Saturday, May 30, 2009

The Best Laid Plans

I don't mean the best plan to make for getting laid, I mean that you start out planning to go one way and then end up going another. I had started this blog actually earlier in the day, and I was planning to talk about upbeat things...

But it's difficult, when you are going through a thing like we are, with a child who has a severe illness, to NOT focus on the negative parts of life. It's where you are in the head. You try very hard not to, you try to cling to the good and minimize the bad, but you do spend most of your conscious time feeling down.

Consequently, if you are a 'Blogger' or if you keep stuff updated on something like Facebook or Twitter, the flavor of most of your posts is going to be negative as well.

So I was gonna buck the system tonight, I was gonna say 'TO HELL WITH THE DOWNBEAT STUFF'. The PLAN was to talk about some hopeful subjects like Sophie's surgery or Danielle's new nickname, or even the stuff we have planned for this coming week in Detroit, and I also planned to show some video I took today of the kids. Not video of a seizure or anything like that, just them 'doing what they do'.

I shot the video during the morning, thought about what I might say in the blog which I intended to scribe after dinner, but then, of course, a mighty cluster of seizures ROARED in out of NOWHERE during said dinner. The seizures were so bad that we needed to get him out of his high chair so he would not head butt the high chair tray and wind up with a face covered with pieces of cut-up cheeseburger.

Now he's off to sleep for a while, and Jen is trying to catch a quick 20 minute power nap. Carter is back to his 'movie' he wanted to watch, and I am sitting in the middle of the kitchen, alone, the sound of Top 10 All-Time Dallas Cowboys on the NFL Network softly in the background (Tom Landry number 1? COACHES SHOULD NOT BE ON THESE FUGGIN' LISTS), surrounded by the remains of a deserted dinner, that nobody really felt like finishing and I don't have the energy to tackle cleaning up at the moment.

That is the way people like us live right now. There is no 'normal' activity, not when, at any time, something can just happen to turn everything on its ear.

But there were those moments today, when Bennett was awake, that were special, that were funny, that were charming. Carter made me laugh quite a few times until later in the day, when he decided he would not nap and then turned into the Mirror Universe Carter. The one with the goatee and the Agonizer.

But there were good moments. They DO happen. They are just so much harder to appreciate after a dinner like that.

Like this one...Carter and Bennett interacting a little while Carter watches cartoons on Saturday morning.

I just had images of that pretzel causing a Rancor moment and locking his jaw in place, so I had to grab it and exchange for something else.

Or this one of just Carter, mainly for you, Mom, until you get your Skype and camera up and running...

Or this one, of Bennett. No seizures, just him exploring. He is actually being even less jabbery here than he had been but I wasn't able to get it on disc. I do see how he tries to process the word 'Dadda' and eventually does. But when he does, he smiles.

Which of course always makes me smile too. What a precious boy, he does NOT deserve what is happening to him. But then again...who does?

Friday, May 29, 2009

Artists Alley: Dustin Nguyen

Sorry, but still haven't gotten round to the big update this week for Bennett and his appointment locally, will soon though.

Until then, we take 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.

Today I want to introduce you to the work of Dustin Nguyen, who goes by the deviantART name of 'duss005'. Mr. Nguyen is one of those GODS I mentioned in the above paragraph that I re-use to start these AA Blogs...he works primarily for DC Comics, and does a lot of Batman work. His stuff is just...I don't have words for how much I love it. In fact, he is one of the few people in my life that I have paid to draw a sketch for me. I just don't do that often.

Wikipedia has this to say:
Dustin Nguyen is a comic book artist who has worked for DC Comics and WildStorm since 2000. He has since worked on such titles as Jet with Dan Abnett, Wildcats v3.0 with Joe Casey, Batman with Judd Winick, Manifest Eternity with Scott Lobdell, and the latest revamp of The Authority, The Authority: Revolution, with Ed Brubaker. Recently, he was the artist on a six-issue arc of Superman/Batman entitled "Torment", with writer Alan Burnett.

With issue #840, Nguyen became the regular ongoing artist with writer Paul Dini on one of DC's flagship titles, Detective Comics. He enjoys playing Street Fighter.

Take a look at some of my favorite pieces of this AMAZING artist. Click on any of them to view them full size. You's worth it to see the subtlety in his watercolor (which of course are NOT done justice unless you can see one live)...

If you'd like to see more of his talents in action, check out Dustin Nguyen'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!

Thursday, May 28, 2009

You Can't Handle The Tooth!

Well said, Jack, sort of. Always loved you in that movie.

My blog for Thursday morning was GOING to be about our visit with Dr. Epileptologist #2 for the first time yesterday morning at the hospital. But then I got back after that hour and a half appointment (plus travel time) and realized I had a LOT to say about the experience. BUT, I also only had less than HALF my day left to try to get some actual work done, and there is stuff that needs to get done. Then I had some other chores to try and hit in the evening, with very little time left for bloggage.

But fear not, oh devoted reader of Blogzilly, I have been meaning to tell you about Carter's tooth. About a year ago, he smacked his left front tooth into something, I can't even remember what. Been loose ever since. Naturally, as he approaches the age of 5 his adults are starting to move around in there, and pressure is being placed on the baby teeth.

So a couple of days ago, Monday morning I believe, Jen is brushing Carter's teeth and flies the accursed tooth out of Carter's mouth and on to the floor. There was a little blood, but no real pain since it was ready to go and Carter was more fascinated than scared. Which was a shocker to me, since he does not handle any blood well at all. (Takes after the old man.)

Anyway, here he is, showing off his new gap.

Yes, we perpetuated The Lie and told him to put the thing on his nightstand (under the pillow is just GROSS) and in the morning there was a prize waiting there. Hell...might as well keep him young for as long as I can, especially since I seem to be aging 30 days for every actual day that passes. :)

Tuesday, May 26, 2009

A Shitty Entree with a Side Serving of Hope

So, we sit down at the table tonight, and I ask the question to Jennifer I often ask as we sit down to dinner, after I've asked Carter about his day and what he learned and all the other things that one day he is just not gonna tell me about but does happily now. After THAT, I turn to the wife... did he do today?

He actually had a light day, only two clusters of LESS THAN TEN seizures each. first, I thought, well...super! But that little negative tickle started and then I realized The Truth.

Well SHIT, the big one is coming then isn't it?

And it didn't waste ANY time. It hit right there at the table, with some very peculiar, very strange elements that I have not seen before. And it lasted. And lasted. And lasted. 12 minutes total. A new record. It was alarming at times. VISCERAL. He nearly slammed his head into the table so I got him out of there.

Not used to this level of intensity. Not at all.


