All About Me
In the beginning (my beginning) there were my Mom and Dad. If you don't know how that works there are a whole bunch of web sites that will explain it. I'll skip the gory details but that's me up there wrapped up nice and snug.
Birth
I was born on September 8, 2007 (9-8-7!). Of course I wasn't due until late October so I was about 6 weeks early. After I was born I spent a relaxing 10 days in club NICU (that's Neonatal Intensive Care Unit) at Huntington Hospital.
The nurses and doctors there took good care of me and made sure that I was strong enough to go home. I got to do some tanning and I did a lot of drinking. All in all it was a nice little vacation if you ignore the needles and all the stuff they kept sticking on me!
Finally I was able to come home and for the first month or so I did all the things babies are supposed to do. I had some bottles, my parents changed some diapers and no one but me got much sleep.
Broken Bones
Then there was a little incident... On October 1st, when I was 22 days old, my leg broke while my dad was carrying me. I had a special brace that held my leg in place that I had to wear for three weeks. Then, the day after I was able to take the brace off, my arm broke while my Mom was carrying me. Needless to say, the local Child Protective Services office and the Suffolk County PD were a little curious as to what was going on.
I was taken to several doctors to try to find out why my bones seemed to break so easily. I saw a endocrinologist, a geneticist and an orthopedist. Everyone ran their tests (which would have been fine if they didn't need to take so much of my blood!)
It was the geneticist who made the fateful discovery. And she was the only one who just wanted my drool and left my blood alone! She had a lab do a genetic screening for Osteogenesis Imperfecta and it came back positive. While this got CPS off my parents back, it also meant more doctors for me.
I went in January for some tests at the Kennedy Krieger Institute (KKI) in Baltimore, MD. KKI has a group of doctors that specialize in OI. Because OI is a genetic disorder, there is no cure for it. After the tests, it was determined that I have Type I OI which is the most common and usually the mildest form of the disease.
Now I go down to KKI every eight weeks for a pamidronate treatment. It takes three days of IV's but the medicine should help make my bones stronger and less likely to break.
