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