Overcoming hydrocephalus

Today is Hawke's 3rd shuntiversary!  He had 8 shunt surgeries in the summer of 2011.  Half of all shunts fail within two years; failure equals brain surgery.  Grateful to God for every second of every day! Thankful for all the support from all of you! 

I have taken the PHF's Pie Hits Face Duel Challenge and made a donation to www.active.com/donate/phfdonate for Hydrocephalus Research!! The gauntlet has been thrown down and challenges have been made to.... Mikayla Pekala, Tracy Adams Varner Josh Amber Atwood You have 24 HOURS to accept/take the challenge or donate $25 to the PHF for Hydrocephalus Research @ www.active.com/donate/phfdonate And don't forget to post your video and make your 3 challenges to friends and family!!! PHF's Jason Adams and family takes the Pie Hits Face Dual Challenge! http://youtu.be/VAEqjO284Ps

A successful meeting with Senator Levin this morning.  He committed to read and consider adding report language to the Agencies appropriation bill, Review the "Hydrocephalus in America Research & Treatment plan" bill and possibly sponsor the American Cures" Bill. #PHF #RDLA

** Great article in the Wall Street Journal featuring PHF Board of Director Mary Ann D'Oria and her Hydro Hero All-Star daughter Adrienne, (who is an admin of the PHF's Teen Page on Facebook), about transitioning from child to adult for medical care and all the problems that go with it.  This is something that will be discussed next Friday with our elected officials during our National Hydrocephalus Awareness Day on Capitol Hill.... http://online.wsj.com/articles/the-challenges-after-surviving-a-childhood-disease-1407797952

Researching under pressure /Speed researching... Sometimes I learn best in these scenarios.  Hello prayer, books and medscape.  Weighing the pros and cons of Botox again.

Physiatrist appointment today for Hawke.  Prayers for accuracy and discernment. Expecting a push for Botox from doctor, no plans on taking the Botox route.  You should see this boys reaction when he overhears words about doctors, the stress jumps on him.  Praying this stress would not get the best of him in Jesus name.

Just confirmed my appointment with Senator Levin to advocate for the hydrocephalus community!  Coordinating a meeting with Representative Miller next.   #PHF 

This write up captures it all about hydrocephalus. . .one of our biggest concerns is the potential for loss of mental capacity. #PHF #WeNeedACure #Encouraging http://cumberlink.com/news/local/communities/harrisburg/brain-surgeries-can-t-stop-matt-kocsis/article_81478d48-1aa2-11e4-8e68-001a4bcf887a.html

Hydrocephalus.  The days that pass which your child (or self) show little to no symptoms are great; but hydrocephalus is always lurking in the background.  At any given moment without warning an E.R. Trip resulting in brain surgery may be necessary.  Grateful for each day, choosing to fight for the cause!! Advocating in D.C. This month!