Chugging along

Today was on of those days where I felt completely defeated by addyson and her medical complexities. The past few weeks it has seemed like every doctor has needed to remind randy and I that Addyson has a chronic pain disorder that will be life long. We are well aware of this. We are aware of the constant complaints of pain. We do the best we can to control her pain.

Addyson is treated by the following specialities:

  • Genetics
  • GPS
  • Gi
  • Pain management
  • Hematology/oncology
  • Rheumatology
  • Internal medicine
  • Psychology
  • Physical therapy
  • Immunology
  • Pulmonology

She is treated at the following hospitals:

  • Hopkins
  • Children’s hospital of Philadelphia
  • Nih
  • Childrens national
  • Kki

We only use different hospitals because some hospitals can’t cover some of her disorders. Nih has a clinical trial for her fever disorder which we learned is only stopping the external fever not the internal flares. Chop is treating her motility disorder, kki is pain management, etc etc. this is how it works with chronic illnesses. Many times you are sent to different places

This week we keep pushing forward.

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