The Faces of CHD – Pinterest Awareness Challenge

As many of you know, I am the mother of two little girls born with congenital heart defects, known here as Superkid and Lily.  I’m also an avid Pinterest pinner–I love collecting ideas and inspiration via Pinterest.

Those two elements of my life had absolutely nothing in common…until today!  With your help, I’d like to help promote awareness of and advocacy for children (and adults) with congenital heart defects by founding a Pinterest board devoted to sharing the stories of families affect by the #1 Birth Defect.  The board is titled, The Faces of CHD – Congenital Heart Awareness Week Feb 7-12, 2012.” [Read more…]

Adventures with Superkid

Here’s the report on yesterday’s trip to the children’s hospital:  Superkid was a superstar!

If I haven’t told you before, you need to know that Superkid considers all trips to our children’s hospital–for any reason–to be primarily a social outing.  Any procedure or examination that the trip entails is secondary to the opportunities for social networking and the gathering of prizes, as far as Superkid is concerned.  A true performance artist, Superkid also feels that every person encountered at the hospital is a fresh audience ready to be delighted with her medical history, family history, favorite songs, new vocabularly words, and dance moves.

I don’t know where she gets that. [Read more…]

The Cure for the Uncommon Nosebleed

This is a totally gross topic.  My apologies.  But the reality at our house is that we are way, way too familiar with bleeding through the nose, thanks to Superkid.

Superkid tends to have a lot of nosebleeds.  Part of this is due to the fact that she has to take a blood-thinning medication to protect her artificial heart valve from blood clots.  And part of it is due to the fact that she has a small artery a little too close to the surface of her left nostril.  (For which there isn’t a simple fix, due to Superkid’s other medical conditions.)

The combination isn’t exactly pretty–especially when her medication is at therapeutic levels.  (Read: when her blood is as thin as her cardiologists want it to be.)  Believe you me, I have the stained sheets, towels, t-shirts, and carpet to prove that.  We have seen some pretty dreadful nosebleeds.  One of Superkid’s worst lasted for 3+ hours, and dripped like a faucet the entire time.  Naturally, that one occurred at 10 o’clock at night while Bionic Man was out of town on business, and involved a late-night trek to the children’s hospital ER with Superkid, Lily, and Lily’s oxygen tank in tow.  The nosebleed stopped as soon as we walked into the ER.  I am not kidding.

And, up until recently, that was the best cure for nosebleeds we knew.  Seriously, we’ve had three nosebleeds worthy of trips to the ER, and all of them stopped upon entry. Kind of an expensive and time-consuming cure, don’t you think? [Read more…]

Healthy Superkid Update

I have not found much time for blogging this last week, and I’m afraid that’s going to be the case until sometime next week.  I somehow think I’m going to have all this extra time when school starts, but I think the reality is that I spend the morning recovering from getting everyone out the door, and the afternoon gearing up for everyone coming back through the door.  Once they arrive, then the action and noise involved makes up tenfold for what wasn’t there during the day.  School totally wears Hunter the Dog and I out, I’ll tell you that much.

Anywho, it’s late, and I’ve got lots to do tomorrow, so this has to be quick.  I just wanted to share the good news that Superkid’s cardiology appointment last week went really, really well.  It was her first cardiology visit in over a year, and her heart looked so good that they told us not to come back again for another year!  That, my friends, is quite a record for us. [Read more…]