Update on Ashley

It's been awhile since I posted an update but we have been waiting to hear back from the Neurosurgeon. I talked at great length a couple of weeks ago with the head Neurosurgeon that has been handling Ashley's Chiari Malformation case and he said after conferring with several other pediatric neurosurgeons at a recent Pediatric Neurosurgeons Conference last month, they all agreed that he should wait on deciding to do her brain surgery for the time being as they all think that Ashley's case is so complex that surgery may cause more problems than exist right now. He wants to watch her condition for a few more months, and see what other neurological problems develop. Then they will run all the testing again to see what has developed with the swallowing, breathing, and pain issues that have plagued her life for months now. His thoughts are there is no "cure" for Chiari and until he is confident that he can go in and make her well, we are still once again in a holding pattern and will face all the necessary testing over again.

Ashley has been a real fighter as she continues to deal with the this terrible affliction! She still cannot go to school, and is taking an on line school course to help keep her up to speed on her grade level. It is a very rigorous study program, but she continues to handle the load even with the head & neck pain. She still has to put a thickening gel in everything she drinks and we are waiting to get back into the pulmonologist about her sleep apnea. She has had some "good" days the past month or so, and continues to battle this debilitating brain disorder.

So we ask you to please continue the prayers for Ashley as we continue to deal with the hand that's been dealt to her. If you need any other info please let us know. Thanks for being one of "Ashley's Angels", & again many thanks for all your prayers & contributions! We will be forever in your debt!!!!!

Quick Update

It's been a while since our last update, but we are still waiting to hear from the Neurosurgeon, so there is nothing new to report. We are expecting to hear something within the next few weeks since he is meeting with other Neurosurgeons this month to discuss Ashley's situation. Adjusting to online school has been very rough because it seems the workload is doubled versus going to school, but she is still remaining as positive as she can be. We are so blessed to have all of you in our lives, and I cannot say it enough so THANK YOU for your love, support and generosity. Each one of you are Ashley's Angels!
 We will make another update when we hear from the doctor.

New drawing by Ashley 2013

2nd Swallow test

They worked Ashley in today for her swallow study. We were hoping after 6 months of being on the nasty gel thickener in her drinks that it would have retrained her swallowing not to aspirate but unfortunately she still had some aspiration with every sip she took. However, it wasn't as much liquid going down the wrong tube as back in February so that was somewhat better. They want her to stay on the thickener for another 3 months then they will bring her in for another swallow test to see how it is then. Ash was bummed but won't let it get her down. She will go see the GI dr on the 19th and we will still be in contact with the Neurosurgeon through all the testing.

Update on the long awaited Neurosurgeon appointment today

We met again this morning with the chief Neurosurgeon at Cooks Children's Hospital in Ft. Worth, TX to discuss again the plan for treating Ashley's brain disorder. We didn't get an immediate answer on Decompression Brain Surgery, as he wants again to talk to a couple more doctors on Ashley's swallowing & breathing issues. Seems that she has a complex & isolated case of Chiari Malformation, and he is quite deliberate in exhausting all the issues before going forward with brain surgery. The swallowing issue is a serious one, as Ashley can longer drink any type of fluid without having a thickening agent put in it first. Dr.Donahue did say that Ashley is probably going to have to have this operation, but because of the seriousness of this type of brain surgery he wants to make sure it is the best treatment option, and the option that will solve all her problems. Needless to say the anxiety continues on for a couple more weeks. For a 12 year old young girl, Ashley has been an absolute "trooper" thru this "gut wrenching" ordeal that has been going on for months & months. Our donation campaign has had some great success,but we have only just begun!!!! For those of you who donated to Ashley's Fund, we offer our heartfelt thanks! For those of you that have offered prayers & kind thoughts, we offer our heartfelt thanks! If you are just being made aware of this donation campaign, we would ask you to become one of "Ashley's Angels" !!!!!!

Family Reunion 2013- Golf Tournament- Putts For Ashley

What a wonderful weekend this has been. I want to again THANK everyone for their love, support, prayers and donations for our family as we fight Ashley's battle against her Chiari Malformation. There aren't enough words I can say to express how thankful we are and I love each and everyone of you!!!! A million times over thanks to all!!!!!! You all are truly Ashley's Angels!!!

