Tuesday, September 29, 2009

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


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's OK, because she, more than I, really believed that it was already a miscarriage. Somehow, you chicks, you just KNOW this stuff. It stupefies me sometimes with how much more you are in tune with your bodies than men are with theirs or yours. Well, we are in tune with some of your body PARTS, but that's cause WE'RE DUDES. Yes, we like boobies and butts and stuff...it is what it is.

But emotionally she is OK, she also was pretty sad about it, but she dealt with that sadness and went right into her 'my body did what was best for everybody' thing that women are so good at. Did I mention that you women are also so much tougher than men emotionally when it comes to this kind of thing? So much better at getting to the emotional center of a situation?

I asked her if she felt like she wanted to actually get pregnant ON PURPOSE now...now that we know for sure this baby was lost. I asked her if she wanted to TRY to have another child.

Jury is still out. She doesn't know how she feels about that, but I just said take some time, think it over, if it's something you want to do, I'm open to it.

So anyway, that's the news, such as it is. Confirmation of what we already suspected, but at least now we know for sure.

OUT...


Monday, September 28, 2009

Monday Random NFL Musings - 09/29/09


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 @ Jets was a pretty wild game. I watched some of it (let's face it, the Ravens game got a little boring). Wow, the Jets are 3-0 and the TITANS are 0-3? I would have predicted the exact opposite before the season.

- Congrats to the Detroit Lions, who finally broke their losing streak. Wow, the Redskins are awful. Jim Zorn's seat just got even hotter I think.


- How 'bout that Favre? His final TD pass to give the Vikings THEIR 3-0 start was vintage Favre and one of the reasons I used to love to watch the guy. I guess I admit, I still like to watch him, I just have a lot less respect for him since he went to the Vikings. I don't mind the whole retire/un-retire thing for years...but the Vikings? That's just wrong. Can't wait to watch the Vikings @ Packers on November 1st. Next week it won't be as cool with the Packers in Minnesota, but that 11-01 game? Me watchee.

However, two things. Number one? That pass was more luck than skill, but that's Favre. he takes the chance. That's why he is the Interception King as well. And number two? I am SO looking forward to Ngata or Suggs showing that old man just what the turf up there in Minnesota tastes like in a few weeks.


- I never thought Cincinnati would be able to pull it out, but SWEET to see them beat the Steelers. I loved it. Gives Baltimore that much more room at the top of the division and it breaks Big Ben's Ohio streak. Look, I respect the Steelers, but I still want them to lose because I want the Ravens to win the division. Week 12 can NOT get here fast enough. Oh...now, by the way, the Bengals can go back to losing. Next week? GO CHARGERS!!!

- It was interesting to see Kolb have a good game. And a good sign. I don't think Vick will stick around in Philly long term and as McNabb gets older it'll be good to see if Kolb really is the heir apparent. He was yesterday.

- The Cardinals looked so sluggish against the Colts last night. And, can you imagine how good the Colts would be if they had a powerful running game in addition to their passing game? They'd might be the dynasty of this decade and not the Pats. Although that Brown dude they drafted seemed to show some promise.

- I think I am gonna give up Fantasy Football for good next year. I suck. I've never won it all, rarely come close, and my teams continue to be bad. In times like these, it's just pissing money away. I have to recognize my limitations and accept that I am terrible at Fantasy Football and go back to playing those old-style electric football games that the players bounced around on. Remember those?


OUT...

Sunday, September 27, 2009

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 randomly share some things, with no plan for structure or storytelling, I'm just going to write a list of what's eating at me right now and see what happens. In cases like these, where you have some things blocking you in the head, it's the only way to go.

1. Been sick. Me, that is. Thankfully no one else has picked up the cold I have, which started to tickle at me on Thursday and attacked me fully on Friday and into today. Though I will say this. MAN OH MAN is a cold easier to deal with than the old days when cigarettes and I used to be partners. Coming up on a year now of no smoking, and the way my body processes things like a cold is so totally different it's like night and day.

2. A member of Jen's family has been diagnosed with stage 4 lung cancer. I am not going to reveal who unless I have permission, but we've all known for a while, couple of months in fact, and not being able to talk about how it affects us and how we feel and navigate our lives is not helping. It's very hard, on everyone, and it sucks. I can't express enough how much I hate Cancer. Hate, hate, hate.

