I want everyone to know, we appreciate your thoughts even if we do not reply to your texts, emails or messages. Lots of people have been asking what the next steps are and when she will be doing better. Honestly with her diagnosis we have no definitive answer. We are working with both HOPKINS, NIH and CHOP to try to make all the best medical decisions for her.
Randy and I spent the day playing phone tag with her Gi, hematology/oncology and her surgeon trying to figure out the whole ng to g tube situation. We are still trying to negotiate the logistics of who will be performing her procedure. She goes back to Gi Tuesday and then the procedure should be scheduled. We love that the ng didn’t involve a surgery but after tracking her fluids it’s clear she’s going to need long term hydration. This will allow us to better care for her at home. It will allow us to give her the nutrition she needs without being inpatient. It will give her more normalcy. Gi does not want her to keep the ng as a long term method. Her Psychologist is on board with this
We are hoping her next stay is short. She tends to get released quicker than her team plans for so hopefully she keeps on that trend.
Thank you for your understanding and support and love.”
Tonight we paid it forward in honor of cam diamond. I work with carol (cam’s mom). Today is cam,s birthday. While we never met cam we know her family and they are so kind and caring. Carol was one of the first people
To ever come visit addyson in the hospital. She brought her a stuffed moose and walked with addyson to the playroom. She held addysons hand while she was loopy from meds. She helped guide us through the inpatient process with rounds. She is always checking up on us and providing support. So today we made sure to honor cam. To spread joy. We bought dinner for another family. We love you diamond family
Beaming with hope 