SURVIVING TWO THRIVING...with L1cam Syndrome

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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

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.

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.

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