3. I know the power of positive thinking is important, but why does it seem to me that everyone I know, in some way, is having a shitty year? Is it just my perception of life affecting my viewpoint or is it really just a bad year? I know very few people who I would look at and say...'Now HE is a happy guy/girl!' Why is that? Is it the filter I use because of what is going on around me, or is something really off about this year in general?

4. My son Bennett had brain surgery about 4 weeks ago. He hasn't had a seizure since August 28th. I should be shouting this from the rooftops and celebrating how great this really is. And yet I find myself embarrassed to go on the old message boards I used to go to, I find myself feeling horrible beyond belief to bitch about anything with Bennett while I see and hear my friends who still have not achieved any seizure freedom. Their pain is so real. Though they would be the first to tell me, and have, that I should not feel this way.

5. Consequently, as a result of that brain surgery, I was expecting Bennett to amaze me, like a circus monkey or something. I figured he would be all kinds of progressive and cool with learning this and learning that and doing new and amazing things. That isn't happening. He doesn't mimic the way I think he should, he doesn't act in ways I thought he was supposed to. Maybe his mind will never snap back, maybe it will just take time, and maybe I am Mr. Asshole of the Universe for having any expectations at all right now. I just don't know what to feel about it, and it's been weird for me. Then there's that guilt thing...he doesn't have seizures any more, but that's not enough for me. Selfish or just wanting the best for my kid? He's going forward by mere inches, and I want yards. This makes me feel like a jackass a lot of the time.

6. I don't know how to wrap my head around this whole brain cancer thing. Am I supposed to go down that road now? Because I am avoiding it like the plague. And since I am not really going out to try to find boards and stuff about that and possible outcomes and I am seemingly ignoring the fact that he had a very rare brain cancer just removed...what does this say about me?

Is it fear, or just a reluctance to face The Truth? What the hell is keeping me from actually opening that door? Is it going to take a return of the tumor for me to enter that world? That world is a frightening place, but not necessarily less or more frightening than the world of epilepsy and Infantile Spasms. Am I a coward for avoiding this or is there some other thing at work in my life that is somehow forcing me to back away in fear?

7. Why do I have such an anger toward anything related to God lately? I've witnessed things that, in the old days, I would consider miraculous. Hell, I have a few stories I could tell you that the devout would say 'WOW, if THAT isn't the hand of God I don't know what is!' I used to believe that too. Why am I so quick today to turn away from it, to wallow in anger about it...to refuse to acknowledge the divine, when I used to be able to do so rather easily?

8. In the last week of July, my wife and I conceived a third baby. When we finally found out, in late August, we were blown away. When her period was late we attributed it to the surgery stress, but then she took some EPT's and got the positive results. During the first week of September she proceeded to take 5 more tests, all positive, while waiting for an appoinment with her OBGYN to get final confirmation.

It was beyond belief in many ways, the ONE time in maybe four months of the most stressful time in our collective universes we actually found time to be a couple resulted in a conception. This, too, like many other things this summer, has been kept under wraps, not to be revealed publicly until we had absolute confirmation and enough 'time had passed' to feel comfortable announcing to the world that we were pregnant.

Total shock gave way to acceptance gave way to embracing the idea. We started picking out names, daring to dream that maybe we'd have a girl, something both of us admitted we've always wanted. Those dreams turned the wrong way when around a week or so ago when she began to severely cramp, she began to spot bleed, and then she began to have more than just blood being released from her body. A visit to the OBGYN this past week only gives us a half an answer, but this Tuesday we find out for good something we both already really know. We lost this one.

Stress...stress is such a powerful thing on the human body. That's what I figure happened here. The stress of the surgery compounded by everything else put too much pressure on Jen and her body decided that this was not the time. We've come to some terms with that, but I'd be lying if I said it didn't affect me harder than I expected.

I found myself viewing it the way Sgt. Mike Horvath (Tom Sizemore) thought about Saving Private Ryan. He said 'I don't know. Part of me thinks the kid's right. He asks what he's done to deserve this. He wants to stay here, fine. Let's leave him and go home. But then another part of me thinks, what if by some miracle we stay, then actually make it out of here. Someday we might look back on this and decide that saving Private Ryan was the one decent thing we were able to pull out of this whole godawful, shitty mess.'

