Jul 26: Start the Day Early

I had finally gotten to sleep around 4 a.m. when Weslee burst in at around 6:30. He had already had one 'medium plus' seizures and then a second before he could get to me.

I hate to say I didn't hear either one. We have so many fans going that it is difficult to hear anything. And it is still sweltering.

The whole day was full of seizure clusters. Taking an extra clon didn't help. The nasal rescue helped for a little while.

He is so frustrated with the dag-blasted seizures, as am I. I wish I could do more for him.

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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 22: Cluster of Seizures

Weslee hadn't really had many bad seizures lately. Some absence, some simple partial.

I was upstairs whrn I heard a crash downstairs. By the time my tiny brain woke up to remind me what that sound was, he was coming out of it. And unfortunately, had just opened a bottle of juice, which I tried to clean up. Seriously, a mess.

It sounded like a clonic or absense (paralyzed) followed by a gelastic.  But at least he didn't get hurt.

I made him run up to his safe space (his bed), and in less that 15 minutes, I caught the end of ... something. looked like a kinda short gelastic. I gave him a rescue nasal spray. Had a feeling he wasn't done.

Guess who was right.

(Vid shows the end of seizure #2.)

About 20 minutes after the 2nd one, he had come into the hall outside his bedroom. Started to tell me he was apprehensive about going into the bathroom (to brush his teeth). His voice trailed off. I looked up and started to sprint. He fell backward, stiff as a board, then momentum threw him into bathroom. His back shows the tale. 

He had an absense (or clonic or Todd's paralysis) followed by a drop seizure.

Even on his worse tantrum-ing day, he doesn't deserve this.

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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.

Jul 3: Is Dollar Tree Giving Up?

Weslee is back having clusters of seizures again. Mostly gelastic. One was at the top of the stairs; thankfully he heard me scream from the first floor to [ MOVE! ], and did so before the seizure controlled his body and made him lose his balance.

I am usually quick enough to grab his shirt or place my body to where I can stop/slow momentum. My messed up spine is witness to that. 

I couldn't this time.

Our next home will NOT have stairs.

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Made from D.T.
nail polish and paints.

When I started crafting and painting (to calm myself, and as a relief), I discovered the Dollar Tree. Their prices mostly range from $1.25 - $5.00, which was decent. 

I found the basics, like paint, molds, nail polish (too cheap to wear but perfect for painting). I tried working with cement and Plaster of Paris then to painting and resin. As a beginner. I didn't care about quality. I found so much of what I needed.

There are four locations of the Dollar Tree near me. They mostly have the same products, but a few are different. Plus, there is only 1 where the personnel care about appearances and cleanliness.

Are they looking for a reasin to close stores? Giving up the biz? Did they stop caring?

The newest location to open is actually the worst. The one in the vid was the first I discovered in this area.

If Weslee was still into coloring and such, he would love it there. I do pick up things from time to time for him to make my birthday, Mom's Day, and Christmas cards. I don't ask for much from him ... just a hand-made card. I treasure those.

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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.

June 20: Plans Change

So much for my surgery. 

Went in yesterday to see if the iron infusion I got on Monday, and the 2 units of platelets I got on Tuesday worked.

As you can guess from the title of this post, they did NOT help. My numbers actually went down, not up. So disappointed.

Platelets on Monday were 48.  Yesterday, Thursday, they were 24.  HALF!!! If I was to get the schefuled surgery today, I would probably bleed out on the table.

My oncologist / hematologist is baffled, as is the surgeon.

I am now scheduled to get more iron via I.V. next week while they try to come up with a solution to my platelet problem.  Argh!

Guess it was for the best.  Weslee started having a LOT of seizure clusters last night and again this morning. He fell back asleep before 10 this a.m. and slept for another 1.5 hours. Maybe he was picking up on my stress? He does that sometimes.

It is just after 2 p.m. and he fell asleep again. Seizures are more than the disruption of the brain's electrical impulses. It can be physically draining as well.

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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 15: First Infusion

I mentioned that one of my own health situations is low platelets and white blood cells, and now iron deficiency. Since I am having a bit of surgery later this week, which is always a special concern with the possibility of my bleeding out, I 'get' to have an infusion at my oncologist's office. Possibly two. Depends on how the first one goes.

Talked Weslee into coming with me to both infusions.

Because each infusion may take half a day, I need to bring him with me. Can't leave him alone for that long, especially since his seizures and clusters of seizures can strike at any moment. (He has no warning aura.) I have already caught him a few times starting to fall as a seizure hits him on the stairs of our little over-priced townhome. Nope. I don't like that thought-picture at all. He likes to be independent but as he is 28 going on 12 (autism + stroke side effects), his independence is just an illusion. Smoke and mirrors.

 

(A friend is driving me to the hospital on surgery day. She and Weslee will go do their thing... maybe get lunch, see a movie, visit a bookstore, etc. She is so great for him. Very thankful for her big heart. We met when Weslee was less than a year old. The three of us became friends. It has been 27/28 years.)

Geez, I feel old!

Anyhoo, to keep us busy during the infusions, while we sit quietly, probably surrounded by people getting chemo, we are taking tablets, phones, chargers and snacks.  Might have to bribe Weslee with take out food afterwards. Here ... let me just squeeze this turnip....

Let's hope this week will go smoothly. Keep us in your thoughts, please.

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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.

Apr 16: Minecraft vs Busy Busy

Today, one of the best friends ever to cross into my life ... she took Weslee to see the new Minecraft vid.  He always takes his rescue meds and a bottle of water. They made it through the movie and end credits, picked up lunch and came home. Not 30 minutes went by before a seizure cluster started. Well, fun while it lasted.

   

VS

I had plans for my few alone hours, but pain attacked. So, first I took some pain meds then took a nap. A glorious 2 hour nap. Then I went to my craft area, where I painted wall decor / coasters, and checked my Easter scenes.  (Too late to list on etsy now).

Might list them anyway.

Well, my pain is slamming back. Pain pills don't work very well on me anymore, so I am gonna go to bed!

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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.

Small Cluster of Seizures Followed

Because of his lack of sleep the night before, yes, Weslee had small pockets or clusters of seizures. I can only say I am thankful none were tonic-clonic (grand mal) or the other bigger ones.

He was still tired when he got up, but couldn't nap. I don't MAKE him nap, but having constant misfiring in the brain can drain a person.

In other news, my increased rent just took effect. I had to weigh the extra $150 per month with the cost of moving. Staying won out. That leaves us only $450 per month for other expenses, like meds, co-pays, food, utilities, etc. I guess I can forget about necessary car repairs. Or insurance.

One more quick thing: I will be so relieved when I can finally get a resolution for one of my bleeding issues. Hope today's appointment is a step forward for that.

Well, it sounds like Weslee is up and cranky, so have a great day.