Wednesday, December 28, 2011

Logan is our vibrant one year old with a suspected mitochondrial disorder. Logan was born without complications and seemed to be a pretty normal infant. He always was slow to meet milestones, didn't breast feed due to difficulty latching, and had horrible reflux. By the time he was six months old he was obviously missing developmental milestones. He had yet to smile, laugh, or coo. He could not hold his head up and was not attempting to crawl. He also poor weight gain, and abnormal movements of his body.

At six months of age his growth was falling off the charts. He was failing to thrive with little interest in drinking from a bottle. His pediatric nurse practitioner started us down the path towards answers.

Thus far we have found he has hypotonia, choreoathetosis, laryngomalacia, strabismus, and problems with elevated lactate levels in his blood stream. After seeing various specialists we are now awaiting skin biopsy results from Mayo Clinic. They checked for something called pyruvate dehydrogenase deficiency which was negative. They have since sent his skin fibroblasts to Baylor College in Texas for further mitochondrial testing.

In the meantime, Logan is at speech therapy a couple times a week and at occupational and physical therapy once a week. The school district also comes to the house weekly and we have a public health nurse that follows Logan's progress. He has  G tube in place to receive feedings. Logan is so blessed ot have a great support group of family, friends, and healthcare and educational resources. We want to continue to thank all the people that have and continue to be integral to Logan's continued successes...Tammy, Sara, Bev, Patty, Dana, Katie, Jane, Nicole, Marilyn, and list goes on.

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