SURVIVING TWO THRIVING...with L1cam Syndrome

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Today has been another “ok” day.  Brent is so ready to get back in the swing of things with going to school and doing his routine.  He loves a schedule and if it gets off track, he does not like it. He is thriving and I am so happy for him that he is still fighting his disability He is one tough teenager!

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 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.

It has been 20 years since I have been out of school and nothing has changed about Special Needs… I will probably make some people upset but ya know, it does hurt to know that special needs children are left out of everything. The only thing they get to look forward to is Special Olympics that happens once a year.  There should be more structure and involvement within the school system and… Read More

I ask myself these questions from time to time now.  How does one celebrate for one child and still continue to mourn the loss of another child?  Can I be still be happy for the one I still have here with me?  Will this sadness linger on forever?

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