What does it take?

>> Thursday, May 30, 2013

A week ago, I called Bug's Neurologists office about his lumbar puncture results. I haven't heard back from them.

What does it take to get someone to just look it up and call back? I will BET money that if I call his pediatrician's office they will pull it up while I am on the phone. Any takers?


Speak and Jinx

>> Monday, May 20, 2013

Man, did I ever jinx Bug.

"1 - 3 seizures a day," I said.

Today we are at or over 7 so far. That we know about. He slept until almost Noon. Getting sick? Constipated? Who knows. I just know that his helmet has saved several trips to the ER.



Added complexity

>> Sunday, May 19, 2013

Bug is doing quite well. Really.

Although he seems to be having slightly more intense seizures, we are hovering at 1-3 a day. Not bad considering his history.

The MOST exciting thing is the noises coming out of his...well...through his lips. He isn't opening his mouth and talking but he is making the 'Old Bug' humming and chirping sounds. A lot. Almost non stop at times. It's fabulous to hear. Once in a while he will open his mouth and say something...it's never coherent and it doesn't seem to occur over any one thing but at least he is making an effort.

The single most curious thing is also the most indelicate of things: we had to give him Miralax to help him void. Usually that means Gelastic seizures or tons of Myoclonics but he only had one Tonic. One. Wow.

Still, that's not the complexity part.

His baby brother born May 10, 2013 is the complexity.

The child has me on edge and in love. I would be lying if I didn't say that all the little standard baby movements aren't worrying me. Because they are. I watch him sleeping and see him twitch and stare for another 10 minutes. We (Glenn is doing it too) do all the little neurological tests they do to infants to see his responses. When he sits still, I try to rouse him. Really, he is usually dirtying a diaper and is concentrating, but my mind says; he is having an Absence seizure. He isn't. I can bring him around. It's ridiculous. But one does these things when they are willing to take a chance. Knowing that Bug's condition has a genetic component, we are taking another chance but what a beautiful chance and one that I would not miss out on for the world.

Aiden Christopher Maughan
May 10, 2013
8lb 11oz

Welcome to the madhouse baby boy.


What a Seizure looks like (Graphic Content Included)


Seizure Tracker.com

Seizure Tracker.com
Free online tools to provide people living with epilepsy and their doctors with a better understanding of the relationship between seizure activity and anti-epileptic medication dosages. Reports generated on SeizureTracker.com include detail graphing capabilities and are easily sharable with caregivers.

Diamond Potential Awareness Award

Diamond Potential Awareness Award
Thank you Holly at Diamond Potential for this award. Awareness leads to understanding and acceptance. And let's face it, we all need to feel accepted for who we are. The battle has just begun!

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