Friday, July 31, 2009

Need Some Help/Advice

OK, so you know Bennett has these seizures. While they are not like myoclonic-astatic seizures or atonic seizures, those which cause you to fall to the ground suddenly, these IS Clusters can and often do, and even more than they used to now, begin while Bennett is engaged in play, while walking around, doing anything a so-called 'normal' child might do.

But, when these clusters begin now, and he is standing, one of two things will happen. Either the seizures will be so severe he loses his balance and falls, OR he will slam his head into the nearest object, which is OK if the object is a soft pillow. However, if the scrapes across his nose bridge today tell us anything, its that these clusters have a better chance of causing him to bang his head repeatedly into HARD objects.

And usually the edge of a table, which sucks as you can imagine.

Now, unless you are watching every move he makes like a security camera with a tracking ball, you might not notice that he is about to have the cluster until WHAM! his head goes into the object ahead of him or he falls to the ground. If he remains standing, another WHAM! may even occur before you can get at his side and guide him away.

Problem is that you gotta be there, because he loses awareness of self or something, because he isn't able to react to bumping his head the way you would if you ran into the table or object. He might not even register the pain the way we do, so he doesn't or can't pull himself out of the way or get to the floor.

What do I do?

This wasn't part of my Parental Manual, I don't know how to live our lives like this, without ever taking your eye off the boy. When Carter was a toddler, I was watchful, I was cognizant, I was paranoid even, but I could look somewhere else for a few moments without putting my son's face in danger.

Those of you who deal with the drop seizures, what do you do? Or do you really do anything because there is nothing you CAN do? I'd appreciate any advice, any suggestions, from those of you who have been at this a lot longer than I have. I bought some edge guard and am in the process of trying to cushion some areas that I might see as possible problem spots, but what else can I do?

Other than shake my head in guilt and frustration, which I can do very easily now, by the way...

Anyway...Happy Nuggets...I know...Happy Nuggets. Hard to sometimes. Rough day. Rough week. Rough year so far. So let's look at some cute pictures, from some that I loaded into Facebook today. Oh and as a side of my greatest friends IN THE WORLD joined Facebook today. I couldn't be happier about that.

Carter's Greatest (Online) Hits: Part 4

EDIT: Remember a couple of weeks ago when I was doing that whole BEST OF CARTER thing? Well, a tragedy that week sort of took me out of the mindset to continue doing it and I pulled the last two. But, since not having a blog going up regularly sends my OCD into a tailspin and since I have the stuff written already, here's the next one in that series.

I'm still a bit too weary, burdened and frankly just depressed to write any final re-cap on the Cleveland Clinic trip. At some point maybe. I do find it odd that I go into a major depression state the first 5 days or so back from any hospital or doctor visit. Severe depression, I'm talking about the kind where you question whether you really want to see the sun rise the next day when you go to sleep or you'd rather just slip away quietly in the night so the pain will stop. Don't worry...I'm at the tail end, only have a couple more days of feeling like Grade A a bit I can downgrade myself to Grade B Shit and move on.

Anyway...on with the Carter stuff...

Just like yesterday's, another blog from the old Creatus Maximus site, this one about a trip to the Columbus Zoo with Carter...

Written on the Creatus Maximus Grey Matters Blog: September 17, 2006
Ah...the weekend, when most folks chill out, take a load off and relax. I envy those I tend to be a bit of a workaholic. It has served me well over the years I suppose, though I often second guess my behavior when it comes to my son.

I had a choice today. Stay home and continue working in the basement (though it is a LOVELY day here in the great state of Ohio) or go to a town fair with the wife and the boy. Since I am going to the big Delaware County Fair on Friday of next week (woo-hoo!) I decided not to go to this one. I figured today's Fair would be just like the last “towny” think I went to, which ended up being essentially a gigantic garage sale of thousands of pieces of junky crap.

