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getting closer

Posted Jul 31 2009 11:46am
Dr C's nurse called me this morning to inform me that Ava had been brought up at the Aero meeting yesterday. Dr C, Dr W, and Dr B (pulm.) want to try to trim back the epiglottis and vocal cord area to open up her airway. Sept 18th. This surgery may not work for Ava (I was reminded of this multiple times) and may make aspiration worse. This is our chance at avoiding any grafting type surgeries, IF this works. Dr C will perform the surgery. Ava will spend some time in the PICU with a breathing tube in.

Last week we saw the Feeding Team and Ava has been put on a high calorie diet. She looks huge, but in reality she hasn't gained weight in months, in fact she's losing. The genetic Dr agrees with the previous Drs that Ava has something more going on. Ava had to have more bloodwork done.

The appointments are finally starting to thin out a bit. We have differing therapies 4 days a week, not including EI, so we're never bored. Just less doctors. which is good.
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