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



Jumping for Joy!!!

I did it….it’s official…I regained my living room back and all thanks to my middle daughter, Lucia.  We are a family of 5 living in a 3 bedroom, 1 bathroom home.  My 2 youngest children, Lucia and Diego, have shared a room together for the past 9 years.  During this past winter Lucia took a stand!  She was refusing to live in the same room with her brother any longer.  She developed and presented multiple options to solve her problem.  After much consideration, Cesar and I decided we would enlist the help of our brother-in-law to convert the garage into Diego’s Cave. 

Diego wanted to spend his saved money on a TV for his room.  I’ve never been a big fan of my children having electronics in their bedroom, but the more I thought about this the more I realized it would be nice to no longer have a multitude of gaming systems in control of the living room.  Reluctantly this weekend, I gave in and let Diego buy a TV for his room. 

A few weeks ago my cousin encouraged me to purchase a mini trampoline.  She has been using it for a while now to increase muscle tone and as a cardio workout.  This morning, I felt rejuvenated when I came into the living room and did not have to fight for my time to jump.  Therefore this morning I set a goal to jump each day for Diego’s heart until we leave for his first surgery on August 26^th, which is Lucia’s birthday.   42 days of jumping has begun, wish me luck!

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

Granola Goodness

 I enjoy a salty sweet snack in the afternoons.  This is my favorite granola recipe in its basic form.  I found this recipe from the Clean Eating Magazine and then adjusted it a little over time.  The great thing about this recipe is you can add your favorite nuts, seeds, dried fruit or vegan cacao chips to personalize it to your taste. 

Ingredients:
1/2 cup unsalted sunflower seeds
1 1/2 cups oatmeal
1/4 cup ground flaxseed
1/2 cup shredded unsweetened coconut
1/2 tsp sea salt

1/4 cup almond butter or peanut butter
1/3 cup raw honey
1 tsp pure vanilla extract

Pick and Choose your Favorite Add-ins:
1/4 cup unsalted pumpkin seeds
1/2 cup dried raisins
1/2 cup dried cranberries
1/2 cup vegan cacao chips
1/2 cup chopped almonds
1/2 cups chopped walnuts

Directions:
Preheat the oven to 300 degrees F
Combine all dry ingredients together in a large bowl
Mix the almond butter, honey and vanilla in a small bowl then add to the dry ingredients mixing well until evenly blended.
Spray a baking pan with olive oil
Press mixture into pan
Bake for 30 minutes
Slice granola into bars and store in snack size baggies for a delicious healthy treat!

Will I die?

This morning (June 29, 2012) while Diego was watching TV he asked, "Mom, will I die?"  Since I was not sure where this question was coming from I replied, "Well Diego, everyone dies".  Then Diego said, "But am I going to die in 1 month?"  The time frame leads me to believe that this question came from his concerns about his upcoming surgery.  This is one of those questions where I struggle with the best way to answer.  Obviously neither the black nor white area is appropriate, but what shade of grey is best.  Diego and I talked for awhile and he ended with, "Mom, I wouldn't be able to live without you."  I replied, "Diego, I wouldn't be able to live without you either."

PA Band Surgery Date Changed

I received a phone call this morning (June 27, 2012) from Boston.  Dr. del Nido’s schedule has changed; therefore, they needed to change Diego’s PA band surgery.  Diego’s pre-op appointment is now scheduled for Monday, August 27, 2012 and his PA band surgery will be Tuesday, August 28, 2012.  This is a small bump in the road as I am learning that there is nothing definite with this process.  I have even heard of parents learning the night before that their child’s surgery date has changed.  The road before us will take a lot of patience and understanding from everyone involved.  Unfortunately, this can be difficult for an 8 year old to understand.  

Boston

Boston called this morning (June 5, 2012) to begin the process of scheduling Diego's first surgery with Dr del Nido.  This was truly one of those bittersweet moments.  It was sweet in the sense that for the first time I am at peace with the path we are on for Diego’s heart.  It was bitter in the sense that this opens the door for a great deal of fears to be exposed.  The first surgery will be the pulmonary artery banding with the hope of having a positive benefit on his tricuspid valve and preparing the left ventricle (that is on Diego's right side) for the anatomic repair called the Double Switch.