We were recently asked to be a "Miracle Family" for Texas
Childrens Hospital and
Childrens Miracle Network. This means we will represent the 2 organizations at events and share our story to help raise awareness and funds. To start I had to write Riley's story- which is very difficult to put into words, especially on one page- but I thankfully had help from my sister.
Riley's StoryTexas
Children'' is our home away from home. That phrase may seem cliche', but it simply states the truth. When a health crisis prevents us from being home, we are grateful to have a
hosptial that can take its place.
Riley
Kikuchi was born 9 weeks early. She arrived weighing 1.14
pds. while her twin sister topped the chart at 3.5
pds. She spent 7 weeks in the
NICU (at a hospital where we live in Hawaii) where she gained weight and learned to eat. All her early signs pointed to good health.
On December 28, 2008, Riley was brought to the ER at Texas Children's because she wasn't eating and her breathing was labored. RSV or
pheumonia were an assumed diagnosis. But, at 2:00am, Riley was admitted to the
NICU and I was told that she was in heart
failure and a heart transplant was in her future. She was only 14 weeks old.
That year that followed the first shocking and terrifying night, was filled with doctor visits and hospitalizations. All of them at Texas Children's. In total, Riley has
recieved 19 different diagnoses.
Dialated Cardiomyopathy, Cerebral Palsy,
Polymicrogyria,
Microcephaly, Global Developmental Delay and Asthma are a few that top the list.
But, Riley is not defined by her list of health problems. She is a miracle. That is why we are so honored to be one of Texas Children's Miracle Families. This hospital has been so integral in caring for Riley and helping us learn and understand ho to care for a child with special needs.
We are grateful for the doctors and staff. They have become part of our Miracle Family. Dr. Mott, Cardiologist,
walked us through that first long night in the hospital. Then the entire Cardiology Team became our steady strength. Corey Gates, heart transplant coordinator and RN, has gone above and beyond her nurse obligations. She truly loves Riley and does everything she can to make sure she
receives the best care. She calls after hours and makes each hospital stay feel more like home.
We are also grateful to Dr.
Weschler from Physical Medicine and Rehab. She has
provided us with comprehensive care. She take time to ensure that all of Riley's needs are net, not just those that fall under her medical specialty. The
Emergency Room doctors and nurses are phenomenal. We are there so often, many have started to recognize us.
Riley's health today is stable. She is 2 1/2 years old and only weighs 20
pds. and is all smiles in her hot pink wheelchair. Her hearth health has improved beyond any of our hopes and predictions. We are so fortunate that medicine and therapy have improved her
quality of life. She faces many battles in her future, but she has also seen many miracles. She radiates an infectious joy.
So often, when you walk the hallways at Texas Children's you only notice those that are sick and face life-threatening illnesses. But hidden behind those scenes, there are miracles. There are doctors that give extraordinary medical service, there are nurses who provide outstanding support and care beyond what is expected, and there are children like Riley, who thrive because of all this hospital offers her.
Riley is a miracle. The doctors, nurses and staff are a miracle. Thank you Texas Children's for bringing us all together to make our own, special Miracle Family.
