A Better Place

It has almost been a month since Katie was discharged from the hospital. Knock on wood, she is in a much better place than she has been in the last few months. We have made more medication adjustments but very slowly to decrease side effects. She is eating more and sleeping better. Her balance has improved as well.

We had a follow up last week with Neurosurgery. We haven’t been followed by them since she had her VNS implanted. With the worries about changes in the brain and CT scans from her last hospital stay, we wanted to be sure all was well and no further testing would be needed. The appointment went well and he recommended she have another quick CT scan while we were already at Duke. He wanted a scan done while she was doing well to compare to the scans done in the hospital. Thank God! Thank you all for the prayers, cards, emails and meals. We really appreciate it.

We have one more appointment at the end of the month. This will be a follow-up with the GI/Liver doctor. I am certain they will get labs done to see how the liver enzymes are behaving. I’m sure the other main reason for the appointment is to check on her reflux issues and see if she has put on some weight in the past month.

Katie has been back in school full time since mid February. The restrictions have lightened a bit to allow some in-person learning for all grades. We will see if it sticks. Roy Cooper may decide to throw another curve ball. Last week Nathan got to go Thursday and Friday. For now, the plan for the remainder of the school year is to learn virtually M-W and attend class Thursdays and Fridays. If you ask him about it he will tell you in his words “this is exhausting”. I can’t say I blame him. Getting up at 5am to shower and put on real clothes to go sit in a classroom for hours does sound pretty exhausting. Especially after waking 15 minutes before class to log on to a virtual session. The commute is 20 feet from your bedroom, the snacks are endless and you get to use your very own private bathroom. Such is life. Pre, during and post pandemic – he can say he has experienced it all and he gives in-person learning 1 star.

Many have inquired how I’m doing. I am great actually. I am glad Katie seems to be heading in the right direction and restrictions are lightening up. I have been trying to get to the gym as much as I can. Virtual learning and doctor appointments have not been very conducive to getting back in shape. I am just happy my tiny gym is open. They are only open in the mornings and the class sizes are limited but its great just to have the option of going when I can. It is usually the same 5 or 6 of us that are consistent these days.

One young mom in our small crew is there every day for at least 2 hours. I call her Gym Barbie. Gym Barbie is golden blonde and very perky. She comes with matching workout clothes and glittery bag. In her bag you will find a Premier Chocolate Protein carton, earbuds, workout gloves, towel and gallon-sized turquoise water bottle with matching turquoise straw (very environmentally friendly). Other accessories included but are sold separately: white Land Rover, treadmill, free weights and more matchy match yoga/workout clothes and shoes. She’s adorable and very fit.

Then there is me. I definitely do not have my own Barbie inspiration. If fact I barely remember how to behave in social situations. I usually shlep my way in from the parking lot fumbling with my keys, water bottle and bag. My hair is in a curly knot on top of my head. My clothes do not match. My shoes do not match my workout clothes. My sweat towel does not match my clothes or shoes. My gym bag does not match my shoes, towel or workout clothes. I hop on the exact same treadmill each and every workout. To keep myself motivated I treated myself to wireless earbuds so I can watch TV on my phone while I’m on the treadmill. I would never make it through cardio otherwise.

My show of choice for these hour long cardio sessions has been Impractical Jokers. Yes, I know that makes me very mature. If you aren’t familiar, the premise of the show is 4 guys that grew up together film each other doing ridiculous pranks. They take turns for instance working at a fast food drive-thru or the reception desk of a doctor’s office with an earpiece and have to say what the others tell them to say. If you can’t say or do what they tell you, you lose. If you lose you are punished with doing something even more outrageous. I know it sounds dumb. It is dumb. I have the maturity of a teenage boy. But in the name of working out – whatever gets the job done is what gets the job done.

The only problem I have encountered in my routine is that I forget where I am some days. A few weeks ago, I was really feeling strong and pushing myself. I was definitely in the ZONE working out and watching my show. I was feeling good. Next thing I know there was a scene that got me so tickled that I cackle laughed, snorted, peed a little and then almost went flying the back of the treadmill. Good news it I managed to keep my balance and because I’m such a hot mess anyway no one even seemed to notice or care. Yay me!

That’s all I got this time, friends. Stay tuned. Anything can happen tomorrow. The possibilities are endless. Stay well.

Can you put yourself on MUTE?!

