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Showing posts from September, 2009

Yes, Regis, It's My Final Answer...

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And the answer is...

C) Miscarriage.

As I mentioned in my rather lengthy (SURPRISE!) post about all the junk that's been going on in our lives, the night of September 18th my wife, Jennifer, who was pregnant (a secret I had been keeping, publicly, until Sunday), started to have some bleeding that got worse and worse over the course of a few days. After some testing last week and more testing today, her OBGYN has given us the bad news. Definitely a miscarriage.

Now...how do I feel?

About the same as I did before, maybe a bit worse. I've held on to some lingering idea that MAYBE this was just some spot bleeding and nothing more, but I kind of figured, as Jen did, that it was more than just that. The idea of it really has been bothering me a lot, I've been depressed over it, and still am, probably more today than before because of the 'finality' of the answer. But now that I know for sure I can start the acceptance/healing part of it and move on.

How does Jen feel? She'…

Monday Random NFL Musings - 09/29/09

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I realize yesterday's post had some pretty heavy shit in it. Hence, today I avoid that completely, and keep it lighter, with some of my impressions and thoughts about Week 3 in the NFL. Obviously this ignores the contest tonight that takes place twixt Carolina and Dallas. But honestly? Other than the questions about which Tony Romo will show up and how many interceptions Jake Delhomme will throw, I just don't care much.


- That is not the kind of thing you want to see in a Ravens game if you are a fan. Gotta admit my heart skipped a MIGHTY beat when I saw Lewis on the ground, not getting up. Thankfully the injury was minor and he was back out there, but for a couple of minutes I was like 'No, no, no...'

- The Ravens are off to a 3-0 start. They've had one other. 2006, the year they went 13-3 and then got beat at home in the playoffs by the Colts, who beat the Ravens by ONLY scoring field goals and of course they (Colts) went on to win the Super Bowl.


- The Titans @ Jet…

Welcome to The List of The Shit in My Head

You know it's been a very long time since anything related to my family or how we feel or how Bennett is doing has been on this site when you get a phone call from your Mom, wondering if everything is OK. And that's from your MOM, who already has the inside scoop on most of your life, what has been going on in it, and what has been going on around it.

I can only imagine what some of you might be thinking, especially those who only get information from here and no where else, or those of you who know one simple truth, things have to be weird for me NOT to be doing something I really enjoy, and that's writing.

Things have been weird, things have been hard to navigate, and consequently my head is in a place I am not familiar with. In fact, it's still so scattered, still so all over the map, that I don't know how easily I can craft THE piece of writing that will sort of weave a tale and get everyone up to speed on where where we are.

So instead, I am just going to random…

A Letter from Marissa's Dad

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Got an e-mail today about a very important and disturbing subject. Mike, father of Marissa (a young girl with Infantile Spasms that assault her on a daily basis), gave me his permission to share it with you.

From: Marissa's Bunny
Sent: Wednesday, September 23, 2009 3:26 PM
To: Ken Lilly
Subject: The Child Neurological Society, Questcor, and Infantile Spasms Awareness Week

Greetings, fellow infantile spasms parents! You may or may not have heard of me or Marissa, but we're in the same boat as all of you. Questcor and the Child Neurological Society are teaming up for an Infantile Spasms awareness week, but it seems to be a very focused event, and is only taking place at the annual CNS convention. This doesn't seem quite right to me. Following is the text that's being posted on Marissa's Bunny today discussing this, and I'd very much like it if you could either link to my blog with the post, or enter the text on your site as well with attribution to Marissa's B…

I Got Nuthin'

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Ever have one of those days or group of days where you just don't have anything you feel like saying or talking about? Or if you do, you just don't really have the energy to do it?

Well, I'm in one of those ruts right now. Stuck way deep down in it. Lots of stuff to write about, I never hurt for subject matter, I just haven't had the energy to wrangle any of my thoughts together into something cohesive and entertaining.

Each time I've tried to sit and write a blog entry since the one I wrote Sunday I get about three sentences in and am like...NAH...don't feel like going down that road. Try it again and...NOPE...I don't like the looks of that either. Third time's the charm right? I start again and then...UM...what are doing Lilly? You got nuthin'.

