On Tuesday I gave a speech about Stella and her journey thus far, with an emphasis on PT and the Early Intervention program in our county. Early Intervention or "Birth to 3" is a program for kids, some with a clear diagnosis, like Stella, or for kids without a dignosis that are showing a delay in an area of development. Stella qualified automatically for the program, given her diagnosis of Spina Bifida.
A few times a year the staff at her therapy center meet with others in the community that are involved with young children that have either a developmental delay/disability. I spoke in front of maybe 20 women, the only man there was Sam :) They meet about all sorts of topics but open up a time slot for parents to speak about their expiernces with the center. I cried the first time reading it to Sam, but thought I would be OK when it was time for me to speak. But when it was time to speak, I couldn't even make it through the first sentence without the tears starting! If you speak to any parent that has gotten a prenatel diagnosis, it doesn't matter how long ago it was, it is hard to talk about. I still, probably once a day think about what it was like for Sam and I when we found out Stella had Spina Bifida. Hard times.
I made it though my speech, stopping a few times to catch my breath and wipe my tears away. Stella wanted me to hold her so I held her the whole time! It was such a wonderful group of people to speak to and I am really glad I did it. Here it is!!
September 26th, 2012 was a
great day for our family. We found out during my 19 week ultrasound,
that our third child was a little girl. We already had 2 boys, and
were estastic to find out they were going to have a little sister. We
were absolutely shocked when the following morning, my midwife called
me to tell me some abnormalities were found in our unborn childs
brain. The next few weeks were a blur.We were immediatly sent to a
High Risk OBGYN in Everett for further testing. After a handful of
ultrasounds, blood work, and an amniocentesis, were were told our
child had an open neural tube defect, myelomeningocele. Or, what is
also known as Spina Bifida. Her spine had formed down to her lower
Lumbar and upper Sacrum region, where it eventually malformed
causing an opening in the skin. The malformation of the spine caused
excessive spinal fluid to collect in her brain, a condition known as
Hydrocephalus. She was also diagnosed with Chiari Malformation, which
means a downward tugging of the brain stem. We were told she needed
immediate surgery, within 48 hours of birth, to close the opening in
her back. She might also have needed a shunt to drain the excessive
fluid. A shunt is a internal valve in the ventricle of the brain that
is connected to internal tubing that runs from the brain to the
abdomen. It helps with the flow of spinal fluid. We were told since
the spinal defect was low she had a good chance of walking, though
most likely with assistance, and that all children born with Spina
Bifida had issues with bladder and bowel control.
On February 6th 2012, my
27th birthday, Stella Joy Abraham was born by cesarian
section at the University of Washington Medical Center. She was sent
immediately down the street to Seattle Children's Hospital, where at
20 hours old she underwent major surgery to close the opening in her
back. This surgery does not fix the defect, but is necessary to
reduce the risk of infection. She spent 11 days in the hospital.
While there, my husband and I learned how to catheterize her bladder,
change the dressing on her incision, and what we should expect the
first year. She was so fragile, this 7 pound newborn baby, but she
had the spirit of a champion fighter. She was off pain medication
within days of her surgery and her Hydrocephalus was stable, so
surgery for a shunt wasn't needed at his point.
Before she was even a month old, we
were contacted by Ann Marie, at the Whatcom Center for Early
Learning, to start the process for her Physical Therapy. We had met
with Physical Therapists during our initial hospital stay who taught
us different stretches to do with her but knew we needed to start
formal PT right away. She had very little movement in her legs, they
were stiff and hyper extended. Ann Marie made all the arrangements
around us. She came to our house and was patient while Stellas big
brothers played and we cared for a newborn. We talked candidly about
our family and what is important to us. After a few visits we had an
Individual Family Service Plan made. We eventually did a physical
assessment, and we found she had an obvious gross motor delay. This
was expected considering the nerve damage in her spine that causes
her weakened legs.
I had never heard of in home Physical
Therapy. I thought we would be going to a therapy center to receive
our services. Ann Marie explained how beneficial in-home PT is. How
teaching children in their natural environment and in their comfort
zone helps them reach their maximum potential. Also, it was helpful
since we had 2 older children and on days that my husband was at
work, our boys could go play in their room while we were meeting.
