Overcoming hydrocephalus

HAVE YOU EVER WANTED TO MEET A SHUNT “COMPANY” REPRESETNATIVE/SPECIALIST? HERE ARE SOME HIGHLIGHTS FROM OUR MEETING: The meeting yesterday with the shunt/medical device representative could not have gone better.   The representative or “Nuero specialist” provided me with some great insight.   Additionally he offered to help in any reasonable way possible.   Some key points from the meeting included:   What we call shunt failures are typically the proximal catheter (Catheter from the shunt to the ventricle) acquiring a buildup of protein and blocking CSF (Spinal fluid) flow from the ventricle to the shunt.   This particular representative expressed how from his perspective it’s viewed as a condition or by-product of hydrocephalus, not necessarily a “failure of the product”.   But stated that we need to have innovation that would prevent the buildup   and stop the blockage.   This representative named Frank showed serious passion for in...

I am posting a text conversation that my wife and I exchanged last week between one another (with her permission and some edits).  ITs an example of what it can be like having a child with a condition where advances (significant) are lacking and desperatelly needed.  The text may also let other hydrocephlaus parent know they aren't alone.   The scenario is this:  Im at work and Hawke has been having good days, doing well: Carm: Hawke slept Carm: an hour & a half & got up for a lil while but is layin & cuddlin w me like he's goin back to sleep! Carm: He has a headache :( Jason: He said his head hurt? Jason: Dnt like that Jason: Concerns me a little Carm: No. Keeps closin or covering eyes & covered his ears when loud noise. Layed himself down flat & yawning Jason: Ok, tnks Carm: What should I do? Carm: He's just layin on me quiet & motionless Jason: Should u do? Jason: Monitor? Jason: Is he sleeping? Carm: Eyes open but arm acrss ...