26 Sept 27: Dad / Seizures / Weslee's 30th Birthday

There are certain aspects in my life that I could only talk to my Dad about. He didn't always offer advice, which was appreciated. He often just listened.

It has been nearly 4 years since Dad passed: 11/19/22. It took **months** for me to get through a day without crying. When will the grief lessen?

Both Weslee and I are having a difficult day, in our own ways. His first drop seizure of the day landed him falling backwards, stiff as a board, into my tool box. His head just barely missed my hammer (purple, of course). Then he told me he called my niece yesterday to say he won't be at her wedding. Seizures, et al. 

That set off a huge argument.

For me, I have spent over 4 hours in the past 3 days trying to get Weslee's RXs sorted (still not), dealing with his tantrums and seizures, I am behind in letter writing and posting to blogs, still figuring out what to try to get him to eat (he is back on not wanting to eat), and a list of about 43 more to-do things.

Oh, and his upcoming milestone birthday.

So yeah, today is one of those days where I go to pick up my phone to call Dad, and then I remember he is gone. 

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Please comment, like, subscribe and share.

Weslee turns 30 years old on Nov 5 (mentally and emotionally, he will stay around 14-15.)  He doesn't want a party or special dinner but would love a birthday card ... lots of them! And if you would like to send him a $5.00 gift card from Amazon, or something from his wish lists, plesse see the LINKS below.

LINKS:

Suggested Birthday Card for Weslee (to send alone, with no gift !!) LINK: https://a.co/d/04gcNOAZ

Weslee's Amazon List of Needs ( mattress, foods/drinks, quality of life), etc. LINK:  https://www.amazon.com/hz/wishlist/ls/1FBY9TEQ9AZ3U?ref_=wl_share

Weslee's Amazon List of Wants (entertainment, etc). LINK: https://www.amazon.com/hz/wishlist/ls/IKQE3WMVM7SR?ref_=wl_share

Weslee's Wal-Mart List of Needs and Wants. LINK: https://www.walmart.com/lists/shared/WL/f2050aa8-c7e5-4b64-bbad-7c268bd5bb13

Thank you.  Vikki

Aug 18: After and During Seizure

I hadn't been home for too long. I had been out running errands, including picking up some prescriptions that I had troubles getting in on time. Briviact: two different dosages. I gave him the missed pills right away and hoped the delay of only about 8 hours wouldn't be a big deal. (Due at 8:00, given at 4:00).

Boy, was I wrong.

So I'm in my bedroom with the door closed because, you know, covered in sweat. I had a couple fans going ... just trying to cool down.

Weslee bangs on my door. "Mom! Mom!", he cried and boy, it sounded urgent, so I open the door (yes, I was dressed). He had glazed looking eyes, he was drooling, and I knew he'd had a seizure. After all of this time, I, of course, recognize the signs. 

I quickly guided him to my bed and I started the video within seconds so this is it. 

It's obvious that he cannot miss even one dose of his Briviact. That medication is the latest that we added to his lineup, and I'm hoping that during his next appointment, we can possibly up it by 50 mg, and maybe that will help mitigate the seizures. Who knows? It is just a guessing game at this point.

He is now in his safe space (his broken bed). I brought him up some 'dinner' (a string cheese and a cup of strawberry banana V-8 juice.) Protein, dairy, fruits and veg. A super healthy meal, although small.

.......

Weslee needs more brain surgeries for his seizures.  To help, please like, follow, subscribe, comment and share .. PLUS .. please go to his Medical GoFundMe or to our Paypal ... Thank you.

Apr 20: A Week of Meds

Weslee takes a LOT of prescription meds, mostly for his seizures. We have tried a lot of different systems over the years. He needs a week at a time (it is time consuming), and luckily I can trust him to not take too many.

Almost two years ago, he started taking a midday dose of two of his meds. That meant we needed to change systems again.

Once a week, I fill these containers with prescriptions and supplements, like black elderberry and multivitamins. He keeps it in his room, and once a day, pulls that day's container to keep by his safe space, his bed.

Have to work with what we can, right?

.....

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.

Med Count

What does it say about me that when Weslee brings his nighttime meds to me to check ... because he dropped them and wants to make sure he doesn't miss any ... that I can just look at them and know?!?

Five seizure meds plus various other pills and supplements.

And yes, he was missing just a supplement, so no big deal.

Typical Day for Epileptic

Weslee wakes up at 8:30 every morning. (It's an autism thing). He goes downstairs to eat breakfast (weekdays he has cinnamon Life cereal, weekends he has gluten free donuts and a blue machine juice). He takes his morning seizure meds at 9:30. Goes back to his room, and at 10, he comes into my room for his epidiolex (prescribed CBD) oil. Then he goes back into his room where he usually takes a nap...anywhere from 30 minutes to over three hours.

It doesn't matter how much he slept at night. His average nap is over two hours.

Then at 9:30 at night, he takes his night seizure meds and at 10, his night epidiolex.

I hate that despite him taking six different seizure meds and me tracking all of his different kinds of seizures, times, lengths, symptoms, post-ictal length, etc ... that we (1) can't figure out triggers, (2) can't figure out where in his brain they are happening, despite 12 or so surgeries and much of his brain gone.

Anyhoo...here is a pic I snapped of him napping earlier.