SURVIVING TWO THRIVING...with L1cam Syndrome

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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.

Today has been another “ok” day.  Brent is so ready to get back in the swing of things with going to school and doing his routine.  He loves a schedule and if it gets off track, he does not like it. He is thriving and I am so happy for him that he is still fighting his disability He is one tough teenager!

I am numb.  I don’t have any words of wisdom or encouragement for myself or to give anyone this very minute. My brain is trying to stay positive but in my heart I know that another battle is about to begin.  I know God will be with me through this. There is no doubt about that. I am just scared.  We received some bad news and I am having a hard time… Read More

X-linked hydrocephalus (L1 syndrome) **September is Hydrocephalus Awareness month** The Hydrocephalus Association describes X-Linked Hydrocephalus and Finding our way with L1cam!  Check it out!! Hydrocephalus comes from the Greek words hydro meaning water and cephalus meaning head. Hydrocephalus is an abnormal accumulation of cerebrospinal fluid (CSF) within cavities in the brain called ventricles. Cerebrospinal fluid is produced in the ventricles and in the choroid plexus. It circulates through the ventricular system in the brain and is… Read More

It has been a full day at the Emergency Room at the Children’s Hospital.  I do not understand why things happen the way that they do but there is a reason of some sort for it.  I am looking for answers.  I want to know why my child is hurting and no one can fix this problem.

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