Not so...there were cowboys on horses, there was a petting zoo, there were little rides, there were games, and my son had the time of his life according to my wife. He even, just on a whim though I suspect he saw this somewhere, walks up to a sheep (one of his favorite things...he’ll fit in well in this small town) and proceeds to feed it some grass, screaming and giggling with delight as the sheep followed him around and he fed him more grass. That sheep was probably delighted that nobody was trying to fuck it. But I digress...

Lesson? SPEND MORE TIME WITH YOUR FAMILY. When you have a chance, instead of working on a Saturday in a dusty basement filled with thousands of boxes to be sorted and shelved, get OUT of the house, get INTO your car, and have some freaking FUN.

I remembered to do that a couple of weekends ago, when we went to the Columbus Zoo together for a Nestle company shin-dig. Jennifer’s Dad has worked for the corporate food behemoth for pretty much his whole adult life and DAMN they treat their employees right. The summer hullabaloo was held at the Zoo, and they actually had a space rented AND access to the Zoo was had by all of us AFTER HOURS for about 90 minutes, so we did not have to screw around with the masses and had instant access to EVERYTHING.

Now THAT’S a good time. Especially since most of the animals don’t give a SHIT during the day. They lay there like a bunch of...of...animals, licking themselves and swatting flies off their asses with their tails. At least, the LUCKY ones have tails. But who would be excited in that situation, if you were an animal? You are in a place that is nothing more than a 1960’s Star Trek set with Styrofoam boulders and a painted sky, it’s hot, it’s sticky, and they have to sit there in their own poop and smell it...I mean, what kind of life is that? But as dusk approaches the denizens of the animal kingdom really start to get jiggy wit’ it. That was the best part.

So here now, journey with me, in a little visual remembrance of that weekend’s festivities, in the place made famous on Late Night with David Letterman by Jack Hanna, the Columbus Zoo.

And that’s least until the big County Fair this Friday. I’m thinking it’s time for a few mpegs on that trip!

SeeYa Tomorrow…

That County Fair we went to didn't end up being all that bad as I recall. Besides, the fact is that if Carter was having a good time at that kind of thing that was all that really mattered.

Can't wait for the weather to start cooling off again. We hit the Zoo many times a year, since we have a yearly pass that we buy. But going in the summer? Bummer. Even the animals hate summer heat and generally you don't see them doing anything if you go in the hot months.

But September-December? SUPER active. And Spring? Fuggedaboudit.

Tuesday, July 28, 2009

We're Back...I Think

I am just plain tired.

It's been a long, long time since I felt this way. Maybe after a trip to Asia. But Asia never had me emotionally wiped like this, this is a double whammy of physical fatigue and mental exhaustion. Why is it that a Thu-Tue trip to anywhere BUT a hospital for one of my kids would not leave me this wiped out?

Anyway, just a quick note, we had the 3.5 hour Neuro-Psych eval today, then high-tailed it outta there. I hated it. It just showed me how seriously delayed Bennett is in a lot of cognitive areas. But waddya gonna do? We gotta know where we are before we can know where we're going and look back at where we've been.

Now it's just waiting until the case review on the 25th. Joy.

More later...gotta pick up the pieces, try to get re-situated to life, you know how that goes. Laundry, cleaning, prescriptions, work, etc.

I'll leave you with a very odd photo I snapped after Bennett got his leads off and was jumping around the hospital crib like a banshee just waiting for the discharge to go through.


Monday, July 27, 2009

Weekend at Cleveland Clinic Update 5: 07-27-09

It's Monday afternoon, and we should be arriving, right around this time, back at our house. We ain't.

We did get discharged today though. Bennett is no longer enduring EEG Hell. However, Bennett's 'review' and presentation of all his test results and evaluations and so on was, is, scheduled officially for August 25th (yeah I know FUCKING HELL I hate more MOTHERFUCKING waiting but more on that later).

