The Electronic Pornographer

My God...

Sun, 01 Nov 2009 03:52:34 GMT

...I'm actually gonna finish "ASCII Cupcake" this weekend. This is so crazy. I actually kinda thought it might never get finished.

Heck, it might even be available for purchase before Xmas, though we'll have to see how fast mastering goes. Not to mention posting to iTunes etc. That crap can be really slow.

-m

You're gonna hate my upcoming EP.

Thu, 20 Aug 2009 01:11:13 GMT

I played one of my new Cosmicity songs ("Resignation") for a few friends yesterday and it solicited... no reaction. They literally changed the subject when the song ended. I've got a pretty bad feeling about the reception of this EP when it comes out.

Ah well... too bad, public! I'm putting it out anyway! ;-)

-m

Reminder: DM Remix

Thu, 23 Jul 2009 16:53:37 GMT

Just a note that, for a limited time, I'm giving away my Depeche Mode Remix ("Peace - Cosmicity Remix") for free. If you're tech savvy, you can download it from here: http://www.cosmicity.com/cosmicity/Music.html .

If you're not tech savvy, drop me an e-mail and I'll be happy to send it to ya directly. info@cosmicity.com

-m

Happy Birthday, Zoe.

Mon, 29 Jun 2009 00:44:46 GMT

Depeche Mode "Peace (Cosmicity Remix)" - PLEASE VOTE!

Wed, 27 May 2009 17:12:41 GMT

Okay, voting has started in the Depeche Mode remix contest. I could really use your help!

You can hear the Cosmicity remix here:

http://www.beatportal.com/remix/detail/peace-cosmicity-remix/

IF YOU LIKE IT, YOU HAVE TO "SPIN" IT TO VOTE FOR IT . That's what counts as a vote. To be able to "spin" it, rather annoyingly, you have to sign up for a beatport account. I know it's a pain, but I'll very much appreciate your vote! (If you have any trouble signing up for an account, this link will take you to the main page to do it: http://www.beatportal.com/remix/contest/depeche-mode-remix-contest/ )

Thanks again. I really appreciate your continued enthusiasm! And, should I lose the contest (as I suspect I might with SO many entries by pro remixers), your vote will definitely coax me into sending you a free MP3 of the track. (If by some miracle I won the contest, I wouldn't be able to send it to you because Depeche Mode would own it, but then you could buy it!)

-mark

Depeche Mode "Peace (Cosmicity Remix)"

Thu, 21 May 2009 22:29:52 GMT

Yes, I too have fallen victim to the silly Depeche Mode remix contest.

I do realize that it is very unlikely that I'll be able win due to the massive amount of talent entering (well-known DJs and artists) with tons more remixing prowess and recording tech behind them (not to mention the contest is sponsored by Beatport which is all about obscure variations of house music and DJ culture stuff - a million miles from my world), but the lure of doing a DM remix is just too great for a lifelong fan to ignore, I think.

Please note that you can't vote for it just yet, only listen. Voting starts next week. If you like what you hear, I ask that you please take the time to go back and vote next week when I post the new link. It'd make me feel good to have more than 0 votes, and I'd really appreciate it! :-)

http://www.beatportal.com/remix/detail/peace-cosmicity-remix/

-m

Cosmicity - soundtrack of choice for odd YouTube videos?

Wed, 20 May 2009 04:10:09 GMT

This is kinda interesting. Here's a few random Youtube videos that I've found that feature music I've written, that I totally didn't post...

http://www.youtube.com/watch?v=pAXMhwE9NQY
Our Turd Ferguson classic "Alan Cumming" set to pictures of the man himself. (4800 views. Nice.)

http://www.youtube.com/watch?v=HEOO_fG51iU
An anime set to "M (Alter Ego Remix)".

http://www.youtube.com/watch?v=q6tzV8IKxwg
Clips of Dr. Who doing his regeneration thing to the song "Regenerate". (2500 views?!)

http://www.youtube.com/watch?v=0ZelA4OXHhk
Clips of an anime that features a car driving around set to "Coming Clean". (1600 views!)

http://www.youtube.com/watch?v=L7pIapdocZo
Someone posted "Awake" with an old picture of me static, but it still has 1000 views in 4 months?!

http://www.youtube.com/watch?v=QqDeH2snRq0
Some grad school folks making some kind of video set to "This Is Your Crappy Christmas Present".

http://www.youtube.com/watch?v=qwE7S0DwjVE
"Alone (Ich Liebe Deutschland Mix)" with just a static compilation album cover picture.

http://www.youtube.com/watch?v=MLcTbSXuXdw
This might be the weirdest choice... my 1994 song "The Vision" (easily one of my worst very early songs) set to static shots of 3D character models.

