Monday, June 28, 2010


Thank you for visiting! Just wanted to recap what this blog is about. Our daughter Madison was diagnosed in February 2010 with Chiari 1 Malformation.

Chiari Malformation is a congenital condition in which the lowest lying portion of the back of the brain is crowded out of its normal place inside the skull. These downwardly displaced structure, the cerebellar tonsils, can compress parts of the brain stem or upper spinal cord and block the normal flow of spinal fluid into and out of the head. There are many symptoms associated with this condition. Madison's symptoms are mainly headaches, but she also suffers from dizziness and clumsiness. Her symptoms seem to get worse when she is engaged in vigorous activity. We try to limit things that we know cause her symptoms, but we want her to be able to live life to the fullest.

Since February Madison has had a CT Scan and 2 MRIs and will need another MRI soon. She was diagnosed in the Emergency Room at Wilford Hall Medical Center on Lackland AFB, where we live. She was then sent out in town to Christus Santa Rosa Children's Hospital to see a pediatric neurosurgeon who confirmed the diagnosis and recommended surgery. Although we completely trusted her, we just felt a 2nd opinion was needed. We just couldn't let someone cut our baby girl's head open. After a long fight with our insurance company, we went to visit Dr. Ben Carson at Johns Hopkins in Baltimore, MD. Dr. Carson again confirmed the Chiari, but thinks we should wait. He wants to monitor her for the next three or four months and then re-evaluate and make a decision. We were very comforted with his decision to get to know Maddie a little better and watch her. No matter what the outcome is, we know that God has control over all of this. He knows what is best for Madison and that gives us peace. Please follow us on this journey!!

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