The diagnosed: Jessica, 3 with her mom Amanda
Jessica was born at 33.6
weeks. I was considered a high risk pregnancy because of some blood work that
came back showing that Jessica had a 1 in 77 chance of having Down’s Syndrome.
At 32 weeks, I showed signs of preeclampsia and was taken off work and placed
on modified bed rest. I spent 3 days in the hospital. They let me go home under
the guise that I would follow doctor’s orders and rest. I went back to see my
OB/GYN 4 days after being released from the hospital and she sent me back and
told me that I was staying until I gave birth at either 34 or 37 weeks.
That was a
Thursday and by Saturday, the on-call doctors made the decision to induce
because Jessica wasn’t performing when hooked up to the monitor. I was induced and chose a cesarean section because they
wanted to re-induce me but after going over 24 hours on IV Fluids and
ice-chips, I was in no condition to try a vaginal birth. In fact, I told the doctor
she was coming out and she was coming out tonight and that he wasn’t sticking the
cervidil back in me.
Jessica spent 3 weeks in
the NICU where she flourished. She did not have Down Syndrome and was given a clean
bill of health. At 7 months, Jessica was seen by a neurologist who ordered an MRI and eye exam. It was ordered because she though Jessica was
showing signs of strambismus (crossed eyes). Jessica’s eyes were fine but her MRI was not. I wasn't
shocked. It's like deep down I knew there was something off. There was always
the possibility that we knew she would have issues because of the blood work
while pregnant.
The MRI showed
signs of mild Periventricular Leukomalacia, which is a neurological condition where the white matter has decayed or died leaving empty areas in the brain resulting in lateral ventricles that fill with fluid or leukomalacia. PVL is a wait and see diagnosis and most children are eventually
diagnosed with Cerebral Palsy by 2 years old. Jessica is not one of those children.
She is now 3 and the only way you can tell she has something wrong is to watch her
walk. The part of the brain that is affected for her is the gross motor area.
We see a neurologist once a year and she sees an orthopedic specialist for her
abnormal gait.
At 14 months, Jessica had
to have her tongue clipped because she was tongue-tied. She had trouble even
getting her tongue to her teeth let alone stick it out. Once clipped we though
that she would start talking. We could not have been more wrong. At 22
months, we had her evaluated for CAS-Childhood Apraxia of Speech and were given
the diagnosis of Oral and Verbal Apraxia. Verbal Apraxia means that Jessica has trouble turning on her voice box to talk and Oral Apraxia means that she has trouble using her tongue and forming her mouth the right way to get sounds out. After fighting with the insurance, we
were finally able to get speech therapy covered. Jessica started private speech
therapy in February 2016 and by May was finally talking.
Her PVL has not
progressed as it is a disease that once the damage is done, it is done and you just wait to see how it affects you.
How does it affect your relationships?
I’m not gonna sugar coat
it, it is tough sometimes because you have to figure out how to spend time and
money, but my husband and I are stronger because of it. We knew that once we had
the diagnosis, we could not treat Jessica as if she was a fragile creature that
would break. We had to treat her as we would a child who did not have
disabilities. This has made Jessica into the person she is. She is very
strong-willed and will not accept no as an answer. She works hard to achieve
every little milestone. I am blessed to work at a preschool where they understand that my daughter has special needs and that I sometimes need to leave early or take
a day off to get her to all of her appointments.
What is one of the hardest parts of
living with this diagnosis that people may not expect?
I would have to say the
hardest part of the PVL diagnosis is not knowing the outcome. PVL is never
going to get better. My daughter may be in therapy for a long time working on her
walking and jumping abilities. Her normal is attending therapy on a weekly
basis. She may not get to play sports or dance if she wants to because of the
damage. It’s the waiting and seeing that sucks the most.
With the apraxia diagnosis,
we can see the progress that she is making. She has trouble with some sounds
but has come so far. Normal for her is speech 2-4 times a week.
What is an unexpectedly good part?
Seeing all the progress
that my Jessica is making. She struggles but doesn’t let it get to her. While
everyone is looking for a superhero, I am raising mine.
Are there certain places you just can’t
go and do you have any advice for how the world can be more inclusive?
I am blessed because I
don’t feel as if there is any place that my family cannot go.
When people try to comfort you, what is
the least comforting thing they say (even though it may come from a good, kind
place)?
What hurts are the looks
that people give when I tell them that she is a special needs child because they
don’t see the disability. It is not a visible disability that anyone can see
and you can only tell when Jessica is very tired that it is bothering her. The looks
of disbelief in people who don’t know my family or interact with us is
astounding.
What do you want others to know about
parenting/living with this diagnosis?
I don't treat Jessica as if she's broken. The disability is her normal and she is a normal child. I
hate that she is labeled special needs because of the diagnosis. She is normal
because her special needs are her normal. I do not treat her any different than
I would a child who does not have her needs. She has flourished and I believe
that is because we have taught her that she can do anything and be anything she
wants. I also believe that the reason we have continued to beat the odds and
not get a Cerebral Palsy diagnosis is because we have been so proactive in her therapies.
Do you have any resources you’d like to
share in order to spread awareness of/support for your diagnosis or condition?
This is my blog where I talk about the
random stuff—love, laughter, sadness-illness-of living with Jessica.
This is the PVL group and they have
been the biggest support in understanding what is going on with my child.
This is the Apraxia group and they have
been a huge help.
It is rough navigating
the world of an IEP--the Apraxia and PVL groups have helped me with them.
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