ThatPurpleMom.com

26 Mar 25: Cluster of Wiggle Worm Seizures

Videographer: me, mom, Vikki

Kiddo: Weslee, 30 going on 14, epileptic

By the time I started recording, he had already had quite a few of these seizures, taken 2 extra Clon pills, and one nasal rescue spray.

Then ...

After I stopped recording and gave him a second nasal spray, it took over 30 minutes to work.

As always, ignore the state of his bedroom, broken bed, and the yucky mattress. The wiggle worm seizure is rough on the sheets, blankets and mattress.

BTW ... if anyone knows what the wiggle worm seizure is technically called, or have an idea about the weird hand movements, please comment.

Thanks.

26 Mar 6: Weslee's Seizures

This is a vid I took of Weslee's seizures (cluster) on March 6.

As usual, ignore the bare mattress on the broken bed. Falling on it, with dead weight, during a seizure, weskened the frame. Add in the bloody noses, brain fluid leaks, et al, and, well, you can see.

26 Feb 12: Part 2: Weslee's Weird Seizure

I am a little late getting this up. In the next post, I will explain.

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Please comment, like, subscribe and share.

Weslee needs more brain surgeries for his seizures and I have that new cancer diagnosis.

To help, please like, follow and share... PLUS .. please go to his Medical GoFundMe or to our Paypal ... AND please visit my etsy shop at www.etsy.com/shop/VikkiLawrenceShop ..

For Weslee's regular and daily needs, please visit: Weslee Lawrence's Needs (WalMart) List. Thank you.

26 Feb 12: Busy Day = Seizures, Pt 1

Feb 12 was a busy day. First, we had a vid chat with pharmacist from Cleveland Clinic. Then almost immediately left for doc appt with G.I. to discuss Weslee's massive weight loss. Then to the grocery on the way home. I came back to car with the groceries and found him with hands shaking uncontrollably, stuttering. I assumed it was a seizure. He took an additional clonazepam, I loaded the food into the old van, and we took off for home.

Video recorded at Feb 12 at 3:34 p.m.

Part 1 of 2 ... Pt 2 coming tomorrow

*******

Please comment, like, subscribe and share.

Weslee needs more brain surgeries for his seizures and I have that new cancer diagnosis.

To help, please like, follow and share... PLUS .. please go to his Medical GoFundMe or to our Paypal ... AND please visit my etsy shop at www.etsy.com/shop/VikkiLawrenceShop ..

For Weslee's regular and daily needs, please visit: Weslee Lawrence's Needs (WalMart) List. Thank you.

26 Feb 5: Purple Mom Caught the Flu

I awoke today, after 2 p.m.!, with what feels like the flu. Cotton head, scratchy burning throat, dizzy, pounding headache, a bit of a fever, full body ache, stuffy nose. So miserable.

(I needed the sleep very much but 9 hours straight?!?! I did start feeling funky yesterday. Should have known.)

Weslee feels fine. I have to stay away ftom him because with his seizures, a nasty bug like mine could send him over the edge. It has before. I do NOT want it to happen again. His seizures are actually improving with this new med.

However, I will rouse myself to make him dinner (snack meal) tonight. I have strawberries for him. Maybe a cheese turkey bacon wrap plus peas, carrots, apple slices and the berries. I really hope I will have the energy to do it.

Head hurts. Taking some meds and going to bed.

Stay warm and healthy, people!

*******

Please comment, like, subscribe and share.

Weslee needs more brain surgeries for his seizures and I have that new cancer diagnosis.

To help, please like, follow and share... PLUS .. please go to his Medical GoFundMe or to our Paypal ... AND please visit my etsy shop at www.etsy.com/shop/VikkiLawrenceShop ..

For Weslee's regular and daily needs, please visit: Weslee Lawrence's Needs (WalMart) List. Thank you.

26 Feb 4: Movie Theater = Seizures

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.

To help, please like, follow and share... PLUS .. please go to his Medical GoFundMe or to our Paypal ... AND please visit my etsy shop at www.etsy.com/shop/VikkiLawrenceShop ..

For Weslee's regular and daily needs, please visit: Weslee Lawrence's Needs (WalMart) List. Thank you.www.etsy.com/shop/VikkiLawrenceShop

26 Feb 2: Surviving the Cold

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.

*******

Weslee needs more brain surgeries for his seizures and I have a new cancer diagnosis.

To help, please like, follow and share... PLUS .. please go to his Medical GoFundMe or to our Paypal ... AND please visit my etsy shop at www.etsy.com/shop/VikkiLawrenceShop ..

