Saturday, March 31, 2012

Easter Eggstravaganza

Chloe had a great time today at the Easter Eggstravaganza in Garden City.  She got a special visit from the Easter bunny and her brothers went hunting eggs and brought some back for her.  We got to see lots of family and friends while at the park.  Mommy and Kysia set up a booth to raise awareness for Rett Syndrome and promote Chloe-Palooza.  Many people came by and showed us love.

It was good times!

Of course all that was well and good until nap time neared, then Chloe was no longer interested in all the excitement.  It was time to find a quiet place to rest.  There is only so much attention she can take in one day.

-----All this being cute can really wear a girl out, you know?-----

Time to locate Duckie (Chloe's most prized possession and friend) and head toward her comfy bed for a little R & R.

Thursday, March 29, 2012

Come play with me at the zoo

Chloe has a new favorite toy.  It's one of those noise makers that you buy for everyone else's kid but hate to have in your own house because it makes the same sounds and plays the same songs over and over and over and over.   It has lots of primary colored buttons with animals all over them.  Supposedly, it's like taking a trip to the zoo for a two year old.  Push on the red button with the penguins face and hear "I'm a tiny little penguin, waddling here, waddling there."  You know the kind of toy I'm talking about.

Chloe absolutely friggin loves this thing.  We hear it so much that I find myself whistling its tunes during my day at work. --- Don't judge me, you've done it too, admit it.---  What I realized recently is that with all the different functions of this toy, there are two messages that we hear nearly 10 times as often as the others.  "I'm a very friendly parrot.  Shouting out loud for all to hear."  and... "I'm a big and tall giraffe.  Standing so high I'm touching the sky!"

Now this kind of thing might just be coincidental if our two year old daughter was running around the house getting into everything and learning the word "no" like every other two year old in between the times she is asking mom and dad about the world around her.  But she's not.  Two things she can do and she is proud of:  stand (as long as she is holding on to a table or something) and shout.  There isn't a whole lot of other skills she has but she has these down pat and she is proud of herself and we are proud of her.

Maybe it IS just another annoying toy...but maybe it's more.  Maybe our little girl is living vicariously through her interactive zoo noisemaker the way grown ups live vicariously through books, movies and television.   "I'm a big and tall giraffe.  Standing so high I'm touching the sky!"  Maybe this is the only thing she has figured out how to use to give her a voice. We are making tiny baby steps toward her being able to use some type of communication device but the progress is very slow.

We eagerly look forward to the day when she can have some form of communication with us.  Until that day I think I'll enjoy every time I hear "I'm a very friendly parrot.  Shouting out loud for all to hear."

Wednesday, March 21, 2012

The REALLY LONG letter

For those who don't know our story, and those who have heard about Chloe-Palooza but wanted to read more about the WHY of Chloe-Paoolza, my friend and fairy GodMother Laura has asked me to post this really long letter out to share our story. So, sit back, grab some popcorn, and tissues and have at it.

To whom to may concern,
    My name is Jessica Auner, my situation is a bit long and complicated.  I'll start from the beginning. Five years ago my husband and I became the first in our immediate families to own our own home. It is a small 3 bedroom 1bath block home on a corner lot in a quiet neighborhood in Garden City. Shortly after we bought our home we discovered that the crawl space below the floor was filled with standing water and 4feet of mud. We drained the water fixed the  problem and waited for the mud to dry. Little did we know that the foundation was weakened and that now we were growing mold under the house. Little by little over the last 5 years the joists in the floor have given way until now the entertainment center is suspended from the ceiling to make sure it doesn't topple over and several rooms bounce like on a trampoline. The unevenness of the floors has caused the walls to crack and that helped us discover that there was lead paint on the walls. We saved where we could and just when we had a bit of money together to fix the floors we found out I was pregnant with number 3, our first girl. Complications started about 6 months into the pregnancy and she was born a month premature weighing only 4 lbs. By 11months old we were beside ourselves with worry because she has missed all her milestones. She could not sit up or hold a bottle, crawl or do anything her two older brothers did at that age. So the testing started. We meet our $3,500 per person deductible in one month. January came and by February we had met it again. Finally on August 30th we received a diagnosis over the phone from the geneticist in Augusta. Rett Syndrome. Chloe would never walk or talk, she would have breathing problems, seizures, ataxia, we would watch her lose all purposeful hand use and eventually she would die. We were devastated. But you can't stop so you keep going on. We applied for and won Social Security Disability and Medicaid. We were told this would help pay the deductibles and the copays. We didn't realize that in order to keep it my husband could only make $4,000 a month before taxes. He took a $500 pay cut and stopped getting over time. 
     Seeing us struggle my aunt made us a very generous offer. She would give us an empty lot around the corner from us and she would be the banker for us for $50,000 to build a house that was safe and healthy and most importantly would adapt to Chloe's new lifestyle. We have an architect that is willing to draw up the blue prints and a printing press willing to print them. My husband is a licensed plumber and we have several friends in trades. We have also found a crew willing to frame the house for rock bottom price. The only problem is my aunt has told me we need $30,000 before we can begin building.
        After much prayer and thought we decided to have a fund raiser. Thus Chloe-Palooza was born. It will be on May 5th from 11am to 5pm. There will be live bands, a car show, a silent auction, vendors, a raffle, bouncy houses, a rummage sale and possibly an art show (though, I have yet confirmed that).
         I'm a mom, I just want a house my daughter can use her gait trainer in while she can still use it. Using it actually prolongs her life by keeping her mobile but she can not use it in our house. And when she can't,  I want to be able to care for her at home. I want my son's allergies and asthma to go away and give him relief when he's in his own home. I want my husband to see the light at the end of the tunnel isn't a train about to hit us with the weight of the world he carries on his shoulders. And I want to go to bed at night without the thought that I can't do a good job of providing their needs.
         I am in need of so much, advertising, sponsors, volunteers, prayer, wisdom, you name it I probably need it. If you can not help me I completely understand and I am very thankful you took the time to read this novel. However, if you can help me, my number is (912)965-9827 and my Cell is 596-6473. 
Jessica Auner  

Tuesday, March 6, 2012


I just wanted to update everyone who reads this blog about the upcoming fundraiser for Chloe. On May 5th we will be having Chloe-Palooza!!! You can't just say it you have to boom it. CHLOE-PALOOZA!!! It will be at the Garden City Rec Center in Garden City Ga from 11am to 5pm. We will have bands, a car show, bouncy house, vendors, a silent auction, a raffle, a rummage sale and hopefully a art sale. The reason is to help with our housing situation. We have a lot donated to us and my aunt is willing to be the banker for $50,000 for us to build a house, we only need $30,000 more. A lot I know, but God is opening doors and providing in ways I never would have thought possible so I know the goal is obtainable. Please come down and support us and Chloe in this venture. And if you can't make it there is always the little donate button to the right. Push it... LOL Anyways, we desperately need prayer and an encouraging word or two. Thanks! Updates will be more forthcoming.