Upon the 7th month of my pregnancy I
was very uncomfortable with Triston in the womb. My back was
always in much pain as something was always putting pressure on
my sciatic nerve. I could not be comfortable in any position and
did not get much sleep the last few months. It almost felt
as if Tristons feet were stuck up in my ribs.
My Doctor Induced labor for me 1 week
prior to our due date due to the pain I was having. After aprx.
8 hours of labor on 10/28/03 my sweet baby's life was gifted to
However, right away things did not go
so well. The cord had been wrapped around his neck twice. It was
to tight to lift so it had to be cut off.
Baby Triston was not behaving a
typical new born as he was very quite and would not cry. Not one
whimper. Not one sqweek. His breathing, due to the cord being
around his neck, was very slow and shallow. They examined him
immediately. He was born 6 lbs 3 oz, in the 3rd percentile. He
was just a tiny little peanut, but with so much hair you would
think he was wearing a toupee! it was very adorable.
Tristons breathing was not improving
nor was he any closer to crying. Soon after we then also
discovered he was not feeding (we elected to bottle feed) or
sucking on his own either, if you will. I could feel the
nervousness of all the staff within the room. I was still unable
to hold my new son for the first time.
While he was being examined I glanced
over to see the miracle of life I created and got very
frightened and began to scream & cry shouting "Oh no, oh no!
Look at his feet. Whats wrong, whats wrong?!"
Tristons feet were curved, deformed
if you will, in the opposite direction as you would find club
'It really had to have been those
tiny feet that were lodged up in my ribs for months', I was
thinking. 'No big deal, right, all he has to do is get some room
and stretch those suckers out and he would be just fine'...Just
fine...Just fine...Just a few minutes everyday, I am back in
that room with the ecco of those words running through me. 'Yes,
he will be just fine'. After that moment, the almighty power of
"Destiny", proof of that no matter how hard you wish, you can
not change what has already been written in the stars, shined
its unbeatable truth onto my life, in how I can only explain it
as a fog, because once it hit, I lost time, with wide open eyes.
At that point they had my son wrapped
up and took him right away to the NICU.
I felt so helpless and so alone in
the labor and delivery room with no baby in my arms.
Triston remained in the NICU for
about four hours until this breathing was stable and he was
sucking on the bottle on his own.
At long last I got to hold my
precious son, Triston. He was a miracle and a gift from God.
Triston did suck on his own, however
not very well though. He immediately preferred a specific kind
of nipple, that would later be with us for an entire year.
While in the hospital a pediatrician
came over right away to take a look at his feet. Indeed there
was a foot deformity and she recommended and referred us to an
Orthopedics when we got home.
In the mean time, Triston had a hard
time keeping his formula down and would spit up constantly.
Almost his whole feeding session so it appeared he didn't keep
anything in his tiny tummy.
We were still released from the
hospital on schedule
Unaware, we had just carried out a
child that would remain in Scientific Medical History forever.
Whats distressing is, looking back to this day - realilzing; so
were each and every Doctor.
The first year for Triston was very
very rough and my heart goes out to him for his perseverance.
The first year Triston did not eat well at all. We always had a
problem with keeping formula in him and getting him to burp.
Sleep was not a friend of his either. Triston did not sleep.
Almost as if he couldn't because something was bothering him as
he was very fussy and hard to comfort. He arched his back and
cried all the time.
Tristons Pediatrician realized a few
things were going on, but not just right away. At just weeks old
he was diagnosed with Chronic GO Reflux and was put on
Medication for an entire year. We also had to switch formula to
a non milk base. He went on Nuetramigen. Which worked well but
was so very expensive. We also had to prop Tristons crib
mattress up at an angle to help prevent acid from coming up. He
was sleeping a little bit once the Med's and new formula started
kicking in. But still overly fussy and not a lot of sleep. Maybe
"Just a fase" ... Maybe.... They kept telling us.
After months of evaluation on
Tristons feet with his Orthopedics Specialty Doctor, he was
diagnosed with a foot deformity called Congenital Bilateral
Abducto-Valgus, secondary to Congenital Vertical Talus Verus and
Oblique Talus. This - this - THIS, was not caused by feet being
lodged up in ribs. Where did 'this' come from? How? Could all
these things he was going through health wise be connected in
anyway? No one seemed to have that question then. No one.
At six months of age, both Tristons
feet were casted in hope to correct the direction of the bone
growth. The cast went from his toes all the way up to his upper
thigh. Mobility was just not an option until he got more
strength in his legs and learned how to maneuver in them. He
remained in the castings for nearly 6 months. Once the casts
were removed finally the Doctor felt the feet were starting to
go in the right direction and would then place him in Bilateral
Straight Last Shoes with a foot abduction bar similar to, but
slightly different from, those used for children with a club
foot, to promote the correct growing direction.
Due to the castings, when kids were
sitting up Triston was just rolling over. When they were
crawling he was sitting. Them walking him crawling. Triston did
not take his first step alone until he was 18 Mo. old. He was
very behind the rest of the children his age.
Really, Due to the castings, was 8
months of over looked, sever mental development growth,
disguised by the easy 'idea', "it was because of the casts". How
was anyone supposed to know this? God was not ready to release
his secret .. just yet.
He also was not growing as quickly
either which alarmed me later than soon. He also still had a
very very small head that was not even on the charts yet. At 6
months old, Triston was easily mistaken by others as a new born
He was not where he should have been
with babbling and head control, eye contact and so forth. Still
always crying and almost looking to be in pain all the time.
We had him re evaluated for this
constant fussiness. It was a finding by the doctor that Triston
had an ear infection in both ears, which had gone undetected all
this time because his ear canals were so tiny Doctors never
really could get a good look into them, just would send us home
saying "We'll get a better look at them next time, seems for now
to be ok".