For Weslee's regular and daily needs, please visit: Weslee Lawrence's Needs (WalMart) List. Thank you.www.etsy.com/shop/VikkiLawrenceShop

26: Jan 27: Winter Storm Update

Here in Louisville, KY, we ddn't get dumped on, like we expected. As you can see, we got only a couple of inches. I miss Colorado and the snowfalls it gets. I am such a kid (ignore my age ... 62 is just a number!)

I should be able to get to the doc tomorrow (checkup from my last surgery).

Still... colder than a bee's knees! Wearing lots of layers.

Weslee is doing ok. Dont want to jinx it but the new med, XCopri, seems to be working. Hasn't mentioned the "hurricane of seizures" that he has been fighting progressively for weeks.

Stay warm.

#2026WinterStorm
#thatpurplemomcom

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Weslee needs more brain surgeries for his seizures and I have a new cancer diagnosis.

To help, please like, follow and share... PLUS .. please go to his Medical GoFundMe or to our Paypal ... AND please visit my etsy shop at www.etsy.com/shop/VikkiLawrenceShop ..

For Weslee's regular and daily needs, please visit: Weslee Lawrence's Needs (WalMart) List. Thank you.

26 Jan 25: 2026 Winter Storm

We are a little over 12 hours into the 2026 winter storm... the snow part. No significant wind yet, but we definitely have teen-digit temperatures.

Started prepping for this storm on Thursday. Lots of laundry. Clean dishes. Batteries and wind-up flashlights ready, as are candles. Plans made for warmth if the heat / electricity goes out. Had already stocked up on water at the start of January.

Have enough meds for Weslee and I. He started a new seizure med a little over a week ago, X-Copri, prescribed by the Cleveland Clinic. Yes, they still have their hands on the pie.

So yes, we are good to go, I think. I just hope that the streets will be navigable by Tuesday, as I have a doc appointment.

Thinking I might bake tomorrow, or make some mini cheesecakes.

Stay warm, people, and stay safe. Dont take any risks.

Vikki
www.ThatPurpleMom.com

#ThatPurpleMomCom #2026winterstorm

*******

Weslee needs more brain surgeries for his seizures and I have a new cancer diagnosis.

To help, please like, follow and share... PLUS .. please go to his Medical GoFundMe or to our Paypal ... AND please visit my etsy shop at www.etsy.com/shop/VikkiLawrenceShop ..

For Weslee's regular and daily needs, please visit: Weslee Lawrence's Needs (WalMart) List. Thank you.

26 Jan 4: Seizures Worsening

A few weeks ago, Weslee started having drop seizures. It's almost every night, and it coincides with the beginning of my severe health issues ... August? September?

I was hoping that it was just a temporary thing, and that he would get over them. Hoping that all of this increased seizure activity was because of stress or concern about my own health.

Unfortunately here we are the first week in January, and not only has his seizures increased but they've mutated. Again.

Weslee and I just got off the phone (a virtual appointment) with his epileptologist's office. Weslee has been speaking about the hurricane of seizures that he's been having lately. (Mostly simple partials.) One after another until he feels like it's a cycle that has no beginning and no end.

He's up to five of one of his seizure meds (a year ago he took only 3 per day of this particular med). He takes a total of five different seizure medicine, plus his nasal rescue spray, which he is taking more often Too.

None of this is helping.

He is also still dropping weight. This really concerns me, because he's tired all the time. He doesn't have energy and basically, he's wasting away. His epileptologist's office is going to contact Weslee's GI doctor to see if they can get him in sooner than March, and she is also going to look into finding Weslee a therapist / psychiatrist.

We have a virtual telephone appointment in a few weeks with his epulepsy team leader at the Cleveland Clinic. They want to know the status of Weslee getting the next couple of evaluations and surgeries up there in Cleveland. I'm going to have to remind them that I'm waiting to get reliable transport to get us there and back. My attempts to fundraise for a working vehicle or at least to get my vehicle repaired, have been completely 100% ineffective.

Meanwhile, poor Weslee is so frustrated. Anxious. Depressed. And some of his OCD symptoms have come back full force. I hate seeing him like this.

I have a migraine. Going to bed.

Thanks for reading.

Vikki

*******

Weslee needs more brain surgeries for his seizures and I have new cancer diagnosis.

To help, please like, follow and share... PLUS .. please go to his Medical GoFundMe or to our Paypal ... AND please visit my etsy shop at www.etsy.com/shop/VikkiLawrenceShop ..