Cosmicity Website - It's all new.

Wed, 13 May 2009 04:46:21 GMT

I've rebuilt the ol' Cosmicity website to make it cleaner and easier to navigate. Okay, truth is, I don't have the time I used to have for website building/updating (plus, everyone just looks for a band's myspace page first anyway), so I moved all of Cosmicity's info over to iWeb. I know, I know. Designers fart on iWeb. But you know, it's convenient and it makes clean websites!

Anyway, if you feel like any important content is missing, I'd love to hear your suggestions.

http://www.cosmicity.com

-m

PS - I'll make it more customized with the release of "ASCII Cupcake" later this year, I promise. Right now, I'm a little short on fresh Cosmicity images.

PPS - There's a short demo version of a potential "ASCII Cupcake" song that plays from the homepage.

Proxy

Sun, 05 Apr 2009 21:05:50 GMT

I recorded the vocals to one of my new songs, called "Proxy", today while Sara and Zoe were out for a while. When I was all done and I was listening to playback, I burst into tears and I couldn't stop crying.

Whether anyone else in the world ultimately likes this song or not, it says exactly what I feel. All of these songs do. When completed, "ASCII Cupcake" will be, far and away, the most cathartic collection of songs I've ever written.

If I didn't have music to turn to as an outlet, I'd have self-destructed months ago.

-m

I'm huge in Uruguay (no, really!)

Tue, 24 Mar 2009 18:12:18 GMT

This is taken from a message I just received on myspace from a DJ who spins there:

"Every friday and saturday people get crazy with "Perverse" here at Alexander Disco Pub..
I'm so glad to tell you that people come to us to ask what is that wonderful song we sing non stop.
I will record it and post it here for everyone to see the success of Mark Nicholas in Uruguay.
Keep it uP!"

Just when I'd started believing that album didn't really get too far...

-m

ASCII Cupcake

Mon, 09 Mar 2009 19:52:01 GMT

1. In general, how many original (new) songs need to be on an EP? (Just asking 'cause, you know, I'm working on an EP (working title is the subject line), and I want to meet with expectations and all. I've got 4 solid new songs, and couple of "danglers" I'm not sure about... but I'm all about quality over quantity. Or, perhaps more to the point given my personal situation right now, finish-sometime-this-decadeability.)

2. Do you want to hear early demo stage samples as I work, or would rather wait 'til they're much more polished?

3. Does the working title frighten you away with its oddness, or is it okay to make it an inside joke as long as it uses cool words like "ASCII" and "cupcake"?

-m

PS - We expect to be going in for more tests on Zoe this Wednesday. I've decided to avoid posting about that stuff here on LJ (to keep this blog a little bit more music focused), so for extremely current news about Zoe as it happens, please add me as a friend on Facebook or Twitter. Don't worry - I'll add you even if I don't know you well, as long as you actually want to read about my daughter. I'm just trying to spare casual Cosmicity fans my day-to-day reports.

Reposted from Facebook: 15 Random Things About Me

Wed, 25 Feb 2009 20:50:51 GMT

I'm breaking down and posting this MEME, hoping it'll distract me from a bad day. I'm going to skip some things everyone knows about me (ex: I love fast food) for things you might not, in the hope of making it a bit more readable.

1. I was almost a writer instead of a musician. While I'm extremely proud of the music I've written and recorded, and I think that's definitely where my greatest god-given strength is, I probably SHOULD have become a writer for the sake of my overall well-being. I'd have a more useful college degree (BA instead of a BM!), more potential for a career that pays, and more opportunities for success in general. My parents both warned me about getting a degree in music, but I wouldn't listen. Stupid teenagers.

2. When I think about what I will do if/when I get laid off in this bad economy (I live in Detroit and work for an advertising agency tied exclusively to Chrysler), my immediate thought is that I'm fairly screwed for employment. My job type (Broadcast Producer) is very specific, and there just aren't jobs to replace the one I have. So, I'd probably become a stay-at-home dad and try and pick up some kind of managerial retail job at night. Not sure we could survive like that, but if it happens, I guess we'll find out.

3. If I had the time, credentials, and consequence-free environment to try any other career, I've often considered high school teacher, politician (fine idea 'til the person running against me for office distributes the lyrics to my last album), and most often, small business owner. I have several retail store ideas, my favorite of which is a store that sells nothing but rare/imported junk food/candy/soda. The ultimate unique party store. (Example: We'd stock 7-Up cola from Poland, Apple Juice Soda from Mexico, all the European Cadbury candy bars, Canada's Poutine or Ketchup flavored potato chips, etc.)

