The story of Jodi
How do I describe my daughter?
Strong, happy, head strong, stubborn and a fighter.
My daughter was born in October 2007 and from the moment she was born and had her first bottle of milk I knew something wasn’t right. My daughter would SOAK through bibs at every feeding because she wasn’t swallowing her milk.
Then she missed milestones, MONTHS of struggling to get her to crawl and walk, to babble and then talk.
Then potty training time hit and she would get UTI after UTI.
Always a fussy child that nothing would help the doctors diagnosed her with colic.
Potty training the doctors just said she needed more time, or I needed to be on top of her more.
Not meeting milestones the doctors would say shes taking her time, just let her develop at her own rate.
As a mom of an older child who didn’t have any ‘issues’ I decided that maybe I was overreacting.
There is nothing wrong with my beautiful child.
Boy was I wrong!
On my daughter’s visit to the pediatrician for another UTI the doctor was concerned as her colon was extremely swollen with stool. Well it is true my daughter was never able to go poop without assistance.
Doctor ordered tests on her bladder saying that if her bladder is malfunctioning then her bowels would follow suit.
We were sent to a urologist who ordered a slew of tests from MRIs to Urodynamic tests to Nerve testing.
In March of 2012 we found out on the urodynamics study that my daughter was suffering from a condition called Neurogenic Bladder and Bowel. It explained the frequent UTIs and stool retention and chronic constipation.
The next step was to go for an MRI to find out WHY she has developed this condition.
In April of 2012 my daughter had an MRI done of her full spine.
That day changed my life!
The same day as the MRI we got a call from the urologist office saying my daughter needed to see a neurosurgeon right away.
As a Mother my heart dropped.
The doctor couldn’t tell me whats wrong, that I just needed to contact this neurosurgeon today for a consult.
I called the neurosurgeons office and heard the words that would change my daughter and my family’s life forever.
CHIARI MALFORMATION.
Chiari Malformation is where the cerebellum tonsils descend outside of the skull and puts pressure on the spinal column.
My daughter’s brain was too big for her head.
During our first consultation with the neurosurgeon we heard the words brain surgery, spine surgery. Life long disability.
Nerve damage, Developmental Delays and NO CURE!
My heart broke.
In 2 short months my 5 year old daughter was in surgery for tethered spinal cord, in 3 months my daughter was in surgery to correct her Chiari Malformation, in 2 short years my daughter had a tube placed in her bowels to allow us to control her chronic constipation.
In 3 short years my daughter has had bladder surgery and upcoming in Summer of 2016 my daughter will have bladder reconstruction suirgery.
All because of those 2 words Chiari Malformation, my daughter has had to endure 6 surgeries, many medical treatments, poking and prodding of needles, emotional therapy for medically induced PTSD.
Yet, through it all my daughter has never let a day go by without smiling. She is strength in my eyes. She lives with chronic pain everyday and never lets it get her down.
She is wonderful.. she is strong.. she is Aubrey!