When In Doubt, Vote 4 Hope.

I get asked a lot about why I blog? Or why I think raising awareness is so important. And the reason is simple.

Austin.

I would like Austin to grow up in a better world. A world that is accepting. A world that is aware. And really the big picture is that I'd like so many things to change for him.

I'd like answers to our genetic mystery.
I'd like research funded to provide those answers.
I'd like resources available to help parents navigate the health care system.
I'd like laws and regulations changed.
I'd like him to find a place where he belongs.

So I work for all that. Slowly but surely I sit here and chip away at my corner of the inter-webs and try to reach people. I work with others to try to achieve a greater acceptance and understanding for special needs families.

I do this because I really believe in my cause(s) and because there is strength in numbers. Following the theory that 'the whole is greater than the sum of it parts', the more voices that unite for one cause the better.

So this month, September 2010, will be vitally important to us for many reasons.

It happens to be Craniofacial Acceptance Month and enough cannot be said for my desire for a world where my child is not look upon as 'damaged' due to his facial differences. Beyond the face IS a heart and until everyone embraces that belief, Austin will fight an uphill battle in this world.

And the last week of the month is Deaf Awareness week. {Can't forget that one like we almost did last year.}

But this month I am really getting behind a campaign I believe in. Not just for Austin's sake, but for ALL kids fighting, living with or dying from a rare disease diagnosis.

During the month of September, Global Genes Project is participating in the Pepsi Refresh campaign.

Global Genes Project is not just about one kid or one disease. It is however, about one focus. they have one goal: Increase awareness for the prevalence of rare diseases and those affected by them. While each disease might be rare when considered by itself, together they negatively impact the lives of millions of children and adults.

So while I am really concerned about my one-in-a-million kid. I am also aware that we are not alone. And that helps me sleep at night. Someone, somewhere else is helping fight for my kid.

So what do we need:

This means they need help. Lots of help. Votes, lots of votes! From everyone, everywhere.

We need grassroots involvement from everyone. School kids can participate by drawing pictures and sharing their artwork. Teens can participate and get volunteer hours by spreading the word. Parents and Grandparents can get everyone they know to vote, vote, vote! (details below.)







Austin will be featured in their Vote4Hope email campaign along with 29 other adorable kids! So we are proudly going to display our badge all month long.

{You'll have to subscribe to the daily email reminders and follow the site or Facebook page to meet the Ambassadors For Hope.}

I realize not everyone is on Facebook or will have the patience to go directly to Pepsi's site daily. So I think the biggest impact we make will be to vote everyday from every cell phone you have!!

August's competition was a real nail biter between several wonderful rare disease organizations.

Here's how you vote:


Before you start I'll give you a suggestion.

TEXT is the EASIEST format, then Facebook, then Pepsi. So if you are limited on time let me suggest you TEXT your vote in.

However, since you all Love Austin so much I am sure you will vote ALL three ways each and every day. {just sayin'}

Vote directly from the Pepsi site

Vote from Facebook 

Text to 73774 (Pepsi), followed by our voting code (102614) in the text message.

You will then receive a confirmation text.

UPDATE!!!

We also have a custom link that goes directly 

to Global Genes idea. I think you'll like it!!

http://pep.si/vote4austin

Cute, eh? Now go use it!!

Thanks for peeking,




Subscribe here for a daily Sneak Peek at Me {and my not so "typical" family}


*******

Have you voted today?


Text ::
Text 102614 to
Pepsi (73774)

Pepsi Page :: http://www.refresheverything.com/fundhopeforsickkids

Visit Vote 4 Hope to subscribe to daily reminders. http://vote4hope.org/

Come hang with us on Facebook.

A Little Surgical Update

Good news, we find out tomorrow about our final surgical date. As of right now it is tentatively scheduled for Monday, September 13th. Let me tell you it has been quite a roller coaster just getting to this point. It seems ever since I got back from BlogHer things have been simply crazy!!

Before we get in to the crazy. Check out this picture...




Austin dressed as Woody at Elijah's 2nd birthday!


Cute, yes?

So now allow me to unleash the crazy on you. (You're welcome.)

We met with Dr. Pulmo in early July. She cleared Austin for surgery. Then we met with Dr. Plastics. He sent Austin for a head CT scan, and while we were there, just for fun, we added in another scan of his temporal bone for Dr. Reconstruction (more on her later.)

Then we went back to meet with Dr. Plastics to get everything squared away. And...another thing got tossed our way.

I guess it's my fault. Sorta. Kinda. I dunno.

I asked Dr. Plastics about how this surgery might affect Austin's teeth. And then he asked me if we had met with Dr. Orthodontic. No, of course not. Darnit!

So we meet with Dr. Orthodontics tomorrow. The idea is that Dr. Ortho might be able to create some sort of device/appliance/mold that would aid Dr. Plastics DURING Austin's jaw distraction surgery.

Here's how it works.

Dr. Plastics feels that he can move Austin's jaw OUT ... as in forward. This would aid in hopefully creating a nice, big, beautiful airway. And airway that just might allow his Trach to be gone.

So this is where I throw in the monkey wrench.