Commemorative chip/medallion designed by Ashley

This is Jerry (Ashley's Grand Dad)----

Some exciting news that will help our fundraising efforts. I am having a special custom made commemorative chip/medallion manufactured that features a couple of Ashley's drawings. These 2 prints will become our special logos to be used on all types of campaign items, such as shirts, wrist bands etc. Starting today, one these will be given to anyone that contributes a minimum of $20.00 to Ashley's Fund. This chip will have an intrinsic long term collector value due to a limited production, & will be especially enjoyed by all of my gaming collector friends! So if your are interested, please post a comment & I will get back to you ASAP! The 14th Annual Maassen Golf Tournament on 7/13/13 is shaping up to be a tremendous fund raising event for Ashley's Fund! Thanks to all of you for your generous donations & on going prayers. See you soon in St. Louis!

:(

Wishing all days were good!!! Today is not one of them for Ashley:( Taking it day by day is all we can do.

Late night thoughts from Mom

It is getting late on this Saturday night and of course I can't fall asleep because my mind just won't turn off. I just hate what my baby girl is going through. It breaks my heart into a thousand pieces and I would give anything to trade places with her in a split second. This was the first full week off of school for summer break and even though Ash has been at home for months, she still worked her tail off with keeping up with school work and was so looking forward to this summer. So far everyday this week, Ashley has been in pain and doesn't feel good to do anything. This just isn't fair!!!!!! She just wants so bad to start feeling better and as her mom, it is the worst feeling in the world to not be able to do anything to take pain away. I know God gave her this battle for a reason but I have yet to understand why. I keep praying that she will wake up each day and feel a little better then the day before but so far that is not happening. Everyday, I put on a brave face for her when deep down I just want to scream at the top of my lungs to take her Chiari away!!!
Thank you all again so very much for all of your thoughts and prayers for her and our family. One day WE WILL WIN THE BATTLE OVER CHIARI!! WE WILL WIN!!! WE WILL WIN!!! WE WILL WIN!!!

Dr's appointment update

Went to Cooks today to see the pain doctor. Ash is going to try a different pain med as the one she was taking didn't help and made her feel yucky. After that appointment, she did a bio-feed back test. Hooked up to wires and watching a computer screen, it measures the amount of tension, stress and pain that someone is experiencing. When he first began the test, her spikes were off the chart which just verified to the Dr she has some serious neck pain going on. Although after a few month of physical therapy which helped bring her pain level down from about a 10 to a 5 or 6, when the test started Ashley said her pain was about a 5. Once the test was complete it took it down even further to about a 3. She has over the next month 3 more sessions to do and these test will teach her techniques to use here at home for her to try and manage the pain better. Her pain level as of now is back to about a 5, but I am thankful she was able to complete this first round of testing and it gave her a few hrs at a lower pain level.

YUCK-Pain

Needing to vent- I just wish this pain would go away so Ashley can feel better! Not a good day for her:(

Ashley's drawings

Junior National Honor Society Induction

Ashley is officially a member of the Junior Honor Society.She is receiving her award in the picture. The lighting was bad of course!! So proud of your hard work and determination in everything you do Ashley. We love you!!

Sleep Study picture and results

Ashley went in for a sleep study last week and we met with the doctor a few days ago for the results. Her lung capacity and oxygen levels are good and a big sigh of relief came over me until the Dr said but... it turns out Ashley had several periods of sleep apnea where she stopped breathing and the concern now is for those periods where she stopped breathing, each one lasted 40 seconds and that is dangerous. This along with her aspiration condition is not a good mix. Ashley's next neurosurgeon appt isn't until July 29th, but the lung Dr was going to call the Neurosurgeon to have us worked in quickly so we can find out if Ashley will have decompression brain surgery. Thank you again for your support and prayers. I cannot even put into words how much that means to our family!! Below is a picture of Ashley all hooked up at the sleep study.

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