Moving along!

Three weeks have moved along and I haven't posted. Javad is doing great! I am actively working on the Buddy Program for Javad's Place. I met a woman who works for the Muscular Dystrophy Association who is very interested in what I am looking to do with the Buddy Porgram. I am formulating the letter and hopefully get MDA on board. I am really excited about the possibility!

The Journey

We began this journey over three years ago. It seems that it has been so long ago but yet just yesterday. Over three years ago Javad was indicating that his leg was uncomfortable. We didn't know why he was acting like he was in pain. This went on for a week or so and then one day when he woke up, his leg was swollen. I came home from work and we took him to the hospital. After an x-ray, we were escorted to the ER. I was both shocked and stunned that Javad had a broken femur. How could this have happened? Let's see, jumping off the bed (that's out), running down the street (hmmm, no!), doing acrobatic moves (don't think so!). To this day, we have no idea how the femur actually broke, but what we did find out is that Javad's bones were less than 50% of normal size. The break was actually turned out to be godsend. We called Shriner's and told them that maybe Javad's bone issue may be a bit more pressing than his muscle issue. We got into the Metabolic Clinic and a prescription was given for a medication called Pamidronate (used for increasing bone density). This medication is given even two months by infusion. He gets the infusion for three days, four hours a day. The goal is to increase bone density.

So, we began on the regimen of infusions every few months and visits with Dr. Steiner (Metabolic doc) every year. DEXA scans before each appointment. With each scan. we were seeing an increase, slow but steady. I didn't care if we ever made it to "normal" but rather just wanted to hold him from getting worse and maintain. Any increase was welcome!

Yesterday we went for our yearly appointment at Shriner's. We had our routine DEXA scan and off to Dr. Steiner. Imagine my surprise when he told me that Javad's scan showed that since beginning three years ago that he has increased his bone density by 64%. He is now normal...You heard it NORMAL!!!

We have decided to continue the medication for one more year, get a standing program going, then give him a break for a couple of years. We will then do a three to four years on, two years off. We will continue this process until he is 20 when his bone density doesn't get any more.

It is really the first really good news that we've had in awhile! :)

Yeah, in one thing...Javad is normal!