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Tommy
Is Legally Blind
And No Child Has More Love Of Life
By Darlene Almer
.I believe in miracles! My proof is my son,
Tommy, born at 25 weeks gestation, weighing 1 pound 11 1/2 ounces and
13 long. He was born by emergency C-Section due to premature labor that
progressed beyond the point of no return. The day before he was born,
I’d had an ultrasound and been given a DUE date of September 20 -- his
BIRTH date was June 10, 1992.
After a 2 day separation from him, my husband, Jim and I followed the
route the NICU (Neonatal Intensive Care Unit) ambulance crew had taken
to Emanuel Hospital in Portland to meet our tiny son. Before entering
the NICU, we had to scrub and gown up as if we were doctors. The hospital
family liaison led us to the glass sided bed in which Tommy lay. Tears
sprang immediately to my eyes as I saw him for the first time--so tiny
and frail with respirator tubes weighing his little head own, minute IV
lines running from a row of syringes holding the tiny amounts of fluid
being infused into his body. There was a tiny feeding tube, an oxygen
saturation light taped on his foot, a heater to help maintain his body
temperature above the bed and monitors beeping and glowing nearby. They
told me his total blood volume was only 4 tablespoons in his entire body.
As I gazed at his precious little body, I spoke and he raised his eyebrows.
A nurse said, "Oh look! He knows his Mommy’s voice." And tears
ran more freely down my cheeks.
I remember other milestones vividly: finally holding him, respirator
tubes and all, at 8 days, finally catching a glimpse of his sweet face
without tubes and wires and finally hearing his first cry at one month,
nursing him for the first time at two months, giving him his first bath
by myself at 10 weeks. I was to repeat the NICU process and travel that
road daily for the next 11 weeks, ripping my heart out each time I had
to leave my baby there and go home without him. Thank heaven for the compassionate
NICU nurses who kept assuring me how normal I was behaving!
Tommy was very strong and more developed internally than he should have
been, so he had a much smoother NICU course than most babies his size.
He grew rapidly and after a couple of setbacks, came home on August 25,
1992 --- four weeks before he was due.
Babies born at such low birthweight, in addition to many other complications,
risk an eye condition called Retinopathy of Prematurity (ROP) where the
blood vessels in the eye stop normal development and begin growing wildly
which can cause glaucoma, retinal hemorrhaging, blindness and other things
no child should have to be faced with. Well, after being home for a month,
Tommy’s routine eye check showed he had “plus stage ROP in both eyes and
needed surgery ASAP (as soon as possible). We were sent to Casey Eye Institute,
a part of OHSU and within a couple of days, I handed over my 7 pound son
to the care of surgeons and anesthesiologists, hoping they could save
his eyesight.
On Post Op. check up, it was found that scar tissue has formed and was
contracting, pulling Tommy’s retinas loose. As Dr. Robertson told me his
findings and said he wanted to try to reattach the retinas with more surgery,
I felt faint and had to ask him to take my son so I wouldn't drop him.
This just was NOT fair that this child had already gone through so much
in his short little life and now there was to be more.
A few days later, 2 more surgeries were performed with the end result
being unsuccessful reattachment in the right eye and successful in the
left eye. There is a fold through the macula (where central vision occurs)
in that left eye, so Tommy has only a partial field of vision there and
is also very nearsighted in that eye. Light perception remains in the
right eye.
We were fortunate in having Early Intervention Services from the time
Tommy was 7 months old. They taught me how to teach a child who is visually
impaired how to do the things most children learn by watching -- how to
roll over, crawl, walk and so much other stuff. Approximately 95% of learning
is visual, so you can see what a challenge our family faced. Head Start
preschool, a 2 year stint, was also extremely beneficial. Today, Tommy
is 6 and entering 1st Grade. He will be in a regular classroom with support
from the School District Vision staff. He'll be learning Braille and keyboarding
to do his work. We have been blessed with a wonderful Teacher of the Visually
Impaired, Patricia Kelley, who has such a dedication to and love of the
children she is involved with, he can't help but have a successful experience
in school. She has been a godsend to us.
Though Tommy is legally blind, I know of no other child with more love
of life. He is a very visual visually impaired child who uses every bit
of sight he has. His attention to and interest in details amazes me. No
one can identify year and make of cars, real or toy, like this kid! His
cognitive skills are way beyond his age, his memory like an elephant's
and his logic sometimes scares me - it is so advanced for his years. There
is no limit on the possibilities for this child -- my angel and miracle
-- Tommy Almer! I am so proud to be his Mother.
Copyright © 1998 Darlene Almer
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