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Arnold Palmer Hospital
@ArnoldPalmerMod

Posts: 310
Joined: May 22, 2014

Thank you for joining our Congenital Heart Defects Group @nknynative @vilma422 @nholborn [...]

Posted by @ArnoldPalmerMod, Dec 15, 2014

Thank you for joining our Congenital Heart Defects Group @nknynative @vilma422 @nholborn @ashmatt4 @wills07!
We would love to get to know you better by telling us a little bit about why you are interested in this particular group and how you hope to connect with other patients and families within the group in the comment box below. We look forward to connecting with you further!

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ashley h.
@ashmatt4

Posts: 1
Joined: Dec 06, 2014
Posted by @ashmatt4, Dec 15, 2014

Hi Carly and Thank you for the welcome!
My name is Ashley and my son Logan just turned 1 in November. He was born
with Tetralogy of Fallot and had his repair in April at 5 months old there
at Arnold Palmer by Dr. DeCampli. He is doing wonderful, growing and
getting stronger everyday. My husband and I are so blessed to have such a
fighter and have all the amazing Dr.\’s. Surgeon, staff and support we have
had over this past year, but we are always looking to connect with others
who have had similar experiences, face the same challenges and those who
can spread positive awareness and encouragement. We also have a 6 soon to
be 7 year old boy named Landon, who has been an amazing big brother and
continues to be his little brothers best friend.


Arnold Palmer Hospital
@ArnoldPalmerMod

Posts: 310
Joined: May 22, 2014
Posted by @ArnoldPalmerMod, Dec 16, 2014

Hi @ashmatt4 – Thank you for sharing with the rest of the group! We are so happy to hear that Logan is doing well after his surgery – he is a true fighter indeed. We hope you find the support and encouragement you are looking for as a part of this group. We look forward to connecting with you further!


Nicole
@nknynative

Posts: 1
Joined: Dec 09, 2014
Posted by @nknynative, Dec 15, 2014

Hi , I am the mom to 5 great kids, but my #5 Madelyn came into the world making sure to get noticed. At 28 weeks she was diagnosed with Wolff Parkinson White syndrome in utero. Her heart beat was at 285 in utero. Only at my demand was I transferred to a nearby hospital who could handle my problem. I spent the next 6 weeks on a cocktail of medication to control her condition. At birth as soon as the cord was cut she went back into SVT. A rush to the NICU and a week of medication trial and error finally had symptoms controlled. We have spent the last 6 years finding medications that worked until recently her labs showed her thyroid being affected. She is currently off medication and we are monitoring her episodes and discussing surgical ablation…. And worse case scenario a pacemaker. I joined this group in hopes of meeting other WPW families and hear their experiences. We live near Tampa and our doctors work out of All children\’s and St. Joes…..please feel free to email me with your experiences or for advice if you are new to this condition …..my Madelyn is my special child who made sure from early on that she would make her mark in our lives …..
Nicole


Arnold Palmer Hospital
@ArnoldPalmerMod

Posts: 310
Joined: May 22, 2014
Posted by @ArnoldPalmerMod, Dec 16, 2014

Hi @nknynative – Thank you for sharing your journey with the rest of the group! Madelyn sounds like a true heart warrior – fighting through every obstacle that comes her way. We recently wrote a story on Cameron, who underwent a surgical ablation in December of 2013. You can view his story here: http://myilluminateblog.com/livingtothebeatofanormalheart/
@h_gove – would you happen to have any advice for Nicole, as they are currently discussing surgical ablation for their daughter, Madelyn?

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