Christian
Jones-Norquist was born to Brad and Steffanie Jones
on November 22, 1998. He
was developing normally until he and his parents were
in a car accident on Christmas day 1999. His parents
were killed instantly. Christian sustained a severe
head injury, 2 fractured legs, broken jaw and was
in a coma for a week. Doctors gave a grim prognosis.
Christian was soon shunted because he had continued
intracranial pressure. He was given a subdural shunt
that quickly failed. A VP shunt was put in. He remained
in the hospital for 4 months. Within those four months,
he had 4 shunt revisions to reduce fluid accumulation
and tubing problems. He also suffered from grand mal
seizures, diabetes insipidus, panhypotuitarism (body
doesn't make hormones), respiratory problems and feeding
issues (he was given a feeding tube).
In June 2000, Christian moved in with
Skeets and Kim Norquist. He was 18 months old. He
was able to sit up, smile, hold his head up and reach
for toys. He had reverted back to the cognitive age
of a 3 month old and could barely move. Doctors did
not expect him to ever be able to walk or talk. Christian
immediately began early intervention services, Occupational,
Physical and Speech Therapies. He began to walk at
age 2.5 and used simple signs to communicate. He eventually
began to talk and now at age 7 hasn’t slowed
down!
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JayLynn
was diagnosed with hydrocephalus in utero at 21 weeks.
She was born to proud mom
Melissa on November 16, 2005 by C-section three weeks
earlier than her due date. JayLynn weighed 5lbs, 6
ounces and was 16 inches long. She was was born at
Tacoma General in Washington and is being followed
by pediatric neurosurgery at Marybridge Hospital in
Tacoma, WA. She has a very rare condition called rhombenencephalosynapsis
in addition to hydrocephalus.This means that her cerebellum
is fused. There have only been 40 cases reported since
its discovery in 1914. So far JayLynn is doing well
despite her hydrocephalus and fused cerebellum. She
is very loved by her family.
JayLynn is scheduled to have her first
VP shunt placed on February 21, 2006. We wish her
well. JayLynn is a sweet little girl who is growing
well and she loves her binky. JayLynn and Melissa
live in Tacoma. Contact Melissa for more information
about JayLynn at gizmo72085@aol.com.
Lizzie’s
miraculous journey began October 12, 2005, when she
was born at 26 weeks. I began
bed rest at 20 weeks and was hospitalized at 24 weeks.
We were guaranteed to deliver early. While this helped
to prepare us, we had no idea what challenges would
face our daughter immediately and long term. Lizzie
spent 75 days on the ventilator, had a grade III/IV
Intraventricular Hemorrhage (IVH), Patent Ductus Arteriosus
ligation, mild Necrotizing Enterocolitis, Retinopathy
of Prematurity and was diagnosed with “slow,
yet progressive Hydrocephalus” as a result of
the IVH. She went through surgery December 12th for
a VP shunt. Since her shunt has been placed, Lizzie
has had no ill effects. January was a month of rapid
recovery: she was extubated January 5th, taken off
CPAP and onto nasal canula on the 8th and went home
on the 24th. She is amazing and such a blessing. Lizzie
and her parents live in Buckley, WA and can be reached
via email to SarahSunday@hotmail.com.
Madison
was born November 26, 2004 a healthy 9 lbs.. She spent
the first one and a half weeks
of her life in a bilibed due to some stubborn jaundice.
At her 2 week checkup her wonderful pediatrician Dr.
Plonsky noticed her doing something odd with her eyes
for a split second and decided to send us to the emergency
room at Marybridge Hospital in Tacoma. There she had
a CT scan and we were told there was a mass in her
brain near her third ventricle. We were ambulanced
up to Children's Hospital in Seattle where a second
scan showed the same thing. The doctors told us that
it was in a sensitive area of her brain that they
would not go into to surgically remove. An endoscopic
biopsy would be done to try and determine what it
was. We were told it could possibly be a malignant
tumor in which case there was a chance Madison would
not have long to live. After the biopsy we were given
the good news that it was a blood clot. After time
the clot would dissipate but in the meantime she would
need an external shunt to help drain fluid and then
a vp shunt would be placed after it cleared up to
fix her hydrocephalus caused by the clot. After countless
blood tests to determine why she got the clot in the
first place (everything turned out normal) it's still
a mystery. Throughout the whole ordeal Madison was
the sweetest baby. A year later she is still doing
great and continues to amaze her mommy and daddy.