4. For as long as I can remember, I've always wanted to grow up and have two daughters. Though she's been struggling with health problems since birth, I'm already blessed with one daughter, Zoe (almost 8 months old now). My wife, Sara, has never really been into the idea of a 2nd child. And really, I don't blame her at this point. Her pregnancy was constantly painful and awful in general, and with all that's happened with Zoe's health since her birth, having another child is almost incomprehensible right now (emotionally and financially). Still, I can't help thinking about having another someday. Maybe things will look different to both of us in a few years.

5. Unbeknownst to anyone but a couple of the people that are closest to me, I suffer from two medical conditions that cause me constant pain and distress. These are conditions beyond the regular conditions that most of my friends already know about (like allergies and asthma). They are both publicly unacceptable to discuss (no, I don't have AIDS or anything - I'm not dying), so I don't discuss them, but they are a source of much additional stress in my life. (And also, no, they are absolutely not related to Zoe's problems in any way. We've checked, checked, and checked again. No connection.)

6. I think the thing I miss most about our lives before Zoe got sick is the ease with which we used to laugh. Don't get me wrong, I wouldn't trade Zoe for anything, but I do wish Sara and I could find a way to get back into our old mental state. We used to generate pop culture references and ideas for new movies (remember Vampires vs Zombies, Sara?) constantly, and generally just kept ourselves laughing through life with relative ease. We still do that, once in a great while, but it's rare, and now perhaps it's even burdened by guilt... the notion that somehow, if you're thinking about Vampires vs. Zombies, your attention is not focused where it should be and you're a bad person. Even though we both know it's not as cut-and-dry as all that, and we know people need to find a way to laugh even in the worst situations, it's still hard to convince yourself deep down.

7. I tell people that I don't wear contact lenses because I can't stick my fingers in my eyes (it was tough for me) or because of my allergies (it was a concern), but the real reason is that my glasses have become a life-long safety blanket, a social shield, and I don't know who I am without them. Hell, now that I think about it, I bet you don't know who I am without them either! ;-)

8. I regret using my real name for my last two albums (Duchess 33 and Perversions). I don't regret the albums - I'm quite proud of them, actually - just that I used my real name. I think it would have worked out better if I'd come up with yet another Pseudonym to publish those under. As it stands now, the music I'm currently composing fits better with the Cosmicity sound, so I'll be going back to that here in 2009. But does that mean it's any less me... less "Mark Nicholas"? Not at all... if anything, it's more me than ever, with ridiculously personal lyrics. So, I guess I kinda just wish I had put those 2 albums out under a name like Yticimsoc. (Only KMFDM fans will really get that joke.)

9. If I ever do take the time to try writing, as I've been threatening to do for over a decade, the biggest challenge I will face will be which script idea to attempt first. I have tons. I'll probably go for a relationship movie first, though, since that's always been my lyrical bread and butter and I've got a lot of comfort with that. Plus, I think writing believable, conversational dialogue is my strength. Well, I mean, I'd HAVE to write the Vampires vs. Zombies movie with Sara first, THEN a romcom.

10. I absolutely love romcoms. When it comes to movies, I'm somewhere between a basement-dwelling, dorito-chomping sci-fi geek and a teenage girl. I seriously LOVE cheesy romcoms. You name it, I've watched it. And Sara hates them. Passionately. She groaned through every second of Music and Lyrics, and I gobbled it up. (Watched it again recently.) Yes, I know these are generally not top-notch films, and I certainly wouldn't model any screenplay I'd attempt to write after one of these movies, but they make me feel happy, and that's hard to beat, right? (I WOULD, however, model my screenplay after a relationship movie like Before Sunrise. No shame there.)

11. Socially, the best time in my life was high school. Most people will tell you that college was the best, but for me it was high school, without question. When I was in high school, I had the time to really nurture friendships and generate social activities. And when you invest a lot of time in friends, it pays off. I had lots of great friends that offered seemingly endless support... and I had SO MUCH fun. That might be due in part to the fact that I was often in charge of creating our social outings, so I could customize them to my liking, but I think even more than that was the level of closeness I felt with my friends then. I'd be hard-pressed to point to any friends in my life now that I'm close to the way I was with them. Sara (my wife) is the only one I truly talk with that freely now. (There are a couple of others in my life that I still open up to, but again, not at the same depth that I used to.) I deeply regret that. I regret losing closeness with those friends very much, yes, but also the friends I've made since. I had a few great friends in college, and though they're on my Facebook friends list now , they're not friends like they were. I regret that. I've had a couple more since college that I've let slip away. I regret that too. Someday soon, I hope to have the time to start turning that around. I've lost my social skills, but with practice, I think I could find them again. I know it'd be worth it. I remember what it was like.

