Overcoming hydrocephalus

On the way to granting Hawke's wish. Thanks rainbow connection!

Hawke is in the running to be the "Face of hydrocephalus". Drawing is early January. Neat to see all the faces submitted, just a sample of all the children and families effected! http://www.hydrocephaluskids.org/images/theboys.html Sent on the Sprint® Now Network from my BlackBerry®

Hawke has been granted a wish to Disney World. Praying he continues to have good days as the trip is nearing. No flying, we don't want to take any chances with pressure on his head as many have complained of this. We get to stay in a village for children with life threatening conditions. This trip is such a blessing particularly after a year with 9 brain surgeries. Praising God for all things and thanking the rainbow connection! Tomorrow is not a guarantee or entitlement, every day is a gift.

Please pray for Willow, our friends daughter whom is fighting hydrocephalus some of her recent posts: Spending the last hour of my birthday in ER Thinking it is still ear infection but doc said to go in They are going to order a CT scan to make sure it is not shunt related her ventricles are slightly enlarged from her mri a month ago. We are going to be admitted here tonight, her temp has also gone up. :( Sent on the Sprint® Now Network from my BlackBerry®

The Next Step in Robotic Neurosurgery http://techland.time.com/2011/11/30/the-next-step-in-robotic-neurosurgery/ Interesting read Sent on the Sprint® Now Network from my BlackBerry®

Great link on hydrocephalus    http://healthguide.howstuffworks.com/hydrocephalus-dictionary.htm   Cerbral spinal fluid  http://health.howstuffworks.com/human-body/systems/nervous-system/brain-nervous-system-ga1.htm

So focused on hydrocephalus I haven't read much about Hawke"s cerebral palsy which is a muscular condition as a result from scaring on the brain. Hawke received a new script for braces today and his muscles are becoming stiff per the doctor. We have to start up PT again with the potential of Botox shots next. Time to read the big Cerbral palsy book collecting dust on my bookshelf Sent on the Sprint® Now Network from my BlackBerry®

Dejay. . . Lost the fight to hydrocephalus. . . Keep his fam in prayer. Finances for funeral his mom can't afford.

Codman Launches CERTAS Programmable Valve for Hydrocephalus http://m.prnewswire.com/news-releases/codman-launches-certas-programmable-valve-for-hydrocephalus-133847448.html Sent on the Sprint® Now Network from my BlackBerry®

Hawkes has been feeling well! He loved his sisters birthday party a few weeks ago. What's next? Consultation with U of M nuerosurgeons, scheduling his eye surgery at Beaumont and a physiatrist appointment. . He will receive a new scrip for braces. Hawke is speaking with more complexity and his eating is slightly improved.

A great weekend away with my family and friends. We can only do this by His (God) grace and by all he has provided. Such a blessing for Hawke to be out of the hospital for so long. Thank you Lord! Sent on the Sprint® Now Network from my BlackBerry®

With Hawke behaving so well. . . Time to schedule eye surgery on his ocular muscle to decrease his strabismus(crossing eyes). This will improve his sight as well. Just the thought of him having to get poked more is dirty. Thankful we can do this. . Praise God. Sent on the Sprint® Now Network from my BlackBerry®

Hawke has been granted a wish by Rainbow Connection! Its overwhelming the blessing it will be and the fact he qualifies to stay at lodging only for children with a life-threatning condition. Praising God! Praying he stays healthy, thank u Michigan Rainbow connection! Sent on the Sprint® Now Network from my BlackBerry®

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®

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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®

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®

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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®

A text I sent to my wife today: I've been thinking this last year would of been easier for him in heaven....but I remember this season WILL pass and he has a lifetime with us weather that's 5 years or 60 (I think he will live a fruitful life once this season passes). Hate this hydrocephalus and lack of major recent advances. Sent on the Sprint® Now Network from my BlackBerry®

The joys of interpreting post-op behavior and too little or too much cranial pressure begin. Thankful for every day with my loved ones. Sent on the Sprint® Now Network from my BlackBerry®

My shirt says "Kuwait" a vet/patriot bought it for me. I'm a vet but I've seen no wartime; I have seen and am fighting this war on hydrocephalus with my family, friends and the community of hydrocephalus. Sent on the Sprint® Now Network from my BlackBerry®

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Keeping his head down due to overdrainage Sent on the Sprint® Now Network from my BlackBerry®

Sent on the Sprint® Now Network from my BlackBerry®

Over-drainage http://hydrocephalus.allanach.dk/complications Over-drainage is a more difficult problem, although a higher pressure shunt will initially solve the problem, it is not usually a long term solution. Studies have shown that the use of an 'anti-siphon device' (a small button inserted into the shunt tubing) will often solve the problem, but this does not always work. Some shunts have these built-in, but neurosurgical opinion varies as to whether they should be used. To change a valve pressure it is necessary to remove the valve and insert another. The 'programmable' or adjustable shunt is intended to allow adjustment of the working pressure of the valve without operation. The valve contains magnets which allow the setting to be changed by laying a second magnetic device on the scalp. This is useful where the need for a valve of a different pressure arises. The adjustable valve is no less prone to over-drainage than any other and it cannot be used to tre

