Overcoming hydrocephalus

In the past 30 days Hawke was determined to be at the 2% of his weight for his age. Not good, blood work scheduled to look for hormone levels and to check for any abnormalities in his blood. He had surgery to remove his tonsils, adenoids and new tubes in his ears (making the total number of surgeries endured 15). Many of us prayed his appetite would increase as a result, and our prayers have been answered!! He has gained 3lbs in the past few weeks, this is great news! CP updates: PT to start back up soon, but lately he has been standing more often (while holding on to something). He has been walking with more confidence when only holding to an object with one hand :-) More great news! Weather changes seem to bring emotions due to a sensitivity to the barometric atmospheric pressure? and his hydrocephalus. This week he has been handling it pretty well. **UPDATE - Temperature outside is high 40s and increased humidity.  Freezing at nihgt.  Making for a very cra...

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 ...

This Saturday! We have nearly tripled our gaol for participants to 25!  Crazzie!  Everyone whom is participating THANK YOU SO MUCH!!  Its exciting and encouraging! TEAM PICS STARTING AT 8:30 AM  (Early) http://walk4hydro.kintera.org/faf/help/helpEventInfo.asp?ievent=450046&lis=0&kntae450046=5D50473FAC534D37AAB25011012CFDFC Date: July 2, 2011 Location: Wayne County Parks Hines Park-Nankin Mills Recreation Area Address: 33175 Ann Arbor Trail Westland, MI 48185 (Hines Drive, East of Ann Arbor Trail) ----------------------------------------------------------------------------------------------------- Our next event; fundraising for PHF.  An organization made up of ALL volunteers and specific to Pediatrics.  This organization broke a barrier Hydrocephalus association has yet to brake (congress).  A day dedicated Hydrocephalus in DC; a day for congress to hear testimonies from our family and others!  PHF is giving Carmen and I t...

Hawke has had some rough days recentlly; We are in prayer weather we need to head to nuerosurgery today . . .praying for discernment and th anking all of you for your prayers and love! Seems like his overdrainage won't stop, based upon the symptoms we are seeing and this past month.  Based on some nuersurgery articles we are reading finding a shunt that works may be like a crap-shot? "The major contributor to recurrent malfunction is the development of very small or slit-like ventricles and chronic shunt overdrainage. Although overdrainage seems to occur in most patients shunted in childhood, it is the development of craniocerebral disproportion that is the primary underlying pathophysiology." http://book2.neurosurgeon.org/?defaultarticle=&defaultnode=2648&layout=22&pagefunction=Load+Layout " None of the particular valve designs that have been used clinically has eliminated the phenomenon of chronic overdrainage. Some designs seem to allow overdrain...