Olivia and Osteogenesis Imperfecta

When Olivia was born we never suspected anything was wrong other than the fact that she was so early. She was very healthy to be such an early preemie. In the hospital she never cried, fussed or seemed like anything was hurting, until around October 8, 2006. She was being very fussy and kept crying but she was not showing any signs of something being wrong. She was not running a fever or anything. The NICU doctors kept saying she was fine that she just wanted some attention and the nurses (who spend the majority of the time with the babies) kept telling the doctors that there was something wrong, that Olivia didn't act like that. Then her right leg started to swell. That is when the doctors realized something was wrong. They called us at the hotel and told us that her right leg was starting to swell and they thought it might be an infection. Well when you are dealing with a preemie, INFECTION, is not a word you want to hear. There bodies are so tiny that they have a hard time fighting off infections. They did blood tests and xrays but still didn't find anything wrong. They called in an Orthopaedic doctor to see her. He had them do an MRI and that is when they found the fracture, that was almost already healed. They beleived it happened in utero. The Ortho doctor was the first one to mention the possbility of Olivia having Osteogenesis Imperfecta (OI), however none of the NICU doctors thought she had it. We continued going to see the Ortho doctor every six months. On our first visit he did xrays of her legs and showed me the bowing in her femurs and tibias. He gave me a list of reasons why he thought she had OI. Her legs were bowed, her bones were thinner than mine (on the xray), her triangular shaped face, her large soft spot, among other things he told me. I at that time just brushed it all off to her prematurity, but he kept insisting she had it. She also was not gaining weight very fast or getting any bigger. She only gained about a pound a month and was diagnosed as failure to thrive, which I knew better because she ate all the time. They finally sent us to a genetics doctor who gave her the clinical diagnoses of OI. They also did a skin biopsy when she was 1 year and 2 months old. That told us that she had OI III or IV, that was in December 2007, when we got those results. They then did a test from the same blood work that told us she was a type IV. She has handled the OI very well and has not had any more fractures as of today. We are still learning every day about OI and what we could possibly face in the future. It all depends on Olivia and how she handles the OI. We pray every day for her strength and that God will do what he will with her life. We thank God for the strength that she has and continues to have.