We made it through a rough month full of sicknesses that went careening through the family, a respiratory bug and a horrid, long lived stomach one. We are finding our barring again.
Aimee has been up and down with some pain, some grins, and a lot of sleeping. Her monthly bloodwork has been a bit goofy so more changes are being made to her TPN including another added medication. She is basically a super absorber through her central line. Her providers see her as an anomaly in many ways. Aimee likes to do things her own way. Despite being on “a whiff” of lipids only 3 days a week, her triglycerides and all fatty acids are extremely high. Her vitamin levels have also been tricky to keep right. There is also some indicators of stress on her organs showing. That one though is very much expected with longterm TPN use.
Overall we are taking life about one week at a time currently. There is much sweetness here in the middle of all the hard. Last week we were able to enjoy individual time with each of the other 4 kids outside of Aimee’s room on the patio. Next week we start nature school. Much sweetness.
