Hey everyone. Eden had a great weekend. Sat we headed to the pool to spend the day and Stef came in town so Eden was very happy to see her. Then she and Riley went with Dad to the fair to see Saving Jane. She had a fabulous time hanging out there and riding a few rides. After they left we met up to get Eden back so she could go to church Sunday morning with her friends Allie and Lil and Abby and Madeline. Thanks Amy for bringing her home. I was not able to attend as my Dad was in the Hospital and CeCe and I needed to go check on him. (He is fine and home now) After church we headed back to the pool (its our fav weekend hangout spot) at about 3 the kids had to get dressed to hook up with Dad and head to Chris wedding up in New Albany and they had tons of fun and came home very tired. Congratulations Chris and Rachel !!
This morning we were up early and headed to Clinic. We had a lot to cover with Dr. Nick today. (FYI-we missed not having Justin around to tease and have fun with... WE MISS YOU!) Eden's counts are still fine and I am not completely sure when we will start to see them drop from MiBG therapy. Dr. Nick seemed content with how well she was feeling and how well she handled the treatment and basically we will just watch her counts twice a week and transfuse when needed and hope they recover without a rescue. He and Dr. Mosse are in agreement that the spots they saw on this last MIPS from Philly in her skull have been there and it just took extreme amounts of MiBG to be able to see them. We talked about having her do her 6 week scans in Philly so we are comparing Apples to Apples but when he spoke with Pat B in Philly she said they like to have the scans done on the same equipment it has always been done. I am not sure I understand how we will get accurate reading if we know its there but know it wont show up on the scans in Columbus.. How do we know if it worked or not?? For now I will back off and see what happens but good or bad I want accurate results in 6 weeks and I will make that known when the time comes.
It should be a quite week and if anything comes about I will keep you updated.
Have a great week and enjoy life!