12. Even though I had my dog Schmee for 12 years - since she was just a tiny puppy, Sara (who's only known Schmee for maybe 7 years) has expressed far more sadness at her loss than I have. Don't get me wrong: I miss her very much. She was the best. I cried uncontrollably after she passed and the whole car ride home. But since then I've been able to compartmentalize it, I guess, so I've been doing pretty okay. Sara, on the other hand, cries every time Schmee is missing from an activity she used to enjoy (like dropped crumbs in the kitchen or jumping into bed at night.) I guess I just have that guy ability to turn it off when I need to. That kinda makes me sad. Still, I think this also speaks volumes about Sara that people probably don't know... just how incredibly sensitive she is underneath the shield she wears day-to-day. She really really is.

13. I hate getting my hair cut, but I love having freshly cut hair. It's really the process I hate... I don't like having someone touching me like that for whatever reason. I feel the same way about massage. I would never go for a massage. It would not be relaxing for me at all. Not one bit. BUT! If I know someone, I feel kinda the opposite. I'm certainly fine with massages from Sara and stuff. And I actually wish there was more physical contact with friends and co-workers (not dirty - get your minds out of the gutters). I think I'm actually a person who likes to hug but doesn't have the guts to start that ritual up. But yeah, I wish I was more of a hug person with my friends and stuff.

14. Though I am known for loving junk food and fast food (I REALLLY do love that stuff), when I was single, my favorite meals were generally far healthier. I used to sometimes eat pistachios, peas and rice for dinner, and many variations on that theme. Carrots and peanut butter... all kinds of odd but healthy things that don't actually sound like a meal. I really love to snack, and I had essentially figured out a way to snack until I was full while still getting a decent balance of food. Far more balanced than I eat now, actually. Gotta figure out a way to turn that thinking into proper meals for my family so we can get back on track somehow.

15. The most important thing I've accomplished with my life so far is probably writing the song "Crucify". I didn't really realize it until somewhat recently, but this song was pivotal. It is the song that led me to my wife. She heard it, then became a fan of my music, played some of it in her club, which eventually led me to her when I saw my music on one of her playlists and then brought her a new single I was working on. It is also the only song I've ever written that has directly changed someone else's life. I had a guy write me years ago to tell me that he and his wife had their first kiss listening to this song, and eventually it was played for the first dance at their wedding. It was the first song I ever published on a real record label. It was the song that established the musical direction that I've been on for the rest of my life. Everything I wrote before then I kinda consider part of a learning curve. But "Crucify" marked my arrival as a skilled songwriter. And finally, it is the song that has best stood the test of time. I've recently been posting all of the "fan favorite" Cosmicity songs on the competitive website thesixtyone.com . (Basically, listeners vote for the songs they like.) "Crucify" has been far-and-away the favorite Cosmicity song, receiving tons more votes than anything else I've ever posted, even though it is now 12 years old and up against many other songs of mine, some recorded as recently as 2 years ago.

That's it. If you actually read all of this, well, thanks for caring enough to plow through it all. I appreciate it. :-)

Cosmicity

Wed, 21 Jan 2009 03:03:27 GMT

In the cracks, I am still working on the music. Progress is slowly being made. I like the sound so far, but I fear it may be lyrically the saddest music I've ever produced. Can't be helped. Gotta write what you feel.

Good thing nobody listens to lyrics. I'm sure when it comes out I'll get lots of "I love to bounce around to that song" even though the lyrics are about giving up on life or some shit like that.

Also of note: The new Cosmicity album may not be called "Music for Headphones" anymore. I've made such a turn with the content that it doesn't seem to apply. My current working title for the EP (yes, an EP as opposed to a full length) is "ASCII Cupcake".

I actually have 3 up-and-running demo songs, so the next month or two might bring an audio sneak preview. Assuming I keep finding time to get little bits of work done, that is.

-m

PS - There's a little glimmer of hope with Zoe this week. I'll write more about it next week if it holds true until then.

Zoe - A bad day. Diagnosis doubts. What the future holds.

