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

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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.

Sept 15: Struggle

TRIGGER WARNING

I have been putting off writing this. I didn't want to open up our lives up completely to anyone, and never promised to.

But I need to (kinda) now, because I am struggling. Major big-time "I am so lost" outta-options struggle.

I am quite ill. I had exploratory surgery this past Friday. They nearly postponed it again because my platelets are still quite low. We discussed the pros and cons, and decided the need to get a diagnosis was greater than waiting for my platelets to come up another 19 points, or the possibility of me bleeding out. Am waiting for results of biopsies.

That is me. In pain. Still bleeding from surgery. Dizzy. Overwhelmed.

On to Weslee. His weight is still plummeting. He won't eat barely at all... not even his fave foods. He gets super angry when I even suggest he grab something. Says he feels out of fuel, and then gets pissed off when I logically explain fuel comes from food. I made him a doc appt for tomorrow; will tell him tomorrow. 

Meanwhile, it is possible that this is his way of self-ending his life. Maybe the constant seizures are taking a toll. Maybe he doesn't want to see me die. Maybe he needs more control over .. anything. Maybe he just doesn't care anymore.

I don't know. 

And I am struggling to not give in to my own demons.

Aug 26: Weslee's Health

Whatever illness Weslee woke up with yesterday was mostly gone today. The chest pain. The trouble breathing. Maybe just a 24 hours thing? So I didn't take him to the Emergency Dept. (ER) but will keep a close eye.

(The pic is NOT him!)

If the illness or whatever from yesterday had been serious, not sure if his shrinking body could have fought it off.

Am glad his seizures didn't increase because of all his body is going through. Praying it stays that way.

Pic of 'my girls'

He still really isn't eating and looks skeletal. Reminds me of just after his first brain surgery. Couldn't get him to eat or drink. By then, our goats had started producing milk, so he got to a healthy weight with raw goat milk, eggs from our quail and chickens, and produce from our garden and the local farmer's market.

(Note: I raised the goats, kept them healthy, and did the milking. The raw milk was absolutely safe .. .. I trust me!! Too bad we don't have the farm anymore.)

Anyhoo... need to order him some size Medium shorts (clothes in general) when I get some money. Even 8-9 months ago, he was in X and XL. Now, he could fit two of himself in each item. Can't walk without holding up his shorts.

(I refuse to consider getting him size Small. Nope. Not gonna happen.)

Meanwhile, my platelet, iron, bleeding and bruising problem is getting worse. If tomorrow is as bad as today was, the trip to the ER will be for me.

Vikki, mom of Weslee

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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 23: Checkup at PCP

I scheduled today's doctor appointment last week when Weslee had another episode of severe abdominal pain. Glad I did, because I also wanted him to check out W's back from last night's fall after seizure number ... 3 (?). [Just a scratch .. plus maybe some bone bruising .. keeping an eye on it.]

His BMI looks good for now .. but .. less than a year ago, W weighed 188. A bit chunky but not nearly as bad as me. Today ... 149 pounds!!! A massive drop of 40 pounds. Why? He just doesn't feel like eating. 

He left a pint of chocolate chip cookie dough ice cream sit in the freezer for over 4 days before eating. If you know him at all...that is nearly impossible. His longest stretch of saying no to ice cream prior to that was maybe 48 hours.

When I cook, I try to make his favorites. Sometimes he will even turn those down.

Weslee even said no to carrots, strawberry/banana juice, and pasta alfredo!

The PCP asked all kinds of questions to try to ascertain if he is depressed. Nope, not that.

The weight loss is just one more thing to watch. 

He has also developed headaches. The seizures are mutating...half the time I can't figure out what kind they are. And the sudden fits of anger and tantrumy behavior is overwhelming.

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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.