My name is Tammy. David is my husband and we have 2 beautiful daughters. Hillary (7), and Emily (5 1/2). Both are my precious angels.

The onset:

Emily was born a typical healthy baby. When she was 6.5 months old she started getting really fussy at night and when it was time for bed. This went on for a week or so. Then one day she started voimiting and couldn't keep anything down. The next day she started with a low grade temperature. the next day we took her to the dr. He just figured it was a virus after running several tests on her. Later that evening we are home and Emmy is playing in the floor. The next thing I knew she was sleeping and I couldn't awake her. She was breathing okay just wouldn't wake. I call the dr. he thought she may be dehydrated and told me to take her to the ER.

The Hospital:

A few hours in the ER and the dr. decided to keep Emmy overnight and give her IV fluids to rehydrate her. So the next morning all the dr.'s came around to see her adn decided to discharge her. While waiting on discharge papers my mom is holding Emmy and she tells me to look at Emmy's face. It was all drawn up on one side and her arm was jerking. I yelled for a nurse and in a matter of seconds there are about 15 people in the room with Emmy. Doing all this stuff to her. This was the onset of her seizures. During the course of our seven week stay in the hospital she had countless MRI's, EEG's, CT Scan's, Lumbar Punctures, and constant blood work. Finally after 3 1/2 weeks an MRI comes back with devastating news. Emmy's brain has suffered a severe brain insult. She has been diagnosed with Viral Encephalitis. The neruologists told us not to expect our daughter to wake up.

After 4 weeks Wmmy starts waking up every morning at 7 am like clockwork. Now she has been given an NG tube for feeds. She has lost all abilities to suck, swallow, breath, cough and sneeze. We decided to have a gastrostomy tube placed for her feeds. Before the surgery the dr.s came in to tell us of all the risks. Since Emmy was apneatic already the ansthesia could make it worse and so it did. Emmy was put on CPAP six hours after surgery and about 4 hours later we were making the decision whether or not to put her on life support. About 1 1/2 days later we decided to take her off all the equipment and let her go in peace. Gradually as the ventilator was turned down Emmy started breathing on her own.

NOW:

Since those 7 weeks Emmy has had countless number of physical, occupational, vision and speech therapy sessions. She has also received aquatic therapy. In May of 1996 she had to have a nissen done to stop her reflux. In April of 1999 she got pneumonia the first time and came home on oxygen. Again in May she had pneumonia again. This time she was diagnosed with chronic lung disease. She is still on the oxygen and a monitor at home. Her seizures are uncontrollable at this point. She has an array of medicines that she takes. She is on the ketogenic diet and in March of 2000 she was a recipient of the vagus nerve stimulator. She has started to smile and laugh again. She can make some sounds like ahh. She also functions on a 0-3 month level.

I along with another mom have started a non profit organization to help children with CP and other brain injuries. If you are in Kentucky and Indiana please email me for more information.

Thanks
Tammy

Email Tammy