Fri, 09 Jan 2009 03:24:27 GMT

Things with Zoe are not well. Her episodes look worse and she is now very clearly behind on her development (missing milestones), and that's been confirmed by our Pediatrician a couple of weeks ago and our U of M Neurologist today. What seemed like a clear Sandifer's diagnosis just over a month ago is now in serious doubt, so the remaining doctors are trying to figure things out the hard way now: She'll be going in for Fundoplication surgery soon in an attempt to stop her reflux, and then see if that stops her episodes and gets her overall development back on track. It's really our only remaining play, as we've done literally everything else you can do (from scans and tests for epilepsy to medicines and treatments for reflux - nothing resulting in anything concrete to help her or diagnose her.)

If the surgery fails (which it might - it only has a 60% success rate, depending on what article you read - plus they have no idea if the reflux is truly the 'cause of all of her other problems) then we're back at square one trying to think of something else.   I wish I had better news to share with people when they ask about this because we have so much support and optimism always pouring in, but it's just bad right now. She's in pain all the time and she's 6 months old with the skill set of a 2 month old. That's just the way it is. Still, I really appreciate everyone's inquiries and support.

There's more to the story, but the details go on for years so I won't get into all of them. In short, we'll also be getting her a hearing test soon, and revisiting the eye doctor in Feb., among other things. With as bad as things are with Zoe, it's really tough to tell what's working right and what's not, so you've just gotta keep ruling things out, just to make sure.

We'll also be contacting Early On so we can get some help moving her development along as best we can. On Zoe's bad days she's all episodes and sleep, so there's not much we can do on those, but on good (episode-free) days she seems to have the strength to try, so we'll just have to make the most of that time so that she can hopefully start accomplishing a few of these milestones (like sitting up, rolling over, grabbing objects, etc.)

The Neuro doctor today also spent a lot more time than we would have liked talking about Infantile Spasms. That is definitely what her episodes look like on the surface, no question about it (and that diagnosis would explain her lack of milestone development), plus we had fresh video to show him which illustrates that her episodes look even more severe now than even a month ago. But obviously all of the other doctors we've ever seen (including two other Neurologists) and hospitals have thought of this before, and it was ruled out after 3 - yes 3 - normal EEGs including a 24 hour video EEG (as well as numerous other brain scans). Still, this Neurologist says that if we have no luck with her reflux surgery (which he definitely wants us to do first, ASAP), that we'll have no choice but to have yet another EEG and check for it again. We'll cross that bridge if we have to come to it, but we definitely don't want to. Infantile Spasms are a life sentence - they're not like other forms of epilepsy that can be treated with medication and fade with age. If Infantile Spasms were the diagnosis, she would never be normal (mentally retarded, at the very least).

-m

Lil' freebee bootleg remix

Mon, 22 Dec 2008 04:49:23 GMT

As most of you know, Sara (DJ Ginger Snapp) and I like to occasionally make quick little bootleg remixes of tracks that, well, lack a beat! Our latest is for Love Lockdown by Kanye West. Why? Because it needed a beat! If you want it, you can grab it here:

Follow this link: http://www.thesixtyone.com/#/SM/

Or if that doesn't work, you can go to that site and search for S+M, you'll find our remix.

-m

PS - This was custom made for Sara's set on IPMRadio.com Saturday night. It was awesome. As soon as she puts it up for download, I'll post a link to that too.

Horrible

Fri, 12 Dec 2008 13:12:28 GMT

Here's perhaps the worst reality I've ever had to face:

With the 14B big 3 automaker loans dead, our entire livelihood now depends on President Bush. Without his help in the next week or so, Sara and I (and all of Detroit, to be sure) are going down and there will be literally no hope for us.

-m

My Christmas List

Tue, 09 Dec 2008 21:00:37 GMT

Dear Santa:

All I want for Christmas, this year and for every year hereafter, is for my baby girl to be healthy and free of pain.

Very sincerely,

-mark

Happy Holidays - Free Cosmicity Holiday Song!

Wed, 03 Dec 2008 17:16:39 GMT

Happy holidays everyone. Enjoy this free MP3 download of my latest Cosmicity holiday effort. :-)

http://www.cosmicity.com/holiday.html

-mark

PS - Some of you may recognize this is a revamped version of the song I did as Mark Nicholas last year, but I think it's so much improved that it counts as a new track. Plus, it wasn't a free download last year, so nobody owned it anyway!

Completely avoiding what's actually on my mind.

