Overcoming hydrocephalus

This past 45 days has taught me a lot; Life. Its not a "right" or "guarantee" to live. . it is purely a gift from God, given to us freely. What am I going to do to embrace this gift for the gift it is? Love more! Praise more! Live! Sent on the Sprint® Now Network from my BlackBerry®

He's been awake for 40 minutes still real groggy but tryn to play! Sent on the Sprint® Now Network from my BlackBerry®

ICP wires. These go apx 2" in his head and r removed w/o surg Sent on the Sprint® Now Network from my BlackBerry®

Hawkes ICP monitor Sent on the Sprint® Now Network from my BlackBerry®

15 minutes? Till surgery. Here is Hawkes head 2 weeks post surgery, ill post post-op. Praying the works well and surgery, recovery is quick and easy 4 bub! Sent on the Sprint® Now Network from my BlackBerry®

Waiting for Nuersurg to meet with us Sent on the Sprint® Now Network from my BlackBerry®

Stayed overnight 4 observation, CT Scan show's ventricles unchanged (good). Of course when we get here Hawke starts acting like a champ (unusual over past 2 weeks). Over drainage can be hard to detect w/o a cranial monitor surgically implanted (ICP). Not sure what's next, will we go home with Hawke not behaving like Hawke or have an ICP implanted n stay for observation? Both option's aren't great. Sent on the Sprint® Now Network from my BlackBerry®

CT scan complete, pending results. Expecting small ventricles? Sent on the Sprint® Now Network from my BlackBerry®

Packing up to go to the hospital for 3-4? days might be the hardest part. . . . lvn for childrens hospital, praying for quick success and root cause! Sent on the Sprint® Now Network from my BlackBerry®

Started reading up on chronic over drainage and split ventricle syndrome (SVS) and it all makes awful sense. Our nuero and hospital has gotten top 5 over past 4 years in Nuerosurgery; I talked to nuero and we have a plan. . . May require another 2 surgeries if this next one doesn't work. Switching to a "high gravity device" attached to his shunt versus a "low gravity" next surg to try n prevent over drainage. Tough and frustrating. If this one doesn't work it may require a lumbar shunt, have to review his progress ect. Late this afternoon going to Children's hospital. Sent on the Sprint® Now Network from my BlackBerry®

Programmable shunt that didn't work for Hawke Sent on the Sprint® Now Network from my BlackBerry®

External shunting Sent on the Sprint® Now Network from my BlackBerry®

What does an external shunt look like? Here it is Sent on the Sprint® Now Network from my BlackBerry®

2 weeks ago post 4 surgeries. 2 shunts, external shunt (EVT) and Inter cranial Pressure monitor (ICP) Sent on the Sprint® Now Network from my BlackBerry®

A visit to ER post surgery. All tests look great but Hawke would exhibit symptoms thru ought the week of over drainage? Sent on the Sprint® Now Network from my BlackBerry®

1 week post surgery (last Sunday) Sent on the Sprint® Now Network from my BlackBerry®

Sent on the Sprint® Now Network from my BlackBerry®

Hawke has had some rough days recentlly; We are in prayer weather we need to head to nuerosurgery today . . .praying for discernment and th anking all of you for your prayers and love! Seems like his overdrainage won't stop, based upon the symptoms we are seeing and this past month.  Based on some nuersurgery articles we are reading finding a shunt that works may be like a crap-shot? "The major contributor to recurrent malfunction is the development of very small or slit-like ventricles and chronic shunt overdrainage. Although overdrainage seems to occur in most patients shunted in childhood, it is the development of craniocerebral disproportion that is the primary underlying pathophysiology." http://book2.neurosurgeon.org/?defaultarticle=&defaultnode=2648&layout=22&pagefunction=Load+Layout " None of the particular valve designs that have been used clinically has eliminated the phenomenon of chronic overdrainage. Some designs seem to allow overdrain

After 3 surgeries in May and 2 in April, Hawke's (who turned 3 on MAy 14th) stitches were finally removed today!  3 Revisions and externalized shunt.  We are still "gun-shy" looking for symptoms of any failures.

Im going to blog about our experiences and challenges of beating Hydrocephalus, Cerbreal Palsey and additional challenges.  I want this blog to be a resource to others and an encouragement to those facing the same and similar challenges.  More to come soon  5/22/11