Hawke is showing some signs of improvement. Seeing some redness below his shunt scares the heck out of us as it can be sign of infection which equals removal of all shunt stuff and heavy antibiotics=long time in hospital, risky scenario. We prayed and rebuked infection in Jesus name while he received benadryl. It appears to be cleared up. . . Half a pheww let out and when it stays away the rest of the pheww. Praise Jesus regardless! Helping us to walk on some rough water. Sent on the Sprint® Now Network from my BlackBerry®

Today were taking Hawke to Children's hospital. A slow decline since last surgery and near an hour of screaming at everything last night is enough evidence to decide its time. Options? Brain surgery to place an ICP monitor and see the #s and/or insert icp and new shunt again. He has the highest anti gravity device placed currently connected to shunt. Another surgery to take my son into, another walk down the O.R. hallway, another gas mask to force on his face, another time to wait for post op and recovery, another walk of faith, another day of life! Another step closer to the right shunt, another day Closer to a heAling, another day to Champion the family I'm blessed to be Husband and Daddy. Thank you Lord! Praying for strength, understanding and wisdom. Sent on the Sprint® Now Network from my BlackBerry®

Beautiful pics!! Shortly after Hawke was screaming for a long time :-( heading to Children's hospital in the A.M Sent on the Sprint® Now Network from my BlackBerry®

"Hawke screamed for an hour. Just at everybody about everything". The text you dread to receive while at work. Callen Nuero Sent on the Sprint® Now Network from my BlackBerry®

Hawkes been on a slow decline with some occasional and sporadic improvements. Calling Nuerosurgery for an appointment; not liking what were seeing thus far, anticipating healings while preparing for surgery. Will continue to pray for healings and miracles! The enemy will not take our joy in this life, joy in Hawke's life or our Joy in our amazing Lord! Sent on the Sprint® Now Network from my BlackBerry®

Hawke has been making some progress. His appetite has slightlly increased (any increase for Hawke is significant) but is still small (maybe one meal a day, some snacks on average). His shunt appears smaller yesterday but doesn't feel swollen (called nuero, they are calling back). His stuttering has slightlly increased, eyes crossing more freq? Unequalized pupils continue sporatocally. So what is goin on with the boy? Behavior is generally good for attitude but he has moments every day where he is very whiney....how much of that is just 3 year old kid stuff? How much is Hawke with brain damage and not a shunt failure or overdrainage? Read some medical documents recently that highlighted the brain damage he has received from hydro (pre-shunt or post ICP 136) . Nuerosurgery callen soon, seeking the Lord and using discernment. Sent on the Sprint® Now Network from my BlackBerry®

Today Hawke is behaving better than the past 5ish days; U never know with hydrocrapalus. . . Cherising every moment with the kiddies! Sent on the Sprint® Now Network from my BlackBerry®

5 days post brain surgery. . . How is Hawke doing? Honestly its hard to tell. . . He seems to be doing well and good in some areas , yet some post op symptoms mirror shunt failure symptoms. This is a very dis comforting and nausea ting scenario as parents; much more difficult as the patient! This is hydrocephalus. By faith we lay our heads down to sleep unsure if an urgent failure symptom will emerge during the night or during the next day. By His stregnth we can overcome! Sent on the Sprint® Now Network from my BlackBerry®

2 months until DC trip to speak to many members of congress. With 7? Brain surgeries this year we are bringing some passion. Hawke acted phenomenal yesterday, it was amazing. How long will it last!? This day started at 730 monday morning. . . Its 518am almost home and can't wait to sleep in the same bed with the love of my life Sent on the Sprint® Now Network from my BlackBerry®

Sent on the Sprint® Now Network from my BlackBerry®

Hawke has had another surgery as seen in the pics below. #9 To be exact. So much races through my mind. How many can he endure? What's the impact on his organs? His heart? Anesthesia 9 times this year and 10 later to help his eyes align. Impact on his diet?! Our hearts break every surgery. . . Will his bright personality return post-op? Will there be a hiccup? I hate this condition, but although this area in medicine has so far to go it has come so far. How much innocence is lost each poke and prod? His siblings, his big sisters(his lil mama's). . . Thank you Lord for pulling him through again. Praying this goes well for at least a year? A month? 5 months? Thank you Lord for your mercy and grace. CT scan looked good, the only indicator of over drainage was lethargy and loss of appetite (the little one he has). Crabby and extreme irritability. He wanted just to exist on the couch and lay flat. 3 days of that was enough - praising God for a great nuerosurgica

