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Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Monday, August 25, 2014

A Wednesday day in the life of Gator.. Picture addition


I have begun this post three times... Now technology, please work. 

7:30-sneak into mom's bed
8:30-get up and play a bit while mom is putting meds together
8:32- morning meds
8:36-pick a sight and clean it
8:37-Lovenox
9:13-Eat breakfast 
9:20 still eating breakfast, oooopsie forgot this med
9:28-still working on breakfast.. A tiny bowl of applesauce and some milk..
9:48-finishing in a hurry.. Dylan just got here.
9:50-dressing change
10:36-supplies delivery
11:01-bath

11:17-dressed
11:21-make bed
11:30-helping mom with girls
12:36-favorite lunch/food of all time

12:45-afternoon meds
12:56-sugar chaser
1:00- rest time
2-ish-a super rainy day. It rained so much we haven't been able to put the tent away. We even got hail. The funny thing about that is Gator was fascinated by it. He loves pebble ice a ton. He crunches crushed ice all day at home. When this magical ice feel from the sky he wanted to eat it. I told him go for it... He put a bunch in his face and said through crunches "man that is good hell".... I did not correct him. 





3-5ish turn off the TV and play, read and build
6:10- dinner
8:33-evening meds

8:40-waiting for family prayer... Then off to bed
-this was my first 'day in the life, photo addition' I plan on doing it a little different next time. The things you learn. 









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