Come here often?

It's been way too long since I've posted, but we've been having some slightly bizarre illness happening here.  Very high fevers and random barfing.  No other complaints, just hot n barfy. 
Anyway..
Jaysen's surgery went very well.  Thank you all for your well wishes!The procedure was a bit more involved than originally anticipated, but the surgeon was able to complete it without complication. 

Jaysen was really nervous- and by nervous, I mean he was scared out of his everlovin' mind...but once in the room, they did a good job of relaxing him (read: drugs), and it was over in a jiffy.

Going..........

........and gone.

So freakin' cute.
Recovery on the other hand....notsomuch.
Apparently, my lil guy doesn't come out of anesthesia too well.  He was really crotchety, and in a significant amount of pain.  They gave him half a vicodin, and it wasn't long before I was pushing for them to give him the other half.  The nurse was from the school of start small and increase doseage only if absolutely necessary.  Mama has had a few surgeries in the not so distant past, and is from the school of the patient should be KTFO (knocked the fuck out) the day of and the day following surgery.  Then, painkillers should be administered as necessary.



KTFO.



Add in a reaction to one of the medications and some unexplained chronic barfing....it was a rough few days there. 

New belly button under construction:

The kid is tough.

Blondie was onto something...

I have to interrupt this surgery recovery to bring you a veloci-RAPTURE post. 
Mainly because I have not gotten to transfer my pictures from my phone to my computer yet.

Okay, so if any of you happen to get Swept Up In Glory this evening, I will miss you.
You should have a Rapture party. 
All you need is some Heathens, some Virtuous Ones, and some eats and drinks. 
Oh and music.  In the event of a Rapture party, I put together an End of The World playlist. 
Cuz I care about you like that.
And I have a child recovering from surgery, so I can't get all Rapture-riffic myself.  Boo.

Here is my gift to you, a Rapture playlist:

Nothing is Keeping You Here - A-ha
Apocalyptic Sunshine - Acid Bath
Now I'm Feeling Zombified - Alien Sex Fiend
Jesus Chrysler Suicide - Anaconda's Child
Heaven or Las Vegas - Cocteau Twins
We've Got a Bigger Problem Now - Dead Kennedys
Blasphemous Rumours - Depeche Mode
Can't Go Back - Descendents
Reality Check - Genitorturers
She Floated Away - Husker Du
I Like You So Much Better When You're Naked - Ida Maria
Risen - KMFDM
Wheel in the Sky - Journey
Bring the Pain - Mindless Self Indulgence
This is Your Last Chance to be Famous My Love - The Mint Chicks
That's How I Escaped My Certain Fate - Mission of Burma
Disappointed - Morrissey
99 Luftballons - Nena
Jesus Doesn't Want Me for a Sunbeam - Nirvana
Oh Lately it's so Quiet - OK Go
Another Girl, Another Planet - The Only Ones
So Stark - Pavement
Learning to Fly - Pink Floyd
A Million Miles Away - The Plimsouls
Monkey Gone to Heaven - Pixies
Countdown to Armageddon - Public Enemy
You Just Haven't Earned It Yet, Baby - The Smiths
Here I Am (Come and Take Me) - UB40
I've Been Waitin' for Tomorrow - The The
The End of the World as We Know It - REM

Enjoy.
And tether your asses down, 'cuz I really will miss you.
Haha....who am I kidding...you guys ain't goin' nowhere...
*muah*

Meh.

Jaysen has surgery tomorrow.
Am nervous.
So is he.
Wish us luck. 
Will check in.

~xoxoxo~

I heart lampposts

Finally.

I was given the opportunity to review a film called Loving Lampposts: Living Autistic.  Todd Drezner takes an interesting, and refreshing approach to gain knowledge about his son's diagnosis.  I say refreshing, because this is honestly the first time I have ever seen the topic presented in a 100% unbiased, non-judgemental, and eyes fully open approach.  Drezner spends time seeking knowledge from both "recovery" and "neurodiversity" movements, presenting both sides equally, and straightforward.  And neither side presented Autism as a devastating apocalyptic disease that steals your children's souls. 

This is a really good film, peeps.
The title is personal, and reflects Drezner's son's special interest in lampposts, and his affinity for them.
It's personal and heartfelt.  The parents in this film have so much love for their children. 
I would be willing to bet there are a lot of newly-diagnosed parents out there, whom would feel much comfort and support from just this knowledge alone.  Why?  Well sure, because it has Estee and Kristina in it :), but also because it presents options.  As parents, we love options.  We may have a strong feeling toward a certain side, but as long as that option is there...we are hopeful.

Not to mention the kids in the film are downright adorable.
I think this film should be stockpiled and handed out to parents of newly diagnosed kids.
It's that good.  And that informative.
Really- that's what our goal is as parents.  We just want to make the best decisions for our children, and the way to do that is to make informed decisions.

Lampposts.
Love em.

**UPDATED**  I have received a few inquiries as to how people can obtain a copy of the DVD of their own.  I was given the following information from Cinema Libre:

For people who are interested in purchasing the DVD for private use, they can go to our website.  Here is the link - http://store.cinemalibrestore.com/lovinglamppostsdvd.html.

For people who are interested in screenings or the educational DVD, they can also visit our website – http://www.cinemalibrestore.com/educational_grassroots.html

If they have questions they can contact sales@cinemalibrestudio.com


Disclaimer: I did not receive compensation for this review.  Should anyone feel compelled to compensate me, feel free.  I would love an alpaca, or perhaps a nice garden gnome.

And lastly, this...

To catch up, part one and part two.

Thank you, everyone, for your words of comfort and support.  They really mean a lot to me.
It seems that since my freakin' fire 2 years ago, I've been hit with a barrage of crap that just has no end.  It sucks, and it is affecting me.  To know that you all are out there helps ease the crappityness of it.  So thank you.

