Thursday, February 28, 2013

CHD Month Ends with a Book Review...

Before My Heart Stops is the memoir of Paul Cardall, a Congenital Heart Disease survivor.  As a husband, father and talented musician, Paul shared his deepest thoughts on his blog while waiting for a heart transplant.  Many of us in the CHD community hung on every post, amazed by Paul's faith and fearful as his health obviously declined.  The good news is...Paul received the ultimate gift of a new heart and recovered quickly. He began living, really living, almost immediately.    He had lived more than 30 years with a heart similar to my oldest son's, who only managed to survive 9 weeks.  Now he has energy and strength.  What a testimony of faith!  And even though I have never met Paul, it was such a blessing to watch.

Not long after his transplant, Paul compiled his memoir, including much of the inspiring content from that blog.  The result is the book I just finished reading.  It is beautiful.  It is a front row seat of heart-wrenching, scary, sad, maddening, joyous, and faith-filled experiences as Paul and his family waited.  It was as much a blessing to read now as it was to witness on his blog in 2009.

Thanks to Deseret Book for supplying a free copy of this book for my review.  If you'd like to read it, you can get it today at a greatly reduced price.  Today only.... $5.99 for a beautiful hardcover memoir.

This was a wonderful way to end CHD awareness month, don't you think?

Wednesday, February 20, 2013

Wordless Wednesday--The Toothless Edition...

Not to mention....EXTREME close-up...

Just look at my big boy missing both top teeth!  

Speaking of extreme...

This is his toothless version of an extreme bubble bath. 

That's his idea of mega fun.

And he even cleaned up the mess.

Thursday, February 14, 2013

It's Not Just Valentine's Day...

I've never been much of a fan of Valentine's Day.  Shouldn't you show your love every day?  It's nice to get candy and flowers and cards, but it doesn't have to be today.

I am more than happy to focus my attention in a more meaningful direction--the 'other' Heart Day.  Congenital Heart Disease Awareness Day.  That's also today.  Today is CHD Day!

February is Heart Disease Month; I think everyone knows this.  Everyone has seen the "Wear Red for Women" and "Wear Red for Heart" campaigns.  Most people are aware of the risks of high blood pressure, stroke, and acquired heart disease.  However, people are woefully uneducated about CHD.

In honor of CHD Awareness Day (today) and CHD Awareness Week (February 7-14) I have been posting a CHD fact on my Facebook timeline every day. (Special thanks to fellow heart parent Jim Ferritti for supplying concise, yet meaningful information every single day this month.)

I will share a few facts with you here:

  • Congenital heart defects (CHDs) are problems with the heart’s structure that are present at birth.
  • Common examples include holes in the inside walls of the heart and narrowed or leaky valves. In more severe forms of CHDs, blood vessels or heart chambers may be missing, poorly formed, and/or in the wrong place.
  • CHDs are the most common birth defects. CHDs occur in almost 1% of births.
  • An approximate 100-200 deaths are due to unrecognized heart disease in newborns each year. These numbers exclude those dying before diagnosis.
  • Nearly 40,000 infants in the U.S. are born each year with CHDs.
  • Over 85% of babies born with a CHD now live to at least age 18. However, children born with more severe forms of CHDs are less likely to reach adulthood.

Many people believe heart defects can be "fixed", never again to be considered an issue.  In truth, this is extremely rare.   They are not really fixed, but adjusted to better compensate.  Most people born with CHD who need surgical intervention will be followed by a CHD specialist their entire lives.  If they live, that is...

Thankfully, medical technology continues to make advances despite the lack of awareness and research funding.  The chances of a normal life for a child born in 2013 are better than ever.  There are great cardiac programs at hospitals all over the country and around the world and they are working hard to develop and perfect procedures which result in better outcomes.  It is exciting and scary to think that babies born with CHD are now living into adulthood.  Fifty years ago, that was extremely rare.

Even so, babies, children, and adults still die every day from CHD.

These pediatric cardiac programs treat the CHD child's medical issues, that's true, but many also cater to the general well being of the entire family.  Just this past weekend we attended the annual Heart Institute Reunion at our Children's Hospital.  It was pretty sobering to see so many people affected by CHD gathered in one place.  I was not prepared for the emotional intensity in that moment.  So many adults, teens, children, and infants strung together across race, geographics, and social status, held together by a disease so common yet so unknown...

I met some amazing families in person for the first time at the reunion, which was pretty incredible. I chatted and reminisced with medical staff and doctors, and brought home a nasty case of the Norovirus. (but we won't talk about that!)  All in all, it was a great day.  My little one really enjoyed it.  Plus, he got a goodie bag and this great t-shirt:

(And no Norovirus...knock on wood.)

One more really cool thing happened last week.

This is the main entrance of my boys' school.  See the AED sign?  I'm not sure how long it has been up, but not long.  I just noticed it last week.

Four years ago, I felt a strong calling to do something to get AEDs in our schools.  My little one started preschool and I was shocked (no pun intended) to learn that the special needs preschool did not have an AED.  With my little one's history of arrhythmia and his increased risk of future arrhythmia, it became important to me.  I had no idea what to do, or how to even begin, but the calling was strong.

In 2011, I learned that Cathy Schweinberg and The Jason Schweinberg Memorial Classic could help me. The Classic raises funds to support the CHD Awareness Quilt Project, wishes for CHD kids, and AEDs for schools.  All of this is done in the loving memory of Cathy's son, Jason, who passed away at 17 due to CHD.

 I was able to secure a donated AED for my little one's school in 2011.  I was very excited! In 2012, I was able to secure another AED through the Classic.  Because of these AED donations, our school system had to create a committee to write policy and training plans for the entire system.  I am proud to say that because of these donations (at least, in part), all of our county schools now have (or will soon have) AEDs on site.  It really thrilled my heart (ahem) to see that sign on the school's front entrance!  I am so thankful, not so much that I think my son will need an AED at school--I pray not.  But someone in our community will, someday.  And now we are prepared.

Happy Heart Day, friends~

Friday, February 1, 2013

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