I asked about when and if he might be able to correct the other issue with his jaw, the Hemifacial Microsomia. The slight off-centeredness of his jaw. (Yeah I think I just made that term up.)

Anyhoo. He felt that we could "try" to correct it now (with Dr. Ortho's help), but it may just be something that needs correcting again later when he is maybe 17. So if you know me by now, you know I am all about eliminating more work later.

I am a two birds, one stone believer.

So it seemed worth it to wait for Dr. Ortho to wrap up his vacation so we could get a consult with him.

After he gives us they YAY or NAY, I will trot across the hallway to Dr. Plastic's office where his surgical nurse has promised me a firm date for surgery.

All good thoughts are appreciated.

And yes, I have more crazy for you...but that will have to wait until Thursday.


Thanks for peeking,




Subscribe here for a daily Sneak Peek at Me {and my not so "typical" family}


Do you have... A favorite quote to share about overcoming adversity? A saying that inspires you or others? A special needs blog that needs some love & attention?

Send me an email (click on the little @ globe in the top right corner) with your name, email address, blog url and your favorite inspirational saying and you can possibly be featured on Just Sayin' Saturday.

Just Sayin' Saturday: Achievement

"If you believe it, you can achieve it. If you imagine it, you can become it." -Unknown





Today's inspirational quote comes from Maggie Besterman. She wrote, from the age of 15 I struggled to finish high school, finally stopping at 21. I had struggled with school being a trigger for my anxiety, and then with Fibromyalgia after that.

I got my G.E.D. in 2007, and started college, still struggling to this day with my disabilities, but this quote has inspired me to keep going with my education.

WTG Maggie! (by the way we met on Twitter, she has a son named Austin too. He is a cutie and an awesome drum player!!)


Thanks for peeking,




Subscribe here for a daily Sneak Peek at Me {and my not so "typical" family}

Do you have... A favorite quote to share about overcoming adversity? A saying that inspires you or others? A special needs blog that needs some love & attention?

Send me an email (click on the little @ globe in the top right corner) with your name, email address, blog url and your favorite inspirational saying and you can possibly be featured on Just Sayin' Saturday.

How Much Do You Love Your Hospital?

Or Specialist? Therapist? Nurse?

How much do they understand what you go through?

I am known for venting often about our crazy situations with Home Health Care nurses. (Luckily, we have two excellent nurses right now, knock on wood, so I have little to complain about, except that they can only work 40 hours per week.)

During several recent discussions, I was surprised to learn just how out of touch hospital staff and others in the healthcare field are with chronically ill or complex patients and their caregivers. How little they understood about what we deal with everyday.

Yes, I'll say it. Absolutely, there are some excellent doctors/nurses/therapists. I treasure them. They make my life a little bit easier. But in the past few years I have come to find that they are the exception, not the rule.

For instance:

Does anyone (who actually works in a hospital) have any idea how hard it is to get a prescription filled? Correctly? From the pharmacy that is just steps (okay a few hundred) from the doctor's office.

Should said Rx take four days, five phones calls and an argument with someone waving her finger in my face for it to happen? And even then it's wrong.

When something goes wrong why do they always blame the fax machine or the phone system?

If you didn't send it, don't lie...just do it. Or get a new fax machine, how hard can that be? I heard the hospital just get a bazillion dollars donated.

I wonder if they have any idea just exactly how many times a week we are there?

I wonder if they really care?

What happens to the nurses who doze off or administer the wrong meds while watching my child?

Do they merely get moved to another patient?

Is the bottom line really more important than finding the right person for the job?

If I wasn't keeping the agency or the doctor's offices all in the loop about what the other one said or did...what would happen, I wonder?

If I didn't push for things to happen, would they?

We see so many doctors in different clinics that no one seems to be in charge. Most doctors will defer to the Pulmonary doctor, so I guess she's in charge. But half the time I'm not sure she gets or reads the reports unless I ask about them. So maybe I'm in charge.

Should I just accept that sitting in the waiting room for hours is part of my life?

Why is it a big secret if the doctor is running late?

How can he be 45 minutes late when I'm the first appointment and I got here early?

How often do they clean those toys in the waiting room?

Shouldn't helping patients be everyone's job? Not just the girl who left early for the day.

If the therapist gets to cancel at the last minute then so do I. Are you really going to charge me?

If the nurse calls out sick at the last minute it would be helpful to know that...you know as soon as possible.

Waiting until I contact you for you to tell me that you "forgot" to call me is unacceptable. It's called communication. Let's try it.

Is anyone valuing my time? Driving. Scheduling. Rearranging. Waiting. Parking.

These are not just things that I think about, these are really things that I have to deal with. Continually.

So yeah, maybe the know-it-all waving her finger at me is right. Maybe I do need to sit down and take few deep breaths.


Or maybe, just maybe...


Someone like me, a parent advocate with a different perspective, needs to really start connecting parents with administrators.

And maybe they need to start listening to parents' concerns.

Try something cutting edge -- listen to your patients/clients and their caregivers. We are more than just a number or a reimbursement.


