Overcoming hydrocephalus

Just got off a conference call with PHF (Pediatric Hydrocephalus For kids). We discussed the hydrocephalus day in congress and how its being coordinated and its purpose. This is so exciting and I can't emphasize how important this is for the hydrocephalus community globally. Its possible this could result in a minor increase of federal grant/funding for research and development, nearing a cure potentially. So excited! Sent on the Sprint® Now Network from my BlackBerry®

Sent on the Sprint® Now Network from my BlackBerry®

Sent on the Sprint® Now Network from my BlackBerry®

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 the opportunity to testify about our Hyd

One month post op; I thought we were never gonna get to post-op. Praise God! Sent on the Sprint® Now Network from my BlackBerry®

FACT -- The Hydrocephalus Association is the largest single voluntary health organization funder of hydrocephalus research in the U.S. Donate online in Hawkes name: http://walk4hydro.kintera.org/faf/donorReg/donorPledge.asp?ievent=450046&lis=1&kntae450046=4063EA423A74440FA41607F0FE520410&supId=0&team=4021402&nmv=true Sent on the Sprint® Now Network from my BlackBerry®

Thank you Lord for Hawkes gradual improvement since his most recent surgery. . .his personality is such a blessing! These beautiful kids are so much fun. Sent on the Sprint® Now Network from my BlackBerry®

Hydrocephalus. Could you pronounce or spell it your first time? Half the peep I know can't pronounce it. A easy name for society would increase awareness. . . any ideas? "water on the brain" don't cut it either. Sent on the Sprint® Now Network from my BlackBerry®

Received a call from occupational therapy this morning. Hawke has a new diagnosis: "Failure to thrive" Time to research, pray (wo ceasing), overcome and let Hawke be Hawke and not his diagnosis. its bothersome but I'm not surprised since his weight gain has been near non-exist ant. Sent on the Sprint® Now Network from my BlackBerry®

In the last two weeks we have received many donations in Hawke's name for the hydrocephalus association. Thank you so much everyone - I owe some big thank yous!! Praise God for your generosity!! We r still short our goal; if you can pls donate by following this link: http://walk4hydro.kintera.org/detroit2011/hawke Sent on the Sprint® Now Network from my BlackBerry®

Every 15 minutes a shunt surgery takes place to help someone with hydrocephalus. Hydrocephalus is the most common reason for brain surgery among children, anyone can get hydrocephalus at any age, and there is no known cure. Donate in Hawkes name: http://walk4hydro.kintera.org/faf/donorReg/donorPledge.asp?ievent=450046&lis=1&kntae450046=A1D6CFFAA00942848EA38BC3C2CD680C&supId=0&team=4021402&nmv=true Sent on the Sprint® Now Network from my BlackBerry®

Hawke is doing better since last post.  Still irritable at night but seeing some improvements (Praise God). Hawke has NOT gained weight for a year; He is going to undergo some upper GI test this month and an additional Occupations Therapy evaluation.  Thanks for the prayers!!  Walk on July 2nd!  Praying and rasising for a cure!  Follow the link to donate in Hawke's name! www.walk4hydro.kintera.org/detroit2011/hawke

Hawke has a low-grade fever as of tonight and started some screaming and crying. Canyon, his younger brother just recovered from a 4? Day fever diagnosed as a virus. So does Hawke have the virus or a shunt infection? A shunt infection can show up a $onth to three months post surgery. We are praying its a virus. Although he has been having some fits he has been acting well in many areas. . .personality is showing up more and more, walking increasing and some appetite increases. Praying and holding our breath, God Bless! Follow this link to donate for a cure and r and d in Hawke's name. . Click tab that says donate. http://walk4hydro.kintera.org/detroit2011/hawke Sent on the Sprint® Now Network from my BlackBerry®

Hawke is 3 years old and has a condition called Hydrocephalus. Hydrocephalus has required him to have had 6 brain surgeries within a 45 day span of this year (2011).   There is no cure as of today.   He has had 8 total surgeries and is statistically   guaranteed to require multiple brain surgeries throughout his life.   Senator Gifford recently acquired Hydrocephalus after a gun-shot wound to her head.   There are thousands of children and adults with this condition.   Hawke has a life saving device implanted into his head called a shunt; ½ of all shunts will fail within two years or less.   The research, development and awareness of this condition is lacking and is in desperate need of funding.   The technology exists to create shunts that can last a lifetime, but the money to integrate the technology into shunts is lacking.   Without funding, children and adults will continue to fight death and undergo many brain surgeries throughout their lives.   Some patients have undergone hund

Hawke continues to do well; we may always be skeptics of his behavior always concerned with his shunt functionality and ICP (inter cranial pressure).  Looking forward to when he can communicate.  His stitches were removed two days ago, it went well as expected.  We did ask about his eyes and some excessive crabbiness.  His eyes occasionally were still dilating unequally.  Neurosurgeon said to monitor and as long as he continues to improve it may very well be part of his recovery process which could take up to 4 weeks.  He is walking more, talking more, speaking clearer.  Walk is coming up, less than 30 days and not much raised yet.  Please consider donating!  Money is desperately needed to move forward towards a cure, better treatment. http://walk4hydro.kintera.org/faf/donorReg/donorPledge.asp?ievent=450046&lis=1&kntae450046=919DF28451004601A1150CFEF5C59874&supId=0&team=4021402&cj

UWI study finds Nintendo games effective in treating cerebral palsy http://m.jamaicaobserver.com/mobile/news/-Wii--care_8980080 Sent on the Sprint® Now Network from my BlackBerry®

Hawke is doing well on his road to recovery. Of course as parents we are still skeptical of every whine and complaint (still evaluating the shunt and its impact on Hawke's ICP (inter-cranial pressure). We just had a meeting with several therapists and specialists evaluating his progress and what goals were accomplished that were set last year. He accomplished so much! We have high expectations as long as this shunt is correct as his behavior seems to tell us his icp is good. Please consider donating in Hawke's name to increase research and development and to find a cure. The technology exists in manufacturing engineering but the funding is lacking. http://walk4hydro.kintera.org/faf/donorReg/donorPledge.asp?ievent=450046&lis=1&kntae450046=919DF28451004601A1150CFEF5C59874&supId=0&team=4021402&cj Sent on the Sprint® Now Network from my BlackBerry®

Follow this link to donate via credit card to the non-profit organizaiton called hydrocephalus association.  You will be donating in Hawke's name when you follow this link. http://walk4hydro.kintera.org/faf/donorReg/donorPledge.asp?ievent=450046&lis=1&kntae450046=919DF28451004601A1150CFEF5C59874&supId=0&team=4021402&cj = More event information: Walk starts at 8:30; let me know if you are gong to walk and I will register you on Hawkes team (free registrations) 33175 Ann Arbor Trail Westland, MI 48185 (Hines Drive, East of Ann Arbor Trail) Link to website with event info http://walk4hydro.kintera. org/faf/help/helpEventInfo .asp?ievent=450046&lis=1&k ntae450046=5791A5F74AFA4C4 1BA2305253F331744

5 Brain surgeries in 45 days. Why? Major reason is lack of funding. Please follow this link and donate to help find a cure in Hawkes name, even 10 bucks?: http://walk4hydro.kintera.org/detroit2011/hawke Sent on the Sprint® Now Network from my BlackBerry®