I am just wiped emotionally right now. We have an appointment tomorrow with an Epi here in town, the Dr. Yoda visit is next week, and it can't get here soon enough. There were times tonight where we were saying Bennett and waving our hands in front of his face and he had ZERO response. Not even a flinch. He was breathing, he wasn't shaking or convulsing, he just wasn't there.

I'm scared. It's official. I'm unquestionably, irrefutably, 100% scared to death.

IN THE MEANTIME, how about something hopeful for a change?

Sophie is a young girl who has battled Infantile Spasms a LOT longer than Bennett. A lot longer. Her mother, Elaine, maintains a blog for Sophie at Our Sweet Sophie. Elaine is a terrific person, has been nothing but awesome when it comes to reaching out to us in our need and giving tons of advice, info and encouragement.

See you gotta remember, I'm the newbie here, people like Elaine, Danielle, Sinead, Mike, Cynthia, Holli, Jen, Liz, Karen and on and on (PLEASE forgive me if I forgot to mention you here by name...just frazzled tonight)...they are the vets. I only hope that I can one day pass it along, pay it forward, and be as generous with my time to some other new entry into this world as they have been for me.

Anyway, Sophie started her surgery today, in Detroit, and Elaine has been incredible about updating her blog all day long about the status of her daughter. If you haven't already read her blog, do it now, because she has a lot to share, both informational and emotional, about this whole thing, and she's taking the time to share the journey with all of us.

Good luck, are often the subject of discussion in this house, and I hope that this is the beginning of a new, amazing, wonderful chapter in your life. We are constantly wishing you all the best. Here's a photo, from the Coleman's trip to Detroit taken yesterday I believe, that I swiped from their site.

Where To Put That Limbo Stick

Yeah, hey...LIFE? Yeah you heard me. Wanna know where you can put that Limbo stick? You guessed it, right up the poop chute.

I hate this waiting, and waiting, and waiting, and waiting to have appointments, to get to next stages of treatments, to get forward momentum.


Because 3 to 6 times a day I have to watch this happen.


And again.

And again.

Just FUCKING sick of it. I want to help my son. I want him to get better. You hear that grunt in the video? That's new...must really be contracting in the torso to force the air out like that. Anyway, I made that video yesterday, for anyone who is keeping score. The last one I showed was from April, around 5 weeks earlier. I dunno, doesn't look to me that the medication helps much. But I'm no doctor.

It's just bullshit...I know, I know, it could be worse. I get that. He could be dying, he could lose his arms and legs, he could have a disease that has NO cure at all. And truthfully, I respect that as a 'Life Philosophy of Being Hopeful and Counting Your Blessings', but the fact is that miniaturized aliens could fly out of my ass and attack my son too, I guess ANYTHING can happen that is bad to people and in the scheme of things this is not as bad as some...but it still stings like a BITCH and I want to vent about it.

Anyway...I guess my optimism of a post or two ago is being challenged right now. So be it. Happens. I'll find some strength from somewhere and move on. But as of this writing, I'm just spent and pissed. Slept horribly last night, tossed and turned. Sometimes I think you should just get up in situations like that and start doing stuff. But you hope that somehow you will find that zone, but then you look at the clock again, and realize...this is gonna be a LONG night...

I can't get to sleep
I think about the implications
Of diving in too deep
And possibly the complications

Especially at night
I worry over situations
I know I'll be alright
Perhaps it's just imagination

Day after day it reappears
Night after night my heartbeat shows the fear
Ghosts appear and fade away

Alone between the sheets
Only brings exasperation
It's time to walk the streets
Smell the desperation

At least there's pretty lights
And though there's little variation
It nullifies the night from overkill

Day after day it reappears
Night after night my heartbeat shows the fear
Ghosts appear and fade away
Come back another day

I can't get to sleep
I think about the implications
Of diving in too deep
And possibly the complications

Especially at night
I worry over situations
I know I'll be alright
It's just overkill

Day after day it reappears
Night after night my heartbeat shows the fear
Ghosts appear and fade away
Ghosts appear and fade away
Ghosts appear and fade away

Monday, May 25, 2009

When it Rains...

Memorial Day was going to be just a cookout/visit with family over at my wife's Mom's house. That's what most people do, that's what we like to do on Memorial Day. Eat burgers and hot dogs, fly the flag, play some Cornhole and all that good stuff.

As Life has been teaching me lately, things just don't seem to go as planned these days.

Jen's sister, Mandy, came down to Columbus (they live in Akron) with her husband Brian, and their two kids...Jackson and his younger brother Anthony.

Meet my nephew Jackson...

And his younger brother Anthony...called 'Tee-Tee' by many...

On Sunday, Jackson's asthma started to get bad. SUPER bad. Brian took him to the Urgent Care, but things were worse than they thought and so where did they end up? guessed it...Nationwide Children's Hospital, same place where we spend so much time with Bennett.

And that's where they are at the time of this writing, which is around noon-ish on Monday. They had to admit him for overnight and he may even be there again tonight. They need to get his oxygen levels back up and are having a hard time. He's in no severe danger from what I understand, but they need to keep an eye on him and figure out how to change his medication to help him with this.

Lately, the pollen count has been out of control, probably helped to exacerbate his situation. I know last week even though it wasn't actually up to the point where it was hot enough to kick the A/C in, I closed up the house probably for the next few months, because I just can't live my day sneezing 40 times in a row and scratching my eyeballs out. And I know high pollen counts can wreak havoc on asthma sufferers.

So hopefully everything will be OK and he can be released from the hospital on Tuesday. I think the actual cookout part of the day is still happening. Jen took Carter over and help her Mom, and I am here watching Bennett. He had a serious group of seizures a little while ago and is sleeping it off. Got some on a short video with my camera, but haven't loaded it in yet...I'm in the kitchen writing on the laptop. The desktop computer has all the stuff to get junk in and out, as far as picture and video loading.

Oh I forgot to mention that...picked up a laptop last Friday. Was needed. I have to be able to do some work and watch Bennett at the same time on some days, and this area down here is childproofed, but my office is not. That, and the need to travel and possibly be gone a long time for hospital visits or even for work, it was time to get the laptop. Haven't had one since I worked at Palisades, been a few years.

This one is NICE...and it was fairly inexpensive. The last one I had was a Mac, so it was incredibly overpriced. But this one was reasonable and is SICK with memory and capacity.

So that's our Memorial Day basically, not much else to report on. I'll be digging in to some burgers in a few hours, after Bennett wakes up and is ready to go. He usually sleeps at least 2-3 hours after a set like that though. But then I gotta bring him back here, while Jen takes Carter up to see Jackson at the hospital. There'll be a LOT of babysitting for me today. And seizure watching and monitoring sleep.

Something is making that a lot more bearable today though. The super awesome Land of the Lost marathon on the Sci-Fi Channel.

