Wednesday, June 30, 2010

*still holding*

Just a quick blurb here...more like a rant really...

I have to say that it irritates me to no end when people know Jaysen is med-free, and any little behavioral glitch (or big one), the first thing out of their mouths is, "time to go back on meds?"

Really?
Because had you not known he was off meds, you would have thought he was just having a "rough day". But when he's off meds, we almost look for things to go wrong. We want to find them and blame them on something. If it's worse off meds, then it can be fixed by meds, and if meds can fix him....
If you really paid attention to him closely, and not just when he is off of the meds- you would notice that the behaviors and attitudes that are so glaringly obvious to you now? He was doing 2-3 weeks ago. A month ago. Last year. On meds.
So, no.

I will, however, be revisiting the issue with his psychiatrist- who by the way, isn't you... to discuss his medication situation.

Thank you, Detroit.

Thursday, June 24, 2010

*holding my breath*

Because we all know I just miss the Mom of the Year award by thismuch every year...

I was noticing Jaysen was running low on his meds. And by running low, I mean holy shit-potatoes Batman, I should have refilled this 3 days ago. So I jet on over to the pharmacy. As I was entering the store, something made me look down. Know what I saw???

-NO REFILLS-

Oh my effing Buddha burrito.
You've GOT to be shitting me.
Nope. Not shitting me.

Okay. I can handle this. Let's think. Yeah, wake up other half of brain...
Rational Me: Ohai! I'm here.
Me: Kay. I totally need you. Jaysen's outta meds. His behavior has been really tweaky lately- which means possibly, there needs to be a med re-eval. Possibly a different med? Maybe we should just see how he does off of them?
RM: Are. You. Kidding. Me? Don't you remember the last time you did this, and he was bonkers? Hyper like a spider monkey washing down crack with a Mountain Dew? Hyper like stayed up all night? Hyper like pulling couch cushions off constantly, and nobody had anywhere to sit?
Me: Yeah, but he's got one pill left... I could split it and get one day out of it...
RM: Or... you could call the doctor to call in a week's worth until you can get him in.
Me: But the weight gain and blood draws...
RM: The physical aggression... he's big now. That punch would hurt. For real.
Me: ...yeah... Okay, I'll give it a few days and really watch him.
RM: Oy...

So... we're on day 4 of no meds.
I can report that there is little to no difference.
I can also report that there have been some instances where he would usually "go off", and he has started to, but then walked away, and returned calmer.

Example: He was playing a video game that was frustrating him. He did some self harming, hitting and biting (keep in mind he was doing these sib's prior to no meds), but then he got up from the game, went outside and got the mail from the mailbox, came back in the house, and turned off the game, and watched TV instead.

*blink blink* I know.

Another example? I received word from Jaysen's camp counselor that while at the park... "Jaysen was threatened by another (non-camper) boy. Jaysen handled the situation wonderfully."

*huge proud cheesy grin*

Keep him in your thoughts as we fare through this interesting trial!

Wednesday, June 23, 2010

Found!

And this is why I'm a Daddy's Girl...




Thank you, Dad...
I love you!

Monday, June 14, 2010

And...then you have days like these...

"Jaysen, are you ready for bath?"

"Yes. I want to relax...you don't come in."

Awww...kid wants to relax in privacy...

~Fast forward about 10 minutes~

*clink, clank*

"Uhh... Jaysen? You okay in there?"

"Yes. I inna baff."

"I don't hear water, are you sure you're in the bath?"

"Yes inna baff..." *clink clank*

Knocking as I'm opening the door, only to find standing on a step stool at the mirror... my naked sparkling son, with all of my necklaces on, trying on my rings, smelling like grape Hello Kitty body spray.

I didn't know whether to laugh out loud, or try to hold it all in.

Then he told me he used my deodorant.

So I started cracking up.

And he did too.

'Inna baff' my arse...
Ahhh... I love our bonding days.

Friday, June 11, 2010

SIBs suck.

Some of you will immediately recognize the following.
Others, I hope will understand why sometimes the circles under my eyes are so dark, or why I may seem preoccupied...

What would you do...... if you noticed marks on your child's body like this?



Or this?.........



Now.....what if the marks were self-inflicted?

No matter how seasoned I become as a parent, SIBs (Self Injurious Behaviors) are still one of the most heart-wrenching things for me to witness. This is not the first time for us, nor is it the last, but it never gets easier no matter how many times you bear witness to your child self harming.

