Marfan Syndrome and Cardiologist Appointment

Most days I feel like I am a happy little red balloon floating high in the sky, sometimes playing in the clouds even.  And then there are days that I'm the sad, deflated, ugly balloon that has had it's air sucked dry. Yep, that's me today. Completely Deflated. A day where I ask myself over and over, why me, why HIM?

My baby boy, Rocco had a follow up visit to his cardiologist today.  It sucked. Sorry to be so frank...ok, not sorry.  But it did. As a mother, I just want to protect him. But I can't protect him from his own body.  I feel helpless. 

You may or may not know, Rocco was diagnosed at birth with Marfan Syndrome.  It is a connective tissue disorder. Connective tissue is what everything else is built upon or so it keeps everything in its place.  It affects in many cases, eyes, joints, and heart to name a few.  Many that are born with Marfan Syndrome don't even know that they are affected until teenage or even adult years. Sometimes people find out when it's almost too late or some never find out until it is too late. 

In Rocco's case, his little heart is already affected. It's rare for a baby to have the heart affected so early. It is rare and it is scary.

In normal circumstances, the heart pumps the blood through the main vessel, the aorta, to the rest of your body. In most normal cases, the aorta stretches to accommodate the flow and then returns to its normal size.  For Rocco, as his heart pumps blood to the rest of the body, his aorta stretches but then does not return to the normal original size.  It stays enlarged.  Think of an elastic hair band, first few times you use it, it returns to original elasticity but then the more you use it, the more stretched out it becomes, and then pretty soon the elastic becomes weak and busts apart.  

Rocco is on medications to help reduce his blood pressure and heart rate to hopefully slow the flow so that it does not stretch the aorta as it is pumping out the blood to the rest of his body.

Well today told me that his medications are not working as well as I would like or need them to. His aorta is more dilated than our last appointment in August. Maybe he isn't on enough medication? Maybe it's just the Marfan and can't be slowed down?  Maybe I allow him to be too active?  Too many unknowns.

There is no cure for Marfan Syndrome. And I might as well say it again, it SUCKS. 

But you know what? This little boy is amazing. He makes me want to live my life every day better than the day before. I guess I need days like this to keep me grounded and not let my focus waiver from him. To keep fighting for him.  

Waiting for the blasted Echocardiogram

He makes those hospital gowns look good

I love the way he looks at his daddy

Yummy sock monkey

Daddy is silly

 Playing with our feet waiting on our results.

 You are my world. Period.

Ok, that is enough emotion from me today. But I feel better. 

xoxo - Christy