Meagan & Aj's Story~

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Looking at her run around no, it is hard to believe that three years ago Megan was at home on continuous oxygen awaiting open heart surgery. Megan was born in July 2004. She is the little sister of AJ and Alex and she was born with a combination of rare congenital heart defects. Her diagnosis is Ebstein’s anomaly, repaired ASD, and non-compaction of the left ventricle. After spending her first three weeks at Children’s Hospital Boston, we were able to bring her home on oxygen. She remained on continuous oxygen until surgery. In her first ten months, Megan spent 32 days at Children’s Hospital Boston. Her doctors call her a miracle – which of course we already knew! Megan will continue to be monitored to see how her heart responds and changes as she grows. So far, so good. She continues to pleasantly surprise us and her doctor’s with her progress, strength, and her ability to recover and persevere. Except for taking five medications a day and a few extra doctors appointments, we are fortunate that she leads a very normal three- year old life.

Megan is an independent spirit with a smile and bright blue eyes that light up the room. She engages you instantly. She adores her big brothers and the feeling is mutual. She loves sitting quietly reading a book but then will spend an afternoon chasing her brothers. She LOVES her babydolls but will jump right in to race cars around the family room floor. I am amazed by her ability to find a thousand different ways to play with a toy and to try anything. If she had her choice, she would spend the whole day outside - digging in the sandbox or playing in the neighbor's playhouse. She doesn't stop!

She takes after her big brother AJ - we always knew that Megan and AJ had a special connection. Recently, we learned that Megan’s oldest brother also has a mild form of Ebstein’s Anomaly and the same non-compaction as his sister. Gratefully, he is completely asymptomatic and at this point, but will continued to be monitored. It certainly hasn’t slowed him down yet – he loves soccer, t-ball, reading, Legos and is thoroughly enjoying his year in first grade!

We will be forever grateful for the capable and compassionate care that Megan, AJ and our family has received from Childrens’ Hospital Boston. We pray that they will not require further intervention any time soon, but feel fortunate that they are being monitored and cared for by the amazing staff at Children’s

 Aj & Meagan age ?~

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