Sam

On Thursday Sam had her appointment with the specialist at Seattle Children's Hospital. It looks as though she does have some form of mitochondrial disorder. This is not great news. But, her dr. says that because she has gained some ground, her outcome is better than most of the kids he treats. I don't really know a lot at this point, but will try to fill you in... Your mitochondria are the powerhouses of your body. They have (apparently) their own DNA and there are around 200 diseases that can be caused by faulty DNA. We don't know what specific disorder Sam has, just that she falls into this category. It is reassuring on one hand, to have a dr. agree that there is something there, but all of a sudden, it real. I have an ache in my heart when I look at Sam, that wasn't there before. A sadness at what we could lose. Mitochondrial disorders are usually progressive and that's a scary thought. When I looked it up online at http://umdf.org (this is the website that her dr. gave us and he says is accurate. But super confusing...) a lot of the signs and symptoms just fit what Sam has going on. She is still really mild and seems normal, no seizures or anything, but the list just fits. Not much has really changed in the last week, just our perceptions. They did some genetic testing to rule out Spinal Muscular Atrophy and a couple of other things. He doesn't think she has this, but would like to be 100% sure. The next step is a muscle biopsy and he thinks we have a good chance of getting a specific diagnosis with that. I don't want this to be a sad post, Sam is doing great and we feel so blessed to have her. She has had some wonderful blessings and we have faith that the Lord is watching over her and our family. Never have we felt so surrounded by His love. It's like our Heavenly Father's arms are wrapped around our family. To any who doubt our Savior's love, I say to you, "He lives. He knows us. He loves us. He is involved in every aspect of our lives. He has felt our pain and knows our sorrow. He can also give us joy and peace." Which is what we feel, even with the pain and questions. Life is good and our family is well. We love you all and want to keep you updated. I'll let you know when we hear about the genetic testing...

Sorry this is long, and a little heavy...