Weekend Update

>> Monday, September 29, 2014

Friday was a crazy day.

At 8:00am, we were not quite to Primary Children's with Bug in tow. After the nervous excitement of waiting to start a CBD treatment for Bug, being late made me ill. We were only 15 minutes late. But as soon as we started checking in....

Bug peed. A LOT. ALL OVER THE FLOOR AND CHAIR. His diaper was full, his sock and shoe were full; the boy peed A LOT. Glenn took him into the bathroom to clean him up a little while I finished.

I said to the lady checking us in: We had a urine accident, you might want to call someone.

She mumbled something about our insurance and then said: uh huh.

She never called.

I wiped up the mess and, with a handful of diaper wipes, they called his name.

Oh goodie!

He's in the bathroom, I said.

OK, we will wait.

When we got back to the room, sans pants, socks and shoes, the lovely Fumiko entered our lives. She described what was required from us, what we would get from them and how the world would revolve around reporting...not really revolve but she's calling on Friday.

Then in walked the good Dr. We talked about Bug, we talked about his seizures, the types he had most frequently and they types he had less frequently. We talked about his cognitive development (Bug's not the Dr.) and then they gave me the seizure papers that I was to use to detail his frequency of seizures. It's simple, straightforward and I screwed it up. Twice.

While we were finishing up, Bug pooped. Nice. We changed him, went to get the labwork, met some nice people whose daughter has LGS and then we headed over to the pharmacy.

Once we were outside PCH, we drove to Walmart to buy pants and gave him his first dose while in the parking lot.

What you don't hear after the administration is Daddy saying: You seeing pretty colors Bug?

After that, he fell asleep and promptly seized. Ok, so not a miracle out of the gate, but since Friday, only two seizures.  His possible movement disorder is definitely not as pronounced and hasn't had melatonin either.

We double the dose on Friday.


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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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