For Weslee's regular and daily needs, please visit: Weslee Lawrence's Needs (WalMart) List. Thank you.

End-of-2025 Seizure Cluster

Weslee was sick during the night... chest pains but not respiratory. Threw up around 5, felt a bit better, so he fell back asleep.

This seizure cluster started close to 9 a.m. Hurried in, watched for a bit then went back for my phone and recorded this.

What a way to end a horrible year. We/I really need 2026 to be better.

P.s. Our Christmas sucked. How about yours??

#2025SeizureCluster

#gelasticseizures

#ThatPurpleMomcom

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Weslee needs more brain surgeries for his seizures and I have new cancer diagnosis.

To help, please like, follow and share... PLUS .. please go to his Medical GoFundMe or to our Paypal ... AND please visit my etsy shop at www.etsy.com/shop/VikkiLawrenceShop ..

For Weslee's regular and daily needs, please visit: Weslee Lawrence's Needs (WalMart) List. Thank you.

Dec 9: Overwhelmed. Again.

I keep trying to carve out time up write here, work on projects, deal with my health issues, finish writing books, help Weslee, etc, but I am struggling. (Oh, and my computer died. Arghh!)

Finally healed from my 3 hospital visits (3 in 6 weeks!) so now I need to turn my focus to my super-low platelets and uterine cancer.

Weslee has been having drop seizures (sometimes followed by gelastic) almost every night. When not in his safe space (bed), either I catch him as he falls (nearby by accident / fate/ luck) or he falls backward into walls, floors, doors, and one time, into the tub/shower. He hits his head every time, and often gets scratches or cuts on his back.

He crushed a little shelf (pic to left) set in the bathroom as he fell onto it. Luckily, it had held only his "night-timies" ... overnight disposable underwear, extra tp, etc. Sooo glad he doesn't close the bathroom door because his body would have blocked me from getting to him. (As a reminder, we hung a long blackout curtain over the doorway so <1> he can have privacy, and <2> I can get to him.)

And I have either the flu or a nasty cold. Cough, fever, migraine, nausea/vomiting. Either way, I am laid up. Mostly.

Will post more when I can.

Thanks. Vikki

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#ThatPurpleMomcom

#gelasticseizures

#uterinecancer

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Weslee needs more brain surgeries for his seizures. To help, please like, follow and share... PLUS .. please go to his Medical GoFundMe or to our Paypal ... AND please visit my etsy shop at www.etsy.com/shop/VikkiLawrenceShop ..

For Weslee's regular and daily needs, please visit: Weslee Lawrence's Needs (WalMart) List. Thank you.

Nov 23: Weslee's Seizure Cluster

This is Weslee, my 29 year old child. He has autism, ADHD, and intractable seizures.

This vid was taken early in the morning (~2 a.m.) on Friday Nov 21. He had had troubles getting to sleep, so I went in to see if he wanted a sleeping pull (prescribed).

I saw he had been having a cluster of seizures that continued to last over another hour. Mostly gelastic plus what I call the "wiggle worm".

Had to give him his rescue nose spray and yes, a sleeping pill. A lot of sleep is absolutely crucial for an epileptic like him.

He has had an increase of seizures since my health began to rapidly decline, and my cancer diagnosis. Stress, I assume.

#ThatPurpleMomcom

#gelasticseizures

#uterinecancer

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For Weslee's regular and daily needs, please visit: Weslee Lawrence's Needs (WalMart) List. Thank you.

Nov 12: Back Home from Hospital

This slide show (sorry I can't slow it down) shows from early on Sunday, 11/9/25 through late afternoon on Tuesday, 11/11/25. Many challenges during this time... health and otherwise.

So glad Weslee and I are home. Hospital beds and the 'guest bed' (couch) are so uncomfortable. Once discharged, Weslee and I went to pharm, came home, ate, I started laundry and gave a seizure rescue med to Weslee, then we chilled until bedtime.

Today, I awoke in severe pain. They had sent me home with meds for infection, spasms and pain. The pain pills are very weak so staying in bed for today, unable to really function.

Despite hating their beds, the constant taking of vitals, and the ongoing evaluation of my eyesight (awoke with severe double vision on Monday), I believe we (I) would have benefitted from an extra day there.

Weslee's seizures are a mess. He has already taken an extra seizure med this morning because they (the little / simple partial seizures) were hindering his rational thinking skills. Glad I stopped by the pharmacy on the way home last night. Weslee now has enough rescue nose sprays for the month. I hope.

#ThatPurpleMomcom

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For Weslee's regular and daily needs, please visit: Weslee Lawrence's Needs (WalMart) List. Thank you.

