Sunday, May 5, 2013

Welcome to The Ashley Owen Story

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.

We 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.

Most 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

1 comment:

  1. Another thing to add to this...she's such a trooper and still holding STRAIGHT A's thru all this. She's such a smart young lady! God is good! Love you all!
    Jesica Allsup-Renteria