Pre-Op Echo

Dr Marx said Diego’s left ventricle wall is as thick as ours (an adult). He truly couldn't believe it. His overall physical growth completely surprised him...it came at the perfect time. The heart cath on Monday will confirm everything.  Dr. Marx feels very confident that his LV will adjust easily to the increased pressures of the double switch.  

I believe with all my heart that Diego’s efforts to remain physically active this past year, his determined soccer coach that knew exactly how much to push and his mother’s obsession with healthy eating has set Diego up for a huge surgical success.

A 3D image of Diego’s heart

Church of the Madalene

             

And the angel of the Lord came again the second time, and touched him and said, arise and eat, because the journey is too great for thee.  And he arose and did eat and drink, and went in the strength of that meat forty days and forty nights unto Horeb the mount of God.  1 Kings 19:7

This was the first reading from the August 12^th Mass.  My heart smiled as I felt these words embrace my family.  After each Mass on the weekend of August 11-12^th the parishioners hosted a bake sale.  The Madalene Social Concerns Committee sold “Team Diego” wrist bands as a reminder to pray for Diego and his doctors on a daily basis.  In addition, the Women of the Madalene sold their Tastes of Yesterday & Today cookbooks throughout the bake sale.   All proceeds benefited Diego’s Heart Fund to assist with the medical and travel expenses to Boston. But even more, the parishioners of the Madalene saw that Diego’s heart journey was too great for us to walk alone.  Their gift provided nourishment for our soul that will strengthen us along Diego’s heart journey.  We are grateful and blessed to be a part of the Madalene parish. 

When life gives you lemons, make lemonade!



When life gives you lemons, make lemonade!

This familiar quote could not be more appropriate.  When I set off on the surgical path to Boston I did it with great hesitation.  I didn’t know how we could financially afford Diego’s medical treatment and travel expenses.  I never imagined finding such an enormous support embracing my family.  The Awesome Sipes Boys and the Marvelous O'Connor Girls had a lemonade stand open from 2:30 until 5:00 on Monday, July 23, 2012. The donations they received will help with our expenses to Boston for Diego’s upcoming surgeries. They also had Team Diego Bracelets for sale at the lemonade stand for $5.  I feel deeply blessed to be a part of such an amazing community of friends and families.  With a humble heart I thank you for your love and generosity!

Operation PA Wrist Band: Angels Among Us

Mission:  “I want to live to be at least 100 years old”

In order for you to fully grasp this operation I have to provide you with a little background knowledge.  I’m an introvert.  My motto has always been “Pull up your big girl panties and deal with it!”  I’m not a big fan of reaching out to others for help.  This would take a few pots of coffee to discuss so we won’t go into that right now.   Another bit of information, I like things to fit perfectly in a box.  Sometimes I think God gets his giggles by pushing me out of my box. 

Up until about 1 year ago not very many people even knew that my son had a CHD.  Slowly, I felt my walls caving in and I was forced to start reaching out to others for help.  Looking back, I realize that God surrounded my family with angels.  These angels have pushed me out of my box, forced growth on many levels, and shown me even more shades of God’s grace. 

The most recent angels, well let’s just call them the real Blitz Soccer Stars, are carrying out this operation; The Wassons (Diego’s awesome soccer coach), The Walkers, and The Burdens.  Together they created wrist bands that they are selling in support of Diego’s upcoming PA band operation.  The support is both financial and emotional.  They are asking that buyers wear the wrist bands until Diego returns home from his PA band operation.  In Diego’s speech he explained that his first surgery is to have a band, similar to a rubber band, placed on his pulmonary artery.  At the end of the speech Diego encourages everyone to eat healthy and exercise because he wants to at least live to be 100 years old and he knows you do too!  The Blitz Soccer Stars had his quote printed on a narrow wrist band and “Blitz Soccer Star…Diego” printed on a thick wrist band.  The Operation PA Wrist Band has already become a visual reminder for Diego that he has the love and support of many angels around him.  The first thing he said to me this morning was, “Mom, did you wear your wrist band all night?”  Comment below if you would like to support Diego and help him accomplish his mission. 



Operation PA Wrist Band



What You Can Do

As a friend and someone who loves Diego, I am honored to have the opportunity to write this.

Anyone who knows Diego knows this much for sure: he is a fiercely passionate, headstrong, and loving young man.  He has the heart of a boxer, physically competitive, yet still shows tenderness and conscientious restraint when playing with our 5 year old daughter.  He’s been a great friend to our son, an intrepid soccer player, and positive role model to his peers. Let's face it- everyone LOVES Diego!

We all want our children to be happy, healthy, and safe.  That’s why when we are faced with a medical crisis we only want the BEST – the best doctors, the best nurses and the best hospital…no matter what the cost.  The last concern for any mom should be cost, especially a mom like Lezlie, who has fought so hard on behalf of Diego – researching Diego’s rare condition, making contacts with specialists all over the world, and finally making the biggest decision of all…selecting a doctor she trusts who will have Diego’s best interests at heart (pun intended). 

I would like to see the financial burden erased for Diego’s healthcare costs so Lezlie and Cesar’s focus can just stay on Diego.  Aside from healthcare costs, consider the incidental travel expenses – airfares, hotels, car rentals, etc. – that continually rack up over months and months from out of town doctor visits.  It really adds up. 

Please take a minute to watch Diego’s touching speech (it starts 30 seconds into the video).  If you want to help Diego, click here and donate.  It’s for a great cause, a great kid and a great family who loves him very much.

  

Amy