March 28, 2012 =BUSY DAY!

Busy day, but started out awesome with having lunch with Elicia Madetzke Kortus and her niece, JJ.

Thomas' back appointment was first and they said...SEE YOU IN 2 YEARS...can you believe that?!?! HOW AWESOME!!! His surgery from 7 years ago is holding up amazingly!

Jonathan's update...appt went long since they did an esophagram & swallow...all looked good. We meet with GI in July to set up scope. They will do a biopsy at this time as well, as they want to figure out why he isn't having acid reflux...I SAY LET SLEEPING DOGS LIE :) lol They said it could be silent reflux, so we are going to just have peace of mind. Also, he is high risk for cancer, so we just have to monitor that.
...
I don't know...the boys are beyond text book material when it comes to their hearts...Thomas is kicking his back's butt (he's not paralyzed and he plays baseball and basketball), so I think J isn't text book material for his esophagus either. WOOT WOOT!

Samuel was excited to see us when we picked him up from school. We decided to go to mall and let him pick out supper (Arby's it was) and get a book at Barnes and Noble. We hate having him miss out in anything. I'm sure he's fine with having to miss the doctors, but still...WE ARE A TEAM!!!

Remember, heart walk in Mankato on May 5 (http://events.r20.constantcontact.com/register/event?oeidk=a07e5lomj6h40762cda&llr=zyzzw7eab) and heart walk in sioux city on June 2 (www.siouxlandheartwalk.org)...JOIN US!!!

CHD Awareness February 7-14 EACH AND EVERY YEAR!

Why do I talk about Congenital Heart Defect Awareness so much? BECAUSE I HAVE SEEN HOW MUCH MY LITTLE MEN HAVE FOUGHT TO SURVIVE!

At just 21 years old, I was a young mother, and I had to watch my 8 month old, Thomas, go through drug withdrawls after having open heart surgery, because of all the medications he was on. I have left behind my baby Samuel for 2 months, before he was even a year old, to sit by Jonathan's bedside in the hospital for 2 months fighting to survive an...d being told he's a 9.5 out of 10 on rarity, complexity to to PREPARE!!! I sat by Jonathan's bedside, with his chest open and a piece of plastic over top of his chest, while I watched his heart beat, because it was far too swollen to close his chest. I have had my children in PICU's over the common cold. I have put my healthy heart child, Samuel, through echocardiograms, EKG's, pulse ox's, etc, as I was so scared I missed something or the doctor's missed something, as he was my ONLY healthy heart child.

THIS MAMA HAS SEEN FAR TOO MUCH IN HER SHORT 30 YEARS, yet 99% of it has been seen in the last 9 years. THIS IS WHY I FIGHT FOR ALL CHILDREN, NOT ONLY MY CHILDREN, TO RAISE AWARENESS FOR CHD (CONGENITAL HEART DEFECTS) AS I HAVE SEEN THE GOOD, THE BAD AND THE UGLY OF THIS AND I WOULD GIVE ANYTHING FOR NO ONE ELSE TO HAVE TO SUFFER. Sadly, I have the good stories, the hopeful stories, too many of my friends are grieving because of this disease. IT'S NOT FAIR FOR A PARENT TO HAVE TO SAY GOOD-BYE TO THEIR CHILD. I have to be aware my children look healthy now, but will NEVER be cured; I have to know the risks, however, I will NEVER be prepared!

Awareness=Research=SAVED LIVES