Saturday, February 4, 2012

Where did January go?

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!

12 wonderful comments:

Marlise said...

SO good to hear!! You guys are amazing. She is such a sweetheart.

liz said...

How did I not know any of this. What a stressful month for you. I am so happy that things are going well for lilly.

Shelly said...

I was so happy to hear that they were mistaken. She is getting to be so grown up!

The Allens said...

I'm so glad to hear that your bad news turned out good! Lily seems like such a trooper...and you guys are pretty tough too. :)

Ali Richardson said...

I am so so glad to hear that Lily doesn't have it!!! Now she can shoot hoops like you and I did (dorks, ha ha). xoxo

Ryan & Keri said...

Tracy, I'm just catching up. Wow! I'm relieved to hear that she's okay. And going to be okay. You guys are so strong. How are things? Your family is growing. The kids are so big. Hope all is well. -Ker

Jessica said...

LIfe just goes faster and faster doesn't it? Yeah for Lily! I'm glad that she's doing well. What a good sport! I'm sure my kids would be freaking out at the idea of being put to sleep not excited. She's awesome!

Kara said...

Wow, what a stressful month! So glad everything turned out ok for sweet Lily.

Lisa @ Turning Tables said...

What a huge relief!! And what an amazingly brave and adorable girl she is!!! Your family is so amazing, Tracy!! xo

Shelly and Ben said...

Oh Tracy!! I'm so glad that things worked out. I know how scary it is now to have a child with heart issues. So happy for you and Lily!

Season said...

Oh my goodness—I didn't know anything about Lily's recent happenings! I feel SO awful! I need to be a better aunt, apparently. I'm so glad that things worked out though. She's such a trooper.

Dannenbergs said...

I am so glad things turned out okay. What a fun, sweet girl! Lily we love you!