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March 2010

Wed, 17 Feb 2010 10:34:13 -0500

Erika is finally gaining weight! At 14 years old, she now weighs 50lbs. And is 4 ft 2 inches. We still expect her to grow. She is not in puberty yet and the growth plate is still open so we should still see improvement. At the CHARGE Syndrome Conference last summer, we heard about Botox to the Saliva Glands to help reduce secretions. It is still quite new, but we thought we would try it. Unfortunately, when we got to the hospital, the anesthiologist was not comfortable sedated her so we d

2009

Mon, 13 Apr 2009 09:32:03 -0400

Erika has had her first healthy year. Now that Erika is feeling better, we are able to make more progress both at school, and physical She started the Middle School this year! She is doing quite well. Perkins School in Boston, (the deafblind educators) came for more training at school. The team was receptive and has done a good job learning about CHARGE and Erika’s abilities. She is making choices using the PECS system and with switches She has made some new friends, and is excited to gr

2008

Mon, 26 Jan 2009 22:04:34 -0500

Erika had a rough year medically. She started coughing, gagging and retching 2-5 times a week. It was so tiring on her that she would sleep for hours after an “attack”. We saw her Pulmonologist, Gastrointerologist, Cardiologist, and neurologist. No one could figure out what was causing this to happen. She went into the hospital and had numerous tests and exploratory procedures, everything was fine. We had a narrowed down to either abdominal migraines or abdominal seizures. After also seein