Overcoming hydrocephalus

The children love helping unload and move the groceries to the kitchen.  Hawke determined to help pulls and drags the bags from the front door.  He doesn't even think twice about it, having fun like his siblings.  He IS going to walk this year prayerfully!

Washington is over 3 months away! Right around the corner to advocate for hydrocephalus Advocacy.......to help Hawke and all the people fighting this condition. Advancement is sparse, no cure and current treatment options are less than promising. Keep this trip and cause in prayer! In the meantime children and people will suffer when the weather changes due to Hydrocephalus, endure many brain surgeries sometimes one after another, suffer brain damage, terrible quality-of-life for many just to name a few. www.hydrocephaluskids.org Jason@hydrocephaluskids.org

Hawke has officially spent more birthdays out of the hospital (3) than in the hospital (2). Praising God!

Hawke turned 5 years old today!  No status update could fully describe how grateful we are.  He has defeated odds against odds.  Born dead and given breath and a heart rate by God after 11 minutes.  11 brain surgeries and this boy continues to smile ear to ear and make progress.  Thank you Lord for your intervention and an amazing mother (wifey)!

From flip-flops one day to having to use the fireplace the next day.   I actually love Michigan weather and it's Unpredictability! I do have a problem with the implications for a child or adults with hydrocephalus though.  Prayers for all of you and us parents.

It's good to reflect on what we have endured and overcome.  Thankful for what a great God we serve and my wife's great memory, as she reminded me what happened four years ago today:  "Hawke had his 1st shunt revision (brain surgery). His shunt had been placed 3mos earlier but he'd been gagging a lot, having trouble swallowing, eating & had vomited 3x's in four days. His neurosurgeon said his images hadn't changed. His ventricle catheter had been disconnected from his shunt. He ended up staying in the hospital through his 1st birthday :( " So  grateful. We need a cure, we need breakthrough. 

www.sevenly.org is selling shirts to fund brain surgery for children in Uganda who need hydrocephalus treated or face death. Thankful that we have the ability to treat hydrocephalus where we live, saddened babies suffer needlessly due to lack of money and health care system. www.sevenly.org

Posted the video of me asking the FDA representative a question: http://youtu.be/4hw_MRMehKQ Prior to advocating for hydrocephalus on the Hill we attended a conference. The FDA representative had some great information and was also asking us to advocate for increased funding to the FDA.  This was my question to the FDA.