I loved that show as a kid, and it is SO freaking cheesy watching it as an adult. It's still a great concept, and I think the film coming out should be fun. Taking a comedy approach was probably the best way to go with it, despite the fact that the original show was not intended to be funny, it was just a kid's show. But it was such a high concept idea for a kids show at the time, and I did love it. Came out in the early 70's I think I was around 6 or 7 when it started. And in those days we ONLY had cartoons on a few channels to choose from, so you watched what you could get in on the rabbit ears antenna. DVD, DirecTV, DVR, hell even BETAMAX or straight-up VCR's hadn't been wildly available yet.

Now, let's just get them to make a film adaptation of H.R. Pufnstuf and I can die a happy man. Doesn't hurt to hope... :)

Saturday, May 23, 2009

Bennett's Story Part 6: Road to Nowhere?

It was suggested to me recently that I try to organize as much of Bennett's story as I can, try to put the last 3 months into some kind of perspective. I am going to post this here now and add to it as there is time. I will link up on the side of the blog main page so that people can access it who want to and I will get it finished as quickly as I can for anyone needing or wanting to see the chronology of Bennett's condition.

Bennett's Story Part 1: Ahead of His Time

Bennett's Story Part 2: The Calm Before

Bennett's Story Part 3: Shit? Meet the Fan

Bennett's Story Part 4: The Truth is IN There

Bennett's Story Part 5: Acthar the Terrible

Bennett's Story Part 6: Road to Nowhere?


Bennett had his first Infantile Spasms cluster in February. Then in March he was officially diagnosed with it, a cause was determined (Focal Cortical Dysplasia) and the first real attempts were made to treat this devastating form of childhood epilepsy medically with the a hormone called ACTH, a very expensive treatment that failed miserably.

That sort of defined the months of February and March for me...and what defined April and into May? A new doctor and a new attempt at treating Bennett with different AED's, but essentially a long, miserable stretch of road that didn't seem to be getting us anywhere at all.

Betcha don't know what an AED is, do ya? Well, except for the IS/Epilepsy Mom's and Dad's reading. Those are Anti-Epileptic Drugs, or AED's for short. Nifty huh? I'm a whole DICTIONARY of new terms now, my friend. Intractable, Symptomatic, Cryptogenic, Polytherapy, Idiopathic, Lennox-Gastaut Syndrome...yadda, yadda, yadda...and more FUCKING yadda.

Had someone tell me (during a conversation in which I was telling them about Bennett's history, condition, and possible future) that I sounded more knowledgeable than a Doctor on the subject. I wouldn't go THAT far, but when you have a child that has a rare problem, you tend to read every single thing you can get your hands on.

So, armed with a boatload of knowledge, a list of questions and a whole lot of anxiety, we took Bennett to see Dr. Epileptologist #1, a new guy, in the second week of April. I wrote about that visit in a blog entry called Bennett and the Epileptologist. If you wanna get all into that, go read. If not, here's the quick re-cap.

1. Looked at the MRI for the first time, really SAW the Focal Cortical Dysplasia.

No..looked nothing like that. I just have always found that image funny. :)

2. Dr. Epi #1 wanted to attack the IS aggressively with medication, two kinds ultimately, to try and get Bennett some Seizure Freedom. We IS parents call that SF. He also wanted us to make an appointment to bring in Dr. Epi #2, who bats more from the surgical side of the Epilepsy Home Plate.

3. Plans within plans were laid out. Appointments made, suggestions given. Almost all my questions were answered.

4. Promises were made about securing records for a consultation with someone considered to be an Infantile Spasms expert that WE, on our own, had been trying to set up.

When we left that appointment, we actually had a sense of hope. What I later learned, however, is that this is typical with each new STAGE we enter of Bennett's treatment. We meet with someone, we try something, we have hope it is going to work and we feel better.

This is natural.

This is normal.

In fact, you almost GOTTA have that sense of hope as you round each corner on the Road to Nowhere. It hasn't, to this point, lasted very long, this renewed hope, this renewed vigor, that envelops you as you make your way into a turn. It fades really fast, especially as the Road straightens out again and you can't see SHIT for miles, and miles, and miles. Except maybe another sign for Stuckey's.

Almost immediately, hope faded in mid April. Some of the appointments scheduled were canceled by Team Epi, as I called them now, with no reasons given. Getting the records sent was like asking someone to use a pen to make us a hand-written copy of War and Peace. Nothing seemed to be getting done at all in the medical front. I wrote about these frustrations as well, but this picture, still one of my faves, sums it recap needed.

Bennett was now taking Topamax and we then started adding Keppra. He actually WAS taking Topamax, though he is actually NOT taking Keppra. What's the difference? I what if he is on a generic version of Keppra? Ah...this is what I mean about every day getting a new wrinkle...come to find out GENERIC AED's do not work the same as NAME BRAND AED's. Interesting huh? That epilepsy is a BITCH, ain't it?

He is actually taking Topamax and Levetiracetam. Let's be specific.

As we watched him, through April and into May, lose the ability to say any of the words he used to say, as we watched him stumble and fall and lose his ability to keep himself as well-balanced as he used to be, we could only wonder to ourselves. Is this the medication or the condition? Is he groggy because he just had a strong dose of an AED or is his brain getting more and more scrambled because of the seizures?

And of course, the seizures were not going away. And why would they really? I mean, let's be honest here and lay it ALL out on the table. Why would anybody REALLY expect them to? Infantile Spasms are, in Bennett's case, a symptom. Like any other symptom, when you treat that symptom, you still aren't treating the root cause.

There is an abnormal area in his brain, that has been established and verified. That abnormal tissue is somehow, some way, creating an electrical discharge that spreads out across the rest of his brain tissue and causes a seizure to occur. Why in the world would there or should there be any expectation that this symptom, this seizure event, this 'INFANTILE SPASM', would stop if the abnormal tissue is still there?

I have never received an answer from any doctor about this, and I HAVE ASKED THIS EXACT QUESTION. The answer has always been. I DON'T KNOW. Is it possible that sometimes, even in the case of Symptomatic IS resulting from Cortical Dysplasia, that some random medication could be tried that results in some kind of 'short circuit' of the tissue, or at least a short-circuit of the event itself, to stop the seizures from happening? I guess it is possible. Probably HAS happened, otherwise I suppose doctors wouldn't be trying the medications. They have to have worked at some point on some poor soul in the past.

Just sucks to be 'trying things' on your flesh of your flesh. You don't see him or her as someone to experiment on, you see them as your precious child. You see them in a way NO ONE else can or will ever see them. You also see their future flash before your eyes, and holy shit it is DARK in there, and all you want to do is MAKE. IT. STOP.

But you can't. It is simply not within your power.

So...what CAN you do if you are on a Road to Nowhere like this one?

