Emmie M. - Quilt Finished in 2008
Born: November 28, 1999
Illness: Tetralogy of Fallot with Pulmonary Atresia and Major Aorta-Pulmonary Collateral Arteries DiGeorge Syndrome, Brain Stem Injury, Heart Defects from Birth; Brain Injury September 2002, Hypotinicity, Aspiration: Strictly GJ-Tube Fed; Wheelchair Dependent
A Thank You From Emmie's Family!
May 18, 2008
Attached is a photo of Emmie with her beautiful quilt and pillow that were obviously stitched with much love and prayer!! This is absolutely the most beautiful quilt I have ever seen, as I can see and feel the LOVE that went into each and every stitch! One of Emmie's new symptoms is chills, and this quilt made with love arrived just in time to keep her extra warm, not only with it's fine fabric, but with all the hugs she feels when she is wrapped up in it! I read all the names & places to Emmie just about every day, to remind her of all her new friends who care so much about her! Words can never describe how incredibly touched we are by the outpouring of love you have shown to Emmie.
God bless every one of you!
Kim and Emmie
Emmie's Story
Written by Emmie's mom in January 2008
Emmie was born in Seoul, Korea, on November 28, 1999. She was cyanotic at birth, causing doctors to fear a heart defect. Their fears were confirmed with a diagnosis of Tetralogy of Fallot with Pulmonary Atresia and Major Aorta Pulmonary Collateral Arteries. She had her first open heart surgery at the age of 3 months, and her second at 11 months, both in Korea.
Emmie's family was all the way across the world in the U.S. when they found Emmie, but God brought them together because Emmie needed a family and her family needed her! Doctors explained how sick Emmie was, but that only confirmed the fact that she needed to be here.
Emmie arrived in America at the age of 14 months. She was very sick and doctors here began planning to help her. She was soon diagnosed with DiGeorge Syndrome, which has 185 known anamolies associated with it, many of which Emmie already clearly has, and is the cause of her severe heart defects.
She endured her next open heart surgery at Children's Hospital of Philadelphia, at the age of 20 months, others at 23 months, 2 years and 2 months, 2 1/2 years, and 2 years and 9 months. She suffered a cardiac arrest and endocarditis 2 weeks later at the age of 2 years 9 1/2 months, and another heart surgery days after that, to repair that damage. During this time, she had a FLAT-LINE EEG!
Two months later, just days before her 3rd birthday, Emmie had another surgery hoping to correct what was believed to be severe GI problems. During this surgery she also had a G-tube placement, as she can no longer eat or drink from the neurological damage.
The GI surgery proved to be unsuccessful, as the vomiting episodes persisted, and 4 years later, at the age of 7, Emmie was finally diagnosed with Cyclic Vomiting Syndrome (CVS), which causes sudden, unexplained attacks of vomiting episodes occuring every 5-10 minutes, day and night, for several days. Most episodes last an entire week. Emmie becomes exhausted to the point of a coma-like state. There is no cure for CVS, but Emmie's doctors and family are researching treatments and specialists in this rare syndrome.
During a Cyclic Vomiting Syndrome episode, Emmie must be hospitalized immediately for IV fluids, as dehydration causes heart failure, and she must be heavily sedated, putting her into a deep sleep to help limit her suffering. The relentless vomiting and wretching has caused her esophogus to tear. The vomiting is also dangerous for Emmie because she aspirates, causing her lungs to fill up with fluid. Presently, Emmie's doctors are trying to find ways to prevent her CVS episodes, stop them as soon as possible when they occur, and deciding when her next heart surgery will be needed.
When Emmie is feeling well, she loves to watch Veggie Tales movies, color with her brother and sisters, and beat her mom at Candyland! She is always smiling, and even says "thank you" to the IV and Phlebotomy teams after they stick her for blood or an IV. She is full of joy, and inspires everyone who has ever met her. Even some who haven't!
