Friday, May 1, 2020

Happy Life Day

Today is our anniversary.
 
One year ago today, on May 1 2019, my son Weslee entered the hospital for an exploratory brain surgery called SEEG. He had a very rare side effect to a seizure med that caused massive brain bleeding during the surgery, so he had a stroke. He was put in a ventilator, and before he left for a Neuro rehab hospital at the end of May, he had had 8 more surgeries. He came home, finally, after a total of 35 days, still relearning to hold a cup, talk, walk, think, etc. 

It has been a struggle this past year. He still uses a cane to walk, tires easily, has to take a nap almost daily. He has huge gaps in his memory, has developed a facial 'tic', and still has the brain drain (shunt).

I am so thankful every day for Mr. Shane, the nurse on the ICU floor who first noticed Weslee wasn't responding to stimuli as expected.  He noticed it in the nic of time; his surgeon said Weslee would have died that night if Shane hasn't caught it, and if the surgeon hadn't immediately taken him back to the OR for emergency surgery.

So...today, Weslee and I will celebrate his LIFE day.



* * * * * *


I sent a dozen specialty cupcakes to the ICU ward (but Mr. Shane no longer works there..bummer). And even though Weslee is taking a nap right now (2:30 p.m.), I ordered a 4:00 p.m."linner" for us from his fave place: Cheesecake factory.

Saturday, April 18, 2020

Something in Common

My sweet boy is very firm about what he likes... from food to movies to music to clothing. I don't like that he prefers the horror genre of movies, but since he often balances that with Disney or Pixar, I can't say much...this epilepsy has changed him.

BUT I came across this song the other day and last night, practically begged him to watch the vid/listen to the music.

I asked him to close his eyes to listen, and what did he see..or feel.

Warrior. Preparing for battle.

I have the same opinion.

My 23 year old is an epilepsy warrior. We battle against seizures daily.

This is his new favorite song.

What do YOU see and feel when you listen to Avi Kaplan's "Change on the Rise"?

Link to video:
https://m.youtube.com/watch?v=382BTxLNrow




Monday, April 6, 2020

Keeping Busy During Coronavirus 2020

We took the kids for a bike ride today. It was nice to get out of the house and enjoy some fresh air. The kids and I have been home over three weeks now, and they are starting to show signs of boredom. It's hard to answer their questions about this virus outbreak. A five-year-old and a seven-year-old don't understand why they can't leave the house, go to school, or have playdates with friends. 

Ollie's behavior has been excellent up until recently. I can tell she's starting to become frustrated. Usually, the kids and I are very social and active. We visit with friends and have play dates all of the time. She's even admitted she misses school because she's so bored.  

I can't say this to them, but boy, do I wish I could experience their boredom. Keeping them occupied and from losing their cool is a full-time gig, on top of my full-time gig as a writer! We are just now finally getting some decent weather. Hopefully, the warmer weather can help cure some of our stress and loneliness. There is always more to do outside. 

Homeschooling During the Coronavirus Outbreak:


Homeschool life. 
I am becoming overwhelmed with homeschooling my two kids, and I have a teaching degree. I can only imagine how stressful this is for other families. Both of our kids now have online lessons that they must complete every day on a computer. Doing schoolwork at home is something they are not used to, so it's been a challenging routine to establish.  

Our superintendent indicated that he doesn't seem to think we will be returning to school this school year. As a kid, I would have loved an extra-long summer break. As a parent...not so much.

I think we are taking a few weeks off from writing for the blog for a few weeks while everyone gets their bearings and tries to stay healthy. I hope you all stay safe out there and stay home if you can! We will talk again soon. 

-Abby, guest blogger

Saturday, April 4, 2020

Frustration

Weslee is getting antsy. 22 days in isolation with just me, and he made up an excuse to go next door to talk to the neighbor.

I had to give him a stern talking to: 

"Weslee, you not only have epilepsy, you nearly died last year, are susceptible to  illnesses, and still have the shunt (brain drain).  You canNOT take a chance, especially without gloves, mask and goggles or YOU WILL DIE."

He said he knows that but just wanted to talk about their cat.  

Sigh. I can't keep him locked up. After all, he IS an adult, although his mind is still a child.

Monday, March 30, 2020

Family Quarantined During COVID-19 Outbreak

My kids and I haven't left the house in 16 days. We plan to say home as long as it takes. Through this global pandemic, I feel fortunate that my kids are getting along. I see many parents posting daily updates about struggling being stuck home with their children. 

It's not easy. 

I have two early elementary-aged kids, and I work from home as a writer. Having my kids home with me for the last two weeks has dramatically reduced my productivity. My husband works in the power industry and is an essential employee, so we see him off to work every day. 

We are spending far too much time on screens, but we are also doing a lot of beautiful things as a family. My 5-year-old son helped me cook an entire meal, even sauteeing the chicken by himself, while I supervised. 

My daughter, who is in first grade, started reading Diary of a Wimpy Kid, by herself. We've painted, held Lego challenges, played far too many board games, and snuggled up to many family movies. 

I can't help but imagine how my children will reflect on this time when they are older. 

Quarantine and Rural Living


We live in northwest Ilinois, and our weather is still not the best, which is limiting our time outside. Last night, we spent an hour in our basement in the middle of the night while a tornado ripped through town a mile east of us. Nothing spices up a global pandemic quarantine like a natural disaster. 

My mother lives 15 minutes away from us, but we've had to stay apart from Grandma. She is vulnerable to more severe cases of COVID-19, and my husband has several employees who have possibly been exposed to the virus. 

We are doing our best to be positive during this uncertain time. All of our stores are out of toilet paper and cleaning supplies, but most other grocery supplies have started to stabilize. We are managing better than could be expected despite a prolonged shelter-in-place order in our state. 

School and COVID-19


Our kids have been out of school for two weeks. The first week home, the school supplied paper packets for home learning. This past week was their scheduled spring break. Our school district announced a switch to e-learning this week. As an educator whose not currently teaching, I am curious about what this will look like for a 1st grader and kindergartener. We've been reading, practicing our sight words, and trying to keep our bodies moving. 

COVID-19 and Doctors Appointments


Ollie's pediatric neurologist is in Chicago. The CDC thinks Chicago will be the next hotbed for COVID-19 after seeing what's happening to New York City. We have a scheduled neuro appointment coming up, and we've started talking about precautions to take or postponing the appointment altogether. 

We are not sure if we can postpone this appointment for her. We have discussed being prepared should Ollie need to see her neurologist for her epilepsy in the heart of downtown Chicago's medical district. The two best options we have are traveling to Chicago and using precautionary measures to try and reduce our exposure as much as possible or try and coordinate her testing locally. 

I hope that I can coordinate with our local primary care physician, and our neurologist, who is in Chicago. I want to have her EEG and bloodwork done locally and hold a virtual appointment with our neurologist, perhaps with our primary care physician involved. We don't have a pediatric neurologist locally, which is why we have to travel almost two hours to Chicago. 

This global pandemic is certainly raising many logistical concerns for routine medical care, especially for our vulnerable and rural populations. 

How are you staying busy? 

-Abby, Guest Blogger