Man In Training - Wordless Wednesday

A trip to the Zoo this weekend provided the opportunity to continue Austin's training.


Someday, his wife will thank me.





This man WILL ask for directions!


{I hope...}



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135 Days Of Silence

Last week marked yet another anniversary for Austin. While his tracheostomy and feeding tube are to be celebrated for saving his life, his hearing aid is celebrated for opening him up to a whole new world. A world of sound.

Austin passed the newborn hearing test, sort of. At the age of 3 months he was tested with an ABR, and it was determined he could hear only loud environmental sounds like a barking dog, a piano or a vacuum, but only if he were close enough to the item in question. Clarity is a whole other issue.

I know he seemed to respond to me talking to him, but maybe he just liked to watch my face move randomly. Hard to know for sure.

Despite his obvious hearing loss, due to Microtia and Aural Atresia I always spoke to him in normal speech tones, read to him and played music for him. I treated him as a typical hearing child, not because I was in denial, but because it is important for him to see my lips moving and to have that social interaction with me.





On March 17, 2008 his entire world changed.

After much wrangling and insurance hullaballoo, the day came. On Saint Patrick's Day I took my little leprechaun to Dallas' Callier Center for Communication Disorders to be fitted with his first hearing aid.

When we placed the hearing aid on his head and I spoke to him him, he smiled a genuine "I-can-hear-you-and-I-love-it" smile. It was a smile I will never forget. What I did happen to forget is the words I spoke. I'm pretty sure I just said, "Auuustin, Hi Baby!" or something like that. Close enough. So yup, that's what I said.





When I look at this picture I can see that recalling the exact words isn't nearly as important as that reaction. While I know I should have been ecstatic, to be honest it was a bittersweet moment. Suddenly I realized how much he really had missed.

Austin was four and a half months old when he heard my voice for the first time. Four and a half months, that's 135 days of silence. It was really heartbreaking to think about all those moments we lost.

I am pretty sure that is something so many parents take for granted, I did. Article after article tells you that your child heard you speak before he/she was ever born. That didn't happen for me. I was one of those people who played music to my belly. Perhaps the vibrations were enough, but he never heard my voice. For 135 days he lived in his own little world of silence.

Would it have been different if I had had known before he was born?

Would I have done things differently?

I am positive these questions flash through the minds or roll of the tongues of many new parents who have just learned their child was born different. And there is no right or wrong answer. I know I personally live with a whole lot of "maybes".

But that day, in that moment, I felt badly when I realized that we had lost so much time. So much learning for infants happens by listening, what if he never catches up? was a major concern.





Now two years later, he is in the other room marching in a circle, singing along to "Heigh Ho, Heigh Ho". This is his life and his world, be it hearing, deaf or somewhere in between. No doctor, no label, nor testing is going to limit him or define what he is capable of.

My days of worrying about Austin are far from over, but I have come to place of acceptance about his hearing loss. I accept that it will be a life long struggle. I accept that it will often be misunderstood. I accept that it is not the end of the world. I accept that I am doing the best I can. I know this for certain because I myself live with a severe bilateral hearing loss. {I can hear jaws dropping, but that is another story for another day.}


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PS: We'd love your VOTE in support of Sneak Peek At Me over at 2010 Blogs by Latinas Awards! We are nominated in three categories: Health, Kids & Parenting. Gracias!!

A Whole New Mii And A Makeover

Once I found out I was chosen for the Wii Mommies Citizen Journalist Program I began a sick obsession. I now have to admit to you all that I stalked the FedEx trucks in my area for two days waiting for my Wii Fit Plus system to arrive.

I’m not proud of my behavior. But there it is in black & white, I am an obsessive stalker type. Who knew?

Luckily my obsession quickly turned to something else, getting healthy. {More on that later.}

First things first, shopping. Ah, retail therapy.

Yes, before I even received my Wii Fit Plus in the mail, I had made a purchase. I mean, I was going to the store anyway and just happened to find something to motivate me. So ya know…I bought something.

And because nothing tells a story better than pictures, here are some Before and After pictures. Head on over to WiiMommies and you can see the magical transformation for yourself.

