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!!!!!