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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, September 5, 2011

Happy Labor Day!

Lilly has been very busy lately. Last Wednesday my dad and his family visited from out-of-state and we went to the lake with my brother P. and his family. I was in the water with Lilly in her water sling and she had so much fun letting her legs float around. She really seems to enjoy being in water.

Friday Lilly had her physical therapy and occupational therapy at the house. They were both very difficult sessions for her because she was having terrible gas pains much of the day. I kept venting her g-tube but it would only bring relief for a short time. Then it would start all over. However she did better in certain positions. A new thing that she did in occupational therapy was to play with pinto beans. While Lilly was on her belly, the therapist put beans on Lilly's hand. Lilly spent a lot of time squeezing beans and pushing them all around.

Saturday we came to stay with my mother-in-law, who lives a couple hours east of us, and we are still at her house. This part of the state got hit hard by Hurricane Irene. My mother-in-law had trees fall on her house. We were hoping the tree removal guy would show up today but maybe he's actually taking Labor Day off. My sister-in-law has a bakery in a nearby town and her bakery had 4 feet of water in it by the end of the hurricane. There were also tornados in this area that did a lot of damage.

Lilly has a busy upcoming week. Tuesday she has both physical and occupational therapy. Wednesday she has three appointments at the hospital: kidney scan, pulmonologist, and g-tube check. (This hospital is close to an hour away so I like to do as much as we can at each visit.) Thursday, Lord willing, Lilly with have her heart catherization at the hospital (and it will show that she has no problems that would interfere with surgery!). She maybe be kept overnight, depending on how she is doing. Friday will be a quiet day for further recovery.

Happy Labor day everyone!

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