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.
Brent started off his day today not feeling good. He has been very quite. As the day went on, his Aide came today also and he cheered up some. We have a new Aide and she is doing a wonderful job with him. She is a very sweet lady and has fit in with our family great. We were happy to get a few hours in to do whatever we wanted while… 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.
It has been an “OK” day. Brently had surgery 2 weeks ago this past Monday. He had to have a G-tube – (feeding tube) revision because of infection that spread throughout his abdomen due to some complications in changing out the tube. He is home bound for 5 more weeks due to more infection and I can’t risk him getting any worse.