Overcoming hydrocephalus

Its been a hard year. . . In the last few days Hawke hasn't improved and a surgery or adjustment seem near imminent. We keep praying and hoping in Jesus as anything is possible in Christ! Here is a text from my wife that brings joy ;-). "The boyz were super cute tonight!!! Hawke got into the smaller suitcase & Canyon was shutting the lid on him & Hawke was laughing. It was so nice to hear him laugh!!!" Sent on the Sprint® Now Network from my BlackBerry®

He is doing well enough to stay out of the hospital. Trust me, I pray I can answer your question better as in he is doing great but its not the case. Cleveland is the clinic we are committed to despite the hardship it may create. . . What's more important than the quality of his care. Tommorrow picking up CT scans from july and august for the Cleveland clinic, going to give it to them whenever our next trip is required. So we are walking by faith and observing and seeking Wisdom from God. Thanks Donna! Sent on the Sprint® Now Network from my BlackBerry®

http://www.hydrocephaluskids.org/wordpress/?p=718 Sent on the Sprint® Now Network from my BlackBerry®

Sent on the Sprint® Now Network from my BlackBerry®

So we leave DC early due to Hawke not feeling well and yesterday he acts as though he feels great! So far today looks promising regarding his behavior as well. This is a roller coaster from one extreme to the other. Praising God for how Hawke seems to be feeling and ill praise him when Hawke feels bad too. . A lot easier when things are going well to Praise our Creator. Have a great day everyone and thanks for all your support this past Friday! Sent on the Sprint® Now Network from my BlackBerry®

Hydrocephalus Awareness Day on Capitol Hill was a huge success. Thanks to all those who came from across the Country to speak and to the Members of Congress and Congressional Staffers who came to listen and learn! The PHF was proud to have organized this historic day for the Hydrocephalus Community! Sent on the Sprint® Now Network from my BlackBerry®

We are just 48 hours away from what will be an historic day for the Hydrocephalus Community. I am so looking forward to our Hydrocephalus Awareness Day on Capitol Hill, and to meeting many of you for the first time.   Congressman Lance is confirmed to join us and meet all of you, as well as say a few words, (time is yet to be determined based on the House's voting schedule on Friday). Other Member's of Congress will also be dropping by. The majority of our attendees will be staffers from the Legislative departments who are responsible for Health related issues for their Congressional office.   C-SPAN: Congressman Lance's office did another follow-up with them yesterday. While it is on their schedule as a 10am-1pm event, they just will not give a confirmation.   While I am writing this, I just confirmed that we will have the ability to stream the live video feed over the internet on our UStream-TV channel. This will allow anyone with the internet to watch the event LIV

Leaving for DC tomorrow morning. To testify about hydrocephalus; crazy! Thanks to an amazing church fund-raiser. Thanks family n friends for your overwhelming support to make this possible. Praising God for it's coordination. Someone even utilized a "hook-up" and secured us free hotel rooms! He said we serve a BIG GOD! Sent on the Sprint® Now Network from my BlackBerry®

Received a jab to the face today when Carm told me the Cleveland clinic said there is no other course of action to take. Additionally they told us based on his May CT he had a bleed in the brain (likely due to the 136 cranial pressure/Emergency surgery in May). Looks like Cleveland may be our new primary nuerosurgeon; long road trips ahead. Too bad for the enemy, we won't fall on the mat, we will get right back up with more determination and strength to attack the battle called hydrocephalus. Sent on the Sprint® Now Network from my BlackBerry®

Hawke's behavior baseline is the word used to reference his "normal" behavior. He's had some good moments but overall is below his baseline, makes me Nauseas. Glad Carmen is going to Cleveland tuesday morning (3:30AM). If Hawke doesn't get real bad prayerfully he doesn't so we can still testify in DC Sent on the Sprint® Now Network from my BlackBerry®

