| Last Updated: Oct 06, 2008
Bill and Kylie 9-22-08 |
Kylie and Daddy enjoying bday cupcakes! |
Tony and Kylie first day of preschool 9-2-08 |
Tony first day of preschool 9-2-08 |
Kylie first day of preschool 9-2-08 |
Kylie, Mommy and Daddy at waterpark! |
Marcus swimming |
Kylie and Marcus racing! |
Kylie "swimming" |
Mommy and Kylie on the "big slide!" |
Mommy and Kylie |
Kylie and Marcus under the waterfall! |
Kylie and Marcus swimming! |
racing again... |
Kylie and Daddy on the "big slide"! |
Kylie and Daddy |
so cute! |
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Storm Family June 1, 2008
Donate to the Tony Storm Fund:
We have decided to start a fund to help us defray some of the expenses associated with Tony's various health issues and needs. Beyond that we hope that we can use this fund to help us to be able to purchase some of the various equipment/special needs items that are constantly being recommended to us to help Tony, but which are excessively expensive. Finally, there is always a great deal of stress on Bill and I in planning for the "what-ifs" and the financial aspects of those "what ifs" while still trying to provide a good life for our children in the present...we are hopeful that a fund such as this will help us to plan for those "what-if" moments and relieve some of the stress that we carry along with that. I plan to leave this donate button as a permant fixture on this webpage (unless we hit the lottery!) and while we do NOT want anyone to feel it necessary to donate, we would like to express in advance our most sincere gratitude for any help that can be provided.
THANK YOU!
5-22-08 NEW VIDEO CLIPS!
Brayden playing peek-a-boo
Kylie singing her Dora song
Please make a commitment to donate life!
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
Upcoming doctors appointments:
Due to be scheduled- next dental Evaluation
August 27th- Tony's CVS appt in Wisconsin
August 08- Physical Medicine Appointment
March '09- Tony's eye exam
Summer 09- Tony's next heart cath
October 08- Tony's next cardiology appointment.
To be rescheduled- Next Endocrinology appointment
School and therapies- Mon-Thurs. starting Sept. 2nd
July 09- Brayden's next hearing evaluation
August 19th- Tony's neurology appointment
October 08- Braydens 2 year well-visit
TBD- Brayden's next feeding eval
Sept. 2nd- Kylie starts preschool Mon-Thursdays mornings
Sept 8th- Brayden starts in toddler class/therapy Mon & Tues. mornings
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.
(click on the picture above to learn how you can help!)
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 to join heartparentsofpgh
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10-6-08: Just when you think you're in the "clear"...Tony had a rough night again last night and woke up feeling much worse again this morning. So...off to the pediatrician we went. This mornings diagnoses included: 1. Double ear infections 2. Bronchitis 3. He believes the start of
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10-5-08: Well, I took Tony in to be re-checked at the urgent care around noon today and they rechecked his pulse-ox which was now 92% and listened to his lungs which they reported sounded MUCH better. He still had a slight fever, but he is a MUCH happier boy today- up and about, walking around
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10-4-08 (second update): Well, Tony's lungs seemed to sound a little worse as the day progressed and his fever got higher so we took him into the Urgent Care this evening and his pulse-ox was lower than usual at 70%-88% when we got there and then got up to 91% by the time we left (he's normally
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10-4-08: HAPPY 5th BIRTHDAY COUSIN WILL!!
Well, I have good news and bad news to report today. I always like to start with the bad and end with the good- so here we go... Tony's nurse that we had on Thursday hooked up his extension peice to the wrong port. He has two ports- one is a &
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9-28-08: Just a quick note to give credit where credit is due...Bill not only survived the weekend without me, but he and the kids did amazing! He and Nurse Linda cleaned up the house, he managed to mow the lawn AND reported that "the weekend wasn't bad at all!"
I had a great t
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9-25-08: Just wanted to share these really cute graphics that I had made online- I think they are adorable, but I'm biased! LOL
Other than the graphics- I'm heading to Pittsburgh for a get-together with some girlfriends from college PITT days this weekend! I'm so excited
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more stories
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Have a safe trip! Prayers are coming your way that Tony makes a speedy recovery and is all better before you get home.
-Love, Margie Oct 06 2008
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Hi Storms,
I hope you don't run into this kind of problem again with Tony's ports! Have fun in Jamaica, enjoy the time away from the kids. I know you'll miss them, but you need time for yourself too. Love and prayers,
-Jess Pettigrew Oct 06 2008
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Thank goodness I wasn't Tony's nurse on Thursday! Although, this would not have happened if I hadn't taken a day off! I'm going to go over and check on Tony while Bill & Buffy are on vacation and put in my 2-cents worth for the sweetest kids I know!
-Nurse Linda Oct 04 2008
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Buffy,
I LOVE the new graphics! Happy belated B-day Bill. I bet you're all really happy to be home again!
Love and Prayers
-Jess Pettigrew Sep 26 2008
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Happy Birthday Bill! Glad to hear your electric is back on.
-Christine Sep 22 2008
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