One piece of the puzzle that they want to have completed, the last piece, is a Neuro-Psych Evaluation. Here, they do that before they do a surgical presentation. Don't do it everywhere, here they do. MAINLY because of his age, they say, they want to get a baseline study down of who he is and what he does before they go cutting away at his melon.

Soonest we can get an appointment for that? Mid September. Yeah, that's exactly what I said.

Anyway, we check out of the hotel, or Jen does after going there to shower (I stay in the hospital room with Bennett) and she makes the arrangements to have all the bags I packed last night taken down and loaded in the car. We'll pick the car up after Bennett is officially discharged.

Jen comes back, we get the leads off of Bennett, hang out. Waiting, waiting, waiting, you know how discharges go. Then the nurse comes in and has news.

Anyway...somebody somewhere pulled a string. They got us in for a Neuro-Psych eval tomorrow instead of September. Someone called in a favor. No way are we gonna NOT take it, so we agreed to it, discharged from the hospital, carried our hospital bags and Bennett (we forgot his stroller, I may have forgotten to mention that) the 2 blocks over to the hotel.

Then asked them to check back IN to the place.

Same size room. Dramatically different rate (boy people can really fuck people in need over, never ceases to amaze me).

So here I sit, typing, while Jen takes a nap with the boy.

After getting in to this room, it isn't like we can really unpack, we just sort of unload the bare minimum of what we need. And I overpacked, 2 extra days worth, just in case. Jen packs per day, never overpacks. I have clean clothes to wear, she does not.

But then we realize something. Hey, they started Bennett on a medication two days ago, wrote us a scrip, and we don't have any of this medication and are not on our way back home to any kind of pharmacy. OOPS. another 10 bucks to access the internet at this hotel so I can see if there is a Meijer or Wal-Mart nearby. I know there is a CVS, but hell, since I have to have the car pulled out of the garage (they only do valet parking) maybe we can find a place where we can also buy a 15 dollar stroller. Be worth it rather than carrying Bennett across the Cleveland Clinic Campus. And Jen can at least buy a T-shirt or something that's clean.

Found one, wrote the directions down, headed out. I think it's bullshit I gotta spend 16 dollars a day to park my car in this hotel's fucking garage since I am paying for a room, But THEN the valet guys expect a tip coming AND going? Ridiculous.

We're back now obviously. Jen is super-pooped. Bennett is napping now too, but holy crap he was giggly and playful and jabbery all afternoon, SO happy to have that crap off his head. Of course, all the glue goop and red pen marks and stuff make him look like he is starring in a sequel to Outbreak, but he's happy, and that is important.

To me, anyways.

So that's our story for today. I haven't had much of a chance to respond to any comments in earlier posts, answer e-mails, etc., so sorry about that. Hell, my work is all backed up and I guarantee my house stinks, I probably left some dirty dishes in the sink when we were scrambling to get out of there last week. And we have my parents coming in at week's end and need to get some stuff ready for that.

But how in the world could we say no to an appointment tomorrow? We couldn't. Not if it meant putting the surgical presentation into September. August 25th is bad enough.

Which brings me back to the waiting thing. I get that things take time, I get that there are other kids ahead of us in line. But I now have to basically go yet another month before we might get another step further in this process. You were right Sinead, you were so damn right. So another month of watching Bennett seize, trying a new, dopey style medication, weaning another...just more of the same.

I'll get through it, doesn't mean I won't bitch about it. And yes I know, of COURSE it could be worse, could always be worse. And believe me...I do appreciate where we are, I really do.

So that's the story for today, what time is it now, nearly 6? This day felt particularly long. I'll probably do a full recap at some point cause these updates have been very rambly, but gonna sign off for now and maybe watch some TV. I am FRIED.

Oh and sorry no new external hard drive is in one of the suitcases and I don't want to go digging for it.


Sunday, July 26, 2009

Weekend at Cleveland Clinic Update 4: 07-26-09

Had rounds with Dr. Lachhwani this morning, fairly early. Damn I dig this dude. The only doctor in my entire history who has shaken my hand every single time he says goodbye. Something about that I admire.