By the time Stella was 2 months old we
were starting our therapy. We worked on tummy time and stretches to
do with her. She was so little at this point, sometimes only nursing
and sleeping through it. We also talked about, and were offered
other resources in the community such as the Parent 2 Parent support
groups.
Around 6 months old, Stella was
starting to roll over and was attempting to sit up, unassisted. We
started working with a new therapist, Alis, and changed our every
other week appointment to once a week. I felt like this was a
critical time in her development. Her legs were relaxing and she was
showing she had feeling lower in her legs then we had expected. Her
feet and ankles still had very little sensation but her hips were
getting stronger. Once we switched to PT every week, we saw her
development blossom. She started sitting unassisted and eventually
started army crawling. By 9 months old, she was ready for her first
set of Ankle Foot Orthodics. Alis contacted Stella's doctor for the
prescription, wrote a letter of medical need for insurance, and came
with us to her appointment to be fitted. At this appointment, our
daughter tried to stand for the first time. Alis brought over a
standing frame for her to learn to bear weight. I credit this piece
of equipment, probably from the 1970's, with strengthening her legs.
She stands up in it and is secured into it and can play with toys in
the tray or eat a snack. Our couch has been one of her main therapy
tools. It is the perfect height for her to stand at and
independently learn to bear weight.
One of the tools that I love is the
AEPS. Every 3 months we sit down and do an assessment of Stella's
skills. I like evaluating not only her gross motor but all areas of
her development. She always shows growth in each area, especially
scoring high in the communication and social areas. We always have
goals set – short and long term. We periodically discuss these
goals to see which she have met and how we can help her reach the
ones she has not.
At 13 months old, we were blindsided a
bit by her Neurosurgeon deciding it was time to intervene regarding
her Hydrocephalus. Her head circumference was going up and we were
seeing some swelling on her lower back, indicating that spinal fluid
was still not flowing properly. She thought Stella would be a good
candidate for an ETV – an Endoscopic Third Ventriculostomy. They
would enter her brain and puncture a new hole in her ventricle, to
allow for spinal fluid to flow more freely. This sounds scary and
extreme, but if this was not offered then she would of needed a
shunt. Shunts save lives but have 100% chance of needing at least one
revision. Her ETV was performed seamlessly, she needed only 1 night
in the hospital. As of her MRI last month, it seems to be working
perfectly. Now that her hair has grown back, you can barely see the
scar from the surgery.
In April we started a whole new
journey in the Whatcom Center. A spot opened up for the weekly
playgroup. It is an amazing opportunity for Stella to interact with
kids her own age. I love the structure of play time, songs, and
snack time. Every week I see her come more and more out of her
shell. She is starting to initiate play with others. This is also a
great time for myself to talk to other parents. We have such
supportive family and friends but don't know many people who have a
special needs child. The parents I talk to at playgroup understand
what it's like to watch your child be poked and prodded by numerous
doctors. They understand what it's like to be your child's advocate
and work to show the world your child will not be defined by a
diagnosis. Playgroup has become a priceless aspect for Stella's
continued growth.
Whatcom Center has helped make therapy
become a way of life for us. Alis not only works hands on with Stella
but teaches us what we can do to help her flourish. In that 1 hour a
week we meet, she answers any questions we have. She is a great
resource for sign language, games to play to enhance fine motor
skills, and ways we encourage speech. She gives us the tools we needs
to give Stella every opportunity to thrive and explore. We always
discuss upcoming doctor appointments and her general health. There is
never a time when therapy is over and I have unanswered questions.
Alis recently brought over a walker
for Stella. She is starting to warm up to it a bit and will put her
hands on it. She quietly studies and explores it. It's exciting to
know that we are working on her walking. We have accepted the fact
that no one has a crystal ball to see exactly what Stellas future
mobility will look like. Braces, Walkers, Crutches, and Wheelchairs.
They used to be intimidating but now we look at all of these as tools
to help our child experience life just like everyone else.
Currently, at 16 months old, Stella is
a very typical toddler. She is feisty and funny. She absolutely glows
when her brothers are around. She is opinionated and wants
independence to explore our home. Just because she is not walking,
does not make her any different then any other child her age. The
staff at Whatcom Center treat our child as if she is their own. We
are greeted with nothing less then a warm welcome. Having this
support for our family is absolutely invaluable. I feel like we have
these people on our team that will do whatever they can to assist
Stella and our family. For that, I will be forever grateful.
