Stephanie Valdez: “So excited to finally post some good news…
Harlie’s first appointment with orthopedic surgeon that placed screws in Harlie’s hip went great. He said it’s still in place and now she is able to put weight on it and start walking with assistance:-)
Her second appointment today…she was finally able to get her G-tube removed and they are also trying to schedule surgery to have her central line (Broviac) removed, hopefully soon..
They are also exited that a certain blood test they run every week on her, called the Von Willebranb, has for the first time came back in normal range. It monitors the inflammation in blood vessels from the disease and is a good indication that the disease is settling down and the new medication Orianica is helping:-)
She will always have this rare life- threatening disease that has no cure but she is battling it and getting stronger everyday.. So proud of you Harlie.. You got this..xoxoxo”