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Emily S. |
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Emily was born Sept 6, 2001, a beautiful healthy baby. She had viral encephalitis onset when she was just 8 days old and two days after the terrorist attacks on the World Trade Center. She was in the NICU for nearly two weeks and on a ventilator for 6 days. We were told after she was weaned from the ventilator that they never expected to extubate her. We knew then how close we had
come to losing her. We went home not knowing what to expect.
It took many months to discover all the damage. First we discovered that she was blind (cortical visual impairment), then that she had cerebral palsy. Next her seizures worsened into infantile spasms and she lost all the progress that she'd made to that point. Just before the worst of the seizures, she was starting to creep, but soon after stopped and never tried again. We finally got the seizures mostly under control when she was a year old after a week in the hospital, but then she began losing weight due to both her meds and a severe oral aversion. She had been exclusively breastfed to that point, but wouldn't eat solids. She got a g-tube at 14 months and then a year long battle with GI problems began, ending only when she had a pyloroplasty in December, 2003. She recovered from that just in time to break her leg in February 2004 and had a new baby sister the next month.
Finally, after recovering from all that, she began making progress. Now she can roll from back to tummy and is doing great in therapy. Her favorite therapies are speech and water therapy and she hates regular PT. She loves music and we try to incorporate music wherever we can into her life. She also loves being read to and reaches out to feel the Braille and raised drawings in the books we have. Emily is a beautiful red-head and has the sweetest disposition of any of my three children.
She loves to be cuddled and whenever I need a cuddle fix, I grab her and
head for the nearest rocker. We call her "The Divine Miss Em" because
she is so strong, but so loveable like the original Divine Miss M, Bette Midler.
Many people think that our lives are sad and we have it rough. They don't understand that we feel truly blessed by her presence in our lives. She is a gift from God and we are grateful. |
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