Guest guest Posted January 31, 1999 Report Share Posted January 31, 1999 : Our daughter 22 months had a very floppy neck also, she's been gradually making progress, sitting in a " corner " chair and using a walker. Her head and trunk control aren't great yet, but she's made a lot of progress. She won't sit alone or even think about walking for a long time yet, I'm sure. Sounds like most chargers don't walk until at least 3-4 years old, so Noah's got a ways to go. has had a trache since 2 months of age for tracheomalacia. She now also has tracheal stenosis (due to reflux irritation tissue). Having the trache, while huge to deal with for our family and limiting for mobility, has been great for 's health. She is also g-tube fed, and she has been doing great on the growth curves and rarely sick. Her pediatrician feels it has been a big advantage for her to have been trached since infancy, since another charger she took care of was trached later, after having multiple health and growth problems. Not many chargers on this list are trached, so it seems pretty rare. Noah's parents are welcome to ask us questions about our trache experience. He's lucky to have a nice, caring night nurse who is involved proactively with his care. has also been blessed lately with great nursing staff on nights and also part-time days while I work in the mornings. Welcome to the list. Anne Vanderbloemen mom of 22 months CHARGE Madison Wisconsin Quote Link to comment Share on other sites More sharing options...
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