I was so surprised when I received a call from Dalton’s pediatrician with the results from his ECHO this evening! I didn’t think I would get them for another week or so. Everything came back NORMAL!! The valve that was not closed before is now closed. We are not sure what is causing the heart murmur at this time. It could just be a rattling noise or regurgitation. I’m so glad we can mark the pediatric cardiologist off of our list J Thank you all for your prayers and support!
Amy -
ReplyDeleteI just stumbled upon your site after a newly updated search online. First - a heart murmur is sometimes a common secondary finding in kids with Rieger Syndrome. Second - *hugs* - I remember those days of new diagnosis and discovery and sometimes, fear and uncertainty.
Have you joined the Yahoo group for Rieger Syndrome yet? I started that one years ago in answer to my own son's diagnosis, and today have three boys, and also my husband, who all have the diagnosis. A friend I met along the way started the Facebook group for Axenfeld-Rieger Syndrome (another name for the syndrome) and I am now an adminsitrator for that. We're looking at putting together a conference and everything!
I blog as well, and you can find me at www.katscafe.org - there I talk about the curious place I find myself in this world of special needs parenting. If you would like to connect with me there, I would love to give you further links and information about the other sites, if you can't find them easily enough.
It's so important to make these connections and I am so excited to have found you while wandering the internet. I look forward to having a chance to connect with you and welcome to this roller coaster of a life we call special needs parenting.
*hugs*
Katrina Moody