SURVIVING TWO THRIVING...with L1cam Syndrome

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I ask myself these questions from time to time now.  How does one celebrate for one child and still continue to mourn the loss of another child?  Can I be still be happy for the one I still have here with me?  Will this sadness linger on forever?

This guy right here made me the mom I am today.  With multiple brain surgeries, feeding tubes, feeding pumps, hip surgery, multiple tendon releases in each leg and foot, (VNS) Vagus Nerve surgery, 2 spinal infusions, surgery on each thumb (inward thumb/visibility of L1 syndrome), Budd-Chiari Syndrome, and numerous seizures that more than 50% of them were life threatening. He was on life support during those times.  I can truly say that this child… Read More

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