Thursday, April 30, 2009

What Keeps You Going?

I get asked that a lot. How do you keep it together there fella? With all that is going on in your son's life, dealing with that kind of diagnosis day after day, how do you maintain any energy level at all?

It ain't easy, I'll tell you that.

This helps.


That is a Nespresso machine. It is a handy-dandy little device that makes an Espresso shot in the comfort of your own home. But it's a DAMN GOOD Espresso shot too. Plus it's convenient as hell, there is really no muss or fuss about it. You insert the module of the flavor and strength you like, put the cup under, close the arm, hit the button, let cup fill (takes mere seconds) and then stop the machine.

VIOLA! An instant cup of hot Espresso that is absolutely bar none comparable to any you would find out at a Starbucks or any other coffee shop. And for a lot less money. Well, unless you factor in that the machine itself costs money, but let's not talk about that.

Want one?

Thought you might, so when you decide to actually make a buy go to the Official Nespresso website and browse all the awesome models. Mine is pretty basic.

And say...if you like to have easy access to your pods, or modules, or whatever you wanna call them, there are all kinds of options. Me? I go with a wall mounted stainless steel holder, with the pods sorted by strength, so they are RIGHT there when I need them.



Pretty sweet huh?

Hey...secret time. You thought I was a bit anal retentive, a bit obsessive compulsive, a bit ADHD and all that? I can pull one of those pods out, use it, toss it and be perfectly fine with all the rows of pods not being even.

Jen? She sees any of the rows with one missing she fills it.

Every time, no joke...she can't stand the rows to not be even. Kind of funny, cause I always have the rep as the one who would do something like that.


Wednesday, April 29, 2009

Of Course I Still Buy Kubricks

And you thought that maybe the difficulty I have had of late with my son would keep me from at least keeping my feet wet in the world of block figures? Some things are a part of your very genetic structure, as is my obsessive need to collect SOMETHING. Right now, it's mainly the block stuff. I just can't handle going to TRU or Target and looking at some REAL SHIT right now that is priced at something ridiculous like $7.99. Remember when THIS kind of thing was 7.99? Or even THIS? That wasn't all that long ago.

Yeah sure, Kubrick figures are sometimes a lot more than $7.99. But they tend to retain or gain value. I spend $7.99 or even $10 bucks on a Kubrick (or hell even a lot more), chances are I can probably sell it for around that or more later. I have a simple rule when it comes to what I buy on eBay in the block figure world. I will only buy it if I know that the price I am paying is something I can at least recover if I had to re-sell for whatever reason.

I say 'for whatever reason' because while eBay selling sustained us for a few years, I don't really sell much now. Now that there is a real job again there isn't much of a need to sell. I maintain the eBay store only so that I can make a little extra each month to buy...yeah you guessed it, more stuff. Stuff that, according to the rule above, MUST be able to be flipped if needed.

So where was I? Oh yeah...new Kubrick items. All these have been picked up I would say in the last 2-3 months, I have photos upon photos of junk I have not shown even though I got the stuff LONG ago. Been too busy with Life.

So...in the Star Wars world, added a few chase figures to the collection in the past few months. Picked up the variant version of the Ghost of Old Man Anakin Skywalker (the one played by Sebastian Shaw). Kind of a weird variant to do, since technically he never existed as a man, just as a ghost, but at least it is the 'real' older Anakin and not that horrible re-edit in the 'ghost' scene from Return of the Jedi where they put a young Hayden Christensen in place of Sebastian Shaw. Bastards.


Then of course a Clone Commander, a yellow striped version of the Clone Trooper from Attack of the Clones. I wonder when George will go back in to the Original Trilogy and start colorizing different Stormtroopers so that Hasbro and other companies have more variants to rape the consumer with?


And of course the hardest one to get at a decent price, but my patience paid off big time, the lovely and talented Jedi Master Shaak Ti. Always liked the Shaak Ti design, like it so much on the Kubrick I thought I'd take a shot of the Ken Lilly Stormtrooper Kubrick custom with her. Nifty.



Fun fact...they never show this in the film Revenge of the Sith, but Shaak Ti is actually killed by General Grievous aboard the Invisible Hand, the flagship where the General is holding Supreme Chancellor Palpatine. Remember when Obi-Wan and Anakin go to bust Palpatine out (not knowing that he is actually the bad guy of course)...well in a deleted scene this Jedi Master, Shaak Ti, is killed by Grievous.

Just letting you know in case you ever were watching Attack of the Clones, saw Shaak Ti on the Jedi Council, thought "Hmmm, what a nifty design for a Jedi Master there, George" then never saw her at all in Revenge of the Sith after all that Order 66 shit went down even though you saw how most of the other Jedi get creamed.

Wow...the geek just poured right out of me there for a few minutes, sorry. :)


Tuesday, April 28, 2009

The Star Wars Kid

No, not the infamous kid who played with a lightsaber and set the Internet ablaze many years ago. I'm talking about my OTHER son, the one that I really don't devote nearly enough time to in this blog (or in real life quite frankly) since he is 100% healthy. I used to write about Carter a lot, back when I was a 'New Dad', but that was what seems like a lifetime ago.


I wanted to try to bond with him a little bit, and I have been doing it by trying to use Star Wars as my bonding agent. This weekend, in the midst of watching for seizures, cleaning, organizing, mowing the lawn and a bunch of other odds and ends, I put in Star Wars Episode I: The Phantom Menace in the DVD player for Carter and sat with him to watch it.