{Yeah, I'm sneaky that way!}


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PS: We'd love your VOTE for Sneak Peek At Me over at 2010 Blogs by Latinas Awards! We are nominated in three categories: Health, Kids & Parenting. Gracias!!

Go Dodgers! - Wordless Wednesday

Baseball season is upon us!

Monday night we attended our first {T-ball} game of the season. We watched the "Dodgers" play the "Cubs".



Sophia as she hops onto home plate. {She's such a girl!}




Bella ready to bat. {Look at the concentration}


I'm not sure who won, because "someone" got tired and insisted we head home to bed after an hour and a half. Had this been a REAL Dodger game he would have been out of luck.


Thanks for peeking,

PS: We'd love your VOTE for Sneak Peek At Me over at 2010 Blogs by Latinas Awards! We are nominated in three categories: Health, Kids & Parenting. Gracias!!

Raise Your Sippy Cup

Today could not have gone more perfectly. Austin had his fourth and hopefully LAST MBSS (Modified Barium Swallow Study) this afternoon, and even without a nap {clear meltdown territory} he did absolutely GREAT!!

It has been eight long months since our last MBSS study during which everything went WRONG. All that feeding therapy and focusing on drinking has paid off.





Ladies & Gentleman Austin is cleared to drink thin liquids. I repeat, CLEARED for THIN!!

For those who are confused at the moment. This is HUGE, BIG!!

Read: an EXTRAVAGANZA of Awesomeness!!!

This means we no longer need to fight with the insurance for thickener {they never pay it, by the way.} Our HHC charges a hefty $145 for a case. And more importantly we no longer need to thicken ANY liquids, which is awesome because I am down to my last 5 packets.

Austin is in for a world of shock! He has been on thickened liquids since he was 2 months old. Tonight we will celebrate with some un-thickened Apple juice at a Sophie & Bella's T-ball game.

Raise your sippy cups to Austin *clink*


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PS: We'd love your VOTE for us over at 2010 Blogs by Latinas Awards! We are nominated in three categories: Health, Kids & Parenting. Gracias!!

Some Bunny Told Me About Hershey's Better Basket

My friend Kadi told me all about this awesome project. Hershey's Better Basket is donating $10 to Children's Miracle Network for each blogger who writes a post in support of giving. (You can see the details & rules here).

Last week I wrote about accepting help from others. Today it is our turn to give {virtually at least.}


So without further ado, I am passing this virtual basket along to a few of my favorite people, Katy, Jessica and Liz.


Ladies, Please accept this adorable basket

from this VERY adorable bunny...






Enjoy ladies virtual chocolate has no calories!!! Be sure to pass it along to raise money for him & his friends.



HERSHEY’S BETTER BASKET BLOG HOP RULES

* Copy and paste these rules to your blog post.

* Create a blog post giving a virtual Easter Basket to another blogger – you can give as many Virtual Baskets as you want.

* Link back to person who gave you an Easter Basket.

* Let each person you are giving a Virtual Easter Basket know you have given them a Basket.

* Leave your link at BetterBasket.info/BlogHop comment section. You can also find the official rules of this #betterbasket blog hop, and more information about Better Basket with Hershey’s there.

* Hershey’s is donating $10 per each blog participating to the Better Basket Blog Hop to Children’s Miracle Network (up to total of $5,000 by blog posts written by April 4th, 2010).

* Please note that only one blog post by each blog url will count towards the donation.



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Little Leprechaun - Wordless Wednesday

I'm sure you have some too, you know a picture that you know your kids will probably hate you for showing to others. Well, I have several hundred ;)

As promised, here is another flashback photo extravaganza!


March 17, 2008, Age 4 months








As you can see he was thrilled!!!





I know, I know...quick, someone needs to start a Fund for this child's therapy!


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Into Each Life A Little Rain Must Fall

Worrying about electrical outages is actually a regular pastime of mine, so when I heard about the theme of Mabel's Labels Blogher'10 contest I figured what the heck do I have to lose?

After all I'm a pro at worrying about an emergency outages. As a matter of fact, I am preparing for one as we speak. True Story. Our power company has informed me of a planned power outage this Thursday for about 9 hours. So far the preparation has been a bit of a nightmare, in and of itself.

