26 Sept 02: Me-Mom

A little reminder about me first ... ... I have very low platelets which has put my cancer surgery on hold. Despite trying a few things, like a special med, we still can't get my numbers up. Going under the knife with these numbers *as is* will kill me. That is directly from my oncologist.

Straight-forward.

Meanwhile, I have been on insulin since my kidney stone operations in Autumn of 2025.  Between the daily shot (just 1 per day) and my platelet situation, I make a new bruise with every shot (see pic). So much fun. Not.

Plus I am a huge klutz so during any given day, I bump into something that gives me a bruise on legs, torso, arm, etc. Is particularly rough when I hit my right breast ... still hurts from the 3 breast cancer surgeries I had.

Even when Weslee is having a mean moment (side effect from seizure meds or being over-stimulated), he hates seeing me bruised. He really can show love and concern. Good kid.  Mmmmmostly!

BTW, he made and ate scrambled eggs with cheese last night but he was NOT happy that we are out of ice cream. I think the eggs were the only thing he ate yesterday.

Today will be busy. Leaving in a few to get his blood drawn, then pick up prescriptions and his ice cream, then home for our regular video call with the Cleveland Clinic. Because it will be a super active day, it will take me days to recover.

Have a good day.  V.

26 Sept 01: Weird Sleep

I think Weslee might be having seizures while sleeping. Four times i have looked in on him to see him laying completely sideways on the bed. About a week before, he told me he fell off the bed, on to his trundle, during night.

I tried to rearrange him the first time i saw him sideways but he lashed out at me to leave him alone (which tells me he is prob having a sleep seizure to make him so discombobulated, but no idea what kind). So i leave him sideways now.

(Pic is from last night.)

 

About an hour ago, he had a drop seizure. Fell against a partition, bounced off and went straight back. Hit back and head. He crawled to his bed after. Said no additional pain, but there is an obvious mark on his back.

He has stopped eating again. No breakfast at all. Will only eat lunch and/or dinner if I put it in front of him. Except ice cream. And a fruit V8 juice, like strawberry banana.

Would love some advice.

Vikki (Mom and POA)

26 Aug 13: Seizure Timing

previously
posted pic
shows broken
nose

When you are a caregiver for someone who has uncontrolled seizures like I am for my 30
y.o. son Weslee, you are responsible for ALWAYS being on duty. Shower, sleeping, cooking, etc. Doesnt matter. We hear a body fall to the ground, we have to go running. Make sure they didnt break their nose, fall onto someting sharp, clear from his mouth that food he had just bitten off.

...and God help us if we are sitting on the pot and hear a nasty seizure happen.

If you know, you know.

BTW, Weslee just had a big ole drop seizure downstairs in the kitchen. I was upstairs and ... indisposed.

I think he re-broke his back (4 feactured places from May 24 2026 drop seizure down the stairs). He has a spine checkup soon.

26 Aug 8: Intake Done

I mistakenly thought Weslee's appointment on Aug 6 was his first therapy appointment. Nay. It was the intake appointment, so it was mostly me answering questions while Weslee napped ON CAMERA!!

I have another book of paperwork to fill out then he can be seen.

Oh, what fun.

26 Aug 6: Self-Termination Discussion

Within moments of me publishing my last post here (2 days ago), Weslee came into my bedroom, crying. He felt like his one friend betrayed him. Held a secret for 2 yeats to use against him now. Weslee is so lonely. Wants a friend who is honest, and who enjoys the same things (mainly videos).

Plus the constant onslaughf of seizures is like being hit over the head every minute of every day. Making him crazy. He doesnt want to be here anymore.

(Now might be a good time to remind you that although he is nearly 30 years old, his autism, brain surgeries and seizures have permanently made him mentally and emotionally 13-14 years old.)

We sat on my bed and talked for a long while. He didnt want to go to the hospital. I spaced and forgot about suicide hot lines. 

I did manage to get him to promise not to do anything yet, and give me time to find him a therapist.

His first appointment is today, video call.

Keep him in your thoughts please.

Vikki, his Mom

26 Aug 04: Seizure Update

I know it has been a while. Keep reading.

From drop
seizure against
washer/dryer.