Yeah, yeah...I know...you're asking..."Ken? Why in the world would you subject your elder son to the most horrifically awful of the six Star Wars films? Are you INSANE man?"

Well, he has been watching Star Wars: The Clone Wars some of the time, and he seems to be digging it. He had seen a very small snippet from Star Wars Episode III: Revenge of the Sith a while ago, seemed to like that too. Likes the character of Anakin. However at the age of nearly 5 he does not quite understand why Anakin Skywalker becomes Darth Vader.


Anyway, I put in Episode I because I thought he would dig the action, I thought he would dig Jar-Jar (which he does) and I thought he would think it was cool to see Anakin as a kid, just like him.

Nope...he doesn't dig that part of it. He kept asking me all kinds of questions...

'Does Anakin have a Light Saver?'

'No, not yet.'

'Does Anakin have a gun?'

'No, no gun, why would he have a gun?'

'When does Anakin fight people?'

'He doesn't fight in this one, he's just a kid.'

'So what does he do then? This isn't fun.'

'He drives a really fast floating car, you'll love it.'

'Well...then does he fight after that?'

Apparently, the kid loves the Jedi fighting. Guess I better remember that.

Overall, he was not as into watching Episode I as I thought, until I went down into a box and found an Anakin Skywalker figure in a Pod Racer and then he sort of got into it. At least later on he asked about watching more Star Wars movies...so the master plan is working for the time being.


Of course, I tried to get him to watch Star Wars Episode IV: A New Hope (you know, the first one from 1977), which is still hard to top from where I am sitting, but it's a little slow compared to what he is used to. Freakin' fast-paced CGI has sort of ruined the Original Trilogy for the younger generations. Anyway, he was sort of half-interested in it at the time, maybe as he gets more involved in the SW universe he will gain some interest. Hope so. I'll just be happy if he at ONE time in his life can recognize the singular perfection that is Star Wars Episode V: The Empire Strikes Back.

He had a question for me while he was watching a couple of scenes from A New Hope, one of which nearly made me do a spit-take with some water I had just started drinking.


'Daddy? Why does everyone have such big hair?'

Ahh...the 70's.

Monday, April 27, 2009

Artists Alley: Kim Mattison

So far in these Artist Alley blogs I have shown some people who I encounter over at deviantART, and for the most part that may be what I do most of the time here. But occasionally I may break that tradition, like right now.

I used to work for a company called Palisades Toys. Lots of people who read this know that. They also know that after about a year and a half there, maybe 2, things got super duper busy and we hired a Production Assistant named Kim Mattison. Ever since she came on board there, we've been good friends, and even though the company is no more and I haven't seen her, damn, since 2006 at the San Diego Comic-Con I believe, we still keep in touch.

Lately she had been e-mailing me anything she can find that has been funny. She does this to cheer me up since she knows all about the daily melancholy I experience over my son Bennett's condition.

But a couple of years ago, and I don't exactly recall the circumstances, I was battling one of my various depressions, might have even just been the fact that I missed Palisades and missed Baltimore and was struggling trying to make things work in my life, and she would e-mail me what she called 'A Picture a Day for Ken'.

It was a great gesture from a great friend, but more than that these little 'digital paintings' she would put together were damn cool in their own right. Typically they would relate to some thing that we might have talked about, or not, just depended on what was going on, her mood and probably how rushed she was that day. And wouldn't you know it...they actually DID cheer me up.

I wanted to share some of my favorites with you now, and take a public moment to say thanks Kim. I know you read this, and I told you I was going to do it at some point a while back so that you were cool with it, but thanks for the support. Support in the beginning when we were such a great partnership in product development, in the middle after I left and then moved out of state, and beyond that to the right now. Your friendship always has always been unique and special.








Friday, April 24, 2009

Days of the Living Dead

As much as I hate to disappoint all the George Romero enthusiasts out there, this is not some blog about all the great 'Living Dead' zombie films from the beloved director. Rather, it is just a simple note or two about my son Bennett. Of course, the zombie reference can also apply to me...sometimes I feel a lot more dead than alive.

Sorry I haven't written much lately, I have been in a very negative place all week mentally so I didn't feel like just dumping it all. Bennett's condition has not improved, getting any solid info from the local hospital about what to do next or when certain appointments are supposed to take place has been like pulling teeth, work has been draining, my camera may have died, had some computer file issues that are gonna take weeks to repair (cause I can only do it in my free time), and Spring has kicked in with full force so I am sneezing like a maniac all day long.

Bennett, as of Thursday of this week, has begun to take Keppra. He is now on Topamax and Keppra combined in an attempt to stop the seizure activity. If anyone needs dosages let me know, but they are strong doses from what I understand. He is very wobbly, off balance...he is out of it a lot of the time. Sleeps a lot more. I barely recognize his personality some of the time, actually a LOT of the time. He's got a very zombie-like gate to his walk quite often.

You sometimes sit there and wonder if he is actually regressing or if he is just so doped up that he can't think straight. Doesn't say the words he used to say, but could be the drugs because once in a blue moon a word or two comes out. That could be parental wishful thinking, though. And sometimes, though much less so right now, he is laughing and giggling and smiling and interactive.

But only sometimes.