Anyway, they aren't going to disconnect Bennett today, they are gonna leave the leads on and stay one more night. What he couldn't tell us is whether we would be discharged tomorrow or not. If they happen to be able to get some sort of Neuro-Psych eval scheduled for tomorrow, they're gonna keep us another day. If not, we leave tomorrow afternoon and come back for the Neuro-Psych later.

But I did tell him that I need the answer on that, whether we stay or go, by tonight, as I have to put things in motion. He was cool with that.

So, about the meeting. Bottom line is that according to all the EEG data Bennett's seizure activity isn't clear-cut single focus...but, that doesn't mean we aren't likely going to go down surgery road, because it looks like the odds favor that. The Dr. feels that the malformation in the left temporal lobe is the kid acting out in the class since there are many things that DO originate from that spot, and that any other apparent focal spikes (other kids getting riled up) are a generated result of the discharges that occur in the left temporal lobe.

Remove the disruptive kid, chances are that the rest of the kids calm down. Chances are. He was pretty blunt. 60-70% chance of seizure freedom, and then varying degrees above that of seizure relief with any other seizure activity possibly controlled with medicine. And of course, there is a chance it could do nothing. Yeah...that we knew already.

He was frank but very optimistic...ideally you want the MRI to say this, then the PET to back it up, then the EEG data to back that up, but in many cases similar to Bennett's, not identical because no two cases are, that just does not happen. But you take all the evidence, all the data, and then look at the boy's development in all these areas except the one area where he has the malformation. So many of these things even though they are not 'definite this' and 'definite that' lead us to make very educated suppositions.

I guess it's almost like solving a murder, solving a puzzle, whatever...answers are usually not just YES and NO...they are generally somewhere in between.

But this is all still all just talk. They'll present the case Tuesday to the team, the team has to confirm it though Dr. L was pretty convinced that Bennett would be selected and that he could really benefit from the surgery. We'll have to come back and meet the principle players, and we'll have to schedule some stuff. To me te odds would favor a grid placement pre-surgical evaluation, I'm all for ANYTHING that can make the outcomes more favorable. But that's me guessing.

All part of the journey, which is an ongoing process. We could get further down this road and then change direction, all depends on what happens each given day.

We are adding a new medication, Lamictal, today. We are also going to begin a Vigabtrin wean I believe. He mentioned some other med he wants Bennett to try and dammit if I forgot it already. I will ask him tomorrow. That's down the road.

It's all very confusing at times. In these meetings I need to process, think, read, talk and research. But as it stands right now I think the odds are favoring a surgical procedure sometime in the next couple of months. He seemed to believe it could be a matter of weeks and thinks that it should not, for Bennett's sake, be some long, drawn out process.

More as I know it...

One interesting side note. I still cry most of the time when Bennett has seizures. We're coming up soon on the six month mark...and it still isn't any easier to watch. I'm mentioning this because I never want to get used to it, ever. Keeps me motivated to push forward. It's important to me. It wrecks my world mentally, and this may sound odd but I want my world to keep getting wrecked by it. I need it. At least for now, as there will be a lot tougher moments ahead.

Dunno why, just thought about that and wrote it down. Probably sleep deprivation.


Weekend at Cleveland Clinic Update 3: 07-26-09

Well, we made it through the night. Jen got a good night's sleep back in the hotel, I hardly slept at all. But Bennett got some decent sleep in, so that's what counts. Now we are just waiting for today's rounds. Maybe happening in an hour or two, with any luck.

Can't believe I didn't freak out, but I actually did OK. It wasn't EASY, but it was not as bad as I thought. And I let all the nurses know was my first gentle with me.

Gonna try and find out today what the plan is as far as length of visit. I would like to have Bennett disconnected from the EEG leads today obviously, but if not I understand. Just want that for him. We'll see. But we gotta know, because we have to check out of the hotel on Monday and I want to know what to do about our stuff there and also what to do about getting back home, getting back to work, taking care of Carter, etc.

