Sunday, May 24, 2009

Esra's Story

Esra lives in New England with her mom and dad and little sister, Estelle. Before she was born, her family juggled prenatal care in Virginia and Connecticut while they managed a move with the Coast Guard. They settled into their new home with just a week to spare before she made her entrance into the world.

Her Spina Bifida was diagnosed in the womb at 19 weeks. {You can see a black line on her back in the ultrasound picture. That is the opening in her spine.} We were devastated, since it had taken us five years to get to 19 weeks gestation. But we were determined to hold on tight to all of our hope that she would be healthy. There would be more prenatal testing offered to us, but we declined it, putting our trust in God. At 32 weeks, we were told that she would not survive birth. Again, we asked for Heavenly Father's help in being prepared for all situations.

She was born four weeks early in Connecticut and she was very ill. She surprised the doctors by surviving, but was immediately put on life support as they stabilized a heart defect. In her first eight weeks of life, she had five major operations to correct her back, heart and brain. Because of the delicate sutures healing on her back, she spent her first six weeks on her stomach. The only way we cold hold her was while she laid on the isolette mattress that was ever so deftly lowered onto our laps or chest. At seven weeks old, we finally got our first good snuggle with her when she moved from the Newborn Special Care to the Pediatric ICU after her heart surgery. Things just kept getting better after that.

She currently attends the Spina Bifida and Urine & Bowel Clinics at Childrens Hospital Boston. There is a host of other doctors and therapists that we fit in when we are in Boston. As for the nitty gritty of diagnoses; she has a the most severe form of Spina Bifida. The lesion was 5 cm at its longest point in the lower thoracic/upper lumbar area of the spine.

She also has:
hydrocephalus or water on the brain corrected by a VP Shunt,
twice-corrected heart defect or coarctation of the aorta
rare genetic disorder of the 6th chromosome called "E.E. Deletion" {named after her}
the smallest traces of neurological function in hips and upper legs
sub-mucous cleft palate
speech delay
obstructive sleep apnea {tonsils and adenoids removed}
neurogenic bowel and bladder
straight cath'd 4x/day
uses the cutest purple razzleberry manual wheelchair
wears braces for the ankles and feet

Esra communicates with American Sign Language. She knows quite a few signs. In fact, she loves to watch Signing Time! and Blues Clues. And she loves to be mobile. She is the queen of wheels. Oh, she loves watching cars, trucks, buses and the like drive by our house. We call her the neighborhood greeter because she waves to all passing vehicles. As for her personal vehicles, she has outgrown her hot-pink crawler but still uses her manual wheelchair and dynamic stander with glee. She is learning how to ride a hand-powered tricycle. But the most important thing of all...She has just discovered the joy of dolls and baby sisters.

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