SURVIVING TWO THRIVING...with L1cam Syndrome

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As this years 2014 Thanksgiving rolls around, my mind drifts throughout each day of how thankful I am. There are so many things that have come my way and so many people in and out of my life that have meant so much to me and that I am thankful for.

I never thought I would see the day of being able to meet other families that walk in my shoes daily.  For so long I begged and pleaded with God to help me find someone…surely I can’t be the only one in the world?

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

Tonight, I sit here thinking of all the what if’s, what could have been’s, and I don’t know why I allow my mind to go in that direction. Brent is 15 years old. He should have a permit and learning how to drive. He should have friend’s over spending the night, coming and going and having a busy schedule of some kind.

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