Miss him...a lot more than I expected I would. But I planned for that, and have my portable hard drive with all kinds of videos on it from Carter's first five years. And Bennett enjoys watching those, he gets a big kick out of seeing his bro.

I do have an idea now for a really cool hospital product for EEG leads. Would make life a HELLUVA lot easier for the kids, the parents and everybody else, and it's very simple, hell you can customize from what's out there. But it's definitely something I need to look into to develop and produce, and it can be configured to have logo of each and every hospital that were to offer it's use. Would be a VERY helpful tool.

My brain tissue hurts today. I'm so tired, haven't felt like this in a LONG time. Since a convention or something. Been a while.

Anyway, here are a couple of shots, the bulk of the photos go into my Facebook page...easier that way.

More later as I have it.

P.S. Apologies to anyone who has e-mailed me and not received any responses. This is a public server, and my e-mail is all done through servers that won't allow access from a public server. If you have any emergencies and you need to contact me via e-mail you can use or use Facebook. When/if we do the surgery and it lasts for over a week or more, I'll have a better solution in place.

Saturday, July 25, 2009

Weekend at Cleveland Clinic Update 2: 07-25-09

I am a total pussy when it comes to being on duty by myself in this hospital room. My claustrophobia kind of gets to me a bit, the blood pressure is probably very high and the anxiety is...well, let's just say I am crunching Xanax like they are M&M's. I'll need to talk to my doc when I get back about why I burned through this month's supply so fast.

I don't know why I feel such abject terror having Bennett in my care by myself. I think I must feel like I am going to do something bad, or stupid. I isn't usually an issue at the house, but hell it is a HUGE problem for me in a hospital room. In fact, so much so I've actually never done it alone before. Tonight...this is my first time. It's only 3:15 PM and already I feel like the walls are closing in.

Jen is back at the hotel, resting, she will be back this evening for a little while but she will be returning to the hotel to sleep overnight, and I will be here with Bennett.

Rounds new info. The doc suggested that we wouldn't be discharged until Monday at the EARLIEST, because it is so hard for them to see any focalization in the EEG. This was a sub doctor, not anyone who really would have any info for us anyway since Dr. Lachhwani was not here today. But apparently some expert is supposed to review on Monday all the EEG data collected FRI-SAT-SUN with Dr. Lachhwani and make further determinations.

I just want to be sure it is Monday when we get out of here. We don't want to see this stretch on and on. We have work, another kid, and such. Not that we aren't prepared to do what we need to do, I just want to KNOW what we need to do. We need to be able to make preparations and junk.

Bottom line is hospitals suck, period. We want our answers and we also want to take Bennett out of here.

I will say this about Cleveland Clinic. Some friggin' BEAUTIFUL artwork in this place. I could, if time permitted, get lost in every hall looking at the great art they have selected on the walls. It's part museum in a way. Great stuff.

Anyway, some pics of the experience.

Weekend at Cleveland Clinic Update: 07-25-09

You know me...I will have diarrhea of the keyboard at some point as I recap the whole trip, but when you are sitting in the dark in a hospital room it is VERY hard to type a lot of stuff.

So I'll be brief.

First, thanks to all who sent well-wishes and comments, through here, e-mail, Facebook and all that.

To you guys who sent the goodies. Thanks. You really shouldn't have. You're both crazy! But we really appreciate it. We'll never consume all that stuff. You've made many nurses on this floor very happy.

Bennett was up most of the night, we are all pretty fried, but at least he has had 2 seizure clusters already, providing data...that's why we are here. MRI is done. Not sure if there will be any more tests in addition to the continued EEG, but we'll see.

That's it for now. Will update more as I can.

Thursday, July 23, 2009

How's This for a Happy Nugget?