Anyway, that's about where we are this week. No forward momentum, but I didn't expect any. We don't have a further battery of tests scheduled out of state with the more renowned IS doctor until early June. Until then, which is what...5 to 6 weeks? I don't expect a lot to change. A continuation of trying meds and trying to keep Bennett from falling down and/or regressing any more if that's possible.

Let's close with some pics of Bennett. What is significant about these photos is that they were taken around 4-5 days prior to February 12th of this year, the very first day he had his first seizure. It is the last time I had the camera out taking pictures before all of this started.





That actually feels like ten years ago, and it has only been a little over a couple of months.

Monday, April 20, 2009

Artists Alley: Chris Uminga

Another look at one of the many gifted and talented people you can find at deviantART, the website for artists to post their work and participate in an online community. You get the full gambit at DA, from kids just starting out, to guys like me who are sort of in the medium area, to full-on GODS in the professional comic world, like Adam Hughes, Tim Townsend, Jim Lee and others, who put images of their work up, write journals and talk to one another. I also maintain my own deviantART page, which if you ever feel adventurous you can always check it out.

I don't post a whole lot on there right now though to be quite honest. I haven't uploaded anything in quite a while, but last year I was adding all the time and had even started some new work. But PAYING work takes precedence, and so I blopped the art for funsies sake and started doing product development again, which, while creative, isn't 'makin' art' the way most people think of 'makin' art'. Add in to that the whole mix of Bennett and his seizures, and there just isn't any kind of free time left for drawing.

But I still have my 'watch list', which is a list of the people I look at on the site and the site will notify me when they have posted new 'deviations', and a lot of the art is fantastic there.

Today I want to introduce you to the work of Chris Uminga, who goes by the deviantART name of simply UMINGA. I don't know much about Chris, he doesn't journal much at DA and his own website doesn't say much about the man, but I do love his art. His work is very haunting, in an eerily cute sort of way, and certainly not for everyone I'm sure. But for a reason I cannot really articulate his work resonated with me from the first moment I saw it.

(EDIT: Adding this actually after I wrote this and scheduled it for posting. I know exactly why I am gravitating towards this art right now, more so than some of the other folks I watch on DA. The eyes. The blankness of the child-like characters he paints...I see this in my son sometimes, a blank stare that accompanies the seizure activity he has, and when I look at Chris's art it speaks to a certain sadness in me that is very powerful in my life at the moment. Anyway...that's my working theory as to why I picked Chris's work to show you today compared to some other artist on my Watch page.)

I picked some of his interpretations of DC Comics characters to show in this blog, but he does other things as well. These are just some of my faves.





If you'd like to see more of his talents in action, check out Chis Uminga's deviantART page. You'd have to sign up for an account, but it's free and WELL worth your time to have access to his gallery, as well as hundreds of thousands of other pieces of fantastic art! You can also see his artwork without signing up for anything at his own website...www.cuminga.com.


Friday, April 17, 2009

Some Random Friday Ramblings

I'm feeling very random today.

Risky Business

In the old days, if you told me that my wife and two kids were leaving Friday night to go visit her sister for the entire weekend, I'd be pulling out my tighty-whities, Ray-Bans and button down shirt and digging around for my Bob Seger CD's.


These days? I'm not the same man. So while I might have before relished the idea of spending a weekend playing X-Box, sorting toys, watching movies where things get blown up, people curse and get naked with each other and eating nothing but pizza for every single meal, now I am feeling only sadness at the thought of being away from my family for 2 days, particularly Bennett.

Weird huh? Well, I have tons of cleaning to do, gonna try and finally come up with a solution to this floor in the kitchen. It's just a horrible tile, we should replace it eventually. We had actually talked about a deck this year finally, but until we know how much the whole Bennett thing is gonna take out of pocket for us this year we have to curb any spending like that. Might need to come up with a plan on the yard work too, we really need to beautify the outside some more, our neighbors are really making us feel like we suck.


Madden as Hell

Well holy crap on a stick. John Madden is retiring.


Sunday Night Football was my favorite to watch lately, because I loved the team-up of Al Michaels and John Madden. But I guess at 73 the guy deserves it. I will say this, I'm happy with the replacement. If I would have picked anybody to put in there with Al it would be Chris Collinsworth. One of the best color men in the NFL.


The Epilepsy Storm

And so many people don’t even really know just how much it affects people worldwide. Sad really. But for those that care, this week's Newsweek magazine has a cover story on Epilepsy. The article here...

Newsweek Cover Story: A Storm in the Brain

...is only part of the story. If you have access to a newsstand I suggest you pick it up. Amazing read. Sadly, no real mention of Infantile Spasms. That pissed me off. But what are ya gonna do? They weren't writing a book and they had to sort of narrow the field a little to generalized epilepsy, and there are HUNDREDS of types.

This statement in the article REALLY hits me where it hurts. I cringe every single time I read it.

"There is a terrible irony here: because most people with epilepsy are not in a constant state of seizure—they are, rather, in perpetual but quiet danger—their condition can appear less serious than it truly is. It is all too human, but all too true, that a problem, including the problem of a serious medical affliction, stays out of mind when it is out of sight."


A Grand Farewell

Today was the last day of Bennett's ACTH injections. The drug, a first line treatment for children with Infantile Spasms, failed, and he has been on a fast wean off of it for the past couple of weeks. I'm thrilled that he doesn't have to get any more shots. I just wish it had worked.

