Vikki Lawrence is called "that purple mom" because she has worn purple EVERY DAY (for epilepsy awareness) since November 2013. Her son, Weslee, had his first Tonic Clonic (grand mal) seizure in 2011, and the first of many brain surgeries in 2013. His seizures are still uncontrolled. (STORE:
www.etsy.com/shop/VikkiLawrenceShop )
As you know from my last post, Weslee has been practically begging to see the movie "Iron Lung" ... written / directed / starring 'Markiplier' ... one of Weslee's favorite Youtubers.
You might also remember me talking about how he has seizures after he has an outing to the movie theater. I'd say ... within 24-36 hours of coming home. Mostly they happen that same evening.
So I finally got the car unstuck from last week's ice, and took him on Monday. First time alone in a theater since epilepsy diagnosis. I did walk in with him, and glad I did. He had cash. They don't take cash. Used my debit card, and waited in the lobby as he made his way to the right theater.
He didn't have any seizures then. I expected them that night, but the new RX X-Copri that he is on, along with his other seizure meds, did a good job holding back the seizures.
Until tonight (last night? Tuesday night.) Good ole wiggle worm and gelastics. He had only a few then his evening meds kicked in and he stopped.
I feel so bad for him. He wants so much to be normal.
Maybe one day.
(The following would help him.)
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Weslee needs more brain surgeries for his seizures and I have a new cancer diagnosis.
October, November and December were somewhat comfortable months, temperature-wise, considering it was technically winter. But when January hit and the winter storm thrust a lot of people to experience negative temps and snowbound / icebound homes, things had to change here too.
Our electric bill in December was triple what it was in November, so despite the massive temperature drop outside, I had to drop it inside as well. I moved the thermostat from 67° F to 62°, in the hopes that in case we lost power, we could figure a way to stay warm. Getting subconsciously used to warmth through layers, not necessarily a functional furnace. Plus, of course, to reduce our electric bill.
I started going around with two pairs of fingerless gloves on and always wore (wear!) my flannel jammies (except for obviously when we leave the house). There are 4 comforters on my bed. (I am old !!)
Weslee has been wearing more clothes to bed than usual, and he has three comforters on his bed, his safe space. He still kicks off covers at night so I sneak in around 3:00 a.m. to re-cover him.
My vehicle is still icebound, even though I've chipped at it it almost every day, but the ice doesn't seem to want to cooperate. It would get some lovely morning sun to help melt the ice, except for the humongous truck that is blocking the sun from getting to the ice in front of my tires.
Anyhoo, as to Weslee's seizures, they seem to be occurring less frequently (knock on wood). I hope it's because of the Xcopri RX that he started; he is on the third week now. He doesn't seem to be using the 2 extra clonazepam pills every day, or need the rescue nasal spray as often. (Pic shows the ledge by the stairs with 2 battery flashlights, a hand-crank flashlight, his rescue nasal spray and a clon pill. You might even make out the jugs of water in the background. Very handy.)
Weslee wants to go to the movie theature tomorrow to see "Iron Lung" ... written, directed and starring one of his favorite youtubers: Markiplier. He has offered to pay for it out of birthday money. What concerns me is him being there for over 2 hours, by himself, knowing a seizure could happen at any moment. He does have more seizures on days he goes to movies. I guess I will have to trust he will be fine. (I have errands to run, like picking up meds.)
That's it for now. Stay safe and warm.
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Weslee needs more brain surgeries for his seizures and I have a new cancer diagnosis.
