Jan 20, 2008

"Sherman Alexie (The Infamous Script Writer and Director)"

Sherman J. Alexie, Jr., was born in October 1966. A Spokane/Coeur d'Alene Indian, he grew up on the Spokane Indian Reservation in Wellpinit, WA, about 50 miles northwest of Spokane, WA. Approximately 1,100 Spokane Tribal members live there.

Born hydrocephalic, which means with water on the brain, Alexie underwent a brain operation at the age of 6 months and was not expected to survive. When he did beat the odds, doctors predicted he would live with severe mental retardation. Though he showed no signs of this, he suffered severe side effects, such as seizures, throughout his childhood. In spite of all he had to overcome, Alexie learned to read by age three, and devoured novels, such as John Steinbeck's The Grapes of Wrath, by age five. All these things ostracized him from his peers, though, and he was often the brunt of other kids' jokes on the reservation.

As a teenager, after finding his mother's name written in a textbook assigned to him at the Wellpinit school, Alexie made a conscious decision to attend high school off the reservation in Reardan, WA, about 20 miles south of Wellpinit, where he knew he would get a better education. At Reardan High he was the only Indian, except for the school mascot. There he excelled academically and became a star player on the basketball team.

In 1985 Alexie graduated Reardan High and went on to attend Gonzaga University in Spokane on scholarship. After two years at Gonzaga, he transferred to Washington State University (WSU) in Pullman, WA.

Alexie planned to be a doctor and enrolled in pre-med courses at WSU, but after fainting numerous times in human anatomy class realized he needed to change his career path. That change was fueled when he stumbled into a poetry workshop at WSU.

Sherman received the 2008 Stranger Genius Award in literature in Seattle on September 13th.

Sherman and Charles Burnett present a Milestone Film release of The Exiles, directed by Kent Mackenzie.

Visit his website - shermanalexie.com - by clicking here or on his picture for more stories.



"Gina Marie (1978)"

I was born just before Christmas in 1978. It is believed that during a family holiday gathering, I was exposed to a young relative that had strep-throat and fever. I developed spinal meningitis with secondary hydrocphelus. At two weeks of age, I recieved a surgically implanted ventriculopertineal (VP) shunt.

I was admitted to the U.S. Navy base in Jacksonville, Florida, where I went through a series of spinal taps, blood work and x-rays. The base facility was not capable to handle my condition and was transferred to the Baptist Children's Hospital in downtown Jacksonville, where I received my first shunt. The surgeon reportedly held no good news or hope for my recovery. But, I proved the doctor wrong and I survived.

As I set up residency in the ICU, my Uncle Wayne was two floors below being treated for his bout with Cystic Fibrosis. My mom was able to visit each of us. I was eventually transferred to critical care and shared a room with a 7 year old who was in a comma. Several weeks pass and my meningitis came back. I was transferred to Shands Teaching Hospital in Gainesville, Florida. My mom rode in the ambulance with me.

Click photo for more stories.


"Noah Benz (02-09-2004)"

IVH Grade III and IV Bleed, Acquired Communicating Hydrocephalus with Medtronic Programmable VP Shunt and Codman Programmable LP Shunt, Slit Ventricle Syndrome, Metopic Synostosis, Calvarial Vault Expansion surgery (04-28-05) Auto Immune Neutropenia, moderate to severe motor and speech, severe oral issues (G-Tube), and mild cognitive and sensory issues.

Our sweet little angel came into our lives February 9, 2004 and made his entrance into this world a slow one. After almost 4 and 1/2 hours of active pushing he finally arrived and weighted 6 pounds 9 ounces. He was beautiful and looked so healthy on the outside, but because of the long labor he would experience damaging effects to his brain. Our first sign of this came 6 hours after his birth when he started having seizures and briefly stopped breathing. He was immediately taken to the NICU there at the hospital where he was born at. After many tests and ultrasounds they discovered he had a bleed in his ventricles and a possible stroke. They diagnosed this as an Intraventricular Hemorrhage ( IVH) grade III and IV bleed. This would be the cause of his Communicating Hydrocephalus and would mean the placement of a shunt was necessary. He was transferred to Seattle Children's Hospital and Regional Medical Center, where little did we know at the time would become our second home on and off throughout the first year and half of life. Here we would meet Dr. Jeffrey Ojemann the neurosurgeon that would save Noah's life and give us comfort through the many frightening and difficult times ahead. On March 3rd of 2004 Noah received his first VP shunt at three and half weeks of age after his head circumference jumped from 35.5cm to 39cm within two days. This shunt caused many problems and at 7 months he would receive his second shunt, this being a programmable now.

