuro-Oncology will be taking a look-see after that. Right now we are scheduled to be back Tuesday night, but as before we have left it open in case any other appointments or things open up.

One difference between this trip and those that have come before.

Carter will be coming along.

Usually, when we go to the Cleveland Clinic (since the distance almost always requires a hotel stay) we leave Carter here with his grandparents. On the longer surgery trip he stayed with his Aunt. But this time, after getting a phone call that Carter was having a few issues with the other kids in the Peer Program at Bennett's new school, it got me to thinking...

See...recently Carter has been really up and down. I haven't spoken much about it yet because it is fairly new, and of course like anything else it is yet another thing for me to try to wrap my brain around in this fucked u…