Beads of Courage

During CHAMP Camp Diego created a Beads of Courage necklace.  This was my first time to learn about this Arts-in-Medicine program.  The idea behind the program came from one nurse that wanted to help her young patients deal with the emotional effects of serious illnesses.  The children receive colored beads that represent procedures, milestones and surgeries.  Diego was very proud of his Beads of Courage necklace.  Each bead on his necklace represents something he has had to experience along his heart journey.  This is a positive and artistic way for him to document his journey and be proud of his accomplishments.  

CHAMP Camp

Diego’s local cardiologist arranged for Diego to attend CHAMP Camp at Sheppard’s Fold Ranch in Avant, OK.  This is a 1 week overnight camp for "Children with Heart Abnormalities with Much Potential".  Diego was given the opportunity to invite his sister to attend camp with him as well.  Together Lucia and Diego journeyed off to camp for the week of June 10, 2013.  This would be a week of fun filled activities; swimming, arts & crafts, skits, music, archery, and so much more. 

Adelina, Cesar and I were eager to pick them up from camp on the following Friday evening.  We wanted to hear all about their week.  Lucia quickly appeared full of smiles.  She was quick to say what a wonderful time she had at CHAMP camp.  Needless to say, Diego was not thrilled to see us arrive.  .  Later he explained he was sad because he didn’t want the week to end; he loved everything about camp, especially his counselor, Nathan.    

Not only did Diego get to have a fun filled week of activities, but he also had the opportunity to interact with other children that have had similar experiences with their heart conditions.  For the next several days following camp, Diego continued to share stories of the children that he met.  He talked about their heart conditions and surgeries, but most of all he talked about how much fun he had.

Artistic Expression

Diego loves to draw; in fact, it is quite calming to him.  So, during the winter I stumbled upon an art class and asked Diego if he was interested.  He eagerly responded with a, yes!   I was hopeful this might be an avenue for him to release his frustration as well as learn that there is more to life than just physical activities.  Don’t get me wrong, I love that Diego is physically active.  I believe his participation in soccer throughout his recovery has pushed him to heal and strengthen physically.  I am just hopeful that art will serve a different purpose; to help Diego heal and strengthen emotionally. 

Many historical artists endured much pain and suffering through their lives and used art as their outlet.  One artist in particular seemed to speak to Diego, Frida Kahlo.  One of Diego’s teachers, Mrs. Starr, had her students do a research project on a great historical artist.  Diego chose Frida Kahlo after learning about her battle with a broken back and the pain and frustration she suffered throughout her life.  Diego seemed to understand Frida’s passion to transform her pain and suffering into an artistic expression.  Below is a picture of my great artist, Diego Segovia…

I was the fortunate recipient of his first masterpiece.  If you know me well you know that my favorite time of year is in the autumn.  This painting brings me peace for many reasons.  I can always have the cool crisp air of autumn around me while at the same time see the peacefulness in my son’s soul.

Double Switch Surgery Scheduled

Tuesday, March 12, 2013 I received a phone call from Diego’s Boston cardiologist, Dr. Marx.  He explained that he was pleased to say that Diego’s left ventricle had responded favorably to the PA banding.  In fact, it seems that the PA band had released pressure off the tricuspid valve and reduced his moderate regurgitation to mild tricuspid regurgitation.  One of the original possibilities, before the PA band surgery, was that Diego’s ventricle might not respond within a year.  If this were the case then possibly we would have to wait for Diego to go through a decent growth spurt in hopes that this would have a positive effect on the left ventricle.  I had commented several times throughout the previous year that Diego had not grown much in height.  Then sometime around January he started growing and it just hasn’t seemed to stop…he is growing, and growing, and growing.  God is good!

During our phone conversation, Dr. Marx explained that he needed to visit with the surgeon, Dr. Del Nido, before we could proceed forward.  The following Saturday, I received a call from Dr. Marx stating that he had a thorough conversation with the surgeon.  Dr. Del Nido felt that Diego would benefit greatly by waiting 1 year from the time of the PA banding to perform the double switch operation.   A few weeks later the scheduling nurse called to schedule Diego’s double switch.  The surgery date will be Wednesday, July 31, 2013 at Children’s Hospital Boston.  Bittersweet.

