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.

TPS Speech Art Festival

Diego prepared a speech for the 2012 TPS Speech Arts Festival. His speech explains how his heart defect is different from a normal heart. Now that Diego is older he has asked many questions about his most recent cardiac doctor appointments and upcoming surgeries. Therefore, as his mother, I felt it was best to explain to him so he understands and feels grounded about his heart and the surgeries that he is facing in the next few years. I am amazed at Diego's ability to comprehend the complexity of his heart defect and speak about it in public. I truly believe that his heart has paved a way for his natural talent to shine. A wonderful friend of mine recorded Diego during the finals. I am pleased to announce that Diego won 1st place! FYI: Diego does not begin talking until 30 seconds into the video;-)

Grocery List

Wheat germ
Flaxseed
Chia seeds
Nut butter
Sunflower seeds-unsalted
Coconut-unsweetened
Pumpkin seeds-unsalted
Almonds-unsalted
Walnuts-unsalted
Sucanat
Organic evaporated cane juice
Raw honey
Agave
Vegan chocolate chips
Unsweetened Applesauce
Greek yogurt
Soy milk
Skim milk
Air popped popcorn
Quinoa
Bulgur wheat
Oatmeal
Ezekiel bread
Whole grain breads
Whole wheat pasta
Brown rice
Extra virgin olive oil for dressings
Olive oil for cooking
Safflower Oil
Balsamic vinegar
Lemons
Sweet potatoes
Fresh fruits
Fresh vegetables
Chicken breast
Pork tenderloin
Turkey breast
Salmon
White fish
Eggs/Egg whites
Bison
Tuna
Tofu
Fresh & dried herbs & spices
Sea salt
Garlic
Dried beans
Lentils
Black eyed peas

A Daily Menu Example

Meal 1: Oatmeal, blueberries and 1 tbsp of flaxseed
Meal 2: Whole wheat bread with raisins, nut butter
Meal 3: Chicken with sauteed onions, bell peppers, and mushrooms
Meal 4: Pear and almonds
Meal 5: Granola and non-fat yogurt
Meal 6: Wild Salmon with pico de gallo and avocado

Healthy Carbohydrates

Fruits (apples, oranges, pears, grapefruit, strawberries, blueberries, pineapple)
Vegetables (spinach, corn, sweet potatoes, onions, bell peppers, cauliflower, asparagus)
Oats
Oatmeal
Whole Wheat
Oat Bran
Wheat Germ
Lentils
Garbonzo Beans
Kidney Beans
Navy Beans
Peas
Black Beans
Air popped popcorn
Fat free yogurt