Big Hearts to Little Hearts Walk

Dear Family & Friends,

A little over a year ago, Lee and I learned of our baby's complex
congenital heart defect. We felt like our world came crashing down.
Through endless conversations with family, friends, doctors, nurses,
and other heart families, we began our journey of hope. Last October, on a beautiful day, we joined family and friends to walk in an effort to raise money for the Cardiac Center at CHOP. Fast forward a year and we are
SO proud to walk with our angel Lily. Please consider joining us as
we walk for a cause that is so dear to our hearts.

~Congenital Heart Defects are the #1 birth defect in the United States
~About 1 out of every 100 babies are born each year with some type of Congenital Heart Defect. (approx. 40,000/year)
~Nearly twice as many children die from Congenital Heart Defects in the US each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for CHD. Source: Children’s Heart Foundation


Follow the link to register or donate.
Big Hearts to Little Hearts Walk- October 3, 2010

http://www.bigheartstolittlehearts.com/

See you on the boardwalk!

Much love,
Laura, Lee, and Lily

If you can't join us for the walk, please consider donating to this worthy cause!

Thank you

http://www.firstgiving.com/lauramcmanus1

Happy 7 Month Birthday Lily!

Lily's first trip to the rides

"I will not nap, I will not nap, standing up is so much fun!"

"I'm practicing standing and pushing my shopping cart"

Lily and her girlfriend Charlotte

Standing in my crib

I am sure this sounds so cliche but Lily is growing so very quickly. Let the baby proofing begin as she's crawling all over the place. We've had to lower her crib two different times in the last month because now her favorite thing to do is stand up in there. Lily's like the Leaning Tower of Pisa as she leans then crashes into her crib. It's actually quite funny to watch her on the video monitor. She continues to thrive and be a happy little baby.

From a cardiac viewpoint Lily is doing very well. She had an echocardiogram this summer but because she was squirming so much her cardiologist couldn't get the best pictures. We'll be back for her 9 month appointment where he'll do a sedated echo. She does have some narrowing of the vessels which is fairly common after surgery. This is something that will be monitored.
Lee and I attended The Heart and Mind Education Day at CHOP this month. It was very informative. CHOP is a pioneer in research. We tried our best to educate ourselves about CHD's and the surgery before Lily was born but now that she's here we wanted to learn more. What is it like to live with a Complex Congenital Heart Defect? What is the latest in research, treatments, and outcomes for these children? We'd like to think that Lily had her surgery, she's fixed, and everything is fine. Unfortunately, this is not something that is fixed and goes away. Lily has a complex congenital heart defect and we need to understand the long-term effects such as behavioral problems and academic performances that may arise. She's three times more likely to experience the above than a child with a structurally normal heart. Lee says that we'll cross that bridge when we get there and I have to agree. As a 19 year old, choosing my major in college was just that, a choice. I became a special education teacher and then a literacy specialist. I knew I'd have a positive effect on other people's children but now I believe I was guided toward this field. I'd like to think that if Lily does have difficulties in these areas that I'm one of the best people to help her. We'll cross that bridge when we get there. For now we are just enjoying our little angel.