Thank you for visiting and reading about Ashley's story. I wanted to start this blog to keep all my family and friends up to date on how Ashley has been doing and provide updates about her medical condition.
Ashley's journey started in 2006 at the age of 6 years old. It was
a normal day of weekly gymnastics when I looked up and saw Ashley
holding her neck and crying. In the weeks that followed, she struggled
with doing a simple task of running, laughing or coughing which caused
her a great deal of pain. After getting her into her pediatrician and
taking her for a MRI, we received a call a few days later that she has
what is called Chiari Malformation 1. Chiari Malformation is a somewhat
rare brain stem disorder that is a structural defect on the cerebellum.
In simple terms, the rear of her skull is too narrow and pushes the
brainstem too far into the spinal canal which blocks the flow of
cerebrospinal fluid and leads to a build up of pressure in her head.
were referred to a Neurologist & a Neurosurgeon to advise us on
Ashley's condition. Both doctors confirmed that she does have Chiari
Malformation1, but because of her young age, we should wait for a few
years to see how her brain & skull develops. In Ashley case, she has
grown up dealing with bad headaches and neck pain with almost any type
of physical activity. Since last September 2012 things have gotten
progressively worse. She has been dealing with serious chronic neck and
stomach pain every single day. Because of this pain, she is no longer
able to attend school and is on homebound program. She has lost contact
with most of her friends at school, which needless to say is very
difficult for a 12 yr old to manage!
Back in December 2012 we
had a consultation with 2 Neurosurgeons, and both agreed that the Chiari
has not really changed since age 6, and looking at both MRI's on a
screen, it is very clear to us that the problem is still there. Before
signing off on serious brain surgery, the Neurosurgeons wanted Ashley to
have a myriad of different test and procedures done as soon as possible
to see if any other other problems have manifested itself because of
the Chiari. Since that December consultation, Ashley has been thru all
types of different tests, x-rays, and clinical doctors visits. She is
currently on a twice weekly frequent physical therapy regimen to help
control some of the neck pain, bi-weekly visits to the pain management
doctors, and bi-weekly visits to a psychological advisor. It does
sometimes seem like we are spending half of our life at Cooks Children’s
Hospital in Fort Worth, TX.
One of the tests that the doctors
seemed to be very focused on is a swallowing study that Ashley had this
past March. To our dismay, she failed that test terribly. Due to the
nature of Chiari and it being a neurological disorder, it is causing
Ashley to “silent aspirate” every time she takes a drink. She can no
longer take a simple drink of any liquid without putting a gel in it to
thicken it up. In other words, she can not go to the faucet & get a
drink of water without this thickening agent. This in itself is
frightening to say the least, as this malady alone can cause many
potential life threatening problems. In early June, she will have a
sleep study done by a pulmonary surgeon to see if the swallowing has
manifested itself into her sleep. When this is completed, we go back to
Neurosurgeons to discuss the pros & cons of brain surgery.
web sites on Chiari Malformation1, will indicate that the only
effective treatment for this brain disorder is surgery! The surgery
itself is known to be very serious, with the potential for many serious
side effects. The financial costs for all this testing, has already been
more than most people can bear, but the costs for surgery,
rehabilitation etc. will be astronomical. Brandon & I have both been
weathering this storm, he has a hard working job for the Sparkletts
water company, but I have not been able to work since last September so
that I can give round the clock care to Ashley as well as our 4 year old
son Blake. As you can imagine, this has put us in some real financial
difficulties. So with all the emotional trauma and anxiety over these
past few months and years, and as we wait for the outcome of the final
testing, we keep our faith in God that he will guide us to make the
right decision to do what is best for our daughter Ashley!
Needless to say we are going thru some pretty tough times these days, and we ask for
your prayers that the mercy of God shines down on my wonderful sweet child. She
has been a real trooper during this ordeal, but she still has a long way to go!
Asking for your prayers, and thanks for listening!
May God Bless!
Brandon, Laurie, Ashley & Blake Owen