Jaysen's frustration and anxiety, coupled with his inability to self-regulate, create an emotional abattoir to which the only acceptable release is to launch into a physical attack on himself. Usually the incidents are short-lived, but with repeated blows, he carries the bruises for days, if not weeks.

My heart carries the trauma much longer.
The part that tears me apart is, I am utterly helpless. I can't help him. I can't stop him. I can't make it better, or take the pain away. I can only try to keep him safe at the time. Try to make sure there is as minimal damage inflicted as possible.

Because I know I am not alone in dealing with this...
Extra love to you all dealing with the same.

Tuesday, June 8, 2010

Sweet surprise

I've said before, how although I may have never met my blog friends in real life, they are truly friends. When in the midst of a seemingly-endless dark chasm, out shines a brilliant ray of sunshine...that's a friend.

Friends just "know" when something's wrong.
Friends support you when you feel weak.
Friends help pick you up when you are down.
Friends help you see the light when you feel surrounded by darkness.
Friends send you gourmet hand dipped chocolate covered strawberries.....

Oh yes...they do...
Joeymom is the best. No, really, she is as awesome as they come.
Sure, she has a rockin' blog, but more importantly, she is genuine.
I love her.
And not in a creepy mom-crush way.
Okay, maybe a little like that.
Or it could be the pain-meds talking.

Anybuzz, she also told me I didn't have to share.
So I'm not.

Thank you, Joeymom!!!!!
You totally and absolutely made my day.


Thank you for just "knowing".

Thursday, June 3, 2010

Back to the OR... *update*

Well.... I wish I had some good news to report, but it seems my black cloud o' doom has morphed into a vortex.

A few weeks back when gouged my hand on the lid to a can of green beans? Yeah. Apparently I severed the ulnar nerve. Come to find out that not only is that not a good thing, it is actually quite the opposite of a good thing.

I found all of this out yesterday. I go in for surgery tomorrow.
Quick? Yes. Opposite of good.
The surgery is in hopes to reattach the nerve. This in turn, is in hopes of returning "protective sensation" to my hand- meaning the ability to discern hot and cold. Helpful, but I'd really like some function back. And to take away the pain from the neuroma. That would be nice too.

But noooooo!.....
Because I do things grandiose, I was also diagnosed with CRPS (Complex Regional Pain Syndrome), formerly known as RSD. In a nutshell, this means my nerve and brain are not communicating, and if something touches my hand, my brain tells my entire body that it is in pain. Literally. The doc tapped my hand, and I jumped out of my chair at the electric lightening bolt that coursed up my left arm, through my chest, and down my right arm. I told the doc that whoever came up with that test was an asshole, and I wasn't sure I really liked him anymore either. It didn't matter because the shiz is permanent. Which made my day so much, I cried tears of joy. That wasn't joy? Oh. Then I must have been crying for reals because permanent pain? Who wouldn't love that?

The surgery will not restore function or feeling (other than hot/cold) to my hand area, but it will hopefully alleviate the pain. OR.... it could make the pain, Teh Pain. Teh Pain sucks. I could develop full blown CRPS, which I know is horrible, because Dollface developed it after her surgery. This is where the hand changes colors, textures, and is so sensitive to anything that even air blowing across it, sends you into extreme pain overload. And?... I'm high risk. Not everyone gets full blown CRPS, but it affects mostly women, and even more so emotional women. I'm so screwed. Since they are aware that I am high risk, I'll be monitored closely. If I do start to develop symptoms, they will haul my ass into PT and attempt desensitization. Fabulous.

I have to have the surgery- I can't have a severed nerve just chillin' in my hand. And my docs (first and second opinions) both think the benefits outweigh the risks, and I am trusting them. So. Once again, I am calling on you, my lovely readers and friends, for your positive thoughts.

I will update when I am able.
Wish me luck and stay away from evil cans of green beans!

And somebody please find that damn voodoo doll...

*******UPDATE*******


Surgery went well- Once he got in there, he found my nerve had wrapped itself around, and attached to, a vein and a ligament. Sounds pretty gruesome. Other than that, everything went according to plan. Jaysen is still processing, but I think the huge wrapping and sling are giving him the visual cues he needs. Lol.

Like dis...