SURVIVING TWO THRIVING...with L1cam Syndrome

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Today has been a stress free day, Imagine that! I have done absolutely nothing. HaHa! I have so much on my To-Do List but I took advantage of this beautiful day and decided to just sit back and laugh, play, sing, and lay around and enjoy Brently and my husband.

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.

Today has been another day of clinging on to hope and having faith that God will help us through this storm we are in.  I had to take Brent to the Doctor today.  He had a blockage and I just knew we would end up in the hospital. They were able to do the procedure in the office and gave instructions on what to do when they sent us home.  I was… Read More

I will probably never understand Seizures. Every time Brandon had one, It would throw him back into learning what he had just learned. It broke my heart to see him in such distress when I couldn’t do anything about it.  He would be unconscious for days.

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