Well, first of all, you can remember to remember that THERE FUCKING IS NO SUCH THING, YA NEGATIVE-THINKIN' JACKASS. The Road is going to lead somewhere, you just don't know what that final destination is going to BE yet. So stop using dark metaphor and start trying to make Tony Robbins proud. Get your sorry ass out of your funk as much as you can today and TRY TO STAY POSITIVE.

I know it's hard, and it's OK if you can't make it through the entire day without wanting to punch someone, or cry, or curl up on the sofa and stare a while. But there are golden moments in any day during times like these. Grab them while they are there and bathe in the pureness and joy of them as much as you can.

And don't forget, there is someone in the back seat who is depending on you to stay focused, stay sharp and stay alert. He needs you to calm the fuck down and relax. He needs you to gather as much information about what lies ahead, cause you are the only one who can take him where he needs to go.

So that's what you do. You search the net for blogs from other parents who are going through what you are going through. You look at message boards. You find you are not alone. You reach out. They reach out to you. You find that everybody has a unique story. You find out that some have it a little better than you, some have it worse, but you all share a commonality, a bond that you never even knew was possible amongst a group of complete strangers.

You read. You absorb. You set up meetings with Early Intervention Services. You set up therapy. You talk. You listen. You learn how to do things differently. You read inspirational things like Welcome to Holland. You gather info. You keep records. You keep your cool. You lose your cool.

You do whatever you have to do to get through each and every day, all because the little guy in the back seat needs you to.

That was how it went through April and into May. And that's really where we are right now. Good times. Bad times. You know I've had my share.

But there are plans. Things in motion. Stuff to look forward to. Signs up ahead.

And that's as good a place as any to start winding down this little history lesson, for now. It about catches us up to where we need to be for the time being. Bennett gets Physical Therapy to help him with his balance and gross motor skills, Speech Therapy to help him with, speech, and Occupational Therapy to help him find an Occupation so that he can support his parents who will certainly be fired for taking all this time off for all these freakin' appoinments. No, the OT is to work on his fine motor skills. I am still trying to find out why it is called 'Occupational'.

Shocker of all shockers, Team Epi called and wanted to actually schedule a meeting with Dr. Epi #2 next Wednesday and he already met with Dr. Ped this past Friday, just for a 'Hey How Ya Doin'. We're gonna have his eyes checked, just to be sure, we're gonna have his hearing checked, just to be sure. We're gonna do a lot of that.

But best of all, in around ten days, we are loading up the Lillymobile and heading North, on a Road That Most Definitely Leads Somewhere. There we will meet with Dr. Yoda, the Jedi Master of Infantile Spasms, and try to find out what else might lie ahead for our little guy. It isn't our final destination, and we may come away from it with good news and we might come away from it with bad news.

For now? I'm going to hope it's good news and leave it at that.

Friday, May 22, 2009

Bennett's Story Part 5: Acthar the Terrible

It was suggested to me recently that I try to organize as much of Bennett's story as I can, try to put the last 3 months into some kind of perspective. I am going to post this here now and add to it as there is time. I will link up on the side of the blog main page so that people can access it who want to and I will get it finished as quickly as I can for anyone needing or wanting to see the chronology of Bennett's condition.

Bennett's Story Part 1: Ahead of His Time

Bennett's Story Part 2: The Calm Before

Bennett's Story Part 3: Shit? Meet the Fan

Bennett's Story Part 4: The Truth is IN There

Bennett's Story Part 5: Acthar the Terrible

Bennett's Story Part 6: Road to Nowhere?


After decompressing for a few days, and talking things over with the insurance company, each other, family and doing as much research as we could, Jennifer and I made the decision to re-admit Bennett to the hospital to begin treatment for his Infantile Spasms using ACTH.

Why go back to the hospital? Well, they have to give him the first couple of shots, and teach you how to give the shots. ACTH is administered via needle. I've written a lot about ACTH and the process of getting Bennett this treatment before, so why re-write what I already have written?

Get the LOST flash-back/flash-forward music queues ready!

From March 10th, 2 Days Prior to this Hospital Visit
Anyway, the ACTH...dangerous and super duper expensive. To the tune of 100 grand for the dose cycle. So some insurance things had to be investigated while we are home from the hospital. The Prednisone was a random hope in hell...probably not likely to help but it can in some cases, so we were trying to get it sorted out with the insurance company even from the moment we came home just in case he needed to try to take the heavier stuff.

See the drug is SO fuckin' scarce because the condition is SO rare that a) the inhuman freaks that own the drug company that create it can actually live with themselves by charging 100K for it and b) if you don't have insurance approval or a check I guess, they will not ship the medicine to the hospital that requests it. Nice, huh?

Anyway, our insurance company is going to cover it...almost. Not all of it, there will be a co-pay of about 4500-5000 dollars, but another company, a group known as NORD, or the National Organization for Rare Disorders, has promised the drug company that they will cover the 5000 dollars on our behalf (assuming we meet with their criteria which I think we do). That letter of intent and the letter from our insurance company was enough for the drug company to release the medication. It is being shipped overnight to the Children's Hospital here in Columbus. Should arrive tomorrow by 10 AM.

I think Thursday we will have to re-admit Bennett to the hospital for a couple of days. The ACTH is injection-based, so they have to be sure we know how to administer the injections. There are serious, SERIOUS health risks to Bennett that we have to be trained to look for and we have to be trained to regularly check his vital signs and so on and so on. And they have to keep a close eye on him in the beginning of all this as well.

And the real kicker? This may not even work.

Queue LOST-flashback style music...of course it didn't work, but I have some thoughts on that later...but I wrote more about this second hospital visit when we got back.

From March 14th, the Day After We Came Home...
Jen, Bennett and I went to Children's Hospital at around 10AM on Thursday to get everything set up to begin the next phase in trying to fix what ails him. Unfortunately, we found out around 12 that he would have to undergo another long term EEG. He hates getting hooked up to the leads, and who wouldn't, but to also keep them on for 14+ hours? Crap.

So he had that done, and then on Thursday night they gave him the first injection of the ACTH. Well, actually Jen gave him the injection while I held him down. She did great. For a woman that has been out of nursing with actual patients in a hospital for at least 5 years she handled the needle like a crack addict. He took the shot as he always does...with strength. The kid has that in spades.

2 more injections on Friday, and we came home from the hospital Friday night. It was super weird driving with $50,000.00 worth of medication in the trunk. Unreal is a better word than weird I think.

Now it's Saturday, another two injections today. He took them well, Jen delivers them great. His vital signs are OK, no spikes in blood pressure but definitely an increase. We have monitors here at the house to check him throughout the day. We check his urine for glucose, save a daily stool sample for analysis though I am not exactly sure what that one is for.

His appetite is high, as we expected, he is more agitated, more difficult to console. We expected that. He hasn't started to swell much like they say he might from the steroids. We're wondering when that will start.