I wrote about Weslee's May 24 fall down the stairs during a drop seizure, but not the subsequent ones.  He had another several within the next few weeks including one where he fell against my bedroom door (making the hole in the wall larger), one where he fell UP the stairs which was weird but that happened to be the way he was facing, and one where he fell against the washer-dryer unit. 

My spine is disintegrating but I try to catch him when I see his eyes glaze over and can get to him in time.

The 4 fractures in his back from the May 24th fall have not only not healed, but are causing him a great deal of pain. He's now taking a acetaminophen a couple times a day every day. If you knew him at all, you would know that he's got an amazing tolerance of pain, but this is starting to hurt him so bad that he's getting very despondent.

He confessed to me today that living this way is not tolerable. It's so much more than the word despondent, that I can't even find a way to say it. 

He wants the seizures to go away. He wants the pain in his back and in his head to go away. He wants to live a normal life. He wants friends. And he can't. 

Weslee is even willing to do another SEEG surgery (this time at the Cleveland Clinic), even though the last one he had done on May 1 2019 gave him a stroke and put him in a coma. To be willing to go through all of that again, to chance another stroke and possibly death is something that he is absolutely campaigning for. He doesn't care anymore that he may not come out of it. 

I don't know what to do anymore. It hurts my heart, and with all of my own health problems which are getting worse daily, life has gotten very difficult for the both of us.

What can I do?

Thank you for listening.

Vikki, his Mom

26 Jul 04: Weslee's Bed

This is Weslee's bed when he is not having seizures. The bedding is super soft, which satisfies his autism. He likes the big "armed" pillow, which I need to replace because it is squishing flat beyond anything I do to keep it full size.

This is the most recent bed frame purchase. He is so hard on beds ... falling against the bed / on it during a few kinds of seizures, like the drop or the tonic. Can't replace mattress yet, despite the stains of blood and brain fluid. For now, absorbant nighttime disposable underwear and ice cream are more important.

The pain from his drop seizure a few days ago (fell into / onto the washer/dryer unit) is decreasing but the biggest scrape is turning a bit red around the edges. (See pic.) I just bandaged that one with antibiotic ointment. Really don't want more blood on his mattress.

Well, at least he didn't break his nose this time (although he could have re-fractured his back [broken from May 24 fall down stairs during drop seizure]), and didn't leave another puddle of blood.

Having lunch with W's grandmother (my stepmom) tomorrow. Haven't seen her in ages. Not since before my Dad passed, though we talk often. We only have less than 2 hours before she needs to head to the airport to go home. Living in Florida means she is used to this temp. Wish I was.

Gonna stop here. The fireworks are making my migraine worse. I know .. I know .. I owe you guys an explanation for the long pause from posting. I will do it when I can think and when I am not melting.

V

(Remember: Weslee is my adult son, nearly 30 years but mentally and emotionally 14. My squeezie-boy! He is autistic with mystery epilepsy, many brain surgeries, had a stroke and coma, partially blind and oh so many health problems.)

26 Aug 14: Coping with Pain

Between my migraines, disintegrating spine, uterine cancer and a plethora of other health situations, this is what happens with me on a daily basis:

https://www.facebook.com/share/r/1BespaLNBa/

Here is another one:

https://www.facebook.com/share/r/1JFfxqVjLR/

Wouldnt allow me to copy text, so please read the 'more' descriptions and comments. Come back here afterwards and leave a comment.

Thank you.

Vikki

26 Jul 02: Damage from Seizure Cluster

This is just a portion of Weslee's clusters of seizures for today. He had a lot of really bad ones mid-afternoon during which he fell on the stairs. Again.

He had seven seizures in 5 minutes, and more after that, that I lost track of. Then just a little bit ago, he had another cluster of seizures during which he fell against the washer/dryer unit, causing damage to his back. External but possibly re-fracturing his back. 

Both of those big ones were drop seizures, and could have been a whole lot worse. 

This video is after he crawled (afraid to walk) to his bed after the washer incident. Like I said...  his back is pretty messed up again, possibly rebroken from when he broken his back falling down the stairs on May 24. For now, I can see his back is  majorly scratched.

As his mom, I hate that he has to go through this.

(Sorry I haven't been around much lately. Life as a caregiver is a struggle. Maybe I will write a bit more tomorrow.)

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