OK, so you know I'm freaking out about the Cleveland Clinic inpatient visit for Bennett, which starts tomorrow. We just finished packing the car and I am watching Bennett sleep and have the laptop out, so what the hell. Jen is on her way to the pharmacy for her SECOND anti-anxiety med. Wow, that's huge. I'm covered on all my meds for the trip, though I may be adding in Med #5, an anti-depressant I used to take, when I get back.

Anyway, so in case you missed it, Bennett has Occupational Therapy every Thursday morning. Last week, he seized ten minutes in. Wiped. Session over. Week prior? Sick. Couldn't go. Week before that? Seized five minutes in, monster set, the one Sinead calculated out at a per second thing, it was staggering. Session over.

I take him in today figuring that since he has a cold and has been seizing more intensely than I have ever seen in these nearly six months that it would be a total bust.


He had the session of his life.

Climbing, playing, laughing, sliding, playing with toys, pushing this, pulling that. It was like a different child showed up from a Mirror Universe (but one where they don't have goatees) and impersonated Bennett for an hour.

I...was shocked. Audra, his therapist...shocked. The other therapists who know of Bennett's condition and have interacted with him before? Shocked. At the end, one of the other therapists came to me and patted me on the shoulder, cause she knew what I was thinking and knew how badly I felt over the past month of bad sessions, and said Bennett was an absolute delight to have around today. He was AMAZING.

It rips them up to see me react to Bennett's seizures as much as it rips them up to WATCH Bennett's seizures themselves. So...yeah, I'm a dude and it doesn't bother me to admit that they've all seen me cry before. I had some tears in me, and allowed a couple to squirt out. The difference is that this was the very first time they had ever seen me shed some of the 'good' ones.

It felt really, really good.

So there you go. Yeah...he had a horrific cluster when he came home, yeah I am nervous about Cleveland, yeah I am anxious, yeah my stomach is in freaking knots. But for a couple of hours, I was just a Dad who was feeling super proud of his son. Those couple of hours were EXACTLY WHAT I NEEDED.

Put THAT in the Happy Pipe and smoke it, beeyatch!

Now I am gonna go squeeze in another anxiety attack before I hit the road. Next stop...Cleveland Clinic. I always think I should say THE Cleveland Clinic. As in 'THEEEE'. But I am not sure if that is the right way to say it. I think that since I live near 'THEEEE' Ohio State University I think everything in Ohio is supposed to have a 'THEEEE' in front of it.

Anyway, see you on the other side. Not sure when I will be plugged back in, probably not until sometime late Friday night.


Totally didn't remember that I had this in a queue and the date must have been today. Woke up and signed in and saw this had gone live. Man, it certainly seems out of place this week, don't it? :)

Medicom is just pumping the Star Wars stuff out lately.

They recently put out the 10th (and I hope not the last) series of Star Wars Kubrick figures, based on Star Wars Episode III: Revenge of the Sith. Cool set. Got no secret figs in the two cases I bought. Bugger.

And absolutely, as expected, I did not get any of the chase figures in the new case of Boba Fett Kubrick figures I ordered. Yes, you heard me...Medicom released an ENTIRE wave dedicated to the galaxy's most famous bounty hunter. The set contains six versions of Boba Fett along with the aforementioned chase figures. Did I mention I don't have any of the chase figures? Yeah...

Here are the main six figures in the assortment.

Boba Fett as he appeared in the short cartoon that was the only semi-cool part of the greatest embarrassment of the entire universe of Star Wars...the much maligned Star Wars Holiday Special, in 1978.

Boba Fett as he appeared in what is, to me, the SECOND greatest embarrassment of the Star Wars Universe...the television series called Star Wars: Droids, an animated turd that stunk up Saturday mornings in 1985.

Boba Fett as he appeared in one of his many early concept forms. There are a lot of different variations of what is typically referred to as 'Proto Fett', and it is discussed in some very interesting detail on the Star Wars website, in Proto Fett: The Birth of Boba. This figure is based on one of the middle versions of Fett, as visualized by Joe Johnston.