And as for the seizures? No real changes.

We don't really know and neither do the doctors a time frame as to when we might see them stop. I mean, there are certainly protocols for how long he stays on the meds if they are working and how soon to take him off if they do not work for him, but we are talking about a window of a couple of weeks minimum as far as determining whether they might work for him.

It isn't like the movies, where the medicine goes in, the patient opens his or her eyes, blinks at everybody in the room and smiles and everyone breathes a sigh of relief. Like I said before, life just doesn't work like that. I just wish it did.

OK, no more flashbacks, we're back to present day writing.

Bennett was on ACTH for a while, but not THAT long. He wasn't on it long enough to have any of the serious complications that some kids can have, the blood pressure issues, the enlargement of the heart, weight gain and the rest. He did gain some weight, but he lost it pretty fast too.

Check it...two weeks PRIOR to taking the ACTH...

Then after being on ACTH a couple of weeks...

I didn't write as much about how truly pissed off and stressed out it made me that nobody could actually TELL me how long it is supposed to take, or how do you know the ACTH is working and all that. Truth is, looking back (not that far either) I get it...nobody really knows, it's all just a big crap shoot anyway, this disorder. So why tell me anything when even THEY don't know?

Having said that in an attempt to try and be understanding of the human element, there were still just things that never quite added up when the Neurology department was handling the bulk of Bennett's care.

By around March 23 the decision is made to add Topamax to Bennett’s medication schedule, and I was getting the feeling that they (the Neurologists) were not thinking that ACTH was going to be what fixed Bennett up. Of course, nobody would SAY or ADMIT that they thought ACTH was a failure yet. He was on a slowly DECREASING dose of the ACTH, and then, on March 26, for a reason we still aren't totally 100% sure on, a decision is made by Dr. Neurologist #2 to take the dose back up. OK, so we make that happen. There is no change in the seizure activity, at least, no significant change.

Never made sense to me...maybe he wasn't getting a high enough dose? Nobody would give me a satisfactory answer on that. I was completely baffled and still am.

But then, on April 3, I get even MORE confused. A new decision is made by Dr. Neurologist #2 to initiate an extremely fast wean off of the ACTH, based on a research article she read. That's what we were told. So instead of the slower weaning, it became an extremely fast wean that ended in around, what...2 or 3 weeks?

God only knows what the reason was...and I mean that. GOD ONLY KNOWS. Because I sure as shit don't know, and the doctors at the hospital who made that decision sure as shit didn't explain it to me, so who knows if THEY even knew for sure?

I only know three things with absolute certainty by this point.

1. The Neurologists at the hospital have communication problems, with each other and with their patients.

2. ACTH cost more than $100,000 and FAILED. That's 100 grand that counts against Bennett's lifetime maximum, that he can never get back, for a drug that did little more than make him eat like a maniac for a month. (Not to mention the bill for $81,000.00 that the hospital sent the insurance company for the ONE NIGHT STAY in the hospital. My theory? They had to buy the vial, at 23 grand, gave Bennett three shots with it and tossed the rest. BUT EIGHTY-ONE THOUSAND DOLLARS FOR A DAY AND A HALF?)

3. The people who run/own Questcor Pharmaceuticals, Inc. (the ONLY drug company who actually makes this type of ACTH) barely even qualify to be called Human. To bail themselves out of a financial jam they caused for themselves, they raised the price from around $1600.00 (US) a vial to over 23 THOUSAND DOLLARS (US) A VIAL. These so-called 'people' should be treated with the same level of contempt as any of the pigs at AIG. Yet if you ask anybody on the street they have never heard of Questcor. That's a real crime. These fuckers make a ton of dough selling false hope to the parents of a lot of sick kids.

Some good reading about the whole situation can be found here...

Questcor Make You Sick Article #1
Questcor Make You Sick Article #2
Questcor Make You Sick Article #3

...and there's lots more, but waddya gonna do? It is a SHIT situation that not enough people know about or care enough about to fix. Certainly not the people who CAN make a difference. And frankly? Us parents who have children with these issues are too busy fighting the Infantile Spasms or the conditions that cause them to fight City Hall, too.

Bottom line? It's wrong and needs to change, like a lot of things in the world that should be changed and never are. Always reminds me of a speech made by Commander Adama in the first episode of the new Battlestar Galactica...

...But we never answered the question, why? Why are we as a people worth saving? We still commit murder because of greed, spite, jealousy. And we still visit all of our sins upon our children. We refuse to accept the responsibility for anything that we've done. Like we did with the Cylons. We decided to play God, create Life. When that life turned against us, we comforted ourselves in the knowledge that it really wasn't our fault. Not really. You cannot play God then wash your hands of the things that you've created. Sooner or later, the day comes when you can't hide from the things that you've done anymore.

I just love that last part. I use it all the time...Sooner or later, the day comes when you can't hide from the things that you've done anymore.

Bennett's Story Part 4: The Truth is IN There

It was suggested to me recently that I try to organize as much of Bennett's story as I can, try to put the last 3 months into some kind of perspective. I am going to post this here now and add to it as there is time. I will link up on the side of the blog main page so that people can access it who want to and I will get it finished as quickly as I can for anyone needing or wanting to see the chronology of Bennett's condition.

Bennett's Story Part 1: Ahead of His Time

Bennett's Story Part 2: The Calm Before

Bennett's Story Part 3: Shit? Meet the Fan

Bennett's Story Part 4: The Truth is IN There

Bennett's Story Part 5: Acthar the Terrible

Bennett's Story Part 6: Road to Nowhere?


Bennett's first stay in the hospital since those long three weeks in the NICU began on March 5, 2009, after receiving instructions to bring him to the hospital immediately following an EEG earlier that same day that revealed that he had a form of childhood epilepsy called 'Infantile Spasms'.

That very first night, a Thursday I believe it was, Bennett was hooked up to a new EEG monitor, this one to track what was going on inside his head over a 24-hour period. This included video monitoring. There wasn’t a whole lot either one of us could do for him except try to keep him comfortable.

Jennifer stayed with him overnight and I went home by myself so that I could be available for Carter. Though for some reason I still haven’t figured out, Carter ended up sleeping at Jen’s parents house. I think this was Jen at work…trying to protect me, offer me a chance to rest, to not freak out. She knew that my anxiety levels had been in a place where I had not needed to take medication for nearly 3 years. She could also see that the anxiety was starting to re-assert a physical hold on me.

The following day Dr. Neurologist #1 came to talk to Jen during rounds about Infantile Spasms and what to do next. I was not there. These Rounds were actually early that day and I didn’t get back up to the hospital until after 1 because of some stuff I needed to take care of for work. Dr. Neurologist #1 offered Jennifer a choice between Prednisone, an oral steroid, or something called ACTH. She called me about it and we talked about it and of course we chose the oral steroid, seemed less invasive and at the time we didn’t know a THING about Infantile Spasms, remember…we had JUST started to research when we got the call to take Bennett to the hospital.