And that, dear readers, is the truth of it. I got nuthin'. And YET...I am posting anyway, because that's how much I:

A. Obsessively Compulsively and quite Disorderly need to do it as often as I can or …

But Sunday Renews

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Man, I've had a pretty shitty weekend emotionally.

But Sunday renews.

For some people, it's church and God. I envy those people cause they get their renewal year-round and don't need a satellite dish. Me? I go to the Church of the NFL, and Sunday is when I express my faith. Today is a bit more welcome than usual, because of the aforementioned shitty mood.

Some of the reasons why I can't really talk about. Yes, yes, I know...you are STUNNED that I hold anything back from you, faithful reader. And I do hate keeping secrets. But truthfully, I have some restrictions placed upon me in certain circumstances regarding things I am allowed to write about and things I am not allowed to write about. These restrictions come from within and without, but mostly without. I am, for the most part, a book that is SO open that the binding is creased to where you can't even make out the title and author anymore. But other people in my life are not the same, so some of them know me well…

Surgery Day for Julia

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Surgery day is a VERY difficult day for the parents, as I know all too well. One of the bloggers who I only recently started following has a daughter, Julia, who is having brain surgery today.

It wouldn't hurt, if you have some time, to head over to their blog and send some warm thoughts and wishes and prayers.

I know that seeing those kinds of things helped me a lot on Surgery Day, so if you can peek in and say hi.

Bennett Pre and Post Surgery Video

Haven't showed some of the video from the Cleveland Clinic trip. Let a few of the movies I took up at Cleveland Clinic and back home lately load up overnight to YouTube. Always takes forever and slows yer machine to a crawl, so it has to be done that way.

Anyway, here they are...

The Night Before the Surgery



Bennett was up early, like 4 AM or so, which was fine cause we had to be at the hospital at 6 AM for the surgery. Note the feducial markers which he did not try to remove at all. He was having a blast. What is interesting is that we used this video (watching it on my camera and passing it around) while in the waiting room as Bennett's surgery proceeded to make ourselves feel better.

The Beginning of the End



This was the start of the last set of seizures I actually witnessed on August 27th. It was the morning before the surgery, in the waiting room. I was filming and he started to have a set. As I saw that they were growing in intensity I decided to put the camera away and just …

Holy Crap, the Ups and Downs? Killin' Me

Yesterday Bennett had a pretty good day. Less of the inconsolable crying or screeching, aggression and other just non-happy behavior. It wasn't a bad day at all as a matter of fact.

Today? Oy...

Just when you think you turn a corner on this journey of life, you find that you DO turn a corner and someone put a wall there. My nose is pushed in from hitting so many FUCKING walls.

WOW. Just crying and angry and upset over everything, hard to console. Things that used to be easy things that would gratify him, he'll just slap me in the face with it when I give it to him. If he were quicker, I'd have a bite mark on my cheek today. But I was a tad faster. But he went after me like that chick in the Jennifer's Body commercial, no shit. I was stunned by that, I've never had a child go for my face as if he intended to chew it off.

A few moments of calm, but it was a rough, rough day. Hard to concentrate with him in the house. I hate to say it but I am looking forward to when he g…

Introduction to a Good Friend

If you read my blog regularly or know me at all, you know how much religion is a difficult topic for me. It's hard to talk about, it's hard to think about, and I avoid it a lot, even when some aspects of it stare me in the face.

One of these days, I have a very fascinating story to tell you about a friend of mine named Richard. I haven't yet figured out how I want to tell you this story, or what exactly I want to say about it, because it is the kind of story that deserves to be told in great detail, and I have not had the time of late to give it it's proper due.

But trust me when I tell you it's a good story, it'll be worth the time it will take for me to write it and it will be worth your time to read it.

I will put it to electronic paper at some point, but in the meantime I invite you to check out his blog at Daddyspeak. He's got a great post today about prayer, and it says a lot about who he is.

Enjoy...

A CC Visual Retrospective

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I published a WHOLE bunch of pictures to the Bennett Vs. Infantile Spasms/Brain Tumor Folder on my Facebook page. Lots of stuff. I find on Facebook it's easier to really deal with the photo management, and the blog is best served by text with images to punch up anything I am writing about. Plus, posting them here requires a lot of formatting work to get it to 'look right'.