I had started to think along those lines, that this was something pure to take out of 2009. Which of course then makes the guilt over not being as gleeful about the lack of seizures and still focusing on the severe delays Bennett has all the more powerful. But the other thing is just not really being able to figure out how I am supposed to feel about this miscarriage. It's another thing I wasn't prepared for and I don't know how to process the emotions about it.

So there ya go.

There's my list of what's got my panties in a bunch right now.

So glad to have it off my chest.

But this is my thing really, this mental battle over so many things...what I should and should not be grateful for, how guilty I feel, how filtered my vision has become, how negative I often feel. It's an inner turmoil that I don't expect to find answers to very easily. NOR do I expect them in any of your comments. Maybe there AREN'T any real answers, ya know? But, since I at least got some of it out of me finally, maybe I can go back to some regular writing again. Who knows?

One of my best friends says that I am the Master of the Un-Related Segue, and that I totally agree with. So while this post has a lot of shit to digest, for you AND me, let us not forget that it is Sunday, and the Ravens play Cleveland today at home. I expect the Ravens to be 3-0 when they go to Foxborough next Sunday to play the Pats.

Hey...it is Sunday, after all. I'd be remiss if I did not mention that. :)

OUT...

Wednesday, September 23, 2009

A Letter from Marissa's Dad


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 Bunny.

If you'd rather do neither, that's fine too- but please address your blog reading public about this. Questcor has taken enough of our money and uses our children as shining examples of how their business process helps us, and disregards the fact that our insurance companies have paid them hundreds of thousands of dollars collectively. They speak a good game of promoting awareness, but I still have yet to see anything tangible, and buying a buffet table at a neurology convention and calling it "awareness" seems hollow to me.

It's hard to get a group of anybody to do anything in conjunction. Maybe this time, if we all speak out at once, we can get something tangible to happen. Please send this email to any other IS bloggers you may know. If awareness is what they want, then awareness is what they will get.

-Mike
Marissa's Dad


Mike's a good dude and makes a lot of good points. You really should check out his blog. Well, you should be doing that ANYWAY, but especially today. :)

OUT...

Tuesday, September 22, 2009

I Got Nuthin'


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 I feel like I do when I can't find my keys. I know...makes no sense, only analogy I have.

B. People check in, there are regular readers of this site, who come for info, for updates, and hopefully some people actually come to GET some entertainment, so there is the Obligation Factor.

And...

C. I'm bored out of my mind right now. No idea why either. I have a million things to do and no motivation. Procrastinate much?

So, that's it...there's my blog post about nothing. Eat your heart out Seinfeld. Well, it is not about NOTHING. I could always share this very unusual photo I stumbled across while searching the Internet for a Godzilla costume.


I guess THAT'S something.

OUT...


Sunday, September 20, 2009

But Sunday Renews


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 enough to preemptively say things like 'You can't blog about that.'


I've spent the weekend alone so far, with Jennifer packing up the kids and taking Bennett and Carter to her sister's house. They won't be returning until sometime tomorrow, but I won't get much time with them then either, since tomorrow night is a 'lecture' of sorts on Understanding Your Medicaid Waiver or something along those lines.

Not sure if I ever mentioned that in these pages before or not. Earlier in the year, because of Bennett's condition, we applied for and were granted one of the ten Ohio 'waivers' for Medicaid assistance for Bennett. What does that mean? Fuck if I know, really. Jen is the medical professional and the smart one of this Duo, but as far as I understand it, because of his disabilities caused by his condition, he qualifies for Medicaid on anything that private insurance does not cover. And sometimes our insurance company does not cover everything.



It's actually quite a relief to know you have that Ace Up Your Sleeve should the need arise, there are also things that can be applied for in this Medicaid waiver system, relative to the states Early Intervention program, for his therapies, help in Day Care, school and so on. You have to re-apply annually, as it should be, but that's to be sure that the waiver goes to those who are in the most need. Should Bennett, post-surgery now, be able to start making the improvements we all HOPE he'll make, he won't be on the Medicaid Waiver list anymore.

Fine by me.

I am WAY off track. Anyway, because of that meeting Monday Night, I won't see the kids much at all until Tuesday. Miss 'em. Haven't spent this long away from Bennett since well before the surgery. Makes me uneasy.


Saturday, I had the house to myself and turned 42 at the same time. 42. Wow. I often ask myself if my life is half over by now, or even more. Can I make it to 84? Not unless some things change, like what I eat and exercise and managing stress. I made some great strides last year by quitting smoking, but by then was the damage already done? Dunno. We'll see. I hope to at least live long enough to be able to see my kids grow to be adults. That'd be nice.