Marissa,
born September 20th, 1991 at 36 weeks gestation. She
weighed 5lbs. 10oz. and had her first VP shunt placed
at five days old at Walter Reed Army Medical Center,
by Dr. Richard Ellenbogen (while he too was in the
Military) , now Chief of Neurosurgery at Children’s
Hospital, Seattle. She was diagnosed with Scizencephaly,
which by definition does not accurately describe her
abilities, because Marissa has some splintered abilities
within her academic and social life. Marissa has endured
years of Physical Therapy, Speech, Occupational Therapy
and some Feeding Therapies. She continues now to work
on all of those therapies in school except the eating
issues that dissipated through development. She has
also had hip dysplasia and a right foot vertical talus
and surgery on those issues at 4 years old. Marissa’s
brain was severed at birth and filled with fluid which
has continued to cause her balance issues and vision
difficulties (near sightedness, strabismus). Since
Marissa’s initial VP Placement she had her first
malfunction in January 2000 (Y2K- bug) at age nine
and another malfunction last year (2005) which required
three surgeries to correct - it appears that her growth
and development has affected her shunt. Marissa walks,
talks, sings in choir, she played soccer for one season,
and taken Horse back riding lessons. Currently, she
is working on learning to play the piano, riding a
bike, and attending general education P.E. In Jr.
High School General Ed P.E. is very advanced where
the children are asked to run everyday and on Friday
take a timed running mile which is physically exhausting
for her, but she always prevails. She has had some
set backs from her last surgeries and it appears to
take her a little longer to recover, but her overall
health is amazing. Marissa has only had the flu once
and never an ear infection in her life! Overall she
is a happy- go-lucky teenager with some fine/gross
motor delays, she attends Special Education at our
local Jr. High School, and she loves to sing! Marissa
also has two little brothers that she helps to take
care of and three dogs. Please contact mom Kelly at
Mk98505@aol.com if any questions.
Noah
-- 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 Overlake Hospital. 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 his first and half year of life.
Here we would meet Dr. Jeffrey Ojemann the neurosurgeon
that would save Noah's life over and over and give
us comfort through the many frightening and difficult
times ahead. (click
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Violet
was born 16th August 2005, a full term baby weighing
a healthy 9lb 3oz. The day after
she was born, a midwife suspected something suspicious
about her head circumference and organised a head
ultrasound be performed.This revealed that Violet had a bleed in her left ventricle that caused her to develop Hydrocephalus. She then had an MRI and this revealed another problem, she also has Microphthalmia (Small Eye) in her left eye and this has caused her eye to be blind. Her first Op was a Endoscopic Third Ventriculostomy in November 2005, this unfortunately was not successful in controlling her Hydrocephalus. She then had her VP Shunt put in January 2006 and all is going well. We are thankful she is in our lives and is much loved by her family. See more of about Violet at her blog, www.violetsjourney.blogspot.com
William
will always celebrate two birthdays: one on January
10, 2005 when he was born 10 weeks
early and two days later on January 12, 2005 when
the Seattle Children’s Infant Intensive Care
team saved his life after he almost died of a pulmonary
hemorrhage. His doctors, nurses and respiratory therapists
had to “hand bag” him to keep him alive
for almost 12 hours including during the ambulance
transport because he couldn’t breathe on a ventilator.
As parents, it is your worst fear to watch your newborn
child wither before your eyes. Nothing can prepare
you for it and nothing will ever make you ever forget.
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Send mail to lpoliski@hydrosupport.org
with a digital picture and your child's story (approximately
500 words or less) and we will post it here.
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