Today begins National Hydrocephalus Awareness month.  Our family has been aware of hydrocephalus for the last 7 1/2 years.

The funny thing is that hydrocephalus is honestly not the most immediate of Lizzie’s issues these last few years.  In the beginning of Lizzie’s life, hydro was everything.  We watched and we measured month by month to see how big Lizzie’s ventricles were, and how much more “water” was in her scans, and how much less brain matter.  Hydrocephalus was the big question, and the end all be all of her health issues.  When she had her shunt infection in October of 2004, it was the sickest I’d ever seen at that point in time.  I remember she was gray, limp, and non-responsive.  Our pediatrician took one look at her and said, “Go to the ER.”

But since we’ve had her second shunt put in, things with her hydro have been in control.  Don’t get me wrong, I still think of her hydrocephalus as a serious concern, but it is not something that is first on our minds.

Now-a-days, her epilepsy is far more prevalent in our daily lives.  Seizures are the biggest danger we face.  Just one of those can send us to the ER in a heartbeat, and can cause her to have to stay in the hospital.  Besides the epilepsy, there is the recurring infection in her g-tube, which is not just a nuisance (because it refuses to be resolved), but it is also a concern because obviously it is an infection and infections for special needs kids can be dangerous.  Then there is Lizzie’s cerebral palsy, which is the main cause of her mobility issues, and also the muscle weakness that causes her swallowing and speech delays.

So, hydrocephalus is always in the back of our minds, but not the first thing that comes to mind when I think of Lizzie’s health.  And yet, hydrocephalus is the mother of all of Lizzie’s health problems.  With the exception of her bicuspid aortic valve, the hydrocephalus caused all of Lizzie’s other problems.  Lizzie’s hydrocephalus damaged her brain from the pressure built-up before birth.  That damage led to her epilepsy, caused her cerebral palsy (which caused her scoliosis and hip displasia), her speech and feeding problems and her cortical vision impairment.

Even though the hydrocephalus is not our biggest direct cause of Lizzie’s issues it is the indirect cause of all of the conditions that are.  Hydrocephalus affects 1 in 500 births, and is not something that most people are familiar with.  It is something that is silent, and not well publicized, but can really effect the people who have it.  So, my Facebook profile pic will be wearing a blue ribbon for hydrocephalus this month, and I will be too, because hydrocephalus is a real condition with real effects on people’s lives, and people need to be aware of it.

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