Nov 10: Waiting

The pics says it all.

Last night ...

Weslee is having a lot of tiny seizures this morning. Glad I brought his rescue meds.

This morning ...

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For Weslee's regular and daily needs, please visit: Weslee Lawrence's Needs (WalMart) List. Thank you.

Nov 9: Checked in at Hospital

The last 10 days have been difficult, frustrating, painful and sped by much too fast. I will catch up on what happened when I can.

Meanwhile, I checked in at a hospital just a bit ago. Am in my room, but I don't have my IV etc yet. The plan is to take blood for CBC, get an infusion (or 2) of platelets today/tonight, then get the surgery tomorrow. Home probably on Wednesday, depending on bleeding.

Weslee is just chilling. Still gonna have to Doordash his food about once a day, but he has enough to keep him occupied.

He has had a lot of seizures lately. I am worried about him but at least he is safe here with me. No possibility of tumbling down the stairs or crashing into a bed.

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For Weslee's regular and daily needs, please visit: Weslee Lawrence's Needs (WalMart) List. Thank you.

Oct 30: Beyond Frustrated

Not sure how much more I can take. Listen for 3:44 min to get the gist.

Thank you. Vikki and son, Weslee

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WESLEE'S birthday is almost here. He loves almost anything Spiderman. Size Men's Medium (USA).

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For Weslee's regular and daily needs, please visit: Weslee Lawrence's Needs (WalMart) List. Thank you.

Oct 27: Surgery on Day 2 in Hosp

Yes, same
shirt. Very
little prep
and grab time.

Rough night in the hospital. Couldn't eat, drink or sleep. Surgery was expected in the morning. THIS morning. Monday.

While in E.R., they found a huge kidney stone that had been growing for a while. It had moved into a position where it began to kill me by pain. (Horrible joke). The urologist and hematologist were looped in as well as the hospital's night doctor, an endocrinologist and who knows who else.

The urologist, after consulting, getting more tests done, etc, did a quick procedure. Not sure it's formal name but they put a stent going from the stone to the 'exit'.

After about a week or two, I will get platelets and plasma, then the next day will get the last surgery... where he will use a laser to PEW PEW the stone then push it out? Last part is unclear. Was going under anesthesia at the time.

So meanwhile, I will continue to be in pain. Will meet with a specialist to temporarily take care of the uterine cancer. And will push fluids, take care of Weslee (and me!) and just take it easy.

Thank you...Vikki (and Weslee)

........

WESLEE'S birthday is almost here. He loves almost anything Spiderman. Size Men's Medium (USA).

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For Weslee's regular and daily needs, please visit: Weslee Lawrence's Needs (WalMart) List. Thank you.

Oct 26: Back in Hospital

Really brief ... I started out the day okay, but by mid-morning, my side started hurting. By evening, I couldn't function as the pain had risen to 9 out of 10.

I called my elder sister who drove over to pick up Weslee and me. Dropped us off at Emergency Dept. I had a feeling that I would be admitted, so we brought Weslee's weekly pill container, chargers and a few other things.

That was around 8 p.m. It is now almost midnight. Will go into more details in my next post.

Vikki

P.s. While dealing with a massive wave of pain tonight, Weslee had a nasty seizure, and fell backward. Hit his head. Arghhhh!!!!

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For Weslee's regular and daily needs, please visit: Weslee Lawrence's Needs (WalMart) List. Thank you.

Oct 24: Worn Down and Out

In my last post, Weslee had just begun having more seizures. That was Wednesday night. For the next 36 hours or so, I dealt with waves of seizures from him, barely getting a chance for him to do anything more than listen to YouTube videos. Neither one of us got any writing done.

I was exhausted by last night. Run down and worn out.

It is now Friday, after noon, and I'm going back to bed. Weslee's seizures have calmed a little bit, but unfortunately, I seem to have picked up a bug. I'm achy all over with a runny nose and a slight fever. Sore throat.

I am bundled under three massive comforters, and am in my Winter flannel p.j.'s with fuzzy socks and fingerless gloves.

I just don't feel good at all.

Hope I didn't give it to Weslee.

You know when you get sick with the flu or really bad cold and you can't really sleep a solid sleep because ... you just can't? That was me last night. So here it is about 1:00 p.m., and I'm going back to bed.

I really really hope that Weslee will have a wonderful, calm and seizure-free Friday.

So far, so good.

Thank you.

Vikki

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For Weslee's regular and daily needs, please visit: Weslee Lawrence's Needs (WalMart) List. Thank you.

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