We met with the surgeon, and apparently this is a congenital defect (because everyone needs more of that dontchaknow), and it's extremely rare.  Like less than 1% of the population has this thing kickin'.  And of course, it would happen to us.  Anyway, as it stands now, we have to wait for the infection to clear up, and surgery for excision of urachal cyst is scheduled for May 19th.  I have not told Jaysen yet, and don't plan on doing so until maybe the week of.  When I tell him, he's going to flip.  But he'll pull through, just like he did at the hospital.  I am amazed at how far he has come.  How tough he has gotten.  He is now taking 3 pills 2 of which are full sized antibiotics.  That is huge for my sensory defensive kid.  Huge. 

On a side note, I was at the Metro Parent Living With Autism seminar yesterday.  It was pretty cool.  You could just feel the love in some of those presentations.  It really warmed my heart.  I also met some cool people- Melissa Hunt-Sampey and I connected on Twitter, then she magically stopped following me later that day. Was it me?  I don't know, probably.  I met and had lunch with Staci Bockmann from My Great Kid, and I really enjoyed and found motivation in hearing how her son has blossomed in theater.  And reconnected with behavior consultant Aubry Dodge, whom I absolutely luuuuurve.  She is awesome.  I've blogged about her here, but used the pseudonym "Audrey", 'cuz I'm ultra creative like that.  Aside from the vendor who told me I must not like Jenny McCarthy because I'm jealous of her money and fame (yes, really), it was a good time.

So, that's the update. 

And also this...

I received a phone call from the doctor at the hospital last evening. 
Culture came back, and Jaysen needs a surgery consult first thing this morning.  They wanted us in last evening, but I physically couldn't get him there before they closed.

Having trouble figuring out how this went from here are some antibiotics, call us if he doesn't get better to we have to get him in to see a surgeon immediately.

Am freaking out slightly.
And by slightly, I mean ohmyfreakingawd what the hello kitty is going on?
Spaztronic style.

And then there's that...

...now with more RAGEFACE.

For the past couple days, Jaysen's been complaining of a stomach ache.  Dr. appt stated a urinary tract infection. 
Y'know that "mom-voice" that says really, I'm sure that's a lovely diagnosis, but I just don't think that's what's going on here... The one that gets you labeled as "combative" and "non-compliant"?  Yeah, well we get it for a reason, doktorz.
However, I accepted the dx under the promise they would get back with me once the culture came back from the lab. 

Saturday, we spent the night in the hospital.

When I went to pick the kids up from Companion's house (note to self: Companion possibly needs a new moniker), Jaysen was still complaining his stomach hurt, and his belly button was "dirty".  Upon inspection, the "dirt" was crusty something.  Further inspection revealed that the crusties were pus.  Lovely.

So I called the doctor again, who referred us to the outpatient pediatric clinic.
Dr. at the clinic swabbed his navel, handed the culture to me, and told us to immediately go to ER.
Whaaaaat? 
"Emergency Room" and "Immediately" are words that when used together, automatically induce terror in a parent's heart.

So we went to Emergency.  Immediately.

The doctors there were awesome. 
They were efficient, informative, and let me know every little process they were considering.  They involved me from the get go.  They understood what it meant, the issues that Jaysen's ASD may present- they explained a procedure to me, and hung back while I explained it to Jaysen (and subsequently calmed him from the freakout trigger words "needle" and "medicine"). 
They understood about processing time, and respected that.  They asked my opinion on what the best approach would be for them to get what they needed.  They took their time to explain procedures further, in steps, so I could present it to him like that.  They.were.awesome. 

And Jaysen did an awesome job of letting the doctors know where his abdomen hurt and where it didn't.  He followed directions, and responded to the questions asked of him (in his Jaysen-speak).  He toughed it out and allowed them to examine him even when it was uncomfortable, even painful for him.  Fear is a powerful sedative when it comes to Jaysen.

He was terrified of getting an IV, but he didn't try to punch the tech. 
I almost did, however, because he was one of those who have to "dig around" for the vein once inside.  Asshole.

I waited for Jaysen's adrenaline RAGEFACE to subside, and explained to him that this was where they would put any medicine he would have to take, and that was uber-cool because he wouldn't have to swallow any meds.  He was unimpressed, until the nurse was fussing around and I told him she just gave him meds, and he didn't even know it.  Then, it was kinda cool, and he wanted me to take pictures of the IV.

They wanted a CT scan.
Problem with a CT scan (besides the pesky radiation), is you have to drink this apparently nasty contrast liquid. 
And no, putting it in apple juice doesn't make it any better.

Jaysen barfed it up. Twice.
They ended up putting contrast in his IV.
I asked about mild sedation- the doctor said "I figured you could go in there if you wanted to, I don't think he'll need sedation- you have a strong connection and work very well with him.  It's really cool to see.  I think he'll be fine with you there."
Aww!  Thanks doc.  I was meaning for me. 
But he did do fine during the scan.  I did too.

So....what's up with my crazy kid?
The official diagnosis is urachal remnant.  And cellulitis.
The cellulitis is no biggie, but the urachal remnant part sounds tweakish.
Apparently, this is a congenital defect where the tract going from the bladder to the belly button does not close completely after birth.
It's this semi-open tract, that became infected.
We caught it early enough that it wasn't a deep infection, so that was good.
But it can be recurring, and if left untreated, is bad news bears.

Butchaknow what?  I am so super proud of him.
He may not have been the bravest at first, but he followed mad directions, even in spite of his sensory issues and fear.  He was a trooper at drinking his "stinky juice", and is swallowing his big antibiotic horse pills. Those are both little victories for him. 
Actually, they're pretty huge.

And I am probably going to hell, but I love that last picture...