Update this morning ~ 🥹

His Batten's team has CONFIRMED,  they DON'T have access to his brain/CSF, another BLOW, Malachi's brain port IS  KINKED in the middle of his brain.

A neurosurgeon has been called immediately as a rash/hives have developed as well.

Surgery this MORNING has been scheduled for 10:30 am, which will delay his recovery time, his brain infusion, and the time spent in this "hotel hospital"

Updated- now at 5pm

He's upset, he's frustrated, he's in pain, he's exhausted,  but with little bouts of humor...

He's fighting to keep going, putting Batten's kids under can cause long term effects, complicate Batten symptoms,  and possibly long term effects. This is his 3rd time going under,  and his lower half of his body now tremors constantly like Maleea. New normals are forming for sure...

Tomorrow is BRAIN  infusion FRIDAY for our little little Batten beauty Maleea.

We need all the strength to keep going through this....