Good morning! Krew finished his 6th procedure of plasma pherisis. He did have the times cut in half because his blood pressure kept dropping, but he finished strong! His neuro is still the same from what the MRI showed yesterday. No increased swelling. His EEG showed no signs of seizures but he’s on 2 meds Keppra & gabapentin for it to make sure he doesn’t have anymore. He’s on a vitamin cocktail of a,b,c,d,e little hulk baby! He’s gained weight from 22 a month ago to 29 on formula through his feeding tube. Thank you baby Jesus! His arms won’t move right now they are stuck straight & his hands are clenched together we are not sure why 🙁 His eyes are little less stuck not looking up at the ceiling anymore. His skin color is back to normal. We’re waiting for multiple genetic tests to come back in a few weeks to see if he has a mitochondria disease. Still haven’t pin point what exactly he has but for now until further testing ADEM. Possible vitamin injections &/or steroids the rest of his life to help prevent this sickness. He’s in PT OT about 20 minutes a day in bed, working all muscle movements etc. About 1 more month in here let’s get you home my lover boy!!!
Thank you to everyone for helping us get through this financially & in all aspects.
we love you guys so much
love chloe
