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Annette Maughan
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A view of loss
Bug has been doing pretty well on the new treatment protocol.  His seizures are down and his Doctor has agreed to keep him on the Dilantin and monitor it. Oh hooray! He has seemed more present and aware, more interactive. We all see it, and we all doubt it,...

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North Dakota
When Elly asked me to join her in presenting in North Dakota
about Cannabis, I told her: I will do this for you, because you asked and also
because she sorta, kinda threatened. But, I changed my mind. I thought: Why
would I get back into that world? Did I n...

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When a horrible mistake makes for a wonderful moment
All of us, we make mistakes. Some of us make REALLY big mistakes. I made a big one. I know better but still...with the hundreds of seizures Bug has been enduring...mistakes become more liley and diligence is key. WRITE everything down and put dates on calen...

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ESES
Electrical Status Epilepticus of Sleep looks like this: Hell of alot of seizures isn't it? All while asleep. The few hours of peace are when he is awake. The seizures tire him out so he sleeps a lot which causes more seizures. Viscous cycle. Lately, he has ...

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All about the timing
Today this video came across my Facebook feed: http://youtu.be/tmWfJR4KrDI I began to tear up at her response, at his joy, and the school cheering for them both. Genuine. Touching. Love. And then I began to think about Bug. I had just given him his SECOND d...

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Bad year...go away
I haven't blogged for a very long time. Because Dad died. In December he came for Christmas, by January he had a cancer diagnosis and began chemo and was dead mid-March. Our world turned upside down. Again. I miss him more than I have ever missed anyone bef...

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All In.
What do you do when you hear of an injustice? Bug is doing well, he is happy and playful and not having more than 2 seizures in any given day and almost ALWAYS sleep dependant. No really big ugly tonic/clonics so we are pretty pleased. He also saw his new D...

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What is Seen and Unseen.
This last week has been rough, not for Bug. Bug has been doing well. Averaging less than 2 seizures a day still, even with getting sick, this is great! He is smiling and engaged, following simple directions and he is playful. Playful in a way he was when he...

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The upheaval of Christmas
14 seizures in 18 days...not a bad average. Last night threw it off a little, 2 in 3 hours. :( But a restful night and he is getting sick, so we would expect at least 10. Holding my breath for the rest of the day. Working on the KBG Foundation is very daunt...

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Call me a drip under pressure.
The last few days have been relatively quiet on the seizure front. We have, preemptively added back the .5 clonazepam at night to help with the nocturnal seizures. I hated doing it but he has gone seizure free a day or two with it so...trade offs. We discon...
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