Goodmorning. We got some good news 🙂
CHLA contacted us back & we were able to have one of the neuro immunologist over there tell the team of Krew’s doctors here, what their second opinion was after looking at his file/pictures. Today they will be starting what they recommended, called immunomodulators.
Immomodulators normally take about 3 months to see full recovery. It’s a group of medicines in one. They are mostly used for cancer patients, however with Krew’s case these are some things that will help his immune system calm down & also his brain not be so haywire. Today when we start the treatment, I will know for how many days/weeks he will be on them for. We were able to cut down one of the seizures meds in half from 150mg to 75. He’s still on about 6 different vitamins. Along with a few stomach meds & 1 other seizure med.
Iv been able to take him outside & sit on the patio with him in his stroller daily, giving him some sunlight since we’re not stuck on the machines consistently only every 4 hours. He’s loving it 🙂
He is still really off mentally & physically. But better than before. The confusion & body tone hasn’t changed. But he does seem more aware. Daily therapy for about an hour now of PT/OT. I just ordered a stroller/wheelchair with positioning settings to help get around, shower chair for home, & hand feet splits to keep them from pointing. ( all the things we use here ) We are hoping this is the magic potion that LACH just gave the hospital! Please please. We love you soooooo so much baby boy! Mamas doing her best for you trying to keep it together. I Can’t wait to get back to all our normal fun things with your brother, hear your chubby little laugh, & have all your cuddles again. I love you bubba!!!! My little krew krew
