Justin

I haven't blogged since summer. I kept telling myself it was because I'm so busy. But the truth is......I couldn't. I have been too sad....too scared. We just have so many unknowns right now. We had a great summer. We did a lot and enjoyed the warm weather. Got a camping trip in, rented a boat for the day it was lots of fun. We thought Justin was having liver issues because blood work was showing elevated liver enzymes. Not too high, just above normal. We took him to aLiver Doctor and for second opinions at the University of Washington. He went through ultra sounds, CT scans, MRI's, tons of blood work, and finally had a liver biopsy. Come to find out his liver is pristine. Nothing wrong at all. Justin's enzyme levels just run higher than the average person. Ok. In the meantime, Justin took the summer off from basketball to work. He was saving up for a new Jazz guitar. Through out the summer he kept telling us about how "dead" his legs were. We, especially I, kept telling him, well your just out of shape, exercise. He kept trying, it wasn't working. Other than that he was fine. School started, his senior year, his first fall ball game. We watched from the bleachers shocked. Justin looked like someone put cement blocks on his feet. He couldn't run up and down the court. I couldn't understand. This is more than out of shape, could he be injured? But both legs? I figured he needed some physical therapy. Marce was positive something big was going on.....I couldn't let myself think that. The next day Marce had him in the Dr's. The Dr. said he had muscle loss in his thigh muscle and took blood and said lets send him to a neurologist at Children's hospital. She would call us later with a referral. The next day she called with the lab results. Normal CK levels are 20 - 100.(this is how many muscle enzymes are in you blood stream....in other words how badly your muscle are breaking down.) Justin's levels were 3,113. She said forget Children's we want him seen at the University this week. We went and saw 3 neurologist at UW and they felt pretty strongly that Justin had Limb Girdle Muscular Dystrophy. We were devastated. I was extremely angry. How could he grow so big and strong just for it to waste away. This started a new group of tests for Justin, many physical examinations, more MRI's, and a 2 hour EMG, so many blood draws we have lost count and finally another very painful muscle biopsy. Here it is January 4th and we still don't have a definitive answer. We are waiting for 3 more test results that were sent out about 3 weeks ago, ruling out some very rare genetic diseases. It still feels very up in the air. A lot of unknowns and a very unsure future for my son. I'm hoping next week we will have some answers......I hope. That's all I can say right now.