3 days ago, the doctors told us we had a “very sick baby” on our hands.
Each day since, our girl has shown them that she is strong, determined, and ready to bust out of this hospital.
First, we’re back in BMT! It’s like coming “home” for us and already makes everyone feel much better.
Our BMT nurse today said, “What are we going to do when y’all leave?!”
I cannot speak highly enough about the nurses that have become our family over the last 11 months!
Agh! On to Avery.
Basically, they’re beginning to wean her off most of the medications.
Her VOD is improving.
They’re not getting as much fluid out with each opening of her abdominal “drain.”
Today marks day 21 of the Defibrotide and is the expectant time for it to begin resolving.
They’ll switch to draining every 8 hours (currently) to 12, to 24. If she can go 24 hours, we can take out the shunt.
Her blood counts all look great still, except for the platelets. Continuing to wait for them to fully come in.
Her face and lips look amazing! A little dry, but so much better.
Not to mention, some of the swelling in her face and extremities is going down, so we’re really starting to see our sweet girl again.
She even has a bit of fuzzy hair coming back!
And yesterday?! She was awake ALL DAY LONG! No naps. Just dancing in her bed while watching her songs in ICU.
Today she’s dancing in BMT and we’re all here for it.
It’s the little things every day that keep moving us forward.
Thank you for continuing to send so much love and support to our sweet Avi.