See this?


That's what a vial looks like. That ONE vial is $25,000 worth of medicine right there. He went through four vials. That's $100,000 dollars against his lifetime insurance maximum that we will NEVER get back. What a crime that a drug like that can be allowed by our government to be so jacked-up in price because the company making it is the only one who DOES make it is truly beyond my comprehension. But at least it's out of our lives now.

And not sticking needles in THIS little guy every day anymore?


I'll call THAT the win for this week that I said I was looking for. How's that for positive thinking?

Have a good weekend.


Thursday, April 16, 2009

Mother Knows Best, Actually

So Bennett's case was 'reviewed' by a bunch of Epileptologists and Neurologists yesterday. Some changes in 'The Plan', though I don't feel like listing them right now, but it does appear to me that all roads are starting to move in the direction of brain surgery for Bennett some time probably within the next few months or less. Can't tell you how freaked out that makes me...in fact, I'm not even gonna talk about it now...need some time to let it sink in.

What is it my Mom has always told me? In mock Latin? Illegitimi non carborundum or some such. Supposed to mean 'Don't Let the Bastards Grind You Down' but it isn't 'real' Latin, mind you, it's a bastardization of it. So to speak. :)

By the way, while we are on the subject of Mom's...they sure as hell know their sons when it comes to getting them to eat. I haven't been eating lately, not like I should, and I am losing weight at a rapid pace. Now frankly this is a good thing for me to be losing weight because due to some general bad living and adding in the munching I did during the months of my smoking cessation I was getting to be one large mufugga, know what I'm sayin'? DAWG?

But you gotta do it the right way, and NOT eating because of stress is NOT the right way. Especially when it starts to make you woozy, lightheaded and see spots.

So my Mom hears about this and sends me something in the mail. And this is what makes Mom's so great...she knew EXACTLY what I would not be able to resist.


Maryland Crab Cakes...one of the greatest single foods in the universe for sure (if prepared properly), and certainly THE food from back home in Baltimore that I miss the most, well...except for just straight-up hard shell crabs, but you can't really MAIL those.

Anyway, thanks Mom, they were DELISH. And thanks to ALL of those people who happen to read the blog and also send over some food from time to time. It's great to sometimes not have to worry about dinner when you are so worried about all of this. Been a TREMENDOUS help.


Wednesday, April 15, 2009

Hey...Do You Want a Bite of My Shit Sandwich?

It's really tasty, the one I'm munching on right now...want some?

I'm just having a shit day in the middle of a shit week in the middle of a shit month. What's that you say? Shit is a bad word? Well...NO SHIT. Hey...it ain't a family show here, and sometimes I just need to vent, so I'm gonna. Just realized it is Tax Filing Day too...so, it's probably a shitty day for a LOT of people in the Unites States of America.

No real updates people...yup, my son Bennett still seizes every day, and they are getting worse not better. AWESOME!!! I barely spend any time with my other son because I am in such a foul place mentally and by day's end I am pretty wiped out frankly. SWEET!!! I spend pretty much every evening after making dinner and clean-up just waiting for a seizure cluster to come so I can grab my pen and paper and make notations. I even have a nifty Excel spreadsheet to record his seizure activity now. Isn't that GRAND? WOOHOO!!!

Today is that 'presentation' of Bennett's case to a bunch of doctors and interns and residents and junk. Maybe that has me on edge too, I dunno. We've been trying to reach anybody involved over there at the hospital since Monday morning to let them know that his seizure activity is on the rise, not going down, and nobody has called us back.

So much for getting them that info BEFORE the fuckin' meeting. Nice goin' guys.

I can't STAND it when someone does not call me back in general if the MULTIPLE messages have any sense or statement of urgency but when it comes to my sick child? That is something that really makes me want to put my fist through somebody's rib cage Bruce Lee style and walk away with a still-beating heart in my hand.

Anyway...so...yeah...Mood? Foul.

I just need a win this week in one thing, and that will be enough.

It's only Wednesday, I got time.

Let’s close today's lovely romp through my septic thoughts with some beautiful photos of my sons...that always makes me feel better. Though I cannot get Carter to sit still for photos these days. He just hates it. Bennett? Total ham. He's gotten super chunky too, hasn't he? It's that ACTH...100,000 dollars and all Bennett got for it was five extra pounds and four empty bottles. Nice.


Monday, April 13, 2009

A Difficult Easter Weekend

The weekend was not really very good. There, I said it. Correction...the weekend was not very good for me. Carter had a pretty good time, doing Easter related stuff and playing with his cousins, and Bennett, when he was not sleeping or seizing, seemed to have a good day Saturday, though Sunday most of the day he was listless and a bit out of it, though he got very giggly and energized in the evening from around 7:30-10:00. But for the festivities something wasn't clicking for the little guy.

It was sad really, for me, standing outside watching kids search for Easter Eggs at my mother-in-law's house, and seeing Bennett not really running around as is his norm, and not really searching, and not really interested. He was just sort of being led around by Jennifer or Mandy to pick up plastic eggs filled with chocolaty goodness, none of which he can even have by the way, but he doesn't know what he's missing so that's no big deal.

