SURVIVING TWO THRIVING...with L1cam Syndrome

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  The song “I’ll Run with you” is one of my favorites that is sung by Broken Vessels.  When I first heard it, I knew I wanted to make a video of some of my favorite pics of the boys. 

Life has a way of lifting you up in the most exciting times and tear you down in some of the most horrific times.   Some say it’s whatever road you choose to follow.  Whether good or bad, YOU choose!  I think that God somehow, someway saw fit that He chose me for this specific unique life with my boys.

  We all want to be accepted for who we are in this life.  Right? As a special needs mom, I want this for my son. ACCEPTANCE. I have never seen him so excited than this very day (other than at church) Ha Ha! Some of Brent’s classmates, his teacher and coach, all came over to our home, as well as the local newspaper, and presented him with a team jersey. Go… Read More

What is (CVI) Cortical Vision Impairment?  It is what my child has been diagnosed with. The medical term from childrenshospital.org is: Cortical Visual Impairment (CVI) is the most common cause of permanent visual impairment in children (1-3). The diagnosis of CVI is indicated for children showing abnormal visual responses that cannot be attributed to the eyes themselves. Brain dysfunction must explain the abnormal visual responses, as abnormal ocular structures, abnormal eye movements, and… Read More

Budd–Chiari syndrome is a very rare condition. It is an uncommon condition induced by thrombotic or nonthrombotic obstruction of the hepatic venous outflow and is characterized by hepatomegaly, ascites, and abdominal pain. It is caused by blood clots that completely or partially block blood flow from the liver. It usually occurs when a clot narrows or blocks the hepatic veins, which carry blood out of the liver.

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