This is a blog about the joys of raising Sophia. It is intended to be REAL, inspiring, and shed light on the experience of having a terminal child. I hope that our experience will help people in one way or another. I could have never imagined having a terminal baby with special needs. The news was devastating. But there is joy in this journey. And life lessons to be learned. God knows us, individually, and he blesses each of of our lives daily. THIS, IS SOPHIA'S STORY...
Friday, December 1, 2017
She's in the hospital again. Not sure why yet. She seems to be sick with something. Just when we think we've been trained on everything, and can handle it all at home, something new and scary happens. Last night it was (accompanying her bug) heavy gasping, wheezing, and very low oxygen that sent us in :-( She's very tired this morning. Poor thing was a pincusion last night :-( She has terrible veins and we didn't get all the blood we needed for tests. We all gave up trying and decided to let her rest a while :-( We also couldn't get an iv in for fluids :-( She really hadn't peed all day so we had to push straight pedialyte as fast and as long as she would tolerate, which meant no food, but hydration trumps nutrition :-( We really pushed it but she finally has a wet diaper this morning and so I've mixed in some milk now :-)
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