Lucas’ Journey – Epilepsy to Hearing Loss and Beyond

I’m tempted to change this blog title from, “The Lucas Life” to “Lucas’ Journey”


Because this has become more than Luka’s life. It has become a journey to get Better health, and get his development on track. It has become an everyday struggle for him to succeed in what he does. It’s more of his journey bouncing from hospital to hospital rather than with his life with me and what he does everyday.

I’m just not sure I want to change it.

Lucas has been bouncing in and out of hospitals this week. He was admitted for a 24 hour EEG last weekend, then for 2 days while he started the ketogenic diet to control his seizures. He was discharged and then continued our normal routine of preschool and therapy. On Friday we went to speech therapy where they screened him for any hearing impairment. To really no surprise, he is half deaf. He has sensorineural hearing loss. It’s caused by damage to the cochlea by problems at birth, heredity, or medical problems. Lucas does complain of ear aches. Not so much complaining though as tilting his head a certain way or crying for hours on end. He only has hearing loss in one ear (hence, half deaf) and he actually can hear out of his ear, but he can’t hear normal pitched conversation. For example, if I was talking to you at the grocery store. Lucas wouldn’t be able to hear that out of his deaf ear. Since Lucas can hear out of his other ear, he can still hear it is just not clear or loud enough for him to totally comprehend. This would be why he never talked until about 23 months or still cannot speak properly or understand what I ask of him.

Lucas is doing good though. He will still go to preschool and therapy. He just needs to be helped. He needs people to know that they need to talk louder or use pictures with him. They need to know that he is special and needs more attention because he will do things you tell him not to, and he will be very confused when you reprimand him for it. Lucas is special. Lucas was always special.

We now tell him that he has special ears and he needs to listen very hard and ask people to say something twice or to speak louder. He can’t sit next to a stereo or tv and expect to be called on and hear what he needs to do. He needs to wear a child leash or be carried or hold hands with me or a guardian because if he runs off, he may not hear you call after him. His needs are becoming the most important thing- they always were. Luka has a problem, and it has finally been caught.
He has myoclonic-atonic epilepsy, and sensorineural hearing loss in one ear.

After a long week of being in and out and on the run every which way, it’s nice to just lay down with your blankies for a quality nap.


Also, Lucas has been on the ketogenic diet for a week now, and has not had a single seizure. He is still extremely finicky about his new food, but I’d rather endure endless screams and tantrums about not wanting -blank- for dinner than watch him seize.



About Joseph

18 year old dad raising a special needs 2 year old, while struggling with Dravet Syndrome.
This entry was posted in 2 year old, deaf, developmental delay, epilepsy, family, health, hearing loss, hospital, ketogenic diet, kids, parenting, toddler and tagged , , , . Bookmark the permalink.

One Response to Lucas’ Journey – Epilepsy to Hearing Loss and Beyond

  1. You have a beautiful way of explaining his needs to him. What a blessed little boy to have such a devoted dad!

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