Oct 19 2013
Emilie is 7 years old. She has two heart defects and neutropenia which is dangerously low neutrophil, a white blood cell that is the main defense against bacteria. So every fever she gets (and she gets many) we need to get her blood drawn and if she is neutropenic she needs to have three days of antibiotic through iv. The neutropenia is because of the shwachman diamond syndrome she was diagnosed with. She is developmentally delayed (mild to severe). She was medicated for high blood pressure, seizure disorder and severe acid reflux. She has severe constipation, anxiety. She had low muscle tone and asthma. Chronic ear infections and had several ear tubes put in. Had tonsils out and adnoids out twice for sleep apnea. Now still has year round sleep apnea because of some kind of unknown allergy. There are more but I think this paints the picture of her life. All the pain and torture of all the hundreds of tests and procedures she’s been through. Through all of that Emilie has always been such a happy child. Her fun is dancing and listening to music. She loves to cuddle, hug and kiss. When she would get sick and get tortured with needles and iv, she would give the nurse a hug and kiss. Emilie is a very special little girl that stole a lot of hearts in her 7 years and I’m sure she will continue to do so.