Up until a few weeks ago, I’d never heard of Wishbone Day, a day dedicated to promoting awareness of Osteogenesis Imperfecta (OI), the special need with which the little girl we’re in process to adopt has been diagnosed. Now, however, just as we’re committed to embracing and celebrating our girls’ Chinese heritage, we are making a commitment to understanding OI and providing our little girl with the best care available!
A relatively rare condition, it’s estimated to affect about 25,000 – 50,000 people in the United States today. The Osteogenesis Imperfecta Foundation reports that people with OI usually experience frequent broken bones but may also have a number of associated characteristics – everything from bone-related conditions (bone deformity and bone pain, short stature, spine curves, low bone density, and dental problems) to conditions related to other bodily systems, such as hearing loss, respiratory issues, vision problems, and fatigue. There are currently 8 types of OI with which people can be diagnosed, generally based on clinical presentation in conjunction with a genetic test (a specialist has given us a guess about which type he expects our daughter-to-be has, but we won’t know with certainty until we get her home and have her see all the doctors she’ll need to see).
We also won’t know fully what effects OI has on our little girl until we have her home. Some people with OI walk easily; others need or prefer to use wheelchairs. Some are of average height; others are of short stature. Some have respiratory issues or other complications; others do not. We’ll just have to see what happens once we have her in our arms!
There have been many recent medical advances in the treatment of OI. We expect that our little girl will have rods surgically implanted into her legs to strengthen and straighten them and guard against future breaks. We also expect she’ll have regular infusions of bisphosphonates to strengthen her bones and help with bone pain. We are incredibly grateful that she was actually recently moved to a wonderful foster home in China that specializes in caring for children with OI, so she has already begun receiving bisphosphonate infusions, which will be so great for her comfort and development! This foster home is also better staffed and has greater comfortability in working with kids with OI than most orphanages, so they have been working with her on her gross motor skill development, as well.
We’ve been reading and watching videos about how best to hold and physically care for children with OI, and we’ve also begun making contacts with the multiple doctors who will be involved in her care – our family pediatrician, of course, but also a local pediatric orthopeadic surgeon and the specialists at the OI center of excellence in Omaha. Other parents of children with OI have also already been invaluable resources!
We don’t really know yet all the effects Osteogenesis Imperfecta will have on our lives, but we look forward to continuing to learn more about it and providing our little girl with the best care that we can as she joins our family! We look forward to including all of you in that, of course, as well 🙂