Updates

Hi everyone. Here is an update on Aubrey. We went into the hospital Monday for another EEG because I had some concerns that Aubrey was having seizures. They hooked her up and had us stay overnight. It was confirmed in the morning that she was indeed having seizures. The seizures she is having are called infantile spasms, causing her to have sudden jerking movements. These specific seizures are hard to treat with medication, instead they treat them with a diet called the ketogenic diet. Ketogenic is a high fat, high protein, no carb diet so its like Atkins for her. Since it is such a harsh diet to be on they increase the strength over a 3 day period to make sure your body can adjust and handle it. She was doing good in the beginning but yesterday she wasn't keeping anything down. They switched it back to medium strength and shes still not doing well. We are not sure how long we will be staying at Childrens now. We were supposed to leave today but now they have decided to keep her.
Aubrey is still having seizures but we are hopeful they will subside after her body gets used to the new diet.

Aubreys Story

Dear friends and family,

I want to thank you all for visiting this site and hope you all will pray for Aubrey and our family. Aubrey was recently diagnosed with a metabolic disease called Pyruvate Dehydrogenase Complex Deficiency (PDCD). What that means is her body does not break down sugars to create energy. It just builds up in her system as lactic acid. A few things Aubrey is faced with in having this disease is developmental delay, low muscle tone, seizures, loss of brain tissue and abnormal growth of the corpus callosum in the brain.

Previous to this diagnosis Aubrey was seen by a neurologist for a possible seizure we though she had. At that time they did a EEG which monitors the brain waves to detect seizures. No seizures were recorded at that time but it did show she had abnormal brain waves so more tests followed. They did a MRI where they found several different brain abnormalities including loss of tissue and a abnormal corpus callosum. That is what led her doctor to believe something more serious had to have caused this. Her neurologist refered us to the genetics department at children's hospital where they would do further tests to determine the source. After several blood tests and a skin biopsy and waiting a few months here we are.

There is no cure for this disease and the outcome is...for lack of better words...not good. All we can do now is pray for her and that is what I need all of you to do. For her and for us!!