I was at the hospital all afternoon and stayed with Bennett while Jen left to shower and nap and have some time for herself. Jen came back, we stayed with Bennett for a while in his room, but an MRI had been scheduled for this second night at the hospital, so we had to go down to where they kept the equipment.

An MRI requires you to remain very, very still. Even adults have a hard time with this. I have had two MRI’s in my life as an adult, and it requires Herculean effort to remain still. Plus, it is a scary thing to hear the thunderous sounds of that magnetic shit or whatever is going on in The Machine.

So they knew they were going to have to put Bennett under for the MRI, with a heavy drug. They gave him the injection, and I was having some real problems watching. The best way to describe it is that it started out like he was drunk, but then it just looked to me like it would look if he were dying. Once that thought worked its way into my head, I was beyond the point of pulling back the attack. It started to overtake me.

Chest getting tight. Breathing erratic. Eyes darting around. Walls closing in. Heartbeat racing. Lights getting brighter, darker, brighter, darker. Gotta sit down. Gotta get out of here. Room is too small. Gonna be trapped in here. Can’t focus. Can’t think straight. Lightheaded. Gonna pass out. Find a chair.

Jen helps me out of The Room, gets me into a chair, and helps me settle back down to a more rational state. After I was out of The Room, I actually started to ease back out of the feeling of passing out, and I could breathe easier. She tells me to go home if I am physically able to.

Dammit, IT was back, with full force. Thought I’d beaten it. Guess you never really beat PTSD and anxiety, you just manage it. She gave me a hug and told me to go home and get some sleep because I clearly needed it. At first I resisted, more out of a sense of embarrassment than anything else (I’ve always hated this mental liability and been embarrassed by it), but reasonable minds prevailed and I agreed to go.

I called Jen a little later, said goodnight. They were back in the hospital room and Bennett was sleeping off the drug, no issues with any kind of reaction to it. She was a bit short with me, and at first I thought maybe she was upset that I had left, maybe it was one of those ‘Woman Tests’ that your wives make you take and I had failed.

You know the kind I mean…the ‘Does this dress make me look fat?’ kind of thing or the 'You aren't really attracted to that kind of behavior from a woman are you?' kind of thing or the ‘No you don’t have to get me anything for Valentine’s Day’ kind of thing. I wondered if her telling me to go home was the type of thing where I was actually supposed to say ‘No way!’ and stay no matter what.

I couldn’t have been further from the truth. That night Jen knew something was up, something serious, with our son. She never spoke to me about it when I called to say goodnight, she did not call me later in the wee hours of the night/early morning, while she cried herself to sleep in the hospital room while holding Bennett in her arms. She did not want to disturb me or worry me since she knew there would be nothing I could do about it from home and she wanted me rested and able to beat off any panic attacks the next day.

But she knew that they found something on that MRI. She knew because she is a nurse, and has worked in the medical field her entire career. She knew because they ordered some kind of secondary procedure ‘on the fly’ that wasn’t originally planned for based on what they saw during the first pass on the MRI. She knew because she hid behind a door and heard two nurses whispering something like ‘No, the parents don’t know’, during a discussion about that MRI and the results. She knew because Mothers Know.

Upon my return to the hospital the next morning, she told me all of the above. Talk about feeling like shit. Again…her concern for my mental state forced her to keep that from me the night before. Note to self…do NOT forget to call that doctor and get your shit secure. I will not be a liability here...

I remember sitting there waiting for Rounds with her and suddenly THAT period of time became The Worst Part So Far. We had to try not to speculate on what they found, though Jennifer, because she deals with patients with Cancer in her day job, kept going to that place…brain tumor. We waited for several hours until the team of people (interns, residents, whatever you call them), led now by a DIFFERENT doctor (not the one from Thursday), whom I will call Dr. Neurologist #2, ended up in our room to tell us what was going on.

Dr. Neurologist #2 explained that after she reviewed the MRI she believed that Bennett’s Infantile Spasms were indeed just that, and that they were being caused by something called a Cortical Dysplasia. A Whatey Whaten? What the fuck is that? Well, the technical definition is this:

Cortical Dysplasia is a congenital abnormality where the neurons in an area of the brain failed to migrate in the proper formation in utero. Occasionally neurons will develop that are larger than normal in certain areas. This causes the signals sent through the neurons in these areas to misfire, which sends an incorrect signal. It is commonly found near the cerebral cortex and is associated with seizures and may be associated with some level of developmental delay(s). Focal Cortical Dysplasia is the most common cause of intractable epilepsy in children.

Please note that this new DOCTOR never explained it to me that well…she just said it was a lesion, that was her explanation. But that’s neither here nor there. Fine. Call it what you want to. It’s horrifically simplified to call it that, but whatever. You can read more about it on a basic level by looking to your right and clicking the link. But FCD is even MORE dense of a thing to understand than IS, so looking at multiple sites is probably a best bet. But even then be warned, it is not an easy thing to define, understand and, pardon the expression, wrap your brain around.

It's fuzzy, but I do not think I got any answers outright when I asked about whether or not it was fixable, but the Doc was straightforward in one regard. She wanted us to be aware of the magnitude of what Bennett was experiencing and to also make it clear that the NUMBER ONE goal right now was to get the seizures to stop. Period.

Now, Dr. Neuro #2 was curious and wanted to ask us about something…why did we opt to go with Prednisone instead of ACTH? Um…well, we were offered a choice by Dr. Neuro #1 and he did not say that ACTH was the option we SHOULD choose. We chose the less invasive one, we were not told one was better than the other. What the hell do we know? We aren’t the doctors here.

Dr. Neuro #2 ‘suggested’ we think more about it. She did not come out and say CHOOSE THE ACTH INSTEAD, though, and even when asked by one of us ‘What would you do?’, we got no answer. I get it…the medical profession is fucked by the legal profession and that is the way it is and is probably always going to be in this litigious country…but it pisses me off nonetheless.

One of the female interns/residents/young-doctors-in-training hands us some printed articles, with some stats she picked up from (where else?) the Internet. Some stuff was circled, notes written, basically (I presume) trying to draw us a map to ACTH without actually SAYING that this was the path we should be taking. We glanced at the paperwork, and agreed that we should probably switch to the ACTH treatment BUT…we wanted to take Bennett home first.

Everybody was fried, it would take time, several days in fact, to set it all up to actually get the medication and we didn’t want Bennett to be in the hospital for up to a week waiting for that to happen. And to be honest, it isn’t like we were getting any really solid info from the hospital. And not just because they were necessarily dodging any questions, it was mainly because we didn’t even know the right questions to ask.

