Thursday, June 27, 2013

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!

Tuesday, June 25, 2013


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

Saturday, June 15, 2013

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!!!

Wednesday, June 5, 2013

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.