Nikki's
Story
On
August 22, 1998 an angel came to live with our family, her name is
Nicole . She is the most beautiful child with curly red hair,
big blue eyes and the longest eyelashes around! Nikki is the most loving
and caring person and never has a bad thought of anyone or anything. She
truly is a gift from GOD! Nikki was voluntarily placed with us by her
birth mother, and we were able to adopt her in March of 2000.
Nicole
was born on May 21, 1998 to a single mother, who had no history of drug
use and very rare alcohol use. Shortly after birth came the diagnosis of
Hydranencephaly. We were told that Hydranencephaly is caused by a stroke
that happens for unknown reasons while in utero. Typically children with
this defect are stillborn or die shortly after birth. The prognosis for
Hydranencephalics is grim, but GOD has plans for Nikki!
Nicole
has been through a lot in her 2 ½ short years, she has had 6 major
surgeries and numerous testings that almost always require anesthesia.
This is always a very uneasy time for us, her family, and she has always
been a real trooper through it all! We live in the small town of
Clearwater, which is located in the North Central part of Nebraska, we
are a little over 3 hours from Omaha. Since Nicole is a poor traveler
and we live so far from Omaha, we generally try to make all of our
doctor appointments within a few days. WE are lucky enough to have a
wonderful social worker, who let us know that there was a place that we can stay while
we are in Omaha at Children’s Hospital and Clinic, the name of the
house is The Rainbow House. The managers’ name is M. M.
goes above and beyond the call of duty to make each and every one of her
guests feel comfortable, and she never asks for anything in return! Last
spring we were scheduled for surgery the day after Nikki’s birthday,
and I was upset that we would be unable to have a party for her on her
birthday, well let me tell you, when M. found out that it was
Nikki’s birthday she set herself into motion and we had one of the
best birthdays to date. You see when you live with a chronically ill
child you typically don’t look too far into the future, you live day
to day, this is why it is so important to us to “make a big deal”
our of Nikki’s birthdays.
Over
the years I have had many people make comments as to Nikki’s
condition, some as meaningless as “why would you want a child like
her?” which shouldn’t even be justified by an answer. However, I
always answer those type of comments with, “Doesn’t every child
deserve someone to love them?” Most people will just step back and
stare, generally not coming within touching distance, almost as though
they are afraid that they will catch what she has. And yet there are
others that feel “children like those” should not be schooled,
should be left in institutions, to die, alone…and then there are those
few who have compassion and will touch and talk to Nikki, and she really
enjoys those times.
We
are a very busy family and every Sunday you will find Nikki in her
purple wheelchair in the front row of church, smiling, cooing, quietly
watching and sometimes patiently waiting for the next hymn to begin. If
she feels that a hymn was not long enough, she will sometimes shout out
“MORE”! As you can probably surmise, Nikki loves music! Nikki has a
speech therapist who works with her in our home once weekly and they are
currently working with her to use Big Mack switches to make her needs be
known, even though she has a vocabulary of about 6 words! But, what
matters most is that she has learned to say “momma”! We have also
adapted a computer keyboard for her to use with pre-school programs that
require a one key response. Nikki also has a home-bound teacher that
visits her twice a week and she attends center base weekly. Twice
weekly, we travel one hour each way, to Norfolk for Physical and
Occupational Therapies. Nikki has made tremendous progress in the last
year.
Because Nikki does not use the muscles in her arms and legs like most
children her age, they tense up and cause her pain, so she has recently
started taking Klonapin to help her muscles relax. Nikki will probably
never sit up, crawl or walk by herself, but with assistance does things
that we were once told “she would never do”. WE know that Nikki has
perfect hearing and has cortical visual impairment. She is legally
blind.
There
are many things that Nikki can do that we were once told that she never
would, she can breathe, swallow, eat, move her arms and kick her legs,
roll over and interact. She has a personality, knows what she wants,
when she wants it and how it is to be done! Nikki truly is a miracle!
