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Saturday, August 13, 2011

Tuesday, January 19, 2010

Just a quick update, not a WHOLE lot going on really. Which is usually a good thing--Haha!! Ava turned 2 on December 31. It was a bittersweet day for me. Happy that our baby girl made it to her 2nd birthday, generally, in good health. But bitter because the entire day of her birthday I battled horrible memories from the day she was born. To some extent the memories have softened, but there are times I remember every single detail of that night.

Ava is, in a lot of ways, experiencing the 'terrible 2's.' It may sound funny to think of a child that cannot walk or talk, but it is true. She loves to be snuggled and played with and has figured out ways to get attention. One of her biggest tools is her ventilator. The vent goes off for many reasons, but the biggest 2 are 'high pressure' and 'disconnect.' Ava has learned how to set of the high pressure alarm by exhaling really hard. It sounds like she is going, "HHMMPPFF!" She has also learned that if she pulls the valves on her circuit open or pull the actual vent off her trach port, it will alarm. And guess what? When a vent alarns, someone comes running:) Sometimes you'll go running into her room and she's holding onto the circuit (right next to the port that is now opened) and it almost looks like she's smiling at you! The nurses can always tell when I've had a rough night with her because they'll come on shift in the morning and they'll find medical tape all over her vent circuit. it is from me taping shut her ports, and taping the circuit joints together. I've even had to put tape on g-tube before because she like to pull on it. Crazy kid!!! She continues to amaze me and really helps to continually mature me through this experience. 

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