Boba Fett as he appeared in one of the last of the concept forms. This figure, based on one of the Joe Johnston concepts, is the one which actually got prototyped into a full costume, with the muted white color scheme.

Eventually the all-white version was re-painted to the more colorful version we ultimately fell in love with in The Empire Strikes Back.

Boba Fett as he appeared in an even earlier concept drawing by the man who shaped the look of a ton of the original Star Wars universe, the great Ralph McQauarrie. This conceptual Fett is my favorite, though my opinion is probably biased...because while Star Wars was the reason I picked up a pencil and started drawing like a crazy person when I was ten years old, McQuarrie's artwork was the reason I never put the pencil down again. His original Star Wars Portfolio was one of the single greatest things I ever owned. And of course, The Art of Star Wars, which I got in 1979 at Christmas...

...which was loaded with McQuarrie illustrations, sealed the deal. Nifty, huh?

Lastly, the assortment is rounded out by a version of Boba Fett based on the original KENNER action figure, first released in 1979. A great interpretation of the funky Kenner interpretation, and one of the coolest ones in the entire set.

That's it for Kubrick stuff for this week. Though I did recently pick up the 400% Indiana Jones, just never had a chance to shoot it yet.


Wednesday, July 22, 2009

How Easily the Scales Tip

The scale tips so easily this week.

So I exit my upstairs home office and go downstairs, swing by the wife's home office on my way to the basement to put the finishing touches on a box being shipped to Asia this afternoon and to take some photos of a piece we're working on. She gives me The Report.

This is when she tells me what she has learned, via telephone, about how Bennett's day is going at his grandparents house, where he stays all day since we had to pull him from Day Care.

The Report today is that Bennett is having a terrible day. He is, for some reason, crying a lot. Tears down the face crying. Needs constant comforting, something is clearly wrong. They aren't sure why. For the first time in the entire history of his disorder...he started crying during a pretty monstrous seizure set that happened late in the morning.

Face got hot, ears got hot. Started to feel dizzy, couldn't breathe. Heart beating itself out of my chest. Eyes darting. Knees buckling. Trapped. Felt like I was about to die. Well...poop. The physical manifestations of my raging anxiety beat me right at that moment. Sat down on the floor, asked Jen to take my blood pressure. 148 over 98. This on my new full dose of BP meds, which have taken me back down to a decent range, when I am not having the attacks. In fact last night I was actually LOW for me. In the upper 70's, low 80's.

So that's it. From here on out the rest of the day has been hard. Damn hard. I took my special pills way earlier than I normally allow myself to stop the attack, but now I have a case of the grogs.

This sucks BALLS man. It really does. It's bad enough to have a sick kid, but it's TOTAL horseshit to have a condition yourself that physically turns you into a walking liability at any given moment. I'm PISSED at that. Always have been.

Oh well, looks like I need to find a Happy Nugget right now. Hmmm...lemme see.

Nope. Got nuthin'.

Maybe later.

Artists Alley: Kenneth Lilly

Weren't expecting THAT one, were ya?

I'm tellin' you...this week I am feeling particularly freaky-edge-of-madness and I cannot really explain why. I KNOW that this coming weekend is not going to yield anything other than more waiting and more frustration, I know that it will be more of the same, more days of watching Bennett have gut-wrenching seizure after gut-wrenching seizure even after this weekend of tests.

Bennett has had MRI and EEG tests before, I know what to expect. I've been down this road with him, and we've been at this hospital before. AND yet...for a reason I can't explain, I am as anxious and as nervous and as weird as I HAVE EVER BEEN since all this shit went down in February. WHY? I don't know.

So, don't expect the usual. I ain't got it in me.

Where was I? Oh yeah...

I do these Artists Alley segments to try and introduce people to some new things that maybe they have not seen before, some nifty art. You see, I have always thought that people take art for granted. But no matter where you go (in our man-made world, I'm not talking about if you are in the middle of a forest or something), if you look around, odds are you are going to see something that some kind of artist created.