We needed to get out of there, regroup, and think about stuff. So we ‘officially’ said no to starting the ACTH process that Saturday and wanted to get insurance clearance, make sure it was what we wanted after researching it more effectively. We’d gladly get it started later in the coming week if that was what we decided. Dr. Neuro #2 questioned this strategy a little (of course in a roundabout way, speaking in fragments), although I still do not get this part because Bennett would not GET the ACTH until next week anyway, why keep him in the hospital? But she seemed to question us, and I wasn’t sure if she just thought we were stupid or if she thought we didn’t care about our son…’Are you aware of how serious this is? Are you aware of the sense of urgency you need to have about this?’

Well, yeah, we are, but we need to get some answers and options and that isn’t going to happen in this room today. So we’ll see you in a few days. Bennett’s discharge from the hospital was put into motion, and we left early Saturday evening for home. I’m actually glad we took that stand. Mainly because very few of the side effects of ACTH had even been fully explained to us and we needed to get our heads cleared.

We needed to spend some time alone with our kids and each other and just 'be' for a couple of days. Not sure if that makes any sense at all to anybody who wasn't there, but it makes perfect sense to me.

Thursday, May 21, 2009

Bennett's Story Part 3: Shit? Meet the Fan

<It was suggested to me recently that I try to organize as much of Bennett's story as I can, try to put the last 3 months into some kind of perspective. I am going to post this here now and add to it as there is time. I will link up on the side of the blog main page so that people can access it who want to and I will get it finished as quickly as I can for anyone needing or wanting to see the chronology of Bennett's condition.

Bennett's Story Part 1: Ahead of His Time

Bennett's Story Part 2: The Calm Before

Bennett's Story Part 3: Shit? Meet the Fan

Bennett's Story Part 4: The Truth is IN There

Bennett's Story Part 5: Acthar the Terrible

Bennett's Story Part 6: Road to Nowhere?


On February 24, 2009, Bennett had an appointment with his regular pediatrician, a very charming, very warm Doctor that Jen and I both like a lot. As expected, Bennett did not have any of the ‘body hiccup’ episodes in her office, but we had been fortunate enough to have a few of the episodes on digital video disc. Jen took the mini DVD player and the discs with her to show the doctor.

This should give you some clue as to how non-serious we were still thinking this was…I didn’t even go to the appointment with Jen, stayed home and worked instead of going in. This wasn’t even related to the avoidance issues I described earlier in Bennett’s life, this was practicality of two parents and two different kids, depending on how long the appointment went I might need to pick Carter up from Day Care, so I stayed back and worked while she went to the Doc.

Dr. Pediatrician watches the digital video, and is baffled by it. Had never seen anything like it before in her career. Come to find out, that’s not uncommon, because what Bennett has is not very common at all. To be on the safe side, she schedules an EEG at a nearby Nationwide Children’s Hospital Closer-to-Home Center for as soon as she could get an appointment, which was March 5, over a week away.

Again, at the time, we weren’t all that freaked. We did not know yet what was going on, it wasn’t happening every single day, didn’t seem to be hurting him, and we both went into that EEG thinking they wouldn’t find anything, the whole experience would pass, and that would be the end of it.

On March 5, 2009, as scheduled, Bennett gets his first EEG, and it is not a pleasant experience at all. They hook him up and he cries a lot while they are gluing electrodes on to his head. I cry more than he does though, as it is extremely painful to watch him struggle. BUT...I do not leave the room. I stay. Looks like Daddy might have grown up a little too in the last fifteen months. More on that later.

After the leads are finally on he settles down a little and the EEG begins. During the course of the EEG, in fact very early into it, the EEG technician excuses herself and makes a phone call. Something is up, but no one will tell us what. She calls a Neurologist to look at the EEG information immediately. Just before the EEG was supposed to end, Bennett actually has an episode of his ‘body stutters’, which we were actually HAPPY about (that is very difficult to explain) just so that it could possibly provide more information. Happy for the extra info it might provide, not happy at all that he had to stay plugged in like Neo and Trinity for another 15 minutes or so.

There is a lot of activity, calls made, technician coming and going.

The technician, while removing the leads, clearly knows something but will not tell us what, and tells us that a Neurologist will be calling us in a couple of days to schedule some kind of follow-up appointment.

I was actually VERY cool with that. I mean…if it is gonna be a few days until someone gets back to us then how bad can it REALLY be? But somehow I heard the term Infantile Spasms that day before we left the EEG room. I do not know how, I can’t actually remember who said it, but someone did. Not as an official diagnosis, but somehow the words just got said by someone and I heard the words. And just so you know I wasn’t cracking up, Jennifer, after we left, confirmed hearing it too.

Jen and I took Bennett home and the first thing we did was type in Infantile Spasms on the net in a google search and started visiting websites.

My wife, well…what can I say? She has always been a helluva lot stronger than me, in so many ways. In fact, I often tease her about how rarely she cries or about her reservations about expressing herself. Of course she can then tease me over how I cry over movies and songs and stupid shit. That’s the dynamic of our relationship…I wear my heart on my sleeve, she keeps everything tucked away, very neatly. She has never, and will never, understand why I write this blog. She rarely, if EVER, reads it. It just isn’t her thing.

The truth is, we both are too far extreme in the way we handle emotional things. Reality, the right place to be, is somewhere in the middle, and that is probably why things work for us…these aspects of our personality balance out somehow.

Though I should tell you, that when she does lose that cool exterior, hoo-boy does she pop…but her being the daughter of her Dad and her Mom and how she has both their characteristics is a subject for another blog, one where I will need to be prepared to get my ass handed to me after I hit the ‘PUBLISH’ button, because I know THAT is a blog she would read.

So there we were, at home, Bennett asleep in his crib, looking at websites that give information regarding Infantile Spasms.

Of all of the moments in all of this entire experience, this was THE moment where I saw something break inside my wife. This person who I have always seen as a pillar of strength, of emotional power and reserve, right before my very eyes, came apart in a way I had never seen before. There is only one kind of thing that can cause the kind of pain she was experiencing, and it is a pain that ONLY a parent can even understand and appreciate. But her entire world was rocked that day, as was mine, but for a reason I really cannot explain I held it together.

Maybe because I knew, at least for the next few hours, I would have to assume her role. I would have to be the strong one for awhile. This was her time to let a devastating emotional wave crush her into the surf, and I needed to be there and hold her head and keep her from drowning.

Those were truly frightening minutes, reading those websites, but I kept telling her that we did not know for sure what it was yet, we had to maintain some hope, we have to stay focused, we have to stay strong. I tried to keep her steered in the direction of keeping our emotions in check until we knew exactly what we were dealing with.

Then the phone rings, right in the middle of trying to even research the issue. We has only been home MAYBE thirty minutes, if that.