So, with that, and a few other things causing me to be a bit in the dumps, I went out after doing a few chores and bought myself two video games to celebrate. Picked up Ghostbusters and Madden 2010. I haven't cracked the seal yet on the Madden, but I did play through two levels of Ghostbusters, and so far it's been fun. As great as the hype? No. But so far the nostalgia factor is cool, the voice work is great and the story and gameplay are fairly interesting.


I also started watching Kill Bill Volume II. Never seen it. Saw Volume I, never Volume II. Only got about 1/4 into it before I was sleepy and then it was off to bed. I'll try to finish it up some time this week, but might not have a chance cause the Mrs. HATED the first one, so I'd have to watch it while she is not around.

But now it is Sunday, and as it is with EVERY Sunday beginning in September and lasting through January, Sunday always, without fail, renews me. No matter what goes on in my world around me, on Sunday during football season all the accumulated bullshit is washed away for the day, as I watch me some freakin' FOOTBALL. (Though admittedly, Saturday's are starting to have a slight twinge of that now that I live in a VERY college football town and often find myself with college football on the tube on Saturdays. I'd be lying if I didn't admit to having the Ohio State game on Saturday on while I was folding clothes and junk.)


So today, the Ravens travel to San Diego to take on the Chargers. It's not an easy pick if you keep up with odds makers and bookies and shit like that. Frankly, the Ravens won against Kansas City last week, but it was a cupcake game, so I don't know how good the Ravens offense really is. It LOOKED good but it was against the FREAKING Chiefs. What was more startling were the amount of points the much vaunted 'D' allowed against the FREAKING Chiefs. But, the Chargers barely squeaked out a win against the lowly Raiders, so who wins this week's game between the two? I've seen some people giving odds for either team to win, so it should be a nail-biter.

That's at 4:00 PM EST, since it is being played in San Diego. The Sunday Night game is the Giants @ Cowboys, which I will watch as well. Both teams are division rivals of the Eagles, but I detest, DETEST, the Cowboys and really would love to see them humiliated in their debut of their new, expensive stadium. I'd like it to be as embarrassing for them as their loss was to the Ravens at their big 'celebration of the last game at Texas Stadium' last year. Or even better, the ass-kicking that the Eagles handed them on their last game of the season.

For the 1:00 PM game, I have to decide which game I want to watch. Here are the choices:

Carolina Panthers @ Atlanta Falcons (Um....NO)
Minnesota Vikings @ Detroit Lions (Yawn...though I have yet to watch a Favre game this year, but it's early.)
Cincinnati Bengals @ Green Bay Packers (Cincinnati BLOWS)
Houston Texans @ Tennessee Titans (Supposed to be lots of rain...LOVE that.)
Oakland Raiders @ Kansas City Chiefs (The FREAKING Chiefs?)
New Orleans Saints @ Philadelphia Eagles (E-A-G-L-E-S...)
St. Louis Rams @ Washington Redskins (Wow, looks like the 'same old sorry-ass Rams this year again, sad. Can they go 0-16? Though they DID upset the Skins last year didn't they?)
Arizona Cardinals @ Jacksonville Jaguars (Cards on the East Coast at a 1:00 PM start? Yuck. They'll be killed.)
New England Patriots @ New York Jets (Interesting...)

Now, normally I'd go right to the Eagles game. But here's the thing. I think the Eagles will lose to the Saints with McNabb injured, and not sure I want/need to see that this weekend. I'll probably peek in from time to time, but the game I most want to see is actually Patriots @ Jets. Yes, admittedly I prefer the AFC, but also I liked all the smack talk leading up to the game, it's a division game and it promises to be a better contest overall to watch. Besides, I'll get my NFC fix tonight. Plus, I have other motives, I need to study Mark Sanchez for other reasons. More on that sometime soon.


Anyway, this is what I love about Sundays in Fall and Winter. Picking the games, setting my Fantasy Football line-ups, figuring out what games I'll watch with the Sunday Ticket, and so on. And yes...choosing which jersey to wear. Doesn't matter that Friday sucked, and Saturday sucked as far as how I was feeling for both days.

Because come Sunday, I am renewed.

Again.

Friday, September 18, 2009

Surgery Day for Julia


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.

