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HOME OF THE STORM KIDS! Last Updated: Apr 01, 2010  
 
Tony
Kylie
Brayden


LOVE seeing this smile!!!

Kylie and Santa 2009

so cute!!
Home        Pictures        Stories        Family        Guestbook

 

 

Welcome to Tony, Kylie and Brayden's Home Page! Stop back soon- we update often! DON'T FORGET TO SIGN THE GUESTBOOK TO LET US KNOW YOU HAVE STOPPED BY!!

2010 CHD Awareness Video 

 
 

CRISIS Pictures, Images and Photos Pyzam Family Sticker Toy  
 

  

 
Life  
 

 10-27-08 Video clip
 

Please make a commitment to donate life!

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A DAY FOR HEARTS : Congenital Heart Defects Awareness Day - Click here for details  

Help Spread Congenital Heart Defects Awareness   

 

 
     

 

   

 

 

 

 

Awareness Ribbons Customized - ImageChef.com   
Please sign this petition to help raise awareness for Congenital Heart Disease!
Online petition - Congenital Heart Defects (CHD) awareness in the Media!!    

An article I recently found about the type of surgery Tony had (his first Open Heart) the unifocalization.  He was not a candidate for the single stage repair discussed because of his pressures and unique anatomy- but its interesting none the less.


 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

JUST ONE TREE
If I were to plant a tree to symbolize
the journey of a child with a disability...
I would not plant an Oak tree
For the journey is not always a long one,
Nor would I plant a Weeping Willow
For tears do not always fall,
Nor would I plant an Apple tree
For the journey is not always sweet or fruitful.
I would plant instead a Plum tree, small and sturdy
For the Plum is the symbol of courage,
It and it alone dares to send out it's blossoms
while snow blankets the ground
and spring is only a promise
not a certainty
~by Diana West

 

 

 

 

 
Bringing Awareness to Congenital Heart Disease
 

 
 
 
There is a feature at the bottom of this home page that allows you to sign up to be notified by email when our webpage is updated!  Take a moment to fill it out now so that you don't miss out on the latest news and photos!

FEATURING: STORM FAMILY March 07-May 07

 
   
 
 

 

 

WELCOME TO HOLLAND
by
Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.


It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Celebrating Holland - I'm Home

I have been in Holland for a while now. It has become home. I have had time to catch my breath, to settle in and adjust, and to accept this different trip than I'd planned.

I reflect back on those years when I first landed in Holland and remember clearly my shock, my fear, my anger. In those first few years, I tried to get back to Italy as planned, but Holland was where I was to stay. Today, I can say how far I have come on this unexpected journey, how much I have learned about Holland. But it has been a journey of time.

I worked hard. I bought new guidebooks. I learned a new language, and I slowly found my way around in Holland. I met others whose plans had changed like mine and who could share my experience. Some of these fellow travellers had been in Holland longer than I and were seasoned guides, assisting me along the way. Many have encouraged me and have taught me to open my eyes to the wonder and gifts to behold in this new land. We supported one another, some have become very special friends, and I have discovered a community of caring. Holland isn't so bad.

I think that Holland is used to wayward travellers like me and has become a land of hospitality, reaching out to welcome, assist, and support newcomers. Over the years, I've wondered what life would have been like if I'd landed in Italy as planned. Would life have been easier? Would it have been as rewarding? Would I have learned the important lessons I benefit from today?

Sure, this journey has been challenging and at times I would (and still do) stomp my feet and cry out in frustration and protest. And, yes, Holland is slower paced and less flashy that Italy, but this, too, has been an unexpected gift. I have learned to slow down and look closer at things, with a new appreciation for the remarkable beauty of Holland. I have discovered that it doesn't matter where you land. What's more important is what you make of your journey and how you see and enjoy the very special things that Holland has to offer. I have come to love Holland and call it home.

Yes, I landed in a place I hadn't planned. Yet I am thankful, for this destination has been richer than I could have imagined.
 

 

 

 

 

 

 

    Image Hosted by ImageShack.us        Image Hosting by Picoodle.com  

Help Spread Congenital Heart Defects Awareness  

(click on the picture above to learn how you can help!)

