Thursday, April 19, 2012
Today we made the all day trip to UCLA to find out my muscle biopsy results. One of the students came in first to see me. She explained that Dr. Shieh my doctor would be in to give me my results but that she wanted to examine me first. She did the normal walk for me, stand on your toes, checked my reflexes(which I don't have at all except for in my upper arms) and some other funny tests to check the muscles. She left and then both her and the doctor came in had me do a few more funny things and then they left. After a few more minutes the doctor came in to explain the results and direction he is taking my case. He said that he was able to pull gene samples from my muscle to help him narrow down some possibilities. They spent some more time examining me on a video camera. They are going to do some genetic testing on the top three myopathies that matched the genes taken from the muscles and we will go back in June. They also want us to get a referral for Noah to come see them. They believe that whatever I have I have passed down to him just like my father passed on to me. This could explain all that he has endured in the last few months. His cardiologist agrees and is in contact with my Neurologist. With most of the Myopathy's they are looking at the biggest threat is the effect it has on the heart. I realize now how much the Lord has preserved my life and what a blessing it is to be alive. So thankful for my pacer and for catching it when we did. I know he has Noah in the palm of his hand and will protect his little heart. We are hopeful for more answers and will lean on the lord as we wait on him. Please keep our family in your prayers.