26 May 16: More Drop Seizures

(Pic of this tall guy sleeping. So glad he doesnt have many seizures while sleeping.)

I know .. I know. It's been a while since I posted but thought I would update now.

Weslee has seen the spine specialist for those 4 spine fractures from his Apr 24 fall down the stairs during a seizure. Confirmed the fractures and admonished him to rest for 6 weeks and let him heal.

 Yeah. Right.

And of course, he won't.

He has had a lot of seizures (mostly drop) lately but I cant always catch him. Two happened in his bedroom; I couldnt get to him because his body was right agaimst the door, blocking me.

One hit him at the bottom of the stairs. I tried to catch him. Was too far away. At least he WASN'T on the stairs this time.

Anyhoo ... he really needs those surgeries at the Cleveland Clinic; my car still wont make it there and back. People want value for their money (donation) so here shortly, I will be adding products to my etsy store.

Thank you for your support.  

Vikki 

(That Purple Mom)

*****

Please visit my etsy shop at

www.etsy.com/shop/VikkiLawrenceShop 

26 April 28: Video

26 Apr 26: Weslee Update

Sleepy son

Reminder: Weslee fell down the stairs during a seizure on Apr 24. I took him to the Emergency Dept as soon as I could.

After comprehensive scans, we learn:

1. Shunt (for his brain bleed) and VNS are still where they are supposed to be.

2. Four small fractures in his spine.

3. Need to follow up with spine specialist.

5. He is very lucky. Could have been MUCH worse.

He has had a continuous nasty headache ever since. The pain is supposed to last for a while... while he heals.

He takes as much acetameniphen as is prescribed on the bottle. It only takes the edge off. On Monday, will make some calls to get him something stronger.

My sweet boy is in so much pain, in his head and back. Hurts to move into a sitting position. Hurts to move at all.

 

26 Apr 24: Fall Down Stairs

IGNORE TYPOS!!!

It finally happened. Been dreading it since his first seizure, and today was the day.

Was in my bedroom getting dressed because I have an ultrasound at 1:30 and other thing... like go to the bank, etc.

I heard Weslee start to come up the stairs (I subconsciously listen for him all the time) but this time, I heard a horrendous crash.  I went running. 

He was at the bottom of the stairs doing a seizure-moan, completely disorieorented, twisted to the left.  I got down the stairs as quickly as I could. He was crumpled up on the stairs landing snd still in whatever this was. I rubbed his back while he struggled to (1) come back fully, and (2) to get up and walk to ... who-knows-where.

As soon as he could safely walk, which took several minutes, I got him to his chair and gave him an extra clonazepam, and his rescue nasal spray, Nayzelam.

Another 5 minutes and he was able / ready to walk to the car. I got him in and I brought him to the emergency room / department. 

He has already had a CT scan to make sure the shunt in his brain did not dislodge (still has for brain bleed from 2019 stroke). He's now back there getting a scan for his back, which seems to really hurt since it took the brunt of the force of the fall. 

So far he has had a CT for the shunt/head and separately, of his entire back from many positions. His back took the brunt and really hurts, esp. to move.

While he was getting the scans, I did my ultrasound.

He is back in the room. Will add more when I know more.

26 Apr 5: More Seizures

I know it looks like the same video ... over and over ... but his safe space is his broken bed, and he loves that soft blanket (it is an autism thing).

Yeah, he is fuzzy wuzzy. Needs a shave and a haircut.

Vikki

His Mom

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.

*******

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.)

*******

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

*******

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

*******

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

*******

#ThatPurpleMomcom 

#gelasticseizures

#uterinecancer

*******

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

*******

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 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

*******

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 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 ...

*******

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.