Wednesday, September 16, 2009

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 hold him. So I did. These were the last Infantile Spasms caught on video. He had two clusters post-op, one Thursday Night the 27th and one Friday Night the 28th, and none since.

Right After Surgery



A quick video I took of Bennett right after the surgery. He was in an out because of all the meds and anesthesia and stuff. But it was good to see him after waiting for 6 hours and holding my breath to see him again after letting him go and handing him over to the surgery team.

Bennett Sippy Cup



Some post-surgical interaction with Bennett at home, sutures removed. This was taken a few days ago. These are some of the good moments, where he is calmer, more relaxed. though still not very talkative, but I can live with that. But at least it is not the biting, aggressive, out of control type of thing we'd been seeing, which we are seeing a TEENY bit less of each day and that's GREAT. This is what reminds me of him prior to the surgery and reminds me that Bennett is still in there, just overloaded with input right now.

Though you can see at the end how he raises his hand as if to slap me. Sometimes he'll succeed, just out of the blue. THWACK! Gotta be frustration...he WANTS to say DADDA here, he just can't quite work it out, and this was a word he has used even during Seizure Time. It's in there, he just has to figure out how to get it out. We were warned that post surgery the SINGLE most difficult thing for Bennett will be his language skills. That will require the most work and the most effort to build for him.

Anyway, thought you might enjoy. This post is mainly for you, Mom. I know you miss him. We should Skype soon, but we just never know when he will be amenable to it. The mood shifts come and go.


Tuesday, September 15, 2009

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 goes back to getting care outside the home, ala Day Care or the GP's, if they'll still do it. Saturation point here I come. Oh wait...already there.

Mentioned this in a comment, but had two nice calls, one with his Case Manager and another with someone from Cleveland Clinic. They said it was cool to go ahead and start the Vigabatrin wean. I'm glad they decided that, since we were gonna do it anyway. Slow wean, 250 every two weeks, and that was, ironically, EXACTLY the schedule I had planned.

Paging Dr. Lilly, paging Dr. Lilly...STAT!

There was a moment this afternoon, while I was trying to get some work done, where I almost just picked up my machine and threw it across the room, the screeching was that bad. Sounded like Rodan had entered my living room below. And no matter what I tried to do when I went down to try to help, well, that was when he turned into Vampire Boy, mentioned above.

Well, shit happens, right?

The CC guy said this was fairly common post-surgery. Sensory Overload was what he called it, what a lot of people have called it. He did say if we had ANY gut feeling at all whatsoever about his pain increasing, then by all means go to an ER and get some tests done, though he also said it was not likely based on our descriptions of how he was being.

Funny...when I actually said that I felt a bit awkward about taking up so much of his time on things that were probably trivial, he said something that reminded me of why the Cleveland Clinic is so great. 'No fear you have over your child's well being while recovering from a surgery like this is trivial.'

So...that's the latest. I hear Rodan in the other room. Gotta go deal...

But, still no seizures, and that's a good thing.

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...

Monday, September 14, 2009

A CC Visual Retrospective

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 started in February that will continue probably for the rest of our lives.

No seizures yet, knock on wood, but some odd behavior issues overall. I'll go over that in some detail in another post.

But you knew that already, didn't you? :)


Sunday, September 13, 2009

NFL 2009 Season Is On


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 a hierarchy of who I will cheer for. So I'm covered there. There is no conflict.


See, I am not just a Baltimore Ravens fan...I won't allow myself to be defined by that label. I am an NFL fan, I will watch many games in a weekend. I read the schedule for the upcoming weekend and with the DirecTV Sunday Ticket I pick and choose the games I intend to watch. I sometimes tape games that are on while the Ravens play so I can watch them as well.

During the week while the season is underway, I watch NFL Replay on the NFL Network, showcasing games in one hour, with all the chaff separated from the wheat. I watch the NFL Top Ten shows, and keep up with what's going on in the NFL by watching NFL Total Access and Playbook to get ready for the upcoming week. I watch the TV Series America's Game and I study and read NFL history. I am fascinated by history, and I am fascinated by the NFL, so that's a good marriage.


Even if you aren't a huge fan of the NFL, I recommend the show America's Game to anyone who appreciates history, sports or otherwise. It is a fantastic documentary series about the Super Bowl champions year to year and they did a sub-series called The Missing Rings about some of those teams that SHOULD have been Super Bowl Champions but somehow did not. Teams like the 98 Vikings and of course the Buffalo Bills who lost the big game 4 years in a row.