The Iron Man Award

There is an amazing man that I have had the great pleasure of knowing, Coach Gregg Grant.  Coach Gregg has taught all 3 of my children how to play the game of basketball.  He has spent the last (approximately) 10 years coaching Eisenhower students from the kindness, love and passion of his heart.  Coach Gregg is known for teaching his players how to play the game to the best of their ability as well as from the passion that resides within them.  Coach can go from stomping his foot on the court in the middle of the game to crying because he is so proud of his team whether they win or lose.  I have never seen so much dedication and love rolled up into one human spirit like Coach Gregg.  At the end of every basketball season Coach insists on having a celebration for the kids.  As you can imagine, the kids always love this opportunity to celebrate with their teammates and receive awards from Coach.  This year, much to our surprise, Coach Gregg presented an award that will be forever cherished in our home…

The Iron Man Award~Diego Segovia~ The Come Back Kid!

It was a blessing for Diego to receive this award at this time.  Diego was finally feeling strong.  It had been a long 6 month recovery.  The award was presented at a time when Diego was being forced to face the reality that he would soon be starting this process all over again.  The Iron Man Award is displayed in Diego’s bedroom and it serves as a constant reminder of everything he has conquered thus far and the strength that he has within him to conquer again!  Thank you, Coach Gregg!  We love you!!!

Jump Rope for Heart Hero-Jump for Diego Day!

Diego’s elementary school, Eisenhower International, partnered with The American Heart Association to participate in the Jump Rope for Heart program.  Diego was chosen by the AHA as a National Spokesperson and Heart Hero.  His photo and story were posted on the AHA Jump Rope for Heart website and on printed materials that were distributed in the area promoting the Jump Rope for Heart program.  It is our hope that Diego’s inspirational story will help raise awareness about heart disease and its effects on children.  The Tulsa Public School District and the AHA designated February 22, 2013 as Jump for Diego Day.  There were approximately 20 TPS elementary schools that participated in this event. 

 I’ve always known that my heart is different. You have four pieces of your heart and my two bottom pieces are switched. I have to take a pill every night for my heart. Doctors are going to switch the two bottom pieces of my heart around. 

The American Heart Association helps people like me with different hearts so doctors can find cures for kids like me!

– Diego, age 8

http://www.heart.org/HEARTORG/General/For-Students-Jump-Rope-For-Heart_UCM_312511_Article.jsp

February Cardio Check-up

It was 6 months post surgery and Diego’s Boston cardiologists were requesting a check up to review his progress.  I scheduled an appointment with Diego’s local cardiologist.  After completing another extensive round of tests the Tulsa office would send all records to Boston for review. 

On the car ride home from the doctor's office, Diego became very quiet.  Then, he started asking questions.  “Momma, what does this mean, what will happen next?”  I explained that we were hopeful the banding had improved his heart and it would be ready for the next surgery.  And at that point, an evening rollercoaster ride of emotions began.  It was very extreme from moments of sweetness to rages of anger.  Diego couldn’t focus long enough to complete his homework so I encouraged him to take a shower and try to relax.  While in the shower, the flood gates opened as I heard Diego crying inconsolably.  When he came out of the bathroom he seemed to melt into my arms.  I simply held him as he cried.  Diego said things that came from deep with inside.  They were words of anger and fear.  He said everything that I have ever thought, feared and felt myself regarding Diego’s heart journey.  I know how hard it has been for me to deal with these emotions, but to see my child suffering with these very same emotions was beyond any pain I had ever felt.  It is one thing to deal with these feelings as an adult, as a mother, but something totally different to deal with these feelings as a child.  I laid down with Diego in his bed and as we said his prayers we asked God to grant him peace and we prayed for his doctors.