Mon, 24 Nov 2008 02:41:37 GMT

It just occurred to me that demographically I'm exactly in the middle between Nick and Norah's Infinite Playlist and Nights in Rodanthe. Which means what? "Knocked Up" or "Baby Mama"? Yeah, I paid the ticket price and watched those films because Hollywood said they were for me, but they really weren't. I'm not sure anyone's making movies for me. They're mostly for the young, and that's a little bit depressing. So, I sneak into the theater and watch the "Nick and Norah's" Hollywood has on offer and very quietly love them.

My heart doesn't know it's 35, except perhaps when I eat at White Castle.

-m

Read my little article.

Thu, 20 Nov 2008 03:12:19 GMT

I wrote a short article for passivepromotion.com on the advantages of having a presence on YouTube (meant to help out indie musicians). Musicians or wannabe musicians will probably find it a little more interesting, but heck, read it even if you're not! :-) (No, it's not a funny article like the ones I used to write for synthpop.net. Sorry. At least it's got links to homespun videos, and those are always fun right?)

I'm planning on writing a few more of these articles in the coming weeks. I've always enjoyed writing, as most of you know, so why not share a little of what I've learned over the years so other musicians might benefit?

-m

Cosmicity

Wed, 19 Nov 2008 05:58:04 GMT

The music lives, even through the worst of times.

I think I'm changing the format, though. "Music For Headphones" needs to wait until I'm in a different state of mind.

This state of mind calls for an EP. Don't know the title yet. Cosmicity classic sound. Cosmicity purists will be thrilled (though there are decidedly no "dance" songs here. Sorry die-hard "Too Far Gone" and "Digital Delays" fans. This one's for the other folks.) I've got 5 of 6 total songs already underway.

-m

PS - On a completely unrelated but very important note to any of you involved in politics (kind of person who takes time to e-mail congressman when you see something's not right): If you don't think the entire US economy will seriously collapse along with Detroit, you are kidding yourselves. 4% of the Gross National Product? 2.5 million jobs all lost at the exact same time? We will all fall. Hard. Pray the government comes to their senses and loans the automakers the money or it's gonna get seriously fucked up in this country in 2009.

I can't even believe they're considering NOT doing it. Be mad at the automakers for whatever you think they did wrong (making gas hogs, giving in to union demands, whatever you might think). Fact is, they probably didn't do much of that stuff wrong (people were buying more SUVs than cars until January of THIS year - it's called supply and demand), but it doesn't even matter. The tax revenue the Big 3 generate in 1 year is more than double the total amount of the loan they're all asking for combined. So, if the government doesn't give it, the government loses TWICE as much as the loan value in just 1 year. (Oh yeah, and the pension guarantee system overloads and blows up in the first year too, which is a ton of money.)

Not to mention that cars are the very last bit of serious American manufacturing left - at all. Look around at your stuff. Your computer, your phone, your TV, your baby toys, your lamp... Was ANY of it made in the USA? Extremely unlikely. Think we can really survive long-term without actually MAKING anything? Sure, we make entertainment (TV/FIlm), software and food, but no actual physical STUFF.

What would happen if we were ever, I dunno, at war (or even just at odds) with China? (You can make this scenario worse by throwing in Korea and India, etc. if you like.) How would we get or make ANY of the things we need and use everyday? Beyond that, how would we get, say, vehicles for the army to fight and get around in? Hummers? Jeeps? Nope. (Even weapons or whatever else you need in a major war. Those factories are what got converted for WWII when we really needed stuff fast.) If the Big 3 fall, we'll have no serious US manufacturing capacity left.

Zoe - FINALLY a diagnosis! Please watch videos.

Tue, 11 Nov 2008 20:46:09 GMT

Hooooooray for the University of Michigan hospital. In about 15 minutes this morning, the doctors at U of M were able to do what none of the other doctors or hospitals have been able to: diagnose Zoe with SANDIFER'S SYNDROME.

Why are we SO happy? Because Zoe is Neurologically perfect. Exactly where she should be. After months of being told she has epilepsy and she's missing developmental milestones and her eyesight is bad (the list goes on), we finally know she's mentally just fine.

Sandifer's Syndrome is a somewhat rare syndrome linked to GERD/Acid Reflux. Zoe was formally diagnosed with reflux via an Upper GI X-Ray on Friday, so this completely makes sense. Basically, infants with this syndrome unconsciously try to fight the pain from the reflux and the physical reaction often looks like seizures. In Zoe's case, she has the most seizure-like reaction any doctor has ever seen. She's in a league of her own.

The treatment is the same as any Acid Reflux baby would get. Keeping her upright. Using Prevacid (medicine) to cut down on the acid. Stuff like that.

