Greetings!!

Greetings my friends, old & new! My name is Christine, I'm a 33 year old single mom of an adorable little girl name Haley' Jean. She & I were born with a rare bone disorder called Osteogenesis Imperfecta Type III, otherwise known as brittle bones disease. It is characterized with broken bones with little or often times no trauma at all. Approximately 25,000 to 50,000 people in the United States live with this debilitating disease. The reason the numbers are so broad is due to misdiagnosis. There are about 8 known types [type III being the most fatal] with each differing in symptoms. When I was born, each of my extremities were broken beyond disbelief. Since then, technology has vastly grown providing children the chances of walking & an improved quality of life. Treatments such as Bisphosphenates to increase bone density while decreasing fracture rates by more than half, corrective surgeries of the upper & lower extremities; rodding, physical therapy & swimming have made the dreams of longevity a possibility. My daughter Haley Jean was born February 28, 2013 at 30 wks gestation via c-section. I was placed on strict bedrest for 6 wks prior to delivery due to compressed lungs from my expanding abdomen. There was a 50/50 chance that she'd inherit the same mutation as I have. After my genetic testing was complete, it showed just that: The potential of the child having OI was 100%. It didn't change my decision to have her, which is part of why I opted out of an amniocentesis. Because I had her premature, she'd developed a lung disorder called Broncho Pulmonary Dysplasia or BPD...This is caused by a huge lack of surfactant , a liquid in the lungs that help them expand as the baby inhales. Without adequate amounts, it can cause the lungs to collapse making it harder for the baby to breathe. Since then, she's been on si-pap, bi-pap, endotracheal tube, high flow nasal canulla....Whewwwww!!!! I can go on & on. For the most part, the OI has been the least of her troubles. With only a few fractures since birth, a significantly low amount, it's rejuvenated my faith that she'll be just fine. Spending 6 months in the NICU & on & off hospital stays since then life has been one huge journey. I've had to learn to adapt to taking care of an infant with special needs with my own physical limitations. My semi-chic bachelorette pad soon turned into a nursery/hospital ward. She came home continuous o2, meds every 12 hrs, a feeding pump hanging on an IV pole, pulse oximeter to track heart rate & respiratory status & an apnea monitor. Life never stopped for us. As I went back to work, things seemed even more hectic. I was working 10 hour shifts 5 days/wk. With home nursing not yet set up family stepped in to take over. People ask me all the time "How do you do it?" And my answer is always the same..."I just do it" There's not a day that passes when I don't think about how did I get this far. I'm always baffled that the answer is still unfounded. I've never been known to quit anything that I do. With the Grace of the Most High, it is only with Him that I can make it through one day. I hope this blog will bring encouragement, strength to those that are struggling with health issues, or life in general. My goal is to bring awareness about OI, awareness to those unaware of disabled parenting & the hardships of acceptance. A lesson motherhood has taught me is that sitting down doesn't mean you're less than a parent. It doesn't validate your competence, but it solidifies your innate ability to love....<3

`HJ's Momma...

About 20 weeks here, just before I was placed on hospitalized 24 hr bed rest

Two days before showtime :)