Some people refer to Topamax as 'DOPE-amax', because of the zombie-like effects it can have in some people as it tries to work it's anti-epileptic magic. The problem is that I don't know how much of the slurring or stumbling or lack of energy at times to be related to the medication or to some kind of regression that often comes along with Infantile Spasms. So rather than stand there and enjoy the Easter Egg hunt, I find all I do is analyze, study, observe...and I can never find my way into the moment. Sucks.

Not to mention the fact that the seizure activity is not getting better, it is getting worse. Intensity level is steadily increasing, on its way I fear back to its pre-ACTH level, frequency of sezires during a cluster is increasing and frequency of clusters is increasing. Whether the increases in Topamax dosing that occur this week will have any effect are anybody's guess. We just don't know. Yeah, sure, based on my Friday update, there is a PLAN...but that doesn't really help me a lot in managing my emotions.

Guilt plays a factor too...I sometimes read other people's stories about their children on forums and realize that some children have it worse than mine does. Some parents have it worse than I do. Then I feel guilty, which then makes me angry because I can't feel guilty about feeling the way I do about my own son. Of course, some parents have cases better than mine, so that tends to balance it out I suppose.

Managed to finally grab my small camera and shoot Bennett having one of his clusters. I didn't tape the whole thing, there isn't any need to. I have oodles of his seizures on DVD using my larger digital camcorder. This was using my small digital camera which allows me to take snippet video and post, since I do not know how to take a small section out of a DVD and make an avi or mpg file out of it. I wanted to grab some footage for online so that some folks who had been asking about what it looks like can see.

This was taken yesterday. It's at the tail end only of a cluster of seizures, which I think was a cluster took around 11-12 minutes. (He had five clusters yesterday and I can't remember which one this was but if it matches to my notes then he is already on #30 or so when the video starts). These are about at an 85-90% of what type of intensity he can reach, and you can actually, through the course of the video, see them get faster and less severe, as it is starting to 'wind down'. In this cluster he is not really reacting a lot in between seizures. He can sometimes be VERY agitated and upset and other times he will be...no lie...giggling, smiling or clapping. Go figure THAT shit out...I dare you. (Though the laughing ones tend to have no arm movement and just head nods.)

Note that what I call a seizure is the period where he 'jolts' with his head and arms. They call that 'infantile spasms'. Sorry...but I think that is too soft a term...makes it seem so harmless, but it ain't. And if you have never seen IS in action, don't take this video as Gospel, cause it is different each time not just for Bennett, it is different for all kids. There are some videos on the net where they are MUCH worse than this and some where they are better. Point? They all seem to be a little different.



I think that's the biggest reason why I said my weekend was not very good. Weekends now kind of suck for me because Monday through Friday I see maybe one cluster a day, at night, after Bennett comes home from his Mee-Maw's house. Some days he does NOT have one at night, though with the ACTH drop-off the averages are favoring more per day and more per night too.

But on weekends? I get to sit there for every single FRAKKING one. Wears me down man. Just wears me down. Yesterday for example, by the time we even WENT to Jen's Mom's for the Easter shindig, he had already had two clusters with a count of seizures well over one hundred. Had a very mild cluster while over there with people around, something I call a Type C (in my seizure log) which is a minor head nod/some staring variety. Then another when I took him home, then another at night before bed.

I said something to Carter that was so horrible yesterday early evening. He had not napped, he was very whiny and fussy, and I was in one room doing my thing and he was in another doing his thing...I felt bad he was by himself and since Bennett was dozing I went in and started to help him pick up some toys and stuff and talk to him. He was really being a brat about some stuff, and I said 'Carter, sometimes I feel guilty for not spending enough time with you and then I come in here to do it and you act like this and I remember why I don't do it.' What kind of horrible, awful shit is that to say to your 4.5 year old? He doesn't really remember what I said, but I do...and I felt so horrible afterward I can't even begin to explain. I apologized to him about a half hour later and he didn't even remember what I said, which was good, but still...I need to control that shit, I just can't allow myself to say things like that to my kid, I don't care how frustrated I get.

But that's what this whole thing is doing to me...week after endless week...it is eating away at me and affecting every single aspect of every single day. Dammit...I was kind of hoping that writing this morning would be cathartic or therapeutic...I need to snap out of my funk. Oh well. Tomorrow is another day. Let's end on a happy note. Even though this weekend I saw a lot of what you just looked at above, check out this photo I took during this very same weekend.


He's still my bright, beautiful, happy boy...most of the time.


Friday, April 10, 2009

Bennett and the Epileptologist

Yesterday, at 4:00 PM, we had an appointment scheduled with an Epileptologist to review Bennett's treatment and make various decisions about where we are, where we are going, etc.

For those of you who do not know, Infantile Spasms (a soft, un-assuming description that REALLY needs to be changed to reflect the severity of it) is a form of Epilepsy that children get. Yeah...EPILEPSY. I've had a hard time explaining that to some people without writing a very, very long book here about everything I know, or everything I THINK I know, about it.

But of course that's hard to do really, because every case is different, every person's experience with their child is different, every child seems to have different kinds of seizure types at different times/intervals/severity, every child (seemingly) has a different treatment. I am a member of one forum where there are no two children with the same exact cause/treatment, and there are LOTS of active members. How freaky is that? Not one match. Close on a couple of us...but no cigar.