How's Hawke doing after his 2nd adjustment to his programmable shunt? Only two adjustment remaining until they have to remove it (brain surgery). Prayerfully it will work. But he is still behaving below his behavior baseline aka he is doing better than a week ago but not near his normal behavior. Walking by faith and excited for clevland and DC this week! Praying it all works out in Jesus name. Sent on the Sprint® Now Network from my BlackBerry®

CSF (Cerebral Spinal Fluid) has three important life-sustaining functions: 1) to keep the brain tissue buoyant, acting as a cushion or "shock absorber"; 2) to act as the vehicle for delivering nutrients to the brain and removing waste; and 3) to flow between the cranium and spine to compensate for changes in intracranial blood volume (the amount of blood within the brain). Sent on the Sprint® Now Network from my BlackBerry®

Sent on the Sprint® Now Network from my BlackBerry®

Next Tuesday Hawke is going to Cleveland for 2nd opinion. That Thursday (prayerfully) go to DC. Hawke is improved today (not screaming like day b4). This occured last adjustment, but he digressed a few days later. Praying and praising! Next to Hawke Carm needs prayer 4 more superhuman strength; love uall! Sent on the Sprint® Now Network from my BlackBerry®

Adjustment made on Hawkes shunt. Closer to max setting (for less drainage). Coordinating a second opinion in Cleveland ASAP. They r rated 7. Children's DMC 26, U of M 27. Tnks for prayen this works!! Sent on the Sprint® Now Network from my BlackBerry®

http://health.usnews.com/best-hospitals/pediatric-rankings/neurology-and-neurosurgery Sent on the Sprint® Now Network from my BlackBerry®

Screaming, crying, lack of appetite, smacking face = nuerosurgery visit. So frustrating. Ill be going to work; one of the toughest hydro things is leaving with so much uncertainty. Pray for Carm - tnks fam. Prayerfully another adjustment that (no brain surgery) works. Sent on the Sprint® Now Network from my BlackBerry®

We are just 10 days from history being made for the Hydrocephalus Community, as families with children, teens & adults with Hydrocephalus, from over 20 States for the 1st time EVER stand in front of Members of Congress and their staff to tell their stories for Hydrocephalus Awareness Day on Capitol Hill!! Sent on the Sprint® Now Network from my BlackBerry®

Yep, nasty pic today in honor of hydrocephalus awareness month. This is Hawkes head and during the 6 days in hospital he had 4 brain surgeries that week. If a programmable shunt prevents brain surgery why are there only two out of 100 on the market that are programmable? We need leaps in research! Sent on the Sprint® Now Network from my BlackBerry®

http://www.hydrocephaluskids.org/wordpress/

2 Weeks to DC!! Thus far I think our whole family gets to go (Praise God). The way this summer has been (8 brain surgeries) we just weren't sure. Praying the valve adjustment change on Friday keeps working. 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®

Its been 2 weeks? Symptoms say time for shunt valve adjustment. Praise God for an adjustable shunt, there should be more options like this to avoid surgeries Sent on the Sprint® Now Network from my BlackBerry®

Stitches removed means we can play in the bath! Sent on the Sprint® Now Network from my BlackBerry®

Scripps research scientists find clue to cause of childhood hydrocephalus http://www.eurekalert.org/pub_releases/2011-09/sri-srs083011.php Sent on the Sprint® Now Network from my BlackBerry®

Hawke seems to be doing good. . . But there is some irritability and he has a cold (cold symptoms or overdrainage symptoms)? He seems happy most of the day. Its possible he could be slightly overdraining and may need an adjustment to his shunt, were "monitoring" and praying he is good to go for a few months, years praying that fiercely. Sent on the Sprint® Now Network from my BlackBerry®

Hawke seems to be doing good. . . We are "gun shy" and keep waiting for the symptoms to appear. We all have a cold and he has been a little irritable, today lacl of appetite. But the boy has snot running down the bk of his throat. It appears very good thus far. . . A little concern of overdrainage which will equal an adjustment if necessary. Sent on the Sprint® Now Network from my BlackBerry®