Hi Everyone!!! Hope you're having a wonderful day. I have been busy this morning doing some crafting stuff with yarn and some designing in Cricut Craft Room. If you're not familiar with that; you can use various shapes and things to create your own design or you can use the shapes that come with the cartridges made by Cricut.
Now that we've had a moment to break the ice if you will I'd like to share our story with you. I'd like you to meet me and our son. We were both recently diagnosed with Osteogenesis Imperfecta. It's a funny sort of story. I say that in this one, but when you're newly diagnosed with something it's usually scary and you wonder how you will get through it? What is this? Is it something that goes away or can go away? How will I deal with this? These are just a few questions one may think of.
Our son was diagnosed a little over a year ago now. We had been dealing with him having fractures. He had one that we knew it was the trauma that caused the fracture. The others that he experienced there was little or no trauma involved. These mostly happened at school. The school wasn't at fault by any means. I say this because when they're out on the playgrounds the students are supervised. Those with special needs like our son has other supervising him when he's at play. The school nurse called me one day and said I think he's hurt himself again. I am afraid to send him home on the bus. I think you should come pick him up. I will explain what's happened. I said ok and was on my way. I got there and she did just that; explain what he did. She also mentioned that when I take him to his pediatrician ask them to check his vitamin D level and have them do a bone density. I did ask for these things. They were able to do the blood work for the vitamin D level right there. The bone density they set it up and it was done right away. He did seem like he was in pain, but the trooper he is he made the pain not appear as bad as it was. I took him to his pediatrician they examined him then sent us on to another place for an xray as they are not able to do xray's at their facility. I went there with him and sure enough he had a fracture. We had his arm set and he was back to school the next day.
Later we went for the bone density testing. That was done and he was referred to a nephrologist because of his bone density and the level of his vitamin D. He was at 18 in his vitamin D and his bone density showed that he was at fracture level, -3.1. We went to the nephrologist office to receive this report. We learned that our son has Osteogenesis Imperfecta. We were taken aback at first; he's also special needs. He has been diagnosed with Sensory Processing Dysfunction, Developmental Motor Coordination Disorder, Aspergers, Dyspraxia and Hypotonia. Adding Osteogenesis on top was crushing. We had learned how to help him through his special needs, but this was different this was an illness one that doesn't have a cure. Not yet anyway, but God can do anything!!!! I was in tears when I learned this in the office. His new nephrologist comforted me. He then explained to my husband and I what Osteogenesis is and showed me what was one of the main symptoms of Osteogensis is. He pulled out that little light that you don't really like when they point it at your eyes. He pointed it at our son's eyes and said do you see this coloring in his eye; the bluish tint? I said yes I do. This is one that we associate with Osteogenesis amongst other factors that indicate this disease. Not many in the United States have this. Just as he was pulling the light away from him he was going to do something else; my little one the funny guy that he is....said " My Mama's eyes are blue too." The doctor didn't think much of it, said to him that's good, but yours are blue and the whites of the eyes are blue. Our son says,"No the whites of her eyes are like mine, they are blue." Yup, you guessed it! That little light came at me, that little light shined in my eyes. He did say your eyes are darker than your sons, but you do have the blue eyes. He finished with our son. The rest of his exam then turned his attention toward me. He said I want you to talk to your doctor; ask him to draw these blood works on you and ask him for bone density. My doctor was wonderful as always and he did his research and added to the blood work that was being requested. I did that and the results came back; vitamin D level was at 12 and I too was at fracture level in my bone density.
The treatment regiment was being decided. We went home and began to search the internet what Osteogenesis Imperfecta is. We dug up some information, but the questions out weighed the information that we found. I can say that there are great groups on Facebook; I know social media right. Many people turn away from those type of sites. I usually do too as well, but because I do many crafts I decided to go for a Facebook page and many of my crafting friends follow me there and I have my own website as well. I will put that website at the end of this post. I prayed about finding the information that we needed. God provided that information through some of the groups that I now participate in. He also gave me some great Christian friends which I am very thankful for them. They have helped me in so many ways. I am really thankful to each one of you and if you're reading this you know who you are.
Our son has now been receiving his infusions for just over a year now every four months and hasn't had a fracture!!! Praise God!! I started my infusions so I am hoping that I will have the same effect as his did on him that I will not be fracturing every time I turn around.
I started this so that you could see in our lives of how Osteogenesis Imperfecta plays out in our lives and what we have to do on a daily basis to protect ourselves the best that we can. I hope you'll stop by again!!!
Grace & Peace,