So here I sit, excited. Can you believe it? With all the shit that has been going on for months? I am excited and giddy about the new NFL season. The season 'officially' began last Thursday with the Titans @ Steelers, and although the Steelers are my sworn enemy, I cannot deny my respect for their team and what they are able to do or marvel at how Ben Roethlisberger can stay on his feet while other QB's would be face first in the grass. I watched the entire game and felt the tickle about the NFL getting going (I don't watch a lot of pre-season stuff) and as I write this, Sunday, I am listening to NFL Countdown on ESPN which I watch in the morning until I switch over to the Fox coverage starting at noon.

Then, it's off to channel 705-1 HD, to watch Kansas City @ Baltimore (I LOVE YOU DIRECTV). Since I live here in Ohio now (instead of Baltimore) I can see every single Ravens game with the Sunday Ticket, where usually I would only see them if they were on at night (rare) or if they played the Browns or Bengals (MAYBE). But none of that matters with DirecTV, I get EVERY GAME.

I'll DVR the Eagles/Carolina game and check out highlights on the Red Zone channel during Ravens halftime. At 4-ish I'll be watching the Giants game, because there are only two games in the 4:30 slot today, and the Rams @ Seahawks is not as compelling as Washington @ NYG. Not that I have great love for either of those teams either, but it promises to be a good game and I also for work related reasons want to check out Eli Manning. More on that later. The cat's out of the bag publicly about the company I am working for, and I have some things to write about in later posts.


Tonight's game? Chicago is playing the Packers, and I love a good rivalry game, plus I love the NBC Sunday Night Football crew. Dan Patrick and Keith Olbermann are the Batman and Robin of sports highlights IMHO, they are fantastic. I'm bummed that Bettis is gone, but it will be interesting to see how Rodney Harrison adds to the mix, though I do still hate Tiki Barber on that show. What a load.

Sunday Night Football, broadcast of the game itself, will be different this year, no John Madden. HUGE bummer that he is retired. But if you need a great color man to sit next to Al (Do You Believe in Miracles) Michaels, then you could do a lot worse than Chris Collinsworth, my second favorite current color commentator under Madden. Well, since Madden is retired I guess Collinsworth has become my #1.

Tomorrow night it's a Double Header on Monday Night Football. I'm definitely in for the Patriots at 7:00PM, not sure if I will be watching Chargers and Raiders at 10:15PM, though I will probably. I like watching the Chargers when they aren't up against one of my teams I rank higher on my 'Root List', and I hate the Raiders. But the great thing about MNF right now? NO TONY KORNHEISER. I couldn't stand that comb-over a-hole. His replacement? Jon Gruden, Chucky himself, in the booth. LOVE THAT. Although I'd rather see Chucky on the sidelines somewhere.

I've got my Ravens jersey on, my Eagles nerf football out of storage to hold all day, and my 52-ounce Bubba Keg football cup filled with water. I'm ready. No alcohol for me...I don't drink often, if ever. But I loves me the ice cold H20.


On to some football...

Saturday, September 12, 2009

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 of any kind at all. Frankly, some pretty strange mood swings. Don't know what to make of it. Post-surgery related? AED related? Tumor related? Just a kid thing and I am over-thinking it related? Who knows.

Enjoy...

Thursday, September 10, 2009

To Be Continued...


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 receptionist-type person contacted someone out there and called us back. But the info was very vague. Here is a best-of-my-ability recap

Receptionist-type Person: Is this Mr. Lilly?

Me: It is.

Receptionist-type Person: I spoke to your wife earlier, I have some information regarding the Tumor Review Board.

Me: Oh, great, we were hoping to hear back.

Receptionist-type Person: Dr. Bingaman basically recommends serial MRI at this point.

Me: What does that mean exactly, you mean fairly frequent MRI's, keep an eye on it kind of thing?

Receptionist-type Person: Yes.

Me: But when do we start that?

Receptionist-type Person: That would be determined when you meet with Dr. Bingaman and Dr. Tekautz, a Neuro-Oncologist.

Me: But when does that happen?

Receptionist-type Person: We'll be coordinating with Dr. Takautz office to try to figure out a time that falls in that window of follow-up so when you come up here you can see both Doctors on the same day.

