|
Photo Contest Stories
Andy
(Parents - Kristi and Bruce)
Our first
child, Andy was born on February 4, 2000. He had a shoulder dystocia
and was stuck for 7 minutes. Once he was out, he was without oxygen
for 15 minutes. His apgar scores were 0, 0, 0, 4 at 15 minutes. A
g-tube was placed at 4 weeks of age and he was able to come home
from the hospital at 4 ½ weeks old. At 11 weeks old, he had a VP
Shunt placed because he developed Hydrocephalus due to a Subdural
Hemotoma at birth. A few days later, he had to have a revision
because it was infected. Once he was finally out of the hospital at
4 months old he started receiving PT once a week. As he got older I
started asking for more therapy. While he was in the Infant Program
he received PT, OT, Speech, Music, and Water Therapy per week. His
g-tube was removed at 16 months of age.
As of today, Andy is in
preschool. He is receiving Speech, OT, PT and OT for Sensory
Integration. His diagnosis is
Mild-Moderate Mixed Tone CP, possibly Athotoid (depending on who you
talk to), Major Sensory Integration issues & Hydrocephalus. He
is Non-Verbal. He knows and uses about 50 signs and we are working
with a communication device. He
is sitting independently, cruising the furniture a bit, walks short
distances with a Kaye Walker, loves to climb on things, he has
a strong personality that can get him into trouble.
We
are very pleased with his progress and hope he will continue
to gain strength the older he gets.
Capri
(Parents - Tom and Diana)
We have a 6 year old diagnosed with CP, microcephaly and severe
MR. Never the less she is the greatest blessing we have ever
received. She is non vocal and unable to sit without being
propped up.
Garrett
(Mother - Brandi)
Hi, my name is Brandi Jarvis and I'm sending you photos of
my son Garrett. He is 10 months actual, 6 months corrected
and is a soul surviving triplet born at 23 weeks gestation.
He was the smallest of the three weighing in at 1 pound, 3
ounces and is now right around 15 pounds! He has a grade 3
IVH on both sides and trudging right along! The panda bear
that Garrett is hugging on one of them is a beanie baby!
Joshua
(Mother - Wendy)
My name
is Wendy Spivey. My husband and I are the proud parents of
Joshua, age 14, Jonathan, 14, and Julian, 15.
Joshua
was born on January 8, 1989. He was the second twin. It was
an awful night. I went into labor at 28 weeks and was fully
dilated by the time we reached the hospital. There was no
stopping these guys.
Jonathan
was born by natural delivery. Unfortunately, I had a placenta
abruptio, and the placenta blocked Joshua inside. 25 minutes
later, he was born by an emergency c-section.
During
the C-section, my heart and breathing stopped. I had to be
intubated, and didn't wake up until the next day
in intensive care. The twins had to be transported to an NICU about
1 and 1/2 hours away. Jonathan was placed in an oxy-hood
and Joshua had to be intubated. Jonathan weighed 3 and 1/2
pounds. Joshua weighed 3 pounds.
We
were later told that the sudden burst of oxygen from the intubation
had caused Joshua to have an Interventricular hemmorage (IVH
grade 3). CT scans showed Joshua to have less than half
of his brain tissue and extremely large ventricles, which
created hydrocephalus.
At
age 4 mos., Joshua had a shunt put in.
At
age 18 mos., he had a failure and had it replaced.
At
age 3 years, he had another failure and had it replaced
again.
(Since
that time...his shunt has been fine.)
At
age 6 months, we had a neurosurgeon tell us we should put
him in an institution. We didn't believe a thing the Doctor
said and made up our minds to help Joshua be the best he could
be. We started a journey forward and have never looked back
with any regrets.
Joshua
has had PT and OT since he was 6 months old. He had the shunts
as previously mentioned. He had a Selective Dorsal Rhyzotomy
at age 2. He then learned to crawl. Before that he had only
pulled himself around in combat fashion.
He
started to preschool in the Public School system at age 3
in a physically impaired class. By the time he got to Kindergarten,
I had him in a full inclusion classroom with a full time
personal assistant, getting all his PT and OT at school...Usually
twice weekly at 45 minutes each.
Joshua
is extremely verbal and it seems as though he always has been.
He began talking at an early age. His Cerebral Palsy manifests
itself in the form of physical mobility. He has spastic diplegia.
His upper body is in pretty good shape. He propels himself
independently in his wheelchair. He is very auditory. His
visual perception is lacking. He has great difficulty reading.
In fact, he’s in 8th grade and reads on a grade
equivalent of about 1.5. His listening comprehension and ability
to formulate answers is on grade level.
I
have fought the system many times….Joshua is presently receiving
5 hours per week of PT and 2 hours per week of OT. This is
a battle that will continue. The school is presently making
us go through re-evaluations, IEP meetings with their lawyer,
etc. etc.
Joshua
has had BOTOX, attended Euromed twice (Now he's learning to
walk with crutches), and HBOT, briefly. I would be happy to
discuss these ventures with anyone who is interested.
Laurel (Parents - Rochelle
and Bob)
My name's Rochelle Garwood, and my husband Bob and I have
a little girl named Laurel who was born 11/11/00. Laurel suffered
a hypoxic incident around the time of her birth (nobody is
exactly sure when) and is categorized as having mild to moderate
hypoxic ischemic encephalopathy. Secondary to that, she has
spastic quad CP, cortical vision impairment, has had infantile
spasms (almost 2 years seizure-free), and is fed by g-tube.
Laurel still doesn't quite sit independently, crawl, or talk,
but she keeps edging incrementally closer to
those things and she seems
to understand a great deal. We have done craniosacral therapy,
NACD (National Association for Child Development), and Feldenkrais
with her as well as the standard PT, OT, and ST and are always
interested in learning more about other treatment options.
Raeanne (Mother - Lisa)
Here is a pic for the contest of my daughter. This is shortly
after her
near-drowning accident. This is actually the day that we chose
to extubate
her. We took pictures because we were told that she would
not make it after
she was off of the ventilator. And She is still going strong.
Zachary
(Mother - Nikki)
Zachary is almost 7 months old and he is vent dependent 24/7,
trach, global brain injury, encephalomalacia, ventriculomegaly,
microcephaly and diaphragmatic palsy. The NG tube is for
venting only, he doesn't burp well but he takes all feeds by
mouth. All that aside, he is the light of my life.
|
