Emily was in such pain with her hips prior to her double hip replacement that she was under palliative care because of the adult doses of medication being given to keep her "comfortable". She would scoot herself along the floor on her knuckles around the house as she could no longer walk. She was confined to a wheelchair at this point and her quality of life was diminished.
We went to the world renown skeletal dysplasia specialist Dr. Mackenzie at AI duPont Children's Hospital in Delaware. He is the only surgeon to know of, have worked on and trusted to care for a child with SIOD in the USA thus far with these complexities. He and his nurse practitioner, Colleen Ditro have been instrumental in Emily's care since we met 7 years ago.
Two years ago Emily had the hardware removed from that surgery. Eventually she will need a hip replacement, her body will tell us when. She partakes in PT's of aqua and horse once a week to this day for her quality of life, recovery, respiratory and endurance issues. She only uses that wheelchair now for endurance or very sick days, and uses forearm crutches most days, yet gets around the house on her own.
We know that keeping her moving is key. HETRA, aqua and school help us to do that. And of course our specialists in Delaware.
Two years ago after surgery
Dr. Mackenzie after 1st surgery 7 years ago
