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Placing a feeding tube is a relatively simple surgery, but it is only recommended for complex conditions. Tube feeding is a way to provide nutrition to people who cannot or will not eat and/or drink enough to keep their body healthy. Tube feeding is sometimes used on a short-term basis until a patient’s condition improves. Other times, it is a permanent method of feeding and is impossible to stop without resulting in… Read More
Hereditary spastic paraplegia is a general term for an expanding group of rare genetic disorders characterized by slowly progressive weakness (paraplegia) and increased muscle tone and stiffness (spasticity) of leg muscles. Other symptoms can occur in the pure subtypes including bladder dysfunction or abnormal sensations in the lower legs or feet. HSP is classified as “complex” or “complicated” if additional symptoms are present such as an inability to coordinate voluntary movements (ataxia),… 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.
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
SURVIVING TWO THRIVING...with L1cam Syndrome 