Aug 15: Rough Couple of Days

Weslee hasn't really slept well in several days. (I wrote about it some in my last post.)

He will pass out with the lights on, still holding the tablet he was working on. Then a few hours later, he would waken, not able (or willing?) to back to sleep. 

Not enough sleep, for him, means more seizures AND anger, tantrums ... reversion to childish behaviors and lashing out at me. Picking fights. (NOT physically.)

I have to go to another room to avoid saying something I would regret. Which prompts him to call me names for being a chicken.

He doesn't mean to be mean. His brain goes wonky. I try very hard to not hold it against him.

It just gives me more stress.

But I do what I must.

Isn't that what a caregiver does? A mother?

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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 ... Thank you.

Aug 11: Sleeping Pretzel

I had to crop a lot
out. Still extremely
hot here so not many
clothes.

He fell asleep again tonight, but this time in a weird pretzel position. I don't think he had a seizure, other than his usual day-full of simple partials.

At 'bedtime', Weslee gets it in his head that he wants to watch one more video or write one more paragraph. Not long after, I notice the quiet, and find him sleeping, teeth not brushed and his various night music and lights not on.

I must never wake him then. Interrupting his sleep will increase the bad seizures for the next day. When he gets this solidly asleep, it would take a marching band (or  tonic clonic seizure) to bring him out.

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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 ... Thank you.

Jul 7: Fought Sleep

NOTE: This is OUR experience. Consult your own epileptologist (neurologist specializing in seizures and epilepsy).

Weslee's epilepsy consists of several types of seizures, many meds, and various but NOT consistent triggers or causes. Sleep, or lack thereof, can often start a day (or few) of seizure clusters.

Of course, getting a full night of sleep is absolutely NOT a guarantee that he won't have seizures that day. His epilepsy is intractable. Despite 12 brain surgeries, a VNS, experimenting with meds and med combos, and carefully tracking seizures and possible causes, we are no closer to figuring out how to stop his seizures than we were in 2011.

Back to the sleep thing: We have some work-arounds when he can't get to sleep but telling a 28-year-old man/child to get to bed doesn't help. I have to tread very lightly in how I approach the subject, especially since arguing is yet another trigger.

This pic shows what happens when you really really REALLY want to watch videos. You binge until sleep forces you into DreamLand.

I thought he went to sleep around 11:30. And he might have. No idea.

Heard what sounded like a seizure so checked on him at 12:45 a.m.  Light was on, tablet was where it dropped, no nighttime music was going, and no evidence of a seizure. Was just him sleep-talking like he does most nights. 

Left his tablet on him (needs his sleep more that I needed to clear off his bed) and only turned off his light.

No clue when he actually fell asleep. I just hope he gets a full 8 hours because anything less could bring a day of seizure clusters.

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Edited at 7:10 a.m. to add: He woke up very confused at around 6:45. That means he got around 6-7 hours of sleep. He does better between with 8-10, so right on the cusp of what he needs. Yup. I will be on high alert today.

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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 ... Thank you.

Jun 21: Go With the Flow

Instead of recuperating from the surgery on this hot hot Saturday, I chilled (see what I did there?).  Should have done some writing, editing, painting, website maintence, or a thousand other things.

Nope. Slept in. Awoke with blood on the side of mouth. And then got still more sleep. Then made a nice protein packed meal, sorted some wine charms (ok, yes that is work), and started reading a novel.

Weslee hasn't really slept the last two nights. You can tell by his eyes in this pic (just took it tonight). Warned him if he is still up and watching vids by midnight, he will get a hardcore sleeping pill.

We'll see.

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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 ... Thank you.

May 28: Sleepyhead

This is what I woke up to ... Weslee sound asleep.  I know he had gotten up earlier to take his pills and a few other things. I wonder if he had a tonic clonic seizure to make him so sleepy. Perhaps he was just tired.

I admit that I wanted to go back to bed myself but ... errands. Seems like I am at the pharmacy at least once a week, no matter how hard I try to get all of our meds to the same day a week (prefer same day per month).

Oh, and I found out last night that a credit card number was stolen. Again. My bank caught it but now I have to go to the bank for a new card. 

So frustrating.

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Weslee needs more brain surgeries for his seizures.  To help, please go to his Medical GoFundMe or to our Paypal ... Thank you.

Apr 30: Lack of Sleep Causes Seizures

I knew today would have a lot of seizures. Why? Because he got barely any sleep last night. As he gets older, his brain has been changing, of course! It used to take more than one sleepless night to get seizure activity. Now? Half a day. 

His 'bedtime' is 10 or so. I don't fight him on it because he is 28! I just make sure he takes all his pills at around 9:30. We do hugs and kisses at 10 or so, then turn out the light. Then he usually watches a few more vids.

Last night, I noticed he was still up, watching YouTube vids.  I told him .. reminded him ... to get to sleep. That he is prone to seizures if he goes to sleep this late.  He was still awake at 2:30 when I passed his room. And again at 4 when I went to bed to read.

A little bit ago, I heard a crash. I jumped up and ran. I found him on the floor, his container of pills emptied but not spilled. He grabbed at anything he could when he started to fall. 

He had a seizure at the top of the staircase. Thankfully, he fell the other way.

I gave him a rescue med and started counting seizures. 7 in 10 minutes.  10 in 16.

This is a lesson that I have no other way to teach. 

One day, he might learn it. 

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Please help with Weslee's medical and related expenses, then share the link(s) everywhere. Check out the GoFundMe ... https://www.gofundme.com/f/r8wuy7-help-weslee-and-family-with-medical-expenses

Here is the GoFundMe tiny URL: https://tinyurl.com/bdccbkpj

...OR...

If donatìng through PayPal is easier... Click here.  

Thank you.

A Couple of Sleepyheads

Last week was rough on both Weslee and me, his Mom.  So many seizures. Major concerns about soaring grocery, utility and rent prices. Seizure meds difficult to obtain in time.

So what did we do?  We didn't plan it. Just happened. Something I am quite sure we haven't done before: we slept off and on all weekend. Weslee even passed out Saturday night before turning on his many nightlights, which we use so I can easily check on him at night, or get to him during a seizure.

Should I have done laundry?  Yep.  Or painted. Or edited a book, answered emails, or caught up with one of my sisters or a good friend.  Yup.

But I prioritized our mental and body health. Hoping to face this new week with energy, clarity and mega-loads of patience and resilience.

Here's my handsome fella. I am thinking: wow! My boy needs a shave!

Difficult Day

Today ended much as it began... with clusters of seizures. 

You know how sometimes your 'parent 6th sense' kicks in? Mine did, again. 

Couldn't sleep last night, whether my apprehension about seizures or nerves about an email I wanted to send today (didn't) or PTSD or the heat, I don't know. Just as I started to nod off around 8 this morning, Weslee started with the seizures. 

Thankfully, we didn't need more than one dose of one of his rescue meds to bring them under control. Then I caught a few Z's. 

Tonight he had just gone to bed when I heard the seizures start up again. Weird this time. His body was so contorted that he looked like a pretzel. It took another 30 seconds or so before he started breathing again and straightened his body.

I hope he can get to sleep tonight. I desparately need some myself.

If you can help get us to Ohio for Weslee's upcoming medical consult (and back), please click here. Thank you.