-Brenda, ortho nurse practitioner, has been a huge blessing doing weekly wound VAC changes at our home and weekly changes in clinic. Elliot and Walter were there today too, but not pictured ;)-
In other news, we spent a couple hours in clinic on Tuesday with a PT and the wheelchair company working on her chair. The bigger she grows, the more she twists, the more challenging it is to get the chair to fit her correctly. We’ve been having more pressure spot issues, which could turn into pressure sores when she gets back to typical days spent in her chair. With a new back, seat, and headrest, we are hopeful to see a reduction of these spots and better support.
Overall, Aimee is making progress. We’ve been having a lot of communication with GI from home to make different tweaks to her routines and meds. It is all so complicated now, but worth it, as she is less distressed and starting to have periods of alertness. We’re kind of figuring out her new routine while she is at home in bed. As she gets more comfortable, we will start to have her spend more time in her chair and start moving towards returning to school. An intimidating, uncomfortable step to consider, but hopefully Aimee will be able to participate in things she enjoys again soon.