Overcoming hydrocephalus

How's Hawke? I'm apprehensive it seems like things change when I update; I'm not driven by fear when I kno the Fathers plan ;-) Hawke has been doing well! His appetite has increased slightly which is Huge. His ventricles were big on CT a few weeks ago but his behavior has been good, Praise God. Thankful for everyday outside the hospital. Sent on the Sprint® Now Network from my BlackBerry®

Hydrocephalus kills. Please read and pray. This family lives on west side of state: "This is the hardest decision we have ever had to make. The test came back not good. He basically has no brain function at all. We have made the decision to take him off the vent. It wouldn't be fair to him if we kept him like this. No parent should have to go through this. I just pray for Gods strength as we take this step. There are lots of people waiting for Colton with open arms. Including his brother or sister, grandpa, uncles, cousin, and many more....Thank you all for all the prayers. I wish I could meet everyone in person but since that is not possible. Could you take a minute to copy and repost this so everyone will know how grateful we are for you thoughts and prayers." Here is the bkgrnd info from my PHF counterpart: He is a year old, born with hydro and 2 holes in his heart. He had open heart surgery last year at U of M and his heart has been getting stronger with every day.

Cleveland clinic advised we keep seeking care in Michigan due to the possibility of emergencies. She recommended UofM. We are coordinating a consultation asap. Hawke is up and down, latelly sitting around most of the day. That is not "normal" behavior for him or as we say when speaking with Drs he is not at his behavioral baseline. Our concern is elevated this pst week so we will keep observing our Hawke. He's been acting great outside today which is a good change. We think his shunt may need an adjustment back the other way as his ventricals are larger vs smaller (good sign of no overdrainage). 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®

Hydrocephalus – Symptoms, Picture, Causes, and Treatment http://www.healthresource4u.com/hydrocephalus-symptoms-picture-causes-and-treatment.html Sent on the Sprint® Now Network from my BlackBerry®

Hawke's Cleveland Clinic appt this past week was one with mixed opinions and tough decisions. For the first time in months the CT scan showed Hawke's ventricles to be larger (almost concerning). Yet Hawke is not at his "baseline" behavior. Are we ready for 4 hour trips to a hospital and the hardship for better care? Its looking that way, the nuerosurgeon knows the u of m nueros and in emergencies we can go to U of M as she will share records and advise. Sent on the Sprint® Now Network from my BlackBerry®

Naomi Marston examines the impact on learning of these often misunderstood conditions What are spina bifida and hydrocephalus? http://www.senmagazine.co.uk/index.php?option=com_content&task=view&id=419&Itemid=60 Sent on the Sprint® Now Network from my BlackBerry®

Hawke is my son whom is 3 years old.  He has had 9 brain surgeries this year alone and is not along.  Most of you have probably never heard of hydrocephalus; its the #1 reason for pediatric neurosurgery.  Sometimes caused by a hemorrhage, developed gestation ally and sometimes from head trauma.  There is NO cure and as a nuerosurgeon stated at the meeting last month in Washington "we are using the same technology from 50 years ago".  Left untreated will lead to brain damage and death. The non-profit funding a cure: http://www.hydrocephaluskids.org/ http://www.hydrocephaluskids.org/wordpress/?page_id=2 Hydrocephaluskids.org is a non-profit, with an all volunteer staff (including myself).  Whats unique about this organization (Pediatric hydrocephalus foundation - PHF) is all the money raised in Michigan stays in Michigan to help local children, local research or national research if a project is worthy of funding.  There are other "non-profits" that hav

Hawke is going to Cleveland on Thursday for a follow-up and I'm going to Detroit for additional records today. Hawke has not been progressing and has been slowly declining. Although he has had some good moments, He's laying flat more often (suspect overdrainage). Sent on the Sprint® Now Network from my BlackBerry®

Thank you Lord for a great weekend with the family! Food in the fridge, all my kiddos home and no hospital visits. . . Almost feel "normal" but the hydroC always reminding us its still here. Not living in fear cause of hope in Jesus. Thankful for Grace and priceless family time. Sent on the Sprint® Now Network from my BlackBerry®