So we meet with the Epileptologist yesterday at 5:28 PM. Yeah you heard right...the appointment WAS at 4:00 PM as mentioned above. We were in the exam room at around that time, and we didn’t see Dr. Ep until 5:28. Now, I am not bitching about that...I get it, people are busy, appointments go over. I'm just stating fact here. And...as a parent of a kid with this extremely serious condition I expect that the parents who met with Dr. Ep prior to our appointment probably had lots and lots of questions and I am glad certainly if Dr. Ep took the time to answer them. He took his time with us, even though we were the last of his day, and lots of guys would have been trying to get home and grab some chow or see their own family.

He lays it all out for us, and he tells me things that I actually already expected him to tell me. That's the beauty of research and being prepared. It also tells me that he is on his game, and understands what we are dealing with here. He goes above and beyond and takes us into his office where his computer is and shows us the visual MRI slices of Bennett's Focal Cortical Dysplasia.

That was hugely helpful to me frankly...I am a visual person and have been wondering about it for a LONG time...I had looked at other MRI films on the net of the condition and wanted to see how Bennett's brain compares. I could now, if needed, draw it, and that helps me. Dunno why.

He explained that we'll never know the why, which I knew. We can’t know. The FCD might have been caused by a trauma to the brain in utero, some temporary lack of oxygen that caused Jen to go into labor prematurely, could have been after he was born, could be genetic, could be this, could be that. We'll never know the why, but I accept that, no problem.

Besides, all I really care about is the 'What Now?' and the 'What Next?'.

The 'What Now?' is that Bennett suffers from epilepsy because of this FCD. This area of the brain sends out wacky electrical impulses to the rest of his brain, the rest of his brain can’t handle it, and he has a series of seizure responses. I may be over simplifying it there, but it’s the best way I know how of explaining it. This electrical activity is apparently there a lot of the time, though the seizures are not constant, and it is making it VERY difficult for his brain to learn anything new, so he's kind of stuck in one place.

He isn’t regressing though, and that's a good sign. A sign of what yet I do not know, but a good sign.

So what's the 'What Next'? The next steps are:

1. To continue weaning off the ACTH. That wean ends next Friday.

2. To continue increasing the dose of Topamax VERY aggressively over the next ten days to see if they can stop the seizures.

3. Depending on how things go over the next ten days, a possible introduction of a second drug, Keppra, might occur. Keppra, another anti-convulsant, can apparently work in tandem with other anti-convulsants (which Topamax is) with minimal side effects.

4. A 45 minute EEG will take place at the end of these next two weeks to see what the brain activity is looking like. Dr. Ep explained that sometimes the EEG can reveal additional data (if the seizures are there but milder perhaps the harsher hypsarrhythmia patterns on the EEG might be normalized, etc.)

5. His case is being presented at some meeting next Wednesday to their whole Neuro/Epilepsy group...I think that is some kind of teaching hospital thing, though I am not sure. I think this is where ideas get bounced around, experiences shared, stuff like that.

6. In one month we are supposed to be meeting with a second Epileptologist to (I think) discuss further options if the condition has not been improving.

7. Materials and documentation are being prepared to send to a doctor who is considered by many to be one of the leading experts in the field, whom one of my fellow IS bloggers refers to as Dr. Rockstar and that just tickles me greatly, and this Dr. Rockstar has been contacted by us and has responded and is aware that we will be sending him the stuff for review and possibly doing an additional test either at his hospital or somewhere in state (in our insurance network) and sending him those results. That's all to determine surgical candidacy, if needed.

Bottom line is that the first attempts are to stop the seizures with medication...and if you can and you don't have to cut into a child's brain and start yanking stuff out, that's a good thing. But we want to be looking down that road and being prepared somewhat for it if the need arises, which it might, we just don’t know. From where we sit right now, he is POSSIBLY a candidate for a surgical procedure if the seizures do not stop, but we also do not have all the data, so I am not going to sit here and engage in false hope and undue speculation. Remember, I said POSSIBLY. It's all a big IF, but we are at least keeping all the options open and exploring as many as we can.

And that's the real trick...and it’s something that parents of children going through this understand completely and utterly, but other people do not. Managing the day-to-day roller coaster ride of emotions and plans of treatment, then managing the outcomes/results of that treatment. Some people use faith to help them, which I do wish I could get back...sadly that's been gone a long time.

That's all I have for today...we'll do the best we can to have a fun Easter for the kids, make sure we get our ducks in a row for continued exploration of any treatment option, and hope for the best with the latest plans...all we CAN do really.


Thursday, April 9, 2009

My Formal Apology to All Non-Smokers Everywhere

For as long as I can remember, I have been around cigarettes. Both my parents smoked when I was a kid, buddies smoked, and obviously in the 70's and 80's smoking was still widely practiced in places it isn't done now...restaurants, airplanes, waiting rooms, etc.

I began smoking in my early twenties. I had dabbled a LITTLE bit with it in my late teens, but not much, but I bought my first real pack for myself in college as a matter of fact. That's a fairly late start for smoking, so I've heard.


Last year, in November, I made the decision to quit. The decision was based on a few factors. First, my health as I age is becoming more and more of a concern. Second, the expense was really getting to be something to be reckoned with. And third, my older son Carter said something that really made me realize what a horrible example I was setting for my kids.


I didn't really smoke around them, always went outside, and maybe once or twice Carter had seen me do it in a park or something and paid it no mind. Bennett was still too young to even notice at all. But one day Carter came outside while I was smoking. I tried to hide it, but could not, and he kept asking me what I was doing.

