Ok so heres what we know. Sammi's CRMO has spread across her mandible and lower legs/feet. The edema that had her in the hospital was caused by a reaction to one of her blood pressure medications. We have changed her to a new one that includes a diuretic. For now she wears compression socks til the swelling is controlled. I will be filing a complaint with the hospital this next week. The hospital failed to consult with a nephrologist and did not perform standard tests to assess her kidney issues. They also refused to address her pain with more than Tylenol and as someone with severe edema on top of chronic pain, this is unacceptable. Unfortunately, there isn't a lot of choices in the valley for pediatric care. Most hospitals only treat pediatric cases in the emergency room and do not have a pediatric ward within the hospital. This is a growing frustration for our family because she isnt 7 she is the size of an adult and we just so not have the financial means to go outside of the state to seek treatment. So for now I have do just ask for help I have a new pile of bills for labs that insurance has deemed "experimental" and will not cover. We spend 4 days a week in various doctor and physical therapy appointments. I have not seen a doctor myself in 2 years (I am diabetic) and I am trying not to lose hope, but it ia hard. Thank you for your continued thoughts and prayers. It is the love shared by all of you that gets me through. https://www.gofundme.com/4jkunj4 #gofundme #medicalhelp #crmowarrior #CRMO #iganephropathy #pneumonia #chronicillness #sickkids #helpme #valley fever #azvalleyfever #Chronsdisease #medicalunicorn