It is someone representing the Neurologist who reviewed the EEG. They asked us to pack a bag and bring Bennett to the hospital for admission immediately. They wanted to have him there in a room so that some tests could be done. They confirmed the possible diagnosis on the phone. They believed that he had Infantile Spasms and it was something that had to be tackled ASAP.

Devastating diagnosis? Meet the Lilly family. Lilly family? Meet the devastating diagnosis.



Our heads were spinning for a few minutes as the reality of what we just heard sank in. But remember, ‘Infantile Spasms’ was defined, at that moment in time for the two of us, with WAY too little information, and all the information we had been able to absorb in 30 minutes was all bad. There simply had been no time to read anything but the clinical stuff, the stuff that offers oodles of stats and funky clinical terms, but VERY little hope. If any at all.

If you want to read some of that clinical stuff, look to the right of this page. There are two links that I have permanently affixed there. One is a short answer, the other is quite lengthy. They are harsh. They are factual. But it's a good exercise to see an overview of the condition, before you would start your own search if that was what you fancied. But remember this...the best source of info is actual people. People like me or people like those in many of the blogs I follow, also listed at right down the page as you scroll.

We didn't have time for that of course, we had time maybe read part of the long IS answer that I linked to, maybe a few other bleak things before that call came in.

Somehow, and I really, honestly, cannot remember how, we packed a bag and I managed to drive us to the hospital downtown. Parking was surprisingly easy, admission went very fast, and a couple of hours later, there we sat, in a hospital room, in a state of shock, with Bennett, wondering what the hell was going to happen next.

Wednesday, May 20, 2009

Bennett's Story Part 2: The Calm Before

It was suggested to me recently that I try to organize as much of Bennett's story as I can, try to put the last 3 months into some kind of perspective. I am going to post this here now and add to it as there is time. I will link up on the side of the blog main page so that people can access it who want to and I will get it finished as quickly as I can for anyone needing or wanting to see the chronology of Bennett's condition.

Bennett's Story Part 1: Ahead of His Time

Bennett's Story Part 2: The Calm Before

Bennett's Story Part 3: Shit? Meet the Fan

Bennett's Story Part 4: The Truth is IN There

Bennett's Story Part 5: Acthar the Terrible

Bennett's Story Part 6: Road to Nowhere?


From the time we got Bennett out of the NICU and home from the hospital until a few months ago, we were golden. From December 2007 through February 2009 his development was just what we sort of expected and hoped that it would be. We knew he was technically around a month ‘behind’, so we have always factored that in, but he caught up for the most part and grew quickly. He was meeting all the milestones that his pediatrician expected, was in the percentiles he was supposed to be in and was doing what infants do.

He was learning to crawl, then walk, learning to pick up food and feed himself, lift himself up, laugh, smile, and anything else you expect from a child while they grow. No real injuries that we can recall, couple of falls but nothing major that required anything more than observing him since he wasn’t seriously hurt.

Heck, Carter had taken more than his fair share of spills and fell down a VERY long flight of stairs once and fell out of the bed a few times with no issues at all.

There is one very important thing to note however…over the winter and into the holidays, I had made some comments to Jen regarding my opinion that something with Bennett seemed a little…off. Nothing major, just some observations of some behavior that I couldn’t quite walking in a circle, not maintaining eye contact with me much, a lack of interest in TV or toys, and the fact that he seemed to be learning sounds or words more slowly than Carter did.

I didn’t take it THAT seriously; neither did Jen, as some kids do develop at different speeds and have different personalities and interests. Hell I have known of kids who didn’t utter a word at all until they were OVER TWO YEARS OLD. But it did come up in a few conversations, so it is worth making a note of.

But don’t misunderstand that part…Bennett WAS saying words, he was understanding things like his name and responding to it. He was saying ‘No-No’, ‘Baba’ and stuff. He could say words like ‘Dadda’ and ‘Mamma’ though we were not entirely sure if he knew that those were our designations, but hell, he repeated them.

Hell, look at all the photos I am peppering in throughout this writing...he totally was engaged with me while taking them or with whomever he was interacting with in the candid photo, he was responsive, smiling, laughing...super cute, super adorable and he was smart. He would attempt to repeat some things you said, you could see him trying to figure it all out in his head as you presented him with something new. And even though he was less engaged in toys as Carter was, he still played with them.

He just played with them a little differently. And he absolutely engaged with his older brother as much as his easily-annoyed-by-littler-kids older brother would allow.

He was, in pretty much every way imaginable, a happy and joyful well-developing boy.

On February 11, 2009 Bennett had an appointment with his pediatrician for his DTaP immunizations, which he received with very little fuss. He always had shown a massively high pain tolerance, uncanny really. Up to that point he had received every immunization to date that most kids get, with no complications or issues other than a fever, at the appropriate ages they were scheduled to get them.

The following evening, on Thursday, February 12, 2009, Jennifer went to the church for aerobics. I stayed home to watch Carter and Bennett. Bennett was running a slight fever from the DTaP shots he got the day before, but nothing super serious, and I was playing with him on the floor while Carter watched TV.

Everything was exactly how it usually was. I was on the floor, Bennett was doing his thing, and Carter was doing his, and we all just played and laughed and sat together doing what Dads do with their young sons.

Out of the corner of my eye, I noticed a very odd behavior from Bennett, a subtle thing really, a sort of herky-jerky motion in his head and arms, very slight, what I called a ‘body hiccup’. Then he stopped. He walked around a little, made some sounds, then did it again. Then walked around. Then again. The entire experience didn't last very long, and I managed to shoot a little video of it since I always kept the camera at the ready on our charging island. I didn't get a lot on the disc, just a couple of the 'hiccups'.

I explained it to Jennifer when she came home but he wasn’t doing it anymore and had not been doing it for long. In fact at the time I even said that it looked like he had the 'shivers' because of his fever. She saw it a few days later, and it was puzzling to her too, because as quickly as it started up he stopped. Then nothing for a few more days, but then we both started seeing it happening more frequently, and we were both becoming baffled. And concerned. But not worried. Not yet.


Because the damnedest thing is that we were looking shit up on the net like ‘body hiccups’, ‘body stutters’, 'child shivers' and other stuff and didn’t find anything that even once frightened us. Never once when we were describing it to friends or family did we use the word ‘spasm’. And I certainly don't categorize a 15-month old child as an 'infant', so the word 'infantile' was missing from any searching I had conducted.

Hell, even the very first time I even mentioned it in a blog, the VERY first one ever about Bennett and what was to come, I mention in a roundabout way that maybe he was having a seizure or something LIKE that but I had only the DAY before even connected the dots to think to USE the word seizure.

And still, when I wrote that first entry, I had no fucking clue at all what Infantile Spasms actually were.

We would learn very, very soon.

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...