OKAY. Now, I felt like it was important to show everyone what's been happening so people don't think "you had us all THIS worried over Acid Reflux?" So, I'm posting a few videos to show you what we've been seeing, and why Zoe's has been through a CAT scan, MRI, two PET scans, 3 EEGs, a sleep study, 2 anti-seizure medicines and countless hospital stays.

These are portions of episodes recorded the first day we checked Zoe into a hospital where she was misdiagnosed as an epileptic:

These are some recent odd symptoms that helped us convince the doctors (even the ones at U of M) that what they are seeing wasn't necessarily seizures. (In the first part, she's having an episode where she cuts in and out of her usual trance like state, something you couldn't do if you were having a seizure. In the second half, you're seeing an "aftershock" - twitches Zoe sometimes has post-episode that wake her from sleep every 15 seconds):

This is what a current episode from this week looks like. We still see them pretty much everyday. She's not cured. But at least we now finally know that her brain is fine and these aren't hurting her (beyond the pain of reflux, which we're working on.)

And finally, because all of this can be a bit much, and many of you have been worried right along with us for a very long time (THANK YOU AGAIN SO MUCH FOR ALL OF YOUR SUPPORT THROUGH ALL OF THIS) here is a very short video of Zoe just being, well... Zoe. :-)

Okay, gotta go play with my kid now. It's amazing to be able to think about her and not worry about her limitations anymore. She's just a normal kid with really bad reflux. Woo hoo!!!

-m

Zoe Status

Wed, 29 Oct 2008 16:19:33 GMT

After that horrible day on Sunday where Zoe was basically all episodes and misery, Monday was an absolutely perfect day with no episodes and an extremely happy, well-adjusted baby. Then yesterday, Zoe slept like she was in a coma through the entire day. She was awake for a couple of hours tops, basically just by totalling up feedings and changings. Still, no episodes yesterday either. Every day is an extreme surprise with her, it really is.

Then this morning Zoe and I went to the Gastro doctor. Seemed like a decent day... she was acting somewhat happy in the AM. But then about 10 minutes after the doctor came in and started talking with us, she had a huge episode. Very scary, very long. The only good thing that can be said about this is that it was right in front of this new doctor, so there was no need to convince him of what was going on. He saw it better and clearer (from start to finish) than any doctor ever has.

Of course, that doesn't mean he knows what it is. After seeing it, he was surprised our Neurologists were walking away because he thought - despite extensive tests proving these aren't seizures - that it still looked like something more was going on neurologically speaking. He's seen babies have big reactions to acid reflux and such, but Zoe is on her own level as far as that goes, that's for damn sure. But he also thinks it is possible that severe reflux + severe allergies could create a sort of shock state like this. He thinks that's within the realm of possibility. And he thinks we absolutely have to try to treat those things to see if they solve the problem. So we are.

Which means that, as of today, we're switching to some ridiculously expensive uber hypo-allergenic formula called Neocate. It has absolutely no milk or traces of milk proteins in it. And we're putting Zoe on Prevacid to control acid reflux. Between those two things, we should see a difference inside of a week if this is indeed the whole problem. Of course, we're also waiting on some preliminary allergy tests they're doing from a blood sample taken at our pediatrician's office on Monday, so there may be even more allergy info in there that causes us to make further adjustments. (See: keeping our dogs or not keeping our dogs, etc.)

I like this new doctor - he's at least motivated. And he seems unlikely to give up on Zoe until he's exhausted all of the options in his field. I'm pretty sure he's going to call and harass our (former?) Neurologist and push for more possibilities too. Not like I didn't try with everything I had to get more information out of that guy, but maybe being humiliated by another doctor for giving up will do something to better motivate him.

-m

EDIT: PS - This doctor is NOT an eye doctor, but during his preliminary examination, he was able to get Zoe to track with her eyes where wanted her to using a special technique hand waving / snapping technique. This is something our regular Pediatrician has never been successful at, and I mention it because it's been a huge concern for us (and our Pediatrician) that something more (worse) than allergies/reflux is going on here. It was reassuring - if far from conclusive - that this doctor thought her eyes were functioning normally and that she appeared to be meeting that vision milestone.

