Overcoming hydrocephalus

Dan,                 Good morning.  My name is Jason Adams, Father of Patient Hawke Adams.  I have some troublesome concerns regarding the obstacle we are encountering in order to receive a wheelchair for my son and how xxxxxxx could improve patient quality of life.  I appreciate the time you have taken to read my e-mail.                 In the past three weeks I have made ten (10) phone calls to Xxxxxxxx and additional phone calls to my son's Physical Therapist.  I have spent at least three hours on the phone.  My wife has made countless calls beginning in late October  (when we initiated our wheelchair request with Xxxxxxxx) through February 2014.  In the past five months my son has grown and is more and more difficult to take him out of the home without a wheelchair.  As of yesterday (2/24/14) Xxx...

Good Luck to PHF VP/Director of Advocacy Mike Illions as he heads to Capitol Hill in Washington, DC today. REAL ACTION & REAL CHANGE. We don't just talk about it at the PHF, WE DO IT!

Toddler And Dog With Same Brain Condition ( Hydricephalus) Find A Friend In Each Other http://m.huffpost.com/us/entry/4822726?utm_hp_ref=email_share

Some pictures from the nuerosurgery check up today

Images look great (unchanged) !! Coming home with a follow up to urology in the near future.  Praise God for the good report and feedback.... All of your prayers :-) I sought The Lord and He answered me and delivered me from all my fears. Psalms 34:4.

As I'm dressing Hawke this morning he says"Where are we going Dad"?  (Pause) "We're going to get pictures of your head".  Hawke "Are we coming home after"? "We are planning to come home after".  God is Good, expecting no surprises always ready for the curve ball.

Hawke has a "check-up" with neurosurgeon this Thursday, praying for accuracy and no surprises.  Really dislike the necessity for these check ups.  They complete an MRI and one of our many concerns we lift to the Lord is the shunt not resetting properly. Also a review of the area that had swelled.  Thanks Facebook family :-)

Our kids and patients have it hardest, but "NICU parents suffer PTSD symptoms". This applies to hydrocephalus parents as well. http://m.today.com/moms/hidden-human-cost-distressed-babies-nicu-parents-suffer-ptsd-symptoms-2D12114627

UPDATE:  Hawke's swelling has decreased to nearly disappeared!  When God answers our prayers and when we don't see the answer He is still Awesome! Thank you for the prayers and thank you Lord for the progress :-)

Donating books to Detroit Children's Hospital Nuerosurgery from Michigan Pediatric Hydrocephalus Foundation!  They had zero children's books until today!

Top Five Facts: •  Hydrocephalus is a lifelong condition, affecting over one million Americans from newborn to seniors •  An average of 40,000 shunt operations are performed each year in this country •  Americans spend in excess of $1 BILLION to treat this condition •  Hydrocephalus is believed to occur in about 1 per 500 births •  Lack of advancements in treatment have left many people with hydrocephalus unable to lead full and productive lives

Thank you for standing up for the disabled and being suspended for it....... "Student at Rudder High School in Texas, was suspended from school after he stood up for a special needs student" http://www.theblaze.com/stories/2014/02/13/teenager-gets-suspended-from-school-for-doing-something-awesome-and-hes-not-even-upset/

This is heartbreaking:   "Family in England is devastated after the country's publicly funded heath care system denied their 6-year-old a life-changing surgery to help her walk". http://www.theblaze.com/stories/2014/02/12/surgery-to-help-kids-with-cerebral-palsy-walk-canceled-due-to-socialized-health-care-system-bureaucracy

Olympian dedicates win to his brother with Cerebral Palsy! http://www.usatoday.com/story/sports/olympics/sochi/2014/02/10/canadians-gold-silver-medals-moguls/5368635/?csp=fbfanpage

Emailed a famous person today in hopes to help raise hydrocephalus awareness.  #NeverGiveUp #KeepDreaming #PHF

Who wants to come out to the ball game and cheer the Tigers to victory this spring?  While raising funds for a cure!?  Game date to be announced in two weeks!

Hawke prayer request: We noticed swelling in his groin area last night.  Spoke to Nuerosurgery about it.  Likely one of two scenarios.  Hernia and the spinal fluid from shunt fluid may be running through the tear and into his groin area.  It could also be the shunt tract migrated.  Praying for a healing!!  Would be surgery 16 if no healing  :-/

Great awareness video featuring Hawke http://www.youtube.com/watch?v=SAt5deRyhtg&sns=em