However, it was only the beginning to 15 more shunt revisions, 2 serious shunt infections requiring a total of 11 weeks on 4 different intravenous antibiotics, the diagnoses of slit ventricle syndrome, the placement of a second shunt this one being an LP shunt (lumbar peritoneal), the placement of his VP shunt into the third ventricle of his brain instead of the lateral ventricles, the usual place for a VP shunt placement, and the diagnoses of an auto immune deficiency called Auto immune Nuetropenia. Noah had a Calvarial Expansion (cranial expansion) on April 28th 2005. This procedure involved having almost all of his skull taken off and spacers put in between the skull bones to increase the overall size of his head. Giving his brain room to grow. They diagnosed this problem as Metopic Synostosis a type of craniosynostosis, Dr. Ojemann and his plastic surgeon believe this problem was acquired from having so many shunt problems and was not congenital.

Click his photo for more stories.


"9 Year Old Brittany"

I hope that you'll learn from my story that I'm a normal kid...and that you don't need to be scared of kids with problems...and you don't need to tease them. At my school, I visited all of the rooms to meet the kids and help them know how to help me if I fall down or hit my head. They learned to get the teacher quickly! Everyone watches over me at school now so I don't get hurt.

Click her photo for more stories.







"Little Charlie Rock (22 February 2004)"

Matthew was so small and so, so thin, he almost didn't look real laying in that acrylic box. We were given the rundown on his condition and made aware that he couldn't breath on his own, so he was on a ventilator. This was not what I bargained for when I got pregnant. Why wasn't my baby fat and active? We were given information on how the NICU operates. Basically, we were told that the twins would be in the NICU most likely until their original due date, May 20th. My babies were going to be in the intensive care for THREE MONTHS. Only then did it hit me that I wouldn't be leaving the hospital with my babies and the gravity of the situation began to sink in.

Then it was on to Charlie's room. The second I crossed the threshold, I began to cry. He had twice the equipment as Matthew and the floor shook terribly from the machines keeping him alive. I was sick to my stomach and I couldn't even stand up to see my baby. I wanted to see him, but I was so afraid. When I did get the courage to stand, all I could see was what looked like an extremely old man laying limp with TONS of tubes and tape. He didn't look like a baby at all. He was so tiny and the tape was so big that it didn't allow me to actually see him. He was under the bilirubin lights so everything was extremely clinical and nothing was hidden from sight.

I can't express to you how small he was and I will never forget how he looked, how his tiny chest rose and fell with each breath that the oscillator forced into his small body. There was no cuddling, no comforting my baby. He couldn't be touched and I wanted to scream and scream loud. I was mad at everyone. How could this happen? Then the nurse gave us the details of his condition. Charlie was paralyzed and on complete life support and he had a 50/50 chance of survival. I have never felt so hopeless as Brian finally wheeled me back to my empty hospital room.

Charlie & Matthew spent 66 days in the NICU. During those 66 days, we absorbed more medical knowledge than a first year medical student, and I'm not kidding. I couldn't even begin to tell you the numerous tests and procedures the twins needed to have to survive. I thank God everyday for the doctors and nurses in the NICU. They are truly wonderful, amazing people and we could never repay them for helping our "miracle babies".

Click his photo for more stories.


"Violet (16 August 2005) - Violet's Journey with Hydrocephalus and Microphthalmia"

They performed many tests and scans on Violet. She had an MRI on 24.8.05 and she was given Chloral Hydrate to knock her out long enough to stay still for the MRI or it would have been a waste with any movement. Trouble is by the time a porter comes (they are very busy people) to take Violet down to have it, she is already starting to stir. I had to sit near the MRI Machine, for my own benefit of knowing that she had stayed still, then I would know it had not been a waste of time. There faces said it all, as I was in with Violet I saw only 2 people performing MRI and then 1 going off to get more people and ended up with 5 people. Then when they had finished the scan, they would not tell me anything, even when I asked, so we still did not know what the scan had revealed.

The next day we were told, she had a brain condition called Hydrocephalus. The name originates from the Greek words ‘hydro’ for water and ‘cephalus’ for head.

We all have what's called cerebro-spinal fluid (CSF), it is a clear fluid which is made up of water, protein, sugar and minerals and flows from one ventricle to the next, circulating around the brain and down the spinal cord. The CSF is then absorbed into your bloodstream.

Hydrocephalus is when an event has occurred, which causes the cerebro-spinal fluid (CSF) to accumulate. The pressure then starts to build up within the skull. When the ventricles swell to a large size, the excess fluid can then cause pressure on the brain cells and cause damage.

Violet's Hydrocephalus is Congenital (meaning - present at birth) and Doctors confirmed that sometime during her development, she had a brain hemorrage, from which the blood has plugged up the brain's CSF pathways or ventricles, no longer being able to drain away, as they should.

Click her photo to access to her blog.


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