EDIT EDIT: We got test results back. Blood test shows hasn't had a major infection of any kind (meaning no encephalitis, which is excellent), and allergy tests show that she's negative for basic allergies (mold, dust, dogs, eggs... the common stuff), which is actually a big surprise. But this blood test for allergies was also far from conclusive. Zoe's too young for the test, for starters (we just did it anyway), and it's not as effective as other allergy tests. Still, I guess it probably means she's not crazy allergic to everything like I was. Doesn't give us any real answers though. :-/ God, this reflux treatment just has to work

Zoe update update

Fri, 24 Oct 2008 02:07:33 GMT

Saw our pediatrician today. Here's a list of doctors we will now be going to see, in order:

Gastroenterologist - Acid reflux check (recommended by sleep study doc.)
ENT - Throat check. (recommended by sleep study doc.)
Ophthalmologist - Check her eyesight. (The only 4-month milestone the doctor thinks she's not meeting yet is the ability to track objects with her eyes.)
Pediatric Neurogeneticist - Looking for genetic brain diseases and such.

And we also - and this is my favorite - need to find an infectious disease doctor. Why? Oh, just in case every single doctor at all 3 hospitals (and the pediatrician making this recommend) missed that she had encephalitis, which she (our pediatrician) thinks is totally possible. Yeah. If it's that one, the damage is long since done and Zoe's screwed. My google searches show that it's unlikely, though. MRI we had done should have caught it. She never showed any other symptoms (like fever) and other stuff that babies typically show. And it usually happens within 2 weeks of birth, which were actually Zoe's most normal/typical weeks of her life. Still, REALLY fun to go to sleep tonight thinking about.

-m

Zoe Update

Wed, 22 Oct 2008 16:07:55 GMT

I was recently reminded that I haven't posted an update about Zoe on here in a while. Twitter/Facebook folks might find this somewhat redundant, but here we go...

A few weeks ago, we got the results of Zoe's final test back - the 24 hour EEG (looks at electrical brain activity) that can tell almost without a doubt whether or not someone is having seizures. During the test, Sara and I observed Zoe having 5 episodes, so there was plenty to check out. The result? There were no seizures.

This left both of our Neurologists without a clue. They were both completely convinced it was seizures, because when Zoe has an episode, it looks EXACTLY like a seizure. Everyone was convinced. Every doctor or nurse who ever saw her do one, or even just saw the video, was convinced.

Since then they started grasping at straws because there was essentially no other condition that could mimic seizure-like episodes, particularly in an infant. (An older kid could maybe fake it, but not a 2 month old.) We set up a sleep study to see if maybe it was a sleep disorder.

And then the impossible happened. The episodes just went away. For about 12 days straight, no episodes. And a much happier, more wide-eyed and observant Zoe. It was awesome.

And then last Wednesday, they returned. I swear to you, we didn't change ANYTHING. We were careful, 'cause we didn't want to do undo whatever made them stop. The only changes:

- We had been stepping down her seizure medicine per doctor's orders (since it's not actually seizures), 1 cc less every week, starting on Mondays. So she had 1 cc less medicine in her system as of that Monday.

- We had taken her in for the sleep study on that Monday night. She hated it and did not sleep well at all because of all of the things stuck to her body, head and face.

That's it. It's almost certainly not the medicine because it wouldn't make sense for there to be a link since they're not seizures and the medicine is an anti-seizure med. And it's probably not the sleep study because I just can't figure out why one night of uncomfortable sleep would lead to episodes beginning 36 hours later that are then permanent.

It seems random, it really does. But there's gotta be something. The sleep study results showed that she was having two apneas per hour. Now, take that for what you will - she was waking up way more than normal due to the stress of the situation, no question. So who knows how accurate that is. But still, the doc wants us to check some possible causes of sleep apnea, just in case. So we'll be doing a test for acid reflux (a real test, the no fun one) and seeing an ENT doctor to check the back of her throat.

Sara and I both know Zoe has serious seasonal allergies as well. She snortles and chokes on the snot when they're bad, and we hear it a lot these days. Could the allergies be triggering the apnea that triggers the episodes? Every doctor has told us no, but I'm inclined to think they're all useless at this point. Especially because...

...our primary Neurologist is done with us. He essentially said to me that he has no more ideas, and that if the episodes keep coming stronger, all he can think to do now is send us to University of Michigan hospital because he has no clue. So, uh, yeah. That guy proved to be useless.

So, we have an appointment with our regular pediatrician tomorrow and we're going to get referrals for these other little tests. If we don't find reflux and we don't find something in her throat, I don't even know anymore. I think Sara and I are really just hoping against the odds that these episodes disappear again. It happened before... why couldn't it happen again?

Poor little girl. You can see the difference in her personality now vs. a week ago. She's fussy, she's unhappy much of the time. Whatever the cause of these episodes, there's discomfort all the time that comes with them. It makes me very sad for her.

-m