So now along with "Maybe" we got to
add "O.K." to our vocabularty relating to our sons well being.
Once the infection was found, we got
some medication for him, had hopes for him to get better.
Instead, Triston was in and out of the Doctor every other week
for constant chronic double ear infections. Finally it was
decided by the Doctor that Triston was going to need sugary to
have PE tubes placed in his ears. It appeared his ear canals
were much smaller that what they should be, most likely causing
the longstanding history of Serous Otitis Media.
We thought finally we found the
solution to Tristons pain and crying.
We were anything but correct.
But, adding to our Medical
Professional list of Terms, "Most Likely".
Finally, out of my own pain of
watching my child suffer, I took him to Children's Hospital and
demanded they find out what was wrong with my baby. And if
anywhere in their explaination was; Maybe, O.K. or Most likely I
would devote the rest of my life making sure their Medcial
Rights to work as a health care professional would be revoked!
At this point he was emergently
diagnosed with Chronic Constipation. I don't know how we missed
that one. Poor little guy was placed on continuous powder med's
to elax his stools. With out the medication he would go days
with the constipation and pain. When time came to pass a stool
it would be so very painful for him and he would need our
assistance. His bottom has been so torn up because of this and
bleeds with passing stools. As a toddler, because of this,
Triston has hemorrhoids.
Things went well for the next month
or two with the crying, feeding and potting.
Still something was still not right.
I had the intuition of a mother. I watched my baby day and night
and started learning that he was not developing at the rate he
should be with further vocal skills. He could not understand the
same toys and concepts as others his age and he often just liked
to seclude himself.
Babies love to be held, sang too and
rocked. But not my Triston. I just wanted to hold him tight in
my arms and whisper to him that I was there for him and peacfuly
watch him fall alsleep, safe, in my arms. He would not let me
cuddle him, embrace him or rock him.
I felt I was failing as a mother - I
mean, how do you give security and comforting to a confused baby
that was in pain, when only attempting to cradle them, caused
more termatic out breaks. I didnt know how to help my child.
This is the weakest feeling I have ever known.
Around one and a half Triston was
still not talking, as a matter of fact the few words he had
picked up -went away. Almost as if he lost them. He was very
into the T. V. and was very particular what he ate. I noticed
that an average toddler would grab a hand full of peas at
feeding time and shove them in their mouth - Triston however,
picked one little pea up at a time and placed it in his mouth.
I could not believe it, but I at this
point knew I was seeing signs of a child with Autism. My family
kept telling me - NO NO NO you are imagining, stop worrying. As
all mothers reading this right now can say, you can never just
stop worrying about your child!
I kept on the Doctors and kept on
them, as they didn't want to listen to me and my year and a half
of concerns. Finally, when Triston was so far delayed in almost
everything posible - they finall saw what I could see.
Triston was referred the Early
Childhood Intervention in our local school district. There they
did a series of testing on him and gave him an educational
diagnosis of Autism Spectrum Disorder. At the same time, his
blood work was just coming back and showed a deletion in his
ninth Chromosome. We were referred to a Geneticist right away
for detailed study.
God finally set free his secret after
two long struggling years.
Tristons official Karyotype is
46,XY,del(9)(q31.2-q33.1). His chromosome disorder is so rare it
does not even have a name yet and he is the only child in the
world with it.
Over the last three years the
following are findings in Triston that relate to this disorder;
Microcephaly, Prominent Perivascular Spaces in both cerebral
hemispheres of the brain (most pronounced in the parietal
lobes), One Pituitary gland felt to be at the lower limits of
normal, Developmental Venous Anomaly in the cerebral hemisphere
of the heart, Disorder of communication, Bright Blue Iritides
with short palpebral fissures, prominent nose with a prominent
broad nasal bridge, short philtrum with a thin upper lip, high
arched palate (no evidence of clefting, normal uvula),
relatively small widely spaced teeth, prominent chin (no
micrognathia), posteriorly rotated ears (otherwise normally
formed), 1/4 systolic
ejection murmur that varies with respiration, hypoplasia of toe
nails, slight clinodactyly of 5th fingers bilaterally, simian
crease on the right, very little expressive speech, decreased
tone centrally but increased tone distally particularly at his
ankles, generally hypotonic, DD (substantial deficits in all
areas, language development, personal living, strength in gross
motor skills), PDD NOS, Autistic Spectrum Disorder, behavioral
syndrome NOS (elevation in somatic, withdrawn, attention
problems, aggressive behavior), clinically significant elevation
in areas of pervasive development problems, ADHD problems, &
oppositional defiant problems, borderline elevation in areas of
affective problems, scores less than or equal to 15th percentile
in vocabulary development.
Triston, at 6 years old today goes to
Special Education School 5 days a week and speech therapy 2 days
a week and OT. He is on his third set of PE Tubes in his hears
and can only say about 30 words in non sentence form. He was
just potty trained last year, where’s his own set of glasses and
has yet slept through the night.
Yet He laughs and plays like the
world is his oyster, and you know what - it really truly is.
In our lives we try every day to
protect our children to teach our children and to love our
Never once thinking that this whole
time it was Triston who taught me the most important thing that
I can never again live with out. And that is to have Faith.
As there is no prognosis, Cure, or
life span for my son and the future is unclear, we still close
our eyes each night with warmth in our heart.
A Doctor did not get us here, it was
by having Faith that carried us to this very moment, allowing me
to share with you fine people of the world, one more story, of
one more day, that I got to spend with my son, and see him smile
and brighten the world - just a little bit more than he did
His sister Kayla, 11, likes to call
him "T-T" and his Grandpa calls him "Bugzy". I call him.....
Thanks for taking the time to read
Chris mom to Tristan at firstname.lastname@example.org
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