Life update: 
– Eliana & Parker had a wonderful Christmas! Jette came to town for Christmas day. Santa was very good to these 2. Along with some very generous familes that sent us some amazing gifts.
– Eliana had her hair highlighted with purple. Thanks to my high school/college days working at a hair salon, it came out great!!
– Deedle is back in town to help with the hospital trips + care for Parker
– The 2 new puppies + 1 older dog are filling our lives with happiness and laughter. We knew it would be a lot of work, but they are so worth it. Eliana now has couch snuggle buddies, and companions that hate fireworks as much as she does.
Health update: Eliana is very nephrotic. She is dealing with puffiness and swelling like she was for the first 1.5 years after her diagnosis. She is going to CHOA 5x per week for plasmapheresis which helps to sustain her kidney function while she fights off the BK virus. The BK # is trending down (yay!), but at a slow rate. PJ and Deedle take turns bringing her on the weekdays, and I (Arielle) bring her on Saturdays for her longest day of treatments (Plex + IVIG + cidofidir – spelling?). She enjoyed the day at home on Christmas day, then was admitted the following Monday for a blood transfusion bc her hemoglobin was very low. She was admitted again 3 days later because her perm catheter lines were no longer working so the surgery team replaced the lines and then immediately sent her back to the floor for plex. We got home late, but spent New Years Eve at home. We didnt count down to midnight bc we had to wake up early to get back to CHOA for the normal 10-12 hour Saturday. We plan do continue to do whatever it takes to fight this disease so Eliana can go back to truly living her life like a kid should albeit during odd this Covid era.