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If you have found this page because you are a parent of a heart baby, and particularlly if you are from the Pittsburgh area- consider joining our new Yahoo Group: (Open to all parents of heart children!)
Click here to join heartparentsofpgh  
Click to join heartparentsofpgh
   
Photo Sharing and Video Hosting at Photobucket

Our cousins Will and Lindsay have their own webpage now! Check it out:

www.babyhomepages.net/willlindsay

 

Our friends- the Balkes' family homepage!

www.balkenet.com/family    

Our cousin Emma's webpage:

www.babyhomepages.net/emmasmith

Our heart friends- The Campbell Family:

www.campbellstory.com

Evan's Webpage:

www.evansfight.org

Our heart friends- the Ansell Family:

www.babyhomepages.net/theansellfamily

Our heart friends- Brian Kelly family:

www.babyhomepages.net/babybrian

My friend Jenn's page for her son:

www.babyhomepages.net/dietrichsmiles

New Heart Friends, the Kennedy family:

www.babyhomepages.net/kennedytwins

 

 

 

 

 

 

   MEDICAL STUFF:

Information on the DiGeorge Syndrome that Tony has (cause of the heart problems)

http://www.chop.edu/consumer/jsp/division/generic.jsp?id=74634  

For families of children with DiGeorge Syndrome:

 

Click here to join c22c  
Click to join c22c
  

 


Here is a link for some info on Tony's heart condition.

http://www.emedicine.com/ped/topic2898.htm

WARNING! Its very technical. (Except toBill! ha ha ha!)

This is an easier site:

http://pedsccm.wustl.edu/All-Net/english/cardpage/operate/TOF/tofwPA.html


Tony's also had a fundoplication done- to help with his reflux, you can find info regarding this procedure at this site.

http://www.fundofamilies.com/index3.htm


 

From the STORMS: Buffy, Bill, Tony, Kylie, and Brayden

ImageChef.com - Custom comment codes for MySpace, Hi5, Friendster and more  

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August 2005                                   June 2007
  
June 2008
                 
Generate Your Own Glitter Graphics @ GlitterYourWay.com - Image hosted by ImageShack.us  

Lilypie 5th Birthday Pic Lilypie 5th Birthday Ticker

Lilypie 3rd Birthday Ticker

 

Stories


4-1-2010:  Tomorrow is World Autism Awareness day!  I'm encouraging all of my family and friends to show their support for Autism Awareness  by wearing BLUE for Autism TOMORROW, Friday April 2nd!   THANKS!  Buffy

3-1-10:  Once again, it has been too long since I've updated the kids webpage!!  I need to do better.   Brief updates: Tony had his 5 year checkup and has only grown 1/4 of an inch in the last year and gained about 1.5 pounds.  Unfortunately, although he has grown a bit, its not at the rate expected for a boy his age.  I...
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1-19-10:  I'm pretty sure that most of you are following Tony's progress on my Facebook page these days...but for anyone who may not be on FB yet I'll give a brief update and for those of you who ARE on FB, I'll give a little more info here as well.   So, Tony started to improve a bit on Sat. and they were able to wean hi...
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1-16-10:  For those of you who have not yet heard, we had to take Tony to the ER again yesterday morning.  What started out as a harmless little wheezing and probable ear infection on Thursday, snowballed into massive symptoms overnight Thursday into Friday morning.   When I got Tony up on Friday morning, he was breathing very...
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1-14-09:  Well, we started potty training process with Tony balogna...just days after his 5th birthday...day one we had several accidents and no potty success.  By day 2, my little man had IT DOWN!!!!  On day 2, he went pees on the potty 6 times!!!  Yes, 6 times!!!!!  He only had one accident and took a 2 hour nap with...
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1-6-2010:  I know as I say this, it sounds quite cliche, but I can NOT believe that Tony and Kylie are 5 years old today!!!!   I have been teasing Kylie for weeks that "she is not allowed to turn 5" and she honestly believed that I had the ability to decide if she got to turn 5 or not...so, in typical parental fashion...I milk...
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Pictures


Happy Birthday Kylie & Tony! Ronnie misses your teaching classes. Can't Wait to see you again! Wish we could join you for your party but MeMal is sick....
Great job Tony on the potty training!
-Love, Uncle Ronnie     Jan 14 2010
I love you uncle bill aunt buffy tony kylie and brayden. I miss you and hope to see you the next get together at memals house.
-Shannon Baker     Dec 30 2009
This is a very hard thing to deal with i can't even imagine but i'm here to say i'm with all of you 100%
-Henry Hawkins     Dec 30 2009
Happy new year and merry christmas This site has changed my life thank you so much


-Henry Hawkins     Dec 30 2009
Merry Christmas and Happy New Year to you All
I know Santa was good to the kids

Love
-Aunt Kathy Smith     Dec 28 2009
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