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Hi. This is an update on Anna from Washington. She is now 19 months old and doing great. She hasn't been hospitalized for about a year and has been off oxygen for at least nine months. She is still fed 100% by g-tube (special formula) and has her hip brace on only at night. She is just starting to push up on her knees and rock back and forth, as well as taking weight on her legs when we hold her hands. She sits OK sometimes, but usually falls over.
Anna has hearing aids now and does pretty good with them. We can tell they make a difference. She still has PT and Speech Therapy (alternating weeks), and now an educator from the Hearing, Speech & Deafness Center comes to our home once a week.
She weaned from her seizure medication about a month ago and has been seizure free. (Yeah!) Now she only has two prescriptions for reflux and chronic constipation. I've attached a picture from our recent vacation (her first plane trip - although she did get to ride in a medical helicopter once.)
She is a joy and everyone who meets her falls in love with her. I just wish she would sleep through the night. . . .
Email : DAR1989@aol.com