Some of you may have seen this post from my wife, Storm M.! We try not to share a lot of our family business, but there are days when you need community around you to help "carry" the burden a little further! We told our families and higher-up's yesterday. Thanks for reading!
New update on Xander. We went to the neurologist yesterday and, while we did get a suspected diagnosis (further testing to confirm), that news was devastating. The neurologist suspects that he has Charcot-Marie-Tooth Disorder (CMT). It is a form of Muscular Dystrophy that affects the nerves and causes loss of sensation in the limbs and subsequently causing the hands and feet to draw up unnaturally because of loss of muscle tone. Because his symptoms started almost immediately after birth, with signs of a neurological disorder before birth, they suspect that he has the more severe form of the disorder. It does not affect life span but it does affect quality of life quite a bit depending on how severely the limbs draw up. He will have an MRI done very soon and genetic testing to confirm the diagnosis. He will see a physical therapist next week to determine the best treatment for his feet. He will likely be in braces and orthotics for the rest of his life and may need surgery because his are already drawn up pretty badly. It just seems that my precious boy can’t catch a break. He has Autism, Generalized Anxiety Disorder, ADHD and now this. I really thought that whatever his diagnosis was would lead us to the cause of his Autism but instead we received something completely new and unrelated. Please pray for us as we navigate even more specialists, treatments and emotions that come with processing this new diagnosis.
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