Rare Disease Day

First, quick update on Julia:

Today's scan was good, as in there was no bad news. Julia's condition remains stable and we are happy to have been able to wait longer between transfusions than expected. We will take a close look at her heart tomorrow with a specialized test called an echocardiogram.  Tomorrow's ECHO should give us an idea of the severity of her anemia and how it's affecting her heart. It will also check her heart for any defects. Fingers crossed.

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Today is Rare Disease Day.

And get this...
I scored a free hot cocoa and cookie because of it. They were delicious and Julia kicked me perhaps in delight, so I think she liked them too. But forget the cookie. What's incredible to me, is that the company giving them away (a cookie truck) was parked only just steps away from my building. And I just so happened to have walked by at the right time. And they were doing this good thing in support of rare diseases. And both my babies have a rare disease. Crazy, right?

It was one of those times, you know, that you get the feeling the universe is trying to tell you something, that the Big Guy upstairs is giving you a nudge, that your angels are making sure you know they're there - and they get it. Sometimes I feel very alone and frustrated that my babies carry this rare unfortunate disease. Then something like this happens and I realize, once again, I'm not really alone.

It's nice to see that there are people advocating for increased research for rare disease and coming together to support this cause. Even the pope made a special blessing today for those affected by rare disease. I hope this post spreads the word further.

I feel all the love you've sent my way, thank you.
Liz

Julia's belly bump and my free hot cocoa for Rare Disease Day