Hello,

In January I am planning to run in my first 1/2 marathon in honor of Phoenix Children's Hospital.  The reason I chose this charity is to honor and provide support to all of the children of Arizona who need medical care.  I have the privledge to run for an amazing young man named Emery, who is a patient receiving care there.  Below is Emery's story as told by his mom.

Emery was born on October 23, 1998- He was a full term baby that "appeared to be healthy." the next morning his pediatrician said the dreaded words to us "we think there may be something wrong--we need to have you see a cardiologist-- nothing to be concerned about." Before long we were looking at charts and graphs, heading about medications, prognosis, and what to expect from Emery's life. He had been diagnosed with VSD (hole in his heart) and Aortic Stenosis. It was truly devastating and incredibly scary. Our life turned upside down. We were able to take emery home from the hospital-- loading up on several different types of Cardiac Medications.

 Our life started with weekly Dr. appointments. He seemed to be doing ok until the week after Thanksgiving. We went for a Cardiologist appt and he had lost some weight, and was also diagnosed with arrhythmis. I remember the Dr. telling me sometimes kids can be cared for better in the hospital, and this was one of those times. He talked to us about Phoenix Children's Hospital-- and we know that was the only place for Emery. I would never have dreamed that first time driving up that this would become an extension of our home. Emery's first stay was from the end of November until 2 days before Christmas. Clearly not how you expect to spend the first Christmas with your new born. It was a rather "dark" time for us, but the staff was awesome-- we had lots of questions that the staff was great about answering and giving us lots of information to read. Even though it was not a place I would have wanted to be- it was a positive experience.

 Shortly after the New Year, Emery was back in for his second stay, the entire month of January. during this stay he was placed on a feeding tube to sustain his weight.

 His first Easter was spend at Fort Worth Children's Hospital. Out hopes our to be able to get his arrhythmia resolved. The Dr's feared they would not be able to get Emery off of the Bi-pass machine. This was Emery's first Heart Cauterization. Good and bad news, the good news that arrhythmia slowed down when he was under anesthetics, bad news the extra pathways causing the arrhythmia was on top of his own "regular" pathways. the Dr's recommended doing nothing, and waiting until he got older, to perform the ablation (actual burning of the pathways) they were confident if they moved forward, they would ruin all of his own normal pathways, resulting in a pacemaker for him. We agreed and brought out almost 5 month old baby boy home with us.

 April 19th, 1999, at 6 months old, Emery had his first open heart surgery. the staff was awesome, continuing to reassure us on Emery and the over all progress. I can remember what seemed like hours, both our Cardiologist team and Dr. Teodori sitting for hours with us. Answering every question, easing every fear.

 It was everyone's hope that Emery would start sustaining his own weight after his first surgery. Unfortunately this did not happen and in July of 1999 he had his 2nd surgery at PCH with Dr. Magill and Dr. Silber, placing a G-button for feeds. Shortly after this we started using the out patient services for oral and speech therapy (this is kind of funny-- as he has NO problems speaking!!!).

 In February of 2001 things did not seem right. After an echogram of his heart, and a 24 hour monitor of his heart we knew he was sick. His heart was completely out of sink with its rhythm's and we ended up in the ICH immediately. We spend a week there, while the Dr's  tried to get emery's rhythms back into check. I will never forget one of the Dr's said "don't worry we are going to take care of your son." And there was never a question that they would. The next week Emery under went a heart cath, and it was decided that he would need his 2nd open heart surgery 2 1/2 years old. On March 20, 2001 Dr. Teodori successfully complete Emery's 2nd open heart surgery. Within 2 days of surgery he was up and walking. I remember the first steps he took, every nurse in the ICU was surrounding his room, cheering and clapping, I don't think there was a dry eye, other than Emery's.

 Shortly after this surgery he was finally healthy enough to be around other children and he started preschool. Soon the oral/speech therapy stopped!! YEA!!

Emery was thriving and doing great! We were working on getting is feeding tube out, as he was almost 100% supporting his own weight but his oral feeds.

 April 2003, things took another turn for Amery. The time had come where the Aortic Valve of his heart needed to be replaced. June 9, 2003, Emery went under the ROSS procedure at LA Children's Hospital- moving his pulmonary valve to the aortic side and putting a donor valve into the pulmonary side. This was a life changing surgery for Emery!! He was finally able to run and keep up with his friends! He was able to play soccer and his ultimate dream, learning how to play hockey.

For the first time in his life-- he was no longer on medication! October 29th, 2003 Emery's feeding button was removed, a surgical procedure we were happy to have!

 The Ross Procedure was expected to last 5 years, but Emery had other plans. Emery's heart issues are on going, and we are often reminded that they are not going away as we faced another Heart Cath on Oct 27th, 2004, 4 days after he turned 6 years old, 16 months after his last surgery. It seems like a lot to go through for a small "little man" but he has the heart of a soldier. How ironic that his Hero is Pat Tillman, even before the rest of the world "knew" Pat Tillman. emery has a spirit that is contagious and an example of how each of us should live our own lives.

 After his heart Cauterization, it was diagnosed that Emery had rejected the pulmonary valve, which was replaced in June 2003. The valve has shrunk to the size of a 20 lb babies. Emery under went his 4th open heart surgery, May 2nd 2005. He had a great recovery and has bounced back to his old self. We know this valve will have to be replaced one day, we are just hoping it is many days/years away. It has been discovered that due to his "original" aoric valve there is a permanent damage done to his heart. This damage constricts the heart from fully opening and closing. We are looking at medication, but once he starts the meds it will be a lifetime of medications, and obviously there are side effects, etc. We will just take it day by day, appointment by appointment, enjoying each day as the gift that it truly is.

 

So as you can tell Emery is truely an amazing boy for what he has overcome and what he might have to face in the future.  Please find it your heart to support us with whatever you can.  Anything helps.

 

Thanks,

Steph

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