Having a child with OI

When my S/O and I got together, I knew very little about what Osteogenesis Imperfecta was. I had never even heard of the condition until we met. I knew there was a 50/50 chance of any of his children inheriting the condition. His son had been taken along with him on a trip to Montreal Shriners Hospital, to have him checked for the condition. Luckily the gene was not passed on to him.

When i became pregnant and during my pregnancy the thought never really crossed my mind that our child could be born with OI. I had an amazing pregnancy, no complications. My daughter was born on February 24 2011, at 9pm, weighing 9lbs !!! I was a little nervous before being discharged as the pediatrician checked her out and noticed a heart murmur. (it eventually went away!!) .. and he was going to xrays, just because some OI babies come out with broken bones.. but we ended up going home !!!! Originally I was going to wait til my S/O's next appointment at Shriners Hospital for her to get genetic testing, but decided to have the pediatrician get us in to genetics in Hamilton. The blood sample was sent off to Washington, so we had to wait a few weeks for the results. During the wait, i started realising how blue her sclera was. We got the call, and they confirmed what I was fearing, that our daughter has Osteogenesis Imperfecta Type 1. We cried.
November 2011 we went to Shriners Hospital, mine and my daughters first time. We met with the doctor at the clinic. They took a urine sample, Dexa Scan (to measure bone density), and x ray. Her bone density was -0.08 under what a normal child her age would be. Still considored in the normal range. X rays came back great.

Her first birthday came and went... still no fractures. I never knew when it would happen or how it would happen. She learned to walk, and has had many falls and she always shook it off and kept on playing. We had a scare in the summer, but turned out to be nothing. November 2012 we went back to Shriners for her second clinic. No xrays, only urine and Dexa Scan. This time, her scan came back -2 under what a child her age should be at. They said, she has gained some bone density and didnt lose any, she just isnt at the range a child of her age would be at. So i was really concerned about her scan, and thought to myself what her bone density would be like in another 6 months to a year... would she be fracturing soon????
I found myself a community for support on a facebook group. A group of parents that have children with OI. Any questions i had i could ask there. I got to talk to other mothers and even become online friends with them. I have learned a lot about OI since having my daughter. I am so thankful for my online community !!! :)

In February 2013 is when she had her first fracture. She was playing with her mega blocks, stood up and slipped on one. X ray showed left tibia fx. Unexpectedly again in March, 6 weeks after her first fx, she fell and fractured her other tibia. Right now both of her legs are casted. Emotionally, this has been so hard. I dont want my child to be in pain, and because her bones are brittle a fracture is hard to prevent. I can honestly say, i am scared to have any more children. I never could of imagined what it was going to be like, or how scary, and sad i would be for her. I dont want her to fracture, but if she does she will get treatment. Now that she is in two leg casts and cant walk, or do anything... i have been thinking about getting her a wheel chair and walker. I dont know whats going to happen in the future, and its really scary. At any given moment she could fracture again. I cried for her... because as scary as it is for her, it is for me too.