A Promising Day

Well today was a long day but we are feeling thankful for a good visit. I will start with Noah. A cardiologist from UCLA came and evaluated Noah. She explained to us that Dr. Chang was concerned that Noah was showing signs of Cardio Myopathy and ordered a cath lab test done on him. All four EKG's done on Noah were all very different and she felt that if it was Cardio Myopathy they might not see so many changes in each EKG. She felt like it was showing signs of inflamation around the heart. After hearing that he recently had strep she seemed even more convinced that it is most likely inflamation. He needs to take Ibuprofen three times a day for a week,continue to wear his monitor, they did blood work and we will know for sure if it is in fact inflamation when we return to UCLA next Thursday. If it is not inflamation then they believe it is the early signs of cardio myopathy and they will do a cath test right away. We are obviously praying that it is just inflamation. It looks very promising. Noah did great today. He was sad that he had to go to the doctors again but made the most of it.

My visit was very promising as well. These Neurologist know their stuff. You can tell they have a lot of experience with Muscle disease patients and I was very thankful for that. They want to do a muscle biopsy on me :( Ouch! They feel this is important to gather specific genes from the muscle tissue. These genes will give them more of an idea of what groups I fall under and rule out others. He had his top three that he thinks I fit the category for one being Limb Girdle disease and two others with complicated names that I can not remember. They clearly saw that I had a muscle disease and pointed out all of the same muscle weakness the other doctors had pointed out. We wait for insurance to authorize the muscle biopsy which could take a few weeks and then schedule it at UCLA. Then we will follow up with them on how they will further proceed. I'm hopeful for a diagnosis and was pleased to hear them say how they have come along way in finding treatments and advances to help combat these muscle diseases. I LOVED hearing that. Although we still don't have answers we trust that the Lord does and in his time hopefully we will find out. I'm very tired so I hope I explained things well. Feel free to ask us any questions.

Thanks for all your prayers, meals, cards and sweet gifts. We feel so blessed by all of you. Your love and support is making it easier to walk through this.