But I digress, where was I?

Oh yes, Mabel's Labels wants to know how I would handle to following situation:

Mayday! Mayday! Electrical storms are coming TONIGHT to wipe out the Internet (perhaps forever). You don't have much time left to write about your passions: what do you want to say to the blogosphere in 300 words or less?

First I must warn you, I'm a wordy gal, but I am going to give it a shot. Below is my entry.

*****

Dear Online Friends,

I’m going to miss you more than you can imagine. I hope I don’t offend my family or real life friends by admitting this, but if this storm is the end of the blogosphere I have to be honest, right? So mostly I’m going to miss the Mothers I have met and connected with through Special Needs parenting forums.

These are the women who "get me". These are the women I have formed a lasting bond with, women whose own children, like my son, rely on power and medical technology to live. I, in turn, rely on them.

These friendships have been delicately woven over years; through countless surgeries, hospital stays and shared tears for many Angels that have gone before us. I'm not sure I’ve ever told you ladies this, but I need you. You may come here for information and enjoy reading about Austin, but the truth is I bring you here to sustain Me.

I need your positive energy, guidance and inspiration. I'm going to miss every one of you. I'm going to miss the information we share and our collaboration. I'm going to miss the support, but you will always have my undying admiration.





More than a little rain has fallen into each of our lives, this storm is nothing compared to what we each endure and worry about daily. Know this, I will not allow this storm keep us apart for long.

I will find a way to be reunited with the funniest, most caring, generous group of women I have ever known. So while the Internet may be gone after tonight, I will not. You will not be lost or forgotten. Know that I'm here thinking of you, praying for you and working on a solution. That's what friends do.


*****

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Mom Interested In Cloning Experiment

Today is a going to be a busy day. The AM Nurse just called out. Time to get crazy since I had serious plans for this morning, isn't that always the case?

In any case, I have a very fitting post about the chaotic schedule of a Special Needs Mom up over on Tammy & Parker's blog.

This morning I have a LIVE radio show at 1PM EST/10AM PST for a new program I am participating in. I have been chosen to a be a Wii Mommies Citizen Journalist. Luckily they are okay with kids in the background so Austin will fit right in. My Wii Fit Plus arrived this week and it is kicking my butt. {In a good way.}

My friend Kadi, over at Girly Gazette was looking for a recipe with Spinach that her 7 kids would eat. I sent her over a yummy recipe for Prejesnas. The kids approved, so my Aunt Rebecca's recipe is posted this week. If you have some time to make a great Vegetarian dish, check it out.

This weekend my friend Libby is visiting form Puerto Rico and I am looking forward to a night off tomorrow. Yay, for babysitters and Nurses that show up. {Of course now this plan may be in jeopardy if she calls out tomorrow too!}

Oh, I am interesting in cloning if anyone has any ideas on that.

Time to get busy.


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Morgan's Wonderland, My New Happy Place

So I am sure you all remember when I ranted and raved about the unhappy person at Disneyland recently. It was me!

It's time to turn the tables. Allow me to RAVE about a new theme park designed specifically for Special Needs families. How awesome is that? It "almost" makes me wish I still lived in Texas just so we could visit.


Morgan's Wonderland is destined to be my new happy place.

It opens next month and get this, ALL visitors must register to go. That means no long stressful lines, but a park that is expecting YOU!

Mission Statement: To provide a park that will nurture the minds and bodies of individuals with special needs and their families.

Vision Statement: To create and maintain a park that defines the possibilities of an accessible, fun, and unique recreational experience.


Can I get an AMEN?

But wait there's more...


As well as being entry and exit controlled, the park also "features RFID locator wristbands and touch screen display monitors so parents and caregivers can keep track of family and friends."


Did your heart just leap for joy?


At the risk of sounding like an infomercial I could go on and on, but you can read all about the fancy features of this 25 acre park here, and trust me it gets better!!

One additional feature that I wanted to point out that I think is just AWESOME is something that will help kids like Austin who have heat intolerance.

