Thursday, August 25, 2011

Bela's Story for PCH

A couple months ago St. Joe's and Phoenix Children's merged their Pediatric Heart Units. I know I'm way biased towards St. Joe's, but PCH just gained an amazing cardiology team. They are very lucky. I'm really excited about the merge, I think it will offer the patients the best of both worlds. They called us a couple weeks ago to do an article to help with their '100% for Children' campaign. I told them that I didn't know anything about PCH, but I will promote Dr. Nigro (bel's surgeon) until I die. So anyway.. I'm glad I was able to share her story again and sing my praises to her incredible doctors.
Here's the link: Bela's Story

Tuesday, August 23, 2011

My little man

My Bens started kindergarten... where has the time gone? I'm pretty sure I just had this little man.. Time is flying by. I have had 1000 different emotions the last couple weeks. I was really anticipating school starting because.. Summer here stinks. It's horrible. So I was excited for him to have something to do. But sending him those first few days were hard! So hard! I'd feel so anxious all day long. Knowing that he's with people and kids I don't know and learning and seeing who knows what and I wasn't right there to put little plugs into his ear all day long. I'm still having a hard time with that. But he's actually really having fun and loves to tell me all about his day. I love hearing all about his day. Like the stories about the girl in his class who is always naughty and gets in trouble all the time. And the PE teacher who is magic because he can throw a hula hoop out and then tells it to come back to him, and it does! And all the silly rhyming songs he's learning in music, the same songs I remember learning when I was in school. It's so fun to hear the stories and see his eyes light up.

I realized though that I'm really glad someone else is teaching him. Homework is already annoying because he dosn't like when I correct him and we usually both end up annoyed by the time it's done (all 5 minutes of it.) Does that happen with anyone else?

We sure do love you Bens. You are sweet, kind, and for the most part a very considerate little boy, and I hope you always stay that way.

The classic annoyed with all the pictures being taken picture. Seriously mom?!



Thursday, August 18, 2011

Donate Life!

Because of her



I decided to finally Donate Life, something I should've done a LONG time ago. In honor of Ruby Jane and my Bela.

Go to aniandmatttaylor.blogspot.com to register to become an organ donor and read about the amazing Ruby Jane.

HLHS

I've realized that I have strayed from my main goal of this blog. It is first and foremost to document Bela's extraordinary fight with her Congenital Heart Defect HLHS. It is to hopefully provide hope and help to others who are going through similar situations with their babies. I just got a comment from a mommy of a newborn baby girl with HLHS and Turners. I was so thrilled that she found my blog and that I will be able to connect with her! She said that seeing Bela is giving her hope. Hope is the best medicine there is!

Bela at Disneyland


I recently found a blog called The New Left Heart Kid (Thenewleftheartkid.blogspot.com) started by Carter's mom to give hope to others with HLHS. In her first post she wrote:

"No longer afraid of the journey itself, I've learned to accept things as they are, and embrace the beautiful gift we've been given. Along the way, I've learned a few things, but the most important lesson stands out above all - today kids with Hypoplastic Left Heart Syndrome can survive - and do amazing things!"

I couldn't agree more..

Thursday, August 11, 2011

She's a wild one with an angel's face




For the record... This is the screw that Bela decided to swallow one day a couple months ago. Actually, I'm pretty sure she just decided to suck on it for awhile, but fell down and it lodged in her throat, gagged and choked and scared me half to death before finally swallowing it. Many x-rays, days (5), and poopy diapers later, it finally came out.



A few days later, she decided to give herself a haircut. Good thing it resulted in an adorable short haired Bela, but she's wild all the same.


Oh Bela.. so glad you're mine!

The last little while in pictures


Got to be with my entire family while my parents were home!






My precious babies