'Smoking a cigarette', I said finally.

Still doing whatever it was he was doing with a ball, and not breaking stride, he said 'When I get bigger, I'm gonna smoke a cigarette like YOU'.

Well...crap.

So I went the route my mother had gone a year or so prior and used her, a lifetime smoker who has been smoke-free for two years now, as my primary source of inspiration. I met with my doctor and was prescribed Chantix to help me quit. As much as I bitch about drugs and how they aren't working for my son with his Epilepsy/Infantile Spasms, I can't really bitch about Chantix. It was a miracle drug. It didn't take every aspect away of wanting to smoke, but it helped in ways that the gum or the patch or anything else never, EVER did.

As I approach my six month mark of being smoke-free, I started to notice something awhile back. SMOKERS STINK. I walk through a store, Post Office, even a sidewalk, and I walk by someone who is a smoker, I instantly know it. And I don't mean the smell of a burning, lit cigarette. I'm talking a stale, shitty, used ashtray-type smell that follows them wherever they go like that filth-cloud followed that dirty kid on the old Peanuts cartoon strip.


So here, now, is my formal apology. To anyone whose car I smoked in, to anyone whose house I smoked in, to anyone I lit up in front of in a tight, confined space, to anyone I inconvenienced by having to stop what I was doing and go find a place to smoke, to anyone I exposed to my lingering stench, to anyone who had to kiss me on the lips with my cigarette-stench mouth, to ANYONE that had to be affected by my stupid, irresponsible habit...I am sorry.

Ahh...feel so much better now.

Actually I REALLY do, at least when it comes to not smoking. Everything else is pretty much crap right now, but I'm super proud of that. :)


Wednesday, April 8, 2009

More LOST Kubrick Figures

Figured it was time to try to get back to writing some blogs about stuff not related to Bennett. Not to suggest I care less about it, quite the contrary...I just need some distraction too. One can get consumed by this if one is not careful.

Now you know I love Kubrick figures. I've written about them in these pages, showed you some sets I have picked up lately. Along with MiniMates and Mighty Muggs and a few other things, they about all I am collecting anymore because of space/money/interests.

Remember the blog when I went over the new LOST Kubrick figures I picked up? Well, I managed to pick up two items in the last month or two. The Desmond chase figure and a Be@rbrick I did not know about.

I actually had my eye on this...

Ben Linus eBay Auction

But HOLY CRAP. Six hundred and ten dollars? A couple of people really wanted that Benjamin Linus. I mean...wow. I want it too, don’t get me wrong, but I don’t want it THAT badly.

So I'll just have to be happy getting my LOST block figure fix another way...check it out...my new Desmond Kubrick...


Jack Sheppard is my favorite character, always has been. Desmond Hume is a very close second. If it is a Desmond-centric episode, you can bet that it is going to be a FANTASTIC episode of LOST. That's interesting especially since he didn’t even show up until the second season. But what the hell, you can say the same thing about Chekov.

This figure is going for over 100 now, I've even seen it going for even 150. Happily I got it a while back when it was a HELLUVALOT cheaper.

Back when I did that LOST blog about the Kubricks, I showed a picture of a 2-pack of a Jack Kubrick with a LOST logo Be@rbrick. I expressed my dissatisfaction over that choice for the Be@rbrick. My exact words were:

This next shot is of a special edition they released, done in another format they have been doing a lot more of lately, a Kubrick in a 2-pack with a themed Be@rbrick. I'm not all that into Be@rbricks, and sometimes their companion Be@rbrick figure in these packs is cool, sometimes it is just weird. This one falls into the weird category.


I mean, a shiny bear with a LOST logo? LAME. Should have been all white, ala a polar bear, with a DHARMA collar on or a DHARMA logo on it. C'mon Medicom, let's try a little harder to come up with some ideas, 'k?


Now, I had no idea, NONE, that they had already done this. Not long after I wrote that I discovered a LOST Be@rbrick I had never seen before and bought it off of eBay. Here it is...


So, credit where credit is due and my apologies for dissing Medicom on not doing a polar bear. Clearly they already had and the Logo Be@rbrick may have been their only option in that 2-pack.

Tuesday, April 7, 2009

Because of Monday

It's Tuesday, April 7th, and we still have not reached our goal of seizure freedom for Bennett. Made a decision today, gonna stop wishing for it each day. It's killing me. I wake up, push down the pit in my gut, say a few words in my head about hope and that 'Today could be the day!' and all that and talk myself into getting out of the bed and into the real world.

I've got to stop that.

Not stop the hope, that isn't what I mean. I will always hope, but I think that instead it needs to go like this in order to maintain some sanity, which slips away each time I watch Bennett enter a seizure cluster. From now on, I am going to wake up, push down the pit in my gut, say a few words in my head about hope and then say 'Let's see what happens today!', then talk myself into getting out of the bed and into the real world.

Why am I at this place in my head? Because of Monday.

Quick set-up. I ended up watching Bennett quite a lot from Thu-Sun. Thursday night Jen had somewhere to go. Friday night she had somewhere to go. Saturday during the day I was around all day with Jen at the house, and Sunday she took Carter out for some one-on-one time with our 4-year old, who has been somewhat neglected of late.