"Almost every activity within the park is shaded. There are also be several shaded rest stops, picnic areas and well located water fountains and restrooms. In addition, many of the facilities and pavilions have water misters for added comfort." Alleluia!





Make your next family vacation destination Morgan's Wonderland in San Antonio, Texas and enjoy it for yourself. This is more than just one family's dream come true, it is a miracle realized for all families with Special Needs.

Grand Opening is just 30 days away, April 10, 2010. For more information or to make a reservation please visit:

Website
Facebook
Twitter


Disclosure: I was not paid or compensated in any way for this post. I am just a mom who is over the top excited about a place where all kids can be treated equal. Take that Disney!


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Chubba Bubba - Wordless Wednesday Flashback

Every once in a while I like to take a peek back into my photos and share. This is one year ago today, look at the chub!





Be sure to check back next Wednesday for another flashback photo op. Oh so funny!!!


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Do Unto Others

I’m not good at asking for help. There, I said it. I have always had an independent streak and until now, it has served me well. The problems come when…well, when a problem comes. I usually chose to handle things on my own in a low key fashion. Despite the fact that I now blog Austin’s life for the world to see, I am actually a very private person. It’s true.

Simply put being the single mom of a medically complex child is stressful, no two ways about it. Major medical decisions are mine and mine alone. Medical debt is mine and mine alone. Raising this child to be a loving, well adjusted member of society – that's all my doing. Not that the responsibility is all mine, but the day-to-day reality is.

I have to admit that quite often I am overwhelmed. {Not an easy thing for this gal.} I know I am not alone, I know there are other single moms or families struggling to raise a family on a shoestring budget or with overwhelming medical expenses.

Over the past two years, on more than one occasion, support has come from an unlikely source. Total strangers.

Completely by surprise I have been approached by people who have heard of my situation and wanted to offer their assistance. Call it divine intervention, call it lucky, I call it blessed.





Help arrived in the form of a gift card for groceries, clothing, and even manual labor to repair a tornado wind blown fence. In each case the support was a welcome blessing to this “I-am-Super-Mom-hear-me-roar” kind of gal. The best part aside from the actual offer(s), is knowing that the motive is nothing more than to help relieve me of some financial or emotional stress.


Do you have a utility bill that needs to be paid?

Do you have an unexpected and expensive car repair?

Do you have a medical bill hanging over your head?


While I was fortunate enough to have people seek me out and offer me a helping hand; there is no shame in seeking out help for yourself or your family. Organizations looking to help Special Needs families are out there, you just have to look for them.

I have found a handful of resources that you might be interested in checking out for yourself or someone you know that may be in need.


Aubrey Rose Foundation: Grants available to assists with medical bills not covered by Insurance

Snappin' Ministries: Special Needs Parent Support Network, offers financial, spiritual and social resources.

First Hand Foundation: Offers assistance with treatment or equipment needs, based on funding criteria.

Jessica's Hope Chest: A foundation for critically ill children offering financial assistance and counseling.

Modest Needs: A grant based program for families or individuals in financial need.

Most of these programs are privately funded programs and may be income based or have "medical-only" criteria, these are NOT wish granting programs. Also, keep in mind that most of these organizations are available for financial support, as well as emotional support.

Do you have a story to share?


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Celebrating Women

Today is International Women's Day March 8th "is a global day celebrating the economic, political and social achievements of women past, present and future."

The UN theme this year is: Equal rights, equal opportunities: Progress for all

All over the world today women will be celebrated for their achievements and somewhere tonight a little girl is daring to dream of bigger and better things.

Last night a woman did something that has finally been recognized, and it only took 82 years! Katherine Bigelow won an Academy Award for Best Director and, to top it off Best Picture of the Year for her work on 'The Hurt Locker'.

I'd say that's a step in the right direction for Hollywood.

Earlier in the evening, Sandra Bullock thanked "the moms that take care of the babies and the children no matter where they come from. Those moms and parents never get thanked," in her Best Actress acceptance speech. It was another great moment for women, in particular for mothers, to be recognized.





Not all of us are World leaders, Hollywood movers & shakers or even remotely famous, {except to the little people who look up to us} but we do make a difference.

