Last week was rough – Bella was in pain. Monday morning she woke up a new woman, ready for the world! Her PT took it easy with her and they laughed and played for her whole session. Welcome back baby girl!
We cleaned out Bella’s room. I moved her refrigerator out of her room. I had kept meds in it. The nurses could also use it for their food. I put all of her meds with the family meds. I am really liking her becoming more “normal.” I am loving not having a nursing agency looking over my shoulder. (loved our nurses, they became my friends, but the agency with all of their rules and forms – no thanks!)
Monday night for Family Home Evening we planned Ring A Round the Rosie – Bella loved it!
Playing around with the ipad and in a box with sissy
Working on her letters and hanging out outside
Thursday we headed in to Cardiology. Loved how sissy shared her music with Bella. What a great visit! We were there for eight hours with all kinds of tests. Doctor said she is doing so well we don’t have to come back for two years! Her heart rate in dropping pretty low when she sleeps so I have to change her alarms and see how low she’ll go without the alarms to wake her up and get that heart going again. If it too low, we’ll have to run more tests, but the doctor feels that she’s just really, really asleep. She did hint about a surgery when she was older, but truthfully I don’t want to know about it right now. She is doing great and I want to relish in it.
Bella has had this odor about her. It basically smelled like rotting flesh. Well, it wasn’t her cast. It wasn’t her mouth or nose. It was her g-button. Awesome! She is always very defensive of her body, but she was especially defensive about her button. If I lifted her shirt, she would start screaming. I tried to keep it clean, but the odor kept getting worse. We ended up in the ER on Friday. I went in thinking we had an infection and worried – they is how she gets all of her nutrition and her fluids. She does have an infection and an abscess. So back on clindomycin and two creams – one an antibiotic and one a steroid. Hoping for some relief for that sore button! Sad, though, when the ER doc walked in to the exam room, she proclaimed, “Oh, I remember her.” Not awesome.
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