January 24th 2013 12:19 pm
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Wonderful news! The new medication has arrived and much faster than we had expected. She has already had her first dose and now we just have to hope it not only helps her lung function but also will result in helping to prevent the syncope episodes she has been experiencing. Overall she has been doing well so if this medication will work as we are hoping it will, she can continue to have a great quality of life. She is a really strong girl and we are doing what we can on our part to keep her that way.