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The story of our precious little girl's 17 months of life with Trisomy 18 (July 4, 2010 - December 15, 2011) and of us, re-learning to live "after Lilly."
"I will praise you for I am fearfully and wonderfully made ...." Psalm 139:14

Monday, November 29, 2010

Stay back or else!!



Lilly grabbed a hold of her NG tube in this picture. She looks like she's threatening me: "You do what I say or else I'll pull this tube out!!"

She actually did pull her tube out again about midnight this past Saturday night. I was so sleepy it took me a few minutes to figure out why she was crying so much. Then in the dim light I noticed something was wrong with her face. No tube! She was so upset it was quite a traumatic thing to get the tube back in. We were both in tears by the end.

Then horror of horrors - the tube got a clog in it the next day. We tried flushing it with water several times but to no avail. So I had to pull it out and insert another new tube. Thankfully that one went it pretty easily.

Challenges. They grow our character. Right?

3 comments:

  1. this picture is so funny!!!! you better do what she says- she means business;)

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  2. P says those tubes are hard for him to put in on a grown up (both physically and emotionally) and he couldn't imagine doing it on your sweet little lilly. our prayers are with you!

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