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Carmen said Hawke did well through the night (Praise God). His ICP still fluctuated but in a safe range. Neew roomate has mono? (yikes) praying for the child and rebuking the infection in Jesus name. Let's see how Hawke behaves and eats today as this will be the true test of new anti-gravi ty device. Sent on the Sprint® Now Network from my BlackBerry®

Still waiting for OR to come. . Hawke is sleeping solid, heart rate is 60-70 (can be symptomatic of shunt issues/deep sleep). Plan is to chk the catheder from ventricles to shunt, if ok insert a stronger anti gravity device and icp monitor. Tnks for the love fam! Prayen this is quick, precise and easy for Hawke (and Mom n Dad). Sent on the Sprint® Now Network from my BlackBerry®

Admitted to hospital; Surgery in morning. . . Possible new anti gravity device, diff shunt? Or just and icp monitor (inter cranial press monitor). Dr still determinin g solution$ Ventricals look good - suspect overdraina ge just like mom n pop suspected. Thanks for all the love n prayers! Sent on the Sprint® Now Network from my BlackBerry®

Without a miraculous turnaround (which were believing for) Hawke will likely be going to children's hospital Friday; These symptoms are near identical to the past. . . . . Sent on the Sprint® Now Network from my BlackBerry®

May have to take Hawke to Neurosurge ry tomorrow depending on his behavior; praying and expecting not to as we expect him to improve throughout the day. GOD SHOWS UP BIG! Our hotel room's in DC has been paid for in full! No more worries about how to pay 1200-1600 for the hotel stay. AMAZING! The donor said give the Glory to God. Praise God! Thanks for all your prayers and support! Symptoms are similar to last time a rev was needed. Whiney, screaming, lethargic, won't eat but myb a bite of food, decrease of personality. . . Praying for healing in Jesus name! Sent on the Sprint® Now Network from my BlackBerry®

Hawke showed signs of shunt failure yesterday, all day. Extreme lethargic. Praying. Sent on the Sprint® Now Network from my BlackBerry®

I am posting a text conversation that my wife and I exchanged last week between one another (with her permission and some edits).  ITs an example of what it can be like having a child with a condition where advances (significant) are lacking and desperatelly needed.  The text may also let other hydrocephlaus parent know they aren't alone.   The scenario is this:  Im at work and Hawke has been having good days, doing well: Carm: Hawke slept Carm: an hour & a half & got up for a lil while but is layin & cuddlin w me like he's goin back to sleep! Carm: He has a headache :( Jason: He said his head hurt? Jason: Dnt like that Jason: Concerns me a little Carm: No. Keeps closin or covering eyes & covered his ears when loud noise. Layed himself down flat & yawning Jason: Ok, tnks Carm: What should I do? Carm: He's just layin on me quiet & motionless Jason: Should u do? Jason: Monitor? Jason: Is he sleeping? Carm: Eyes open but arm acrss them J

3 nights in DC = 1161.00 just for hotel room and that's at a discounted rate. Family of 5 or more required to get 2 adjoining rooms (Grrrr). Cost per night without discount 250.00. Walking by faith! The opportunity to be a voice for hydrocephalus and our son = unmeasurable. Check in 9-22; speaking to congresswoman and men 9-23. Sent on the Sprint® Now Network from my BlackBerry®

Someone raised 300.00 and potentially more via a tupperware sale. We never asked, she just did for Hawke. That covers almost two nights stay for our testimony in DC to congress members. Can't say thanks enough @Rose Kielczewski. Praising God for what you have done and all whom are helping, humbled!! Sent on the Sprint® Now Network from my BlackBerry®

Rose Kielczewski  is holding a Tupperware party to benefit Hawke and our trip to speak to Congress men and women.  Here is the info she posted: ‎3 yr. old Hawke Adams who has Hydrocephalus (water on the brain). Hes had 6 brain surgeries since april. Im doing a Tupperware connect party and anything made goes to him to pay bills. If your interested please send me your name and email. I will have it set up in a week, that way I have time to get email from everyone. Anything you order will help. Please paste it on your wall to get the message out to everyone. The more people we can get this out to the more people who might be willing to help this little boy. You can email me at tupperware4mom@yahoo.com Event address: http://www.facebook.com/event.php?eid=250197191658729

This week I accepted a voluntary position as "Co-director" of the PHF Michigan chapter. In short, that means I have the opportunity to make an even bigger impact on improving shunts and finding a cure to hydrocephalus! PHF is a non-profit, pays no salary and ALL funds go toward the cause, fired up! PHF is Pediatric Hydrocephalus for kids. Same organization giving me opp to tell our story to congress 9/23. The time commitment is non existent, whatever I can do is acceptable ;-) www.hydrocephaluskids.org www.fightinghawke.blogspot.com Sent on the Sprint® Now Network from my BlackBerry®

Early trip to children's hospItal in the a.m. for an upper GI on Hawke; seeking answers on his lack of appetite although he has shown a slight increase since revisions Sent on the Sprint® Now Network from my BlackBerry®

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®