First, Avery’s mouth sores seemed to have increased in intensity.
Yesterday evening she began “clearing her throat” as a sign of pain and discomfort.
Not to mention, her drool has increased ten-fold and she is absolutely refusing her oral meds. (see the front her her outfit)
Avery has been very good at taking her oral medicines since day one.
The fact that she’s refusing them speaks a lot all by itself.
She also hasn’t had a bottle or food by mouth since yesterday.
So, she’s on pain medications to help with that discomfort. Plus, all but one of her meds can be given through her IV.
And her TPN will be increased to 96% of the nutrients she needs.
Therefore, eating isn’t a big deal right now. It’s all about making her comfortable.
The rash around her BioPatch looks about the same but doesn’t seem to be spreading into her lines (which is GREAT!)
They’re running an antibiotic in alternating lines at night to help stop any spread as well.
She’s still having some itching around her dressing, but we found a new medicine for her yesterday that seems to be working to stop the itch.
All that fuzzy hair atop her head? It’s starting to fall out.
We’ve never really seen her with hair, so it’s not a huge deal, just noticeable today.
She had PT yesterday. OT today and both say she’s doing really well.
She’s trying her hardest to stand on her own and to crawl.
Avi LOVES her new garden/kitchen set that was a recent birthday gift.
And although she may be hitting milestones at a different pace than Big Sis, she’s still getting them done.
Considering all she’s been through over her first year of life, we see that as a BIG win.
