Overcoming hydrocephalus

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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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®

Sent on the Sprint® Now Network from my BlackBerry®

Sent on the Sprint® Now Network from my BlackBerry®

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®