But I know many people who read the blog don't use Facebook, so I thought I'd share a few highlights of the trip two weeks ago to the Cleveland Clinic for Bennett's Temporal Lobectomy. SOME of these I may have posted here before, but not many. To save on size, I'm opting for the 'thumbnail scenario', so if you want to click on a picture to see the whole thing click away.





















Hope you enjoyed the look back. Hard to believe it was only a couple of weeks ago. Feels like a lifetime while at the same time feels like yesterday. But it was just one small part of a greater journey, a journey st…

NFL 2009 Season Is On

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Get used to this.

I know, I know...you come here to read about the latest Kubrick or MiniMates purchase, or to read about some old Palisades or ReSaurus toy that I worked on, or to read about Bennett and his progress or the rest of my family.

But hopefully, most of you recognize that this blog is about all of those things and more, but it is really about ME and my connections to those things. See, most blogs of this sort are not necessarily about the subject matter at hand, they are about the PERSON writing and his/her experiences about the subject matter at hand.

Well, like it or not, one of my passions, beyond my son, toys and all that, is the NFL. It is the only sport that I get into with a red hot passion. And I get into it in ways that a lot of fans might look at and say 'WTF?' I have my team that I support and root for, the Baltimore Ravens, but I have other teams I root for. Teams like the Eagles, the Packers and others. When any of the teams I like play each other, I have…

Epilepsy 101: Comprehensive List of AED's

I subscribe to a newsletter on the epilepsy.com website, and occasionally I get stuff I think really should be linked over to. One such article, about a summary of Anti-Epileptic Drugs, makes for some good reading and is a good jumping off point for people with little to no experience with some of the drugs that a lot of us with kids have been familiar with over the periods of time we have been fighting Epilepsy in our own children.

You can find a little more comprehensive info on each drug elsewhere on the site, and on the Internet, but this is a great overview from one of the main physician contributors to the site, Dr. Robert Fisher, the editor-in-chief of Epilepsy.com.

For anyone wondering about Bennett, he's been up and down the last two days. Sometimes very giggly and smiley, other times crying, grabbing his head as if it hurts and uncomfortable, sometimes even a little listless and not very playful or exploratory or engaging. A lot less in the way of attempting vocalizations …

To Be Continued...

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That's sort of how it felt, getting THE phone call from the Cleveland Clinic this afternoon. I'm not entirely sure how to feel right at this very moment. Part of me wants to be mad. Part of me wants to be cool. I'm just not entirely sure I am thrilled with the way things just went down. And I don't mean how it pertains to Bennett's Oligoastrocytoma. I mean just how the whole thing played out today.

So last Friday I got the call that they would review on Tuesday and let us know what the results were. No call came in on Tuesday. OK, got it. People are busy. By afternoon Wednesday, we called them. Nobody called back on Wednesday at all.

So today comes, we call again. We speak to the receptionist-type person again, not sure what her title is and I am not naming names, but she sounds like a nice enough person. Says she'll relay the message again and someone will get back to us.

Ultimately, as it turns out, the NP who I spoke with Friday was out today, so the receptio…

No News is No News

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In case you were wondering, still no news from the Tumor Review Board, or whatever they call themselves. We actually called ourselves yesterday afternoon, and received no call back. And yes, it's true, we have no idea of what to make of that. It's out of character for the folks at Cleveland Clinic.

But the fact is, it's either gonna be 'wait and see' or 'here's what we need to do', both of which have Suckage Percentages. It isn't like the call will be 'um, everything's cool, don't worry about it'.

Anyway, when I know, you'll know.

Kaiju! Um...Gesundheit!

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EDIT: Still no word from Cleveland Clinic on Wednesday, the day this was scheduled to go live. So I figured I'd go ahead and let it post and if any updates on Bennett's Brain Tumor Pathology come my way, you'll be the first to know. Well, actually the fourth or fifth, but I'll post about it quickly, capisci?


Occasionally, you have to step away from the Internet searches about Oligoastrocytoma Brain Tumors and AED medication side effects, watching for seizures and trying to keep a little kid a bit more than a week out of major brain surgery from walking into the wall or falling off the sofa.

More often than not, it isn't easy to let go of this or that week's latest medical obsession. And who gets hurt the worst in these worst of times? Well, other than having nothing at all resembling a real 'relationship' with my wife, or friends, my relationship with my older son Carter hangs by a thin, over-stretched membrane, in real danger all the time of snapping and…