Insurance said they would pay for nothing. That he is not BAD enough to be going to NY. I can not EXPLAIN how UPSET we are. We are fighting right now with the insurance and Dr. Update later. Leaving for Dallas.
Chiari Malformation (pronounced key-ARE-ee) is a condition in which brain tissue protrudes into your spinal canal. It occurs when part of your skull is abnormally small or misshaped, pressing on your brain and forcing it downward.
In July 2008 Wesley was diagnosed with Chiari Malformation, a rare brain disease. He had decompression brain surgery in July 2008. In August 2008 he had a complication from the surgery and had to have a shunt placed in his brain. He has had four shunt revisions and then the shunt removed. After a year of being very sick the shunt was placed back in his brain and he will not be able to live without it. He has been in the ER more then we can count and has had countless other procedures done. Our seven year old daughter Kyra has Chiari as well; but at present time it is Mild. We have faith in God and we open our hearts to God's plan as we know he will take care of our family. Thank you for visiting our blog and praying for our family.