There are obviously things that she cannot do, but as we see it, she
gets by fine without them. We have always said that we we’ll do things
for Nikki, but not to her, that is, there comes a time when enough is
enough.
Nikki
eats solids and takes sips of liquids, she even uses a sippy cup!
Because she is unable to drink an adequate amount of liquid we were
encouraged to have a feeding tube placed. We had this done when she was
18 months old. Placing the feeding tube was the hardest decision that we
have had to make, yet it was the best thing that we could have done for
her. She is now rarely at risk for dehydration, even when sick, she can
still get her liquids, not to mention that there is no question as to
how much medicine has actually been swallowed! Nikki is rarely sick, but
at any time her temperature can go from normal (98.6)to as high as 104.
The hot weather is especially hard on her as she cannot sweat which
makes it hard for her to cool down. Visa versa, in cold weather, she has
a hard time warming up, so it is important that she id dressed properly
in all types of weather.
We
provide all of Nikki’s care. She receives respite/day care about 20
hour a week. I am trying to maintain my job, but it is becoming more and
more difficult. Rich farms and milks cows for a neighbor to help pay the
bills. I wish there was more that I could do to help him out, but the
older that Nikki becomes, the harder it is to care for her without help.
WE have recently become involved with a home health agency and are
praying that we will receive nursing help a few hours a week.
February
2002:
In
January 2001, Nikki had another surgery; bilateral femoral osteotomies.
This will, hopefully keep her free of pain and allow her full range of
motion of her hips, and not allow them to dislocate. Ear tubes were also
replaced that following February 14th.
We
have started Nikki in Preschool, 3 ½ days per week. She really enjoys
the interaction that she has with her peers. This also allows for PT, OT
and speech to work with her at school eliminating the 2 hour drive twice
weekly from my schedule! Nikki also involved in the S.M.I.L.E. program.
This is a therapeutic horseback riding program that teaches challenged
individuals how to care for and ride equine. She really enjoys the
volunteers and her pony “Sparky”. Not to mention her relationship
with the program director! Nikki is gaining strength in her upper
body and neck from riding and she is up to 45 minutes on the pony!
Nikki
is fed mainly through her g-tube, but does eat some by mouth and gets a
lot of pleasure from the different tastes and textures that go along
with it. She takes only 24 ounces of Pediasure a day, with no water
flushes. She cannot take the extra water as her stomach will only hold 2
oz. at a feeding. So she is fed every 3 hours during the day and pump
fed at a rate of 40cc an hour through the night. You would think that on
this amount of intake that she could not possibly grow, but grow she
has! She has outgrown all of her equipment, her wheelchair, stander, and
micro shell, all within the last 6 months!
We
have no respite care, as we cannot find appropriate care for her, but we
just recently got approved for 12 hours a week of nursing care in our
home. I have had to resign from my job as a LPN-C shortly after
Nikki’s hip surgery because we could not find care for her while I was
working, but I do not regret that decision. As I have said before, Nikki
is my life, and I love being a stay at home mom to her and I feel
honored to be able to do that.
August
2002
In June, Nikki had the metal brackets taken out of her hips and she is
doing great! What at one time was a scary decision, turned out to be one
of the best decisions that we could have made! She just flew through
surgery and recovered and was dismissed from the hospital within 24
hours! In July we underwent ear tubes for the 3rd time, and her hearing
seems to be improving. And in August our long awaited visit with a
Rays of Sunshine family from Chicago came true! We spent a couple of
days in Colorado with Daniel and Nancy and family. The kids had a great
time and it was amazing how they somehow seemed to know that they were
very much alike. We have some great memories and photos and can't wait
to go back and visit next spring!
The
future is still unknown for Nikki, but we have come a long way from the
day we were told “take her home and lover her, but don’t let
yourselves get too attached, she will probably die within a few
months”.
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