Please take some time out of your day to think of and thank a woman who has inspired and helped make you who you are today. I am guessing they may not get thanked enough as well.


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I Didn't Make The Cut

Feeling that my writing mojo needed a day off I have decided to delight you with pictures.


It was a beautiful day so we went outside to play Golf.





As it stands, Charlie Woods has nothing to fear.





It appears Austin prefers Football or Swords to Golf.





Why do I hear a collective sigh of relief?





We stepped in doggy poo. {Sorry, no pictures available}





We pretended it was a sand trap.





I have learned my lesson, tomorrow I will stay inside and write.





I hope the Nurse brings herself an extra pair of shoes.


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Where's Mr.Goodwrench When You Need Him?

My car died on me yesterday while we were on route to the hospital. Don't worry it was a weekly routine appointment, not an actual emergency. Well, except for the car...that was an EMERGENCY situation.

As we exited the freeway the nurse noticed that she could see smoke from the engine. Niice! So as I glance at my dashboard sure enough "H", we are overheating. Had this been a medical emergency I would have been on my game. Tracheostomy pops out, I'm your gal. Smokey car, huh?

And of course I don't have AAA anymore, it's one of the "extra" things I had to cut from my single mom budget over a year ago. A year with no car emergencies is pretty darn good. Right?

So we're overheating and I have the nurse call my brother for some pointers. We are only a few miles from the hospital and our appointment. Just how much of an emergency is this? Apparently it's a pull over immediately situation, now I know. {I am sure there is a mobile phone app for this situation, but in the meantime my brother instructed me to stop, drop & roll.}

We waited in a gas station area for him to come and assess the situation. He determined I had lost coolant and asked me for a funnel. Yeah, the one thing I don't carry with me. So I gave him the only implement that I had...





Now aren't you jealous you don't carry medical supplies with you too?

Long story short, the radiator was shot so the car was eventually towed home. Today a mobile auto repair dude came and replaced both the radiator and the thermostat.

The moral of the story: If your goes kerplunkity-plunk in a less than desirable area of Downtown LA, make sure it is on you brother's day off, your mom is home to use her AAA for towing, you carry an extra 60cc syringe, and pull over next to a library with metal bars on the windows so the kidlet can run around inside. It keeps him away from the homeless guy and the panhandlers.


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Why I Blog

Along the lines of "how do you do it?" is "why do you blog?"

Not a bad question at all, unless the person asking squints their eyes, cocks their head ever so slightly and inquires "so then...whyyyyyyy do you blog?"

This conversation is usually preceded by at least one of the following questions:

"Do you do it for your family?" That's why I started, but No. They get enough of me.


"Do you do reviews and get cool products?" No. Although, there was that one time.


"Do you do giveaways?" No. But, I do enter and love to win.


and then the biggie,


"Do you get paid?" Not yet. {Anyone, anyone?}


"...so then whyyyyyyy do you blog?"


It's simple. I blog for Awareness.

Okay, you got me, I blog for awareness AND Girl Scout cookies. No, not really that last part was my lame attempt at getting some cookie swag. {I prefer Tagalongs or Thin Mints, please.} I would not blog for cookies. Only. Cookies and a car, for sure. So there you have it. I blog for awareness {possibly cookies, definitely a car.}

Or should I say blog for "a rareness." I blog for causes and people I believe in.

Can you think of anything better, than to spend my free time {and I use that term loosely} connecting with a community of people who cherish my child and support me?





I blog so that people who might never have heard of Children's Craniofacial Association, The Global Genes Project or have thought to add a CPR app to their mobile phone will take notice. Ta-da! That's awareness.

So whether it's cute Christmas pictures, struggling with feeding therapy, complaining about H1N1 or someone rude...you see that, that right there, that's called awareness. This blog is riddled with it. I'm sneaky like that.

I'll be honest some days it feels as if I am pushing a boulder up a steep hill, but when I see this:





I know I made it happen. I know that for a brief moment I reached someone who believes in me, or in my cause. Either way it's a good feeling to know that someone is in my corner.

So okay you got me again, I blog to feel good. There I said it. Happy?


Thanks for peeking,