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Showing posts from May, 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…

Artists Alley: Dustin Nguyen

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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 st…

You Can't Handle The Tooth!

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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'…

A Shitty Entree with a Side Serving of Hope

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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...

So...how did he do today?

He actually had a light day, only two clusters of LESS THAN TEN seizures each. Hmmm...at 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.

HOLY SHIT.

I am just wiped emotionally right now. We have an appo…

Where To Put That Limbo Stick

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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.

Why?

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



Again.

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 …

When it Rains...

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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? Yup...you 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 …

Bennett's Story Part 6: Road to Nowhere?

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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?

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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…

Bennett's Story Part 5: Acthar the Terrible

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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?

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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 Infantil…

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

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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?

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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 …

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

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<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?

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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 fo…

Bennett's Story Part 2: The Calm Before

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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?

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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 techn…