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** Hydrocephalus is referred to as water on the brain.  The water is called cerebrospinal fluid (CSF), a clear liquid that is produced in the 4 ventricles (cavities) of the brain. My boys were diagnosed with Hydrocephalus at birth. Congenital hydrocephalus accounts for approximately 50% of all forms of hydrocephalus.

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.

So Greatly Loved

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Hope For The Broken Hearted

Blog by Debbie Kay, Founder of Hope For The Broken Hearted Ministries