So...I had a front row seat to 4 straight days of seizure clusters, and Sunday was bad. He had a lot.

So Monday, all day while he was with his grandparents house and went with them on errands, he had none. I heard about that at around 3PM...so of course, there goes that WISHFUL THINKING again...hey, today maybe really is the day? But of course, by 7-ish, there's Bennett, having multiple 'clusters', around 3 different clusters at night.

So I have to adjust my thinking before I go mad. And I am not really sure how. To balance keeping hope and staying positive, with eliminating some daily wishful thinking so that I don't have to feel crushed every day. No idea HOW to do that, but it is where my head is at and it is what I need to figure out and fast.

Friday, April 3, 2009

Walking the Line

I can't explain effectively why this week was worse than others for me and Jen. The end result of the week is that it really wasn't all that different than weeks prior, but for some reason maybe she and I were just a little weaker this week than in week's past and had a tougher time coping with the ups and downs that every day brings with this never-ending saga of Bennett's condition.

Some random thoughts...

How Can You Possibly Thank Everyone?
Those who have e-mailed me an encouraging note, reached out to a total stranger, cooked a meal, come over, called, sent cards, whatever any of you have done to help, I can't list everybody but I thank you all, especially this week, it's been a tough one.

Other Stories Matter Too
Many parents struggle with this and I have been meeting lots of folks. For example Danielle shares her son's story on her own blog, which I follow. You should check it out, it's called Dear Trevor. Mike, another blogger, has a great website dedicated to his daughter and her struggles with IS/Epilepsy. Check it out at Marissa's Bunny. A gifted writer too, and believe it or not a fan of some ReSaurus toy stuff from way back in the day. Small world huh?

CURE
On Danielle's blog yesterday she had a link to a video on the site for CURE, which stands for Citizens United for Research in Epilepsy. If you want to watch the video you should, shows how Epilepsy in all its various forms affects more lives than you can possibly imagine.

CURE 2009 Video

Bennett's Latest
Blood pressure has been very high for the last couple of days, and that's actually OK since we are going to be weaning him off of ACTH as of today/tomorrow anyway. I guess you would have to label ACTH a failure.

Funny that. I've never seen a situation where you can spend over 100,000 dollars (which we did to get this medication) on something and then you don't get a refund if the product fails.

Weird. Anyway, they had already switched him to Topamax as well and frankly we aren't really sure what lies ahead. Maybe the Topamax will do the trick, maybe they will want to try and add a new med, I have no f-ing clue. Most doctors don't either, so don't blame them. There is no 'standard treatment' here. That is why it is such a difficult thing to treat.

His seizure clusters are scattered right now. Sometimes he has more of an absence type (staring, sort of unreachable) for a few minutes (more early in the day) and then maybe a cluster or two of about 25-40 each night. Sometimes one cluster, sometimes two. Most of the time two clusters with, like I said, maybe 25-40 individual seizures (spasms) in that 10-12 minute time frame. Sometimes it's one cluster only in a day, sometimes its full-blown cluster early, absence style at night. One day it was five clusters. One day I counted over 53 seizures in a cluster, which I had not before or since. You just never know.

So bottom line is that current ACTH treatment is going to be going away, Topamax is being introduced into his system as of right now, and another meeting is scheduled next week with someone to talk about other options.

Tom Petty was no idiot. The waiting really is the hardest part.

Anyway, it's gloomy and rainy today and I have some work to accomplish, so I'll leave it at that.

Actually no, scratch that...let's wrap this up on a positive note. Jen's sister sent this to her a day or two ago, and Jen printed it and showed it to me. I went to the website from where I got it, The National Down's Syndrome Congress, though you can find this writing in a LOT of different websites by googling 'Welcome to Holland'.

It is a piece of literature/poem/essay, whatever you want to call it and it was written by a woman named Emily Perl Kingsley, a mother who has a child with Down's. Even though Bennett does not have Down's, I think the writing itself is very appropriate for any parent struggling with a situation where their child has a life-altering condition.

Welcome to Holland
by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome To Holland".

"Holland?!?" you say, "What do you mean "Holland"??? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy"

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills...Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes that's where I was supposed to go. That's what I had planned".

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very significant loss.

But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.

© 1987, by Emily Perl Kingsley. All rights reserved.

Wednesday, April 1, 2009

A Brief Update on Bennett

I don't want to leave anybody hanging that commonly checks this blog for updates on Bennett. You haven't seen anything for a couple of days because I haven't really had the emotional energy to update or anything else. We need a positive turning point, something to cling to and place some hope on, and we aren't getting it yet.

As of yesterday, a second medication is being added to the mix to try and control his seizures. He still has not had a seizure free day since February 12th. We don't know if the new drug, Topamax, in conjunction with the ACTH, will have the desired effect. Nobody knows. It's trial and error with rare seizure disorders. Don't be fooled, Epilepsy is a serious, SERIOUS issue in the world.

There is a meeting scheduled next week with an Epileptologist to evaluate him further and start opening discussions (I think) for surgical options. An Epileptologist is a Neurologist with more training specifically in the field of Epilepsy.

Anyway, that's it. I just don't have anything to offer here right now. We are in a bad place this week, it's hard to feel anything but bad, scared, worried, angry and tired. Getting out of bed takes a Herculean effort sometimes. Some days are better than others, but when you have a few bad days in a row all strung together it kicks you right in the teeth.