Take a look around you right now. This website, Blogger, some artists designed the look. On your table that box of cereal. An artist designed it. Newspaper? Some artist laid that out and other artists took those awesome pictures. Your iPhone or Blackberry you are getting ready to pack into that bag? An industrial designer had a hand in that, as well as the bag.

The clothes you are wearing were created by a fashion designer. The words TERROR ALERT and that nifty bomb graphic on your television news program next to the talking head was produced by a digital artist. The commercial with the Scarecrow from The Wizard of Oz dancing on electrical wires was worked on by a concept artist, a storyboard artist, a computer artist, an art director, hell probably someone who may have been specifically hired to render the electrical sparks.

Of course, if you have some paintings hanging on your wall...yeah, I don't want to overlook the obvious. You might even have a snapshot you took of your kids on the Frigidaire. That's art. And YOU were the artist. everywhere. everything. And yet you would find that most of the time I do one of these Artists Alleys segments most people do not comment, and much of the time these pages get far less views overall than any other. Why?

Because more than anything else, art, or rather the appreciation of it, is one of the most subjective things on the planet. What's good for the goose is NOT good for the gander. I may like the work of Van Gogh, you may think the work is awful...the wild, unrefined interpretations of some crazy dude who cut off his ear and gave it to his girlfriend.

You know that actually might not be exactly what went down? Some have differing theories. It is actually not officially confirmed that Van Gogh did the cutting himself. Some think it was cut off during a fight between him and another artist, while others believe he accidentally lost the lower part of his earlobe...while having an epileptic seizure. Yup, some medical experts believe that Vinnie had Temporal Lobe Epilepsy or some other form. It isn't certain the ear cut was made on purpose, or if it happened during a seizure by accident or during a fight.

Anyway, that's why these posts never get much 'heat', so to speak. And you know what? I totally get that. Because most of what I post about is not necessarily everyone's cup of tea. My mother is the first person that comes to mind when I say that too...she often used to wonder why I wouldn't draw flowers and stuff that was 'pretty'. Those were HER things. I had MY things. Chicks. Robots. Monsters. Wacky stuff.

Art is like that, whether you make it or just look at it. You tend to gravitate to what you like, and you definitely, absolutely just breeze on by the stuff that you don't.

Unless you know the guy.

Then you give a second look.

So for today's Artists Alley I am going to show you some of MY work, and point you in the direction of MY deviantART page specifically. And while I don't expect that my work is everyone's cup of tea, I expect that because we are talking about me, and because I have sort of put myself out here a bit of late emotionally, that maybe you'll enjoy these pieces a little bit more than the usual AA subjects. Though I tend to think that the other work by the other artists I show in these AA blogs blow my shit right out of the water. I am pretty much NEVER happy with anything I have drawn. are a few pieces I feel OK about. I specifically picked them because they do not relate to any toys or products...because let's face it, I just don't really DRAW anymore for art's sake. Pretty much any art I have made in the last few years is almost always a toy or some other product.

Those first ones were done in late 90's into the next decade. These next four are from last year, when I picked up a pencil after a LONG hiatus and tried to start drawing again. I had every intention of re-exploring art with a vengeance. But as it always happens, got sidetracked by needing jobs that PAY, and that was that.

Thought about maybe this year trying again, but after the Bennett thing went down haven't had much in the way of inspiration after I do my day job. I give that my energy and Bennett/home life the rest.

After that? Got nuthin'.

If you'd like to see more of my work, mostly all older stuff, check out my very own deviantART page. You'd have to sign up for an account, but it's free and WELL worth your time to have access to my gallery, as well as hundreds of thousands of other pieces of fantastic art! And that's the main reason to sign up. I almost never update my page anymore, just no time, but there are some GREAT artists to be found over there.

A Beautiful Blank Page

Christmas is over. That sound you hear is my sigh of relief. The tree is not actually down, as the opening image suggests. That was a tem...