Friday, April 29, 2011

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. 

Wednesday, April 27, 2011

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.

Monday, April 25, 2011

And then there's that... 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.
"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...

Thursday, April 21, 2011

And history repeats itself.

I'm starting to think The Universe is against me.  Seriously.
What's that line...the Lord giveth, and the Lord taketh away?

If you've followed this blog for awhile-
a) you are undoubtedly super amazingly COOL and b) you will remember that we did not get Jaysen into a fantabulous school without a fight. 
A fight that cost him years of education, set him back socially, and shattered my trust and faith in humanity.
A fight I am afraid I am going to have to embark on yet again.
I don't know if I have the strength to do this.

I received a call from V, the supervisor of Special Education.
She informed me via phone message, that it's okay Jaysen follow through with the good school for upper elementary for 5th and 6th grade, but for middle and high school, she says he has to get back on track with our "home" schools. 

Hmm. Let's think about that for a minute.

My son was put through so much hell at one school, that you yourself- the supervisor of Special Education- said it was despicable, and he should not be subjected to that treatment.  You were there when my son was isolated from his peers and an appropriate education for over 4 months.  You were there when the teacher got the parents to rally- calling him a "monster", said he should be in a separate class, not allowed around other kids, and when were their kids going to get "special attention" like him?  You were there when the principal blatently lied about her actions, and violated multiple ethical and legal avenues.  You even had to reign her in.

You were also the one who toured the other schools with us.  You were the one who said the school we toured (Jaysen's current school), would be a much more accepting and encouraging environment.  You gushed on and on how this would be a productive and successful environment for him.  That he would flourish.  And he is.

So it's kind of beyond me, why he is being transferred back to the school system that was horrible to him.
And the kicker? 
The shit-eating principal from the crappy school?  Is at the middle school you want him in.
There is something really feckered up about that.

Wednesday, April 20, 2011

Guest post! :)

Today, I have a special visitor at my office with me.

Hi my name is Jaysen (name changed).
I like mario and pac man and baby einstein.
I have a super nintendo and super nintendo games. thay are called power rangers zeo racers, yoshis safari, super mario world and super mario all stars.
I have a brother name ryan who keeps beating me up and I love him so much he has red hair.
The end

So there you have it, folks. 

Tuesday, April 19, 2011

I have a full time job, and surprise! it's not you.

Dear People in my Life,

Please stop going to jail, beating your spouses, and being general asshats.  You should also stop the drugs, take care of your children, and do something productive instead of running around playing silly games like a spider monkey on crack.  It would be nice if you ceased having medical complications, and also? stop dying.  My sanity thanks you.


Friday, April 15, 2011


I know.... I have been neglecting my blog lately. 
People want me to blog, but then are offended, pissed off, or hurt when I do.
Why haven't you posted?  Your blog needs updating.  You really need to post something...
This is mainly a blog about Autism. 
Things on the Autism front are okay. 
It's occasionally a blog about Charlie Sheen and unicorns. 
I'm good on that front too. 
It's also a blog about people. 
Oh shit....people?  Like me?'s all good until I start writing about YOU.
Then all kinds of feelings get all wankered and I'm a flying jackass with a tutu.
People get all tweaked out.
So in an effort to keep everyone happy, I just haven't been posting.
Which is wrong, yo.
I do my best to maintain anon-status for anyone whom may show up in these posts, but it doesn't seem to be enough to make them happy. 
The problem is, peeps.... this is my blog.

You see, my life is all feckered up once again.
Exploding into oblivion, with shrapnel flying everywhere.
Duck and cover, baby.

And I can't write about it, and it's affects.
Do you other bloggers ever have that problem? 

Thursday, April 14, 2011

Because I *do* appreciate the apocalypse

So Twitter.  I do not "get" it. 
However, there is a random tweet-generator that will magically predict your possible next tweets.
You knows I love me some random generators lately...
Here are some That can be my next tweet predicted for me:

AAAAAAAARRRRRRRGGGGGG!!!!!!! Just sayin'. That dose counted.

Damn I am going to marry me... Srsly? You guys are going to marry me.

I appreciate the blowjob... Bwahahaha!!! On another hand, think I do?

New blog post: Yes, I Finally Understand BATMAN! And assuming isn't possessed linda blair style...

Oh, you're about to friggin cave when Charlie Sheen dies on the boy pukefest '11? : Nice!

Yes! Now I appreciate the apocalypse. Seriously, like food?

Omg... I suppose it could depend on this hot hotwheels crotch.

Rawk. I just saw rylan's butthole. This day can suck a seal.

On one hand, i'm an asshole. I would prefer to see the pygmy goats over!

Actually, maybe it does know me pretty well.