Day 483 - More Med Weaning!
Today marks 5 months since Everett moved back home to Maryland. The time has flown by, and we have thoroughly enjoyed living as a family again. Everett adores playing with his big sisters each day and we've noticed a dramatic improvement in his mood and his gross and fine motor skills since his return.
He continues to receive physical therapy 2 to 3 times a week, occupational therapy 2 times a week, and speech 1 time a week at our home. This is the first week Everett has not had to return to Sinai for any lab draws or infusions.
We have also heard from our team at Duke. After conferencing with the team at Sinai, they all agree that Everett's labs have been stable enough so he may begin weaning from his immunosuppressant (anti-transplant rejection drug). This is a huge step, but the news doesn't stop there! Dr. Prasad believes Everett is ready to wean the Ecluzimab (super expensive medicine used to prevent Everett's red blood cells from bursting) from infusing every other week to once per month!
We are thrilled that Everett's health has improved enough to wean medications. We pray that his little body will be able to handle these adjustments well. Most importantly, we are hopeful that his immune function will improve, a GVHD rash will not appear, and his red blood cells will not begin bursting again. Thank you so much for your continued prayers and support!