I'm curious. Do you have any concerns to add to the list? {And yes, we will address the flip side.}


Thanks for peeking,




Subscribe here for a daily Sneak Peek at Me {and my not so "typical" family}


Do you have... A favorite quote to share about overcoming adversity? A saying that inspires you or others? A special needs blog that needs some love and attention?

Send me an email (click on the little @ globe in the top right corner) with your name, email address, blog url and your favorite inspirational saying and you can possibly be featured on Just Sayin' Saturday.

What Does Hope Look Like?

Sometimes it prefers to remain anonymous...


and sometimes you realize.... it will outlive us all.





Wishing my Grandpa a Happy 97th Birthday!!!


Share your "Images of Hope" at Global Genes Project's Vote 4 Hope page or Flickr group.


Thanks for peeking,




Subscribe here for a daily Sneak Peek at Me {and my not so "typical" family}


Do you have... A favorite quote to share about overcoming adversity? A saying that inspires you or others? A special needs blog that needs some love & attention?

Send me an email (click on the little @ globe in the top right corner) with your name, email address, blog url and your favorite inspirational saying and you can possibly be featured on Just Sayin' Saturday.

Just Sayin' Saturday: Let Him Be A Kid

"Childhood should be a journey, not a race." -- Unknown.






This weeks quote is from Angela, she is a dedicated mom to two boys, John and Jacob. She is also a loving foster mom to "T". Whew! You can read more about their journey here. I am wishing them lots of luck, as they will be heading to NIH this week.


***


I had THAT moment this week when I discovered realized admitted to myself that all the therapy in the world is not going to make a difference for Austin right now. He is who he is. He'll eat when he eats. To be honest, I was much more concerned about things when he couldn't crawl, or walk or drink unthickened liquids. Now, not so much.

I know therapy has its place. And we will continue, but I am done twisting my schedule into a pretzel when we should be enjoying our summer. So the other day, when his long-time feeding therapist was trying to get me to agree to a few makeup sessions. I just shrugged my shoulders and said, "I'm really just not worried about it." In my head I was thinking, Look lady, I scheduled you on Tuesday because I don't want any therapy sessions on Thursday or Friday. Thankuverymuch.

This was a conscious choice I made at the beginning of the summer. So just because she got bumped a few times for Pre-Op appointments...well that's just the luck of the draw. I'm pretty sure she thinks I may have been taking over by a body snatcher. I used to be very structured.


Have you ever just come the point, where enough is enough for therapy or medical advice?


Photo: kirjay

Thanks for peeking,





Subscribe here for a daily Sneak Peek at Me {and my not so "typical" family}

Do you have... A favorite quote to share about overcoming adversity? A saying that inspires you or others? A special needs blog that needs some love & attention?

Send me an email (click on the little @ globe in the top right corner) with your name, email address, blog url and your favorite inspirational saying and you can possibly be featured on Just Sayin' Saturday.

Places to Peek This Week: Let's Do Good

First, I want to take a moment to say if you are not on Twitter yet you are missing out on some great moments, conversations and relationships.


For instance, you probably missed Austin's birthday surprise for me.


Behold.






This is the picture I linked to.






Funny. Yes?


Even better was one response I received.





See what you are missing. ;)


***

So you remember, of course, LATISM and that Latina survey I linked to a few weeks ago, right? Of course you do. So the results are in. Read on. You may be surprised.

***

My dear friend, Juliette, is part of a campaign that is doing good. So far she and other bloggers have helped to provide thousands of DAYS of water to people in underdeveloped countries. You'll go vote, right? Of course. (Yes, you'll need to leave an email address...AND click on an activation link. It'll be quick and painless.) Thank you!

***

While I was in New York for BlogHer I visited Scholastic. It was a highlight of my trip. Here is another chance to do some good. You know you love it...don't roll your eyes.

Okay here we go:  Scholastic is coming close to the end of their Facebook project with K.I.D.S. – through September 1, 2010, they are donating a book to kids in need for each person who “Likes” them on Facebook. Each “Like” is another kid with a new favorite book to read! Their goal is 100,000 books, so please help them spread the word.

See, that wasn't so hard, right?

And now one last thing. No worries, no voting required.

Here are some blogging tips you may find helpful...or as I like to refer to it --- Look I got a mention!!


Thanks for peeking,




Subscribe here for a daily Sneak Peek at Me {and my not so "typical" family}

Do you have... A favorite quote to share about overcoming adversity? A saying that inspires you or others? A special needs blog that needs some love & attention?

Send me an email (click on the little @ globe in the top right corner) with your name, email address, blog url and your favorite inspirational saying and you can possibly be featured on Just Sayin' Saturday.

Chip Off The Old Block

I honestly don't know where he learns all this stuff. ;)





For the record that is NOT my computer. It belongs to CHLA.


Thanks for peeking,




Subscribe here for a daily Sneak Peek at Me {and my not so "typical" family}


Do you have... A favorite quote to share about overcoming adversity? A saying that inspires you or others? A special needs blog?

Send me an email (click on the little @ globe in the top right corner) with your name, email address, blog url and your favorite inspirational saying and you can possibly be featured on Just Sayin' Saturday.