Sometime after Christmas I think I blinked and then it was February. Anywho, where to start. It was just so nice getting back into our normal routine after the holidays.
We've enjoyed hot chocolate on cold days
I found Lucy rockin' out on my bed with Lily's MP3 player
We got some pretty devastating news regarding Lily's heart - followed by good news. First, we were told that Lily has something called Intramural Right Coronary Artery or Anomalous Aortic Origin of Right Coronary Artery (AAOCA). It's best known for causing sudden death in junior high/ high school age kids who compete in sports. We were all sadden by this news knowing it would change a lot of things for Lily. The doctors gave us the option to have an MRI done just to confirm the new diagnosis. Because of Lily's age and because it is a cardiac MRI she would have to be put under for about 2 hours. We went ahead with the MRI. Lily's doctor called me late that night (about 2 weeks after the original diagnosis) to tell me that they were in fact wrong. Lily doesn't have AAOCA. Kerrie was emotional on the phone, telling me this is the best news she's received all year. She even said. "This is a miracle!" They've diagnosed 6 kids with it in the last year and Lily would have been number 7. It's a serious and very rare diagnosis. Kerrie and I rejoiced on the phone together, so happy for Lily. I love that we have a doctor who can celebrate when she and her colleagues are wrong.
The reason they believed Lily to have the defect is because her right coronary artery is in the wrong place and comes out of the valve in the place where this defect usually occurs. From a regular echocardiogram it looks exactly like AAOCA. She just barely misses it though and isn't at risk of her artery being squished from the inside wall. Phew!
Lily was so excited to get an MRI and be put to sleep. I got some silly pictures of her playing around.
Waking up :)
What a great kid. I sure do love her a lot.
Yesterday, I got a call from The Children's Hospital asking Lily to take part in their annual fundraiser for the Heart Institute. It's a fashion show at the Air and Space Museum on Friday, April 13th. Lily will get to pick out a new outfit and have her hair done. 9 News covers the event. If anyone would like to come, we would absolutely love the support and of course it's for a good cause. It's $65 a ticket. I believe that includes lunch. I'll get more details out soon.
Thanks to everyone who kept Lily in their thoughts and prayers while we were going through that difficult time. We are so grateful for the good news!