Me: Oh...OK, so you are going to be contacting us with this date, we do not need to call you back to follow-up?

Receptionist-type Person: No, we'll call you when we get the details worked out.

Me: OK. Did they mention anything about chemotherapy?

Receptionist-type Person: I don't know anything about that, sorry.

Me: OK, thanks, I'll let my wife know you called and let us know when the appointment will be.


And that was that.

Essentially? It's the Do Nothing/Wait and See Plan for now. Joy. I love those kinds of plans. It makes each and every day such a wonderful, happy experience.

I'm just a little irritated that I didn't get this news from anybody who would be considered an expert, even an NP, a doctor or something like that, someone to whom I could direct some fucking questions.

I understand why...they probably don't KNOW anything yet and they likely WILL be scheduling that MRI for 3 months from surgery or SOMETHING like that, and from what Jen researched these kinds of tumors MAYBE don't respond well to the kind of chemo a kid can take we THINK though we aren't SURE but I should not be sitting here at my fucking computer GUESSING at what MIGHT be the reasons of what MAY or MAY NOT be happening MAYBE sort of SOMETIME down the line.

It just sucks to have to be in a position of waiting a few weeks to get in front of anyone who actually DOES know something.

That's fucked up.

Anyway, that's the news, for what it's worth. Which isn't much. Hope you enjoy the pics of a stitch-free Bennett.


OUT...

No News is No News


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.


Wednesday, September 9, 2009

Kaiju! Um...Gesundheit!

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 sending us even further apart than we already are.

These are the casualties of a life infiltrated by a serious medical condition. There are others. Passion about certain aspects of life, about yourself, and on and on. There are times, and I guess I should consider myself fortunate enough that they occur, when Carter and I can connect. I look forward to these times, and I often think of ways to put something in his path that he and I can get into together.

Enter: Godzilla.


One night a few weeks ago, Jen DVR'd a Millennium Series Godzilla flick called Godzilla: Tokyo S.O.S.. Carter watched it and he was about as hooked as I was on Godzilla when I was his age.

See, when I was 5, we had shit for cool TV or movies. Some of the coolest stuff to watch was on the grainy UHF stations that we could barely get in on our rabbit ear antenna on the TV. Shows like Speed Racer, Johnny Sokko and his Flying Robot, Ultraman and movies from the Godzilla series were AMAZING to me in my first decade of life. Of course, then 1977 came along with a film that took my imagination away from these types of things and transported it to a galaxy far, far away, but I've always had a soft spot in my heart for the genre of the 'giant monster movies' of Japan.


They are called Kaiju, which literally means 'strange beast', but is often translated in English as 'monster'. Specifically, the term Kaiju refers more to a genre of tokusatsu entertainment featuring giant monsters. Tokusatsu translates to 'special effects'. Obviously, the most famous of all of these giant monsters is Godzilla.

But I remember as a kid being blown away by some of the great battles between Godzilla and MechaGodzilla, King Ghidorah and the rest. To me it was just fun, scary mayhem. As an adult I appreciate it on a whole new level.

So lately that's my meeting point with Carter. I bought him the DVD Godzilla: Final Wars and as shitty as a lot of the human/alien/mutant aspect of it is with the Matrix rips galore, you can't deny it has some great 'suitmation' special effects and some fun battles. He LOVES it. And I liked some of the battles, too.


I even picked up a sweet BanDai Mecha-Godzilla 3 and Godzilla at the local TRU. These are the larger scale deluxe roto-vinyl versions of the characters. Too bad there was no Mothra in that scale, cause man does he have a thing for Mothra. He doesn't go far without them.

I want to keep this connection going (since Star Wars sort of fizzled out with him with no new Clone Wars to watch and he still thinks the original trilogy is boring) so I have more DVD's on the way. I picked up a couple of the more recently released boxed sets, that have some good widescreen versions of films from all three eras...Showa, Heisei and Millennium.

See, fans of the kaiju genre often argue about these three 'stages' of the Godzilla film series (the longest running film series of all time, in case you were wondering, longer than James Bond). Of course, none of those particulars matter a hill of beans to him. He just wants to see giant monsters battle and that's what he's gonna get. And I'll enjoy them for the cheese factor. But if we can watch them together or spend some time with each other as I TRY to teach him how to play Godzilla: Save the Earth on X-Box (hard for him at 5 to get the controls just yet), then that's all that matters to me too.