Logan's Story: Easter Eggs

Monday, April 1, 2013

Easter Eggs

We spent the evening before Easter dying eggs. It is a yearly tradition. Logan wasn't really up for dying eggs but Lauren and Cousin Madelyn sure were. We ended up with some very bright and colorful eggs. The girls are great artists.

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About Logan

This blog is a story of Logan. He is our six year old son who is developmentally delayed with a diagnosis of a neuro degenerative disorder. He has degeneration of the basal ganglia (part of the brain) and many types of seizures on a daily basis. His seizure type is Lennox-Gastuat. We have done exome sequencing and mitochondrial testing among many other paths of testing but have yet to find an official diagnosis. His other known problems/diagnoses include problems with swallowing (aspiration), hypotonia, cortical visual impairment, and degeneration in the macula of the eye.

Logan was born without complications but began to have feeding difficulties right away. He never took to breast feeding and when he drank a bottle he would vomit copious amounts of formula. He has problems with abnormal movements of his arms and legs, spasms of the legs, and inability to hold his head up for lengths of time or sit on his own.

Logan is nonverbal and is at the developmental age of 4-6 months. He is unable to take food or drink by mouth due to aspiration difficulties therefore he has a feeding tube. He has a tracheostomy to aid in clearance of secretions and had the removal of a few of his saliva glands.

We hope this blog will allow our family and friends to follow along in his journey and possibly bring ourselves into contact with other families dealing with the same day to day challenges.

~Joel, Rachel, Lauren, and of course... Logan