Week 2: Remote learning, Anywhere, USA

Hello, how is everyone? Can you hear me? Can you see me? You are on mute. You and NOT on mute. Can everyone PLEASE put yourself on mute. Sara, is that your Grandmother in the kitchen? Can you ask her to put pants on? Stop touching your sister, please. Alright, before we get started lets stand up, move around and stretch. Ok class, it’s time to come back. Class? Please sit down. I need to share my screen. How do I share my screen? Am I doing it? Sorry, I’m trying to put some of you in a break out session. Don’t touch anything! Did I do it? Can you see me? Where did you go? Wait, where did I go? Can you see me now? You have to take yourself off mute. Ugh, lets take another break.

Are we having fun yet? Just remember…..We are all in this together. Be patient. Be kind. Help support each other. Rise up to the occasion. Think positive. Give grace. Forget PANdemic – we CANdemic. Gag….me…please!!!! I can’t even get through reading that without rolling my eyes.

Give it a week, they said. Just a few hiccups. Zoom was down but now it’s back. Think of online ticket sales for a Bon Jovi concert – every red-blooded American logged on at the same time and crashed the innerweb. If you are a parent to a school aged child, you are in virtual hell right now….virtually 5 days a week for HOURS. Ok, to be fair this is only Day 5 of Week 2. I’m nothing if not dramatic. I wanted to add in some stats about how many children are learning remotely right now because of continued Covid-19 safety measures but I don’t think anyone reading my posts comes to me for numbers and stats and pie charts. You can do your own research but it’s like a bajillion at least.

My son Nathan is a sophomore. He is your average, run of the mill, easy-going, smart kid. He can organize his To Do:’s, take notes, ask questions, and is tech-savvy. If he has to ride this virtual wave through the entire semester, he will be fine. Sure there is the social aspect but academically it will be ok for the short term. He has a roof over his head, internet access, food in the fridge, school supplies and parents vested in his success.

Unfortunately, not all students have this. Schools here are still working out the kinks to get kids computers and help everyone get internet access. The struggle is real. Buses are being used to deliver meals and teachers and staff are spinning on overdrive to keep all the gears turning. I heard this soon after the quarantine began; “We may all be in this together but we are not in the same boat.” Well said. If you can afford private school tuition, your child is most likely getting in-person live lessons in a school building with desks and chairs and books and smart boards. The rest of us are just trying to get by and make the best of Education: 2020. Not every student has a parent that can work from home. They may not even know where rent money is coming much less how to orchestrate an in-home school environment. Many are not familiar with technology and may be confused by all the links to access the information necessary to learn. Perhaps they have multiple children of different ages and abilities all trying to have zoom meetings around the kitchen table. All the while with a new baby crying in the background and an elderly parent that also needs attention. Distractions and clutter galore. Complete mayhem. Mission impossible.

My 7th grade daughter’s virtual experience has been quite a learning experience for both of us. Katie is in an Exceptional Children (EC) classroom with only special needs children and trained special needs teachers and aides. Lord, pray my strength. These children may have physical disabilities, social and emotional problems, learning disabilities, chronic medical issues or overall global delays like my daughter.

Thankfully, I am able to be here for her. She can’t logon to the computer, use the mouse, or get herself on to her virtual lessons. She has no idea if she is on mute or not or even what that means. Once I get her logged in, the challenge continues. Not every parent is able to sit side by side for their child’s lessons. In addition to having special learning needs, these kids may be alone in their room trying to access learning by themselves. Some families experience a language barrier that only increases the learning gap more. Special needs children especially have trouble paying attention and staying engaged watching a computer screen for hours a day.

In addition to receiving synchronous and asynchronous (stay with me) virtual lessons, these kids get related services that may include physical or speech therapy to name just a few. A speech therapy session isn’t so hard to imagine as a virtual lesson but other therapies take on a new set of obstacles. Katie receives physical, occupational, vision therapy and orientation and mobility sessions. Simply put, an example of what one of these sessions may look like could be an 8 minute Zoom meeting. Physical therapy over the computer. I’ll be honest, I’m still sitting on 2 emails from school therapists because I know what they entail. Remote therapy sessions. Graphics of how complete a strength exercise with a caption under each picture. Translation: Mom therapy. Mom is now teacher, friend, disciplinarian, school nurse and therapist.

The most critical therapy for Katie right now is physical therapy because of her new leg orthotic. Thankfully I have the means to take her to outpatient therapy so she doesn’t fall behind in mobility during this unique time we are all living in. Make no mistake: not all kids have this option. These kids need to be in school. They need staff trained to work with their unique needs. They crave seeing their teachers and friends. The can’t wait for the bus to pick them up. They can’t wait to “order” from the cafeteria lady and throw away their own trash. They can’t wait to raise a hand and answer a question or tell a joke and get a laugh.

This is no one’s fault. It is what it is and we are all doing our best. I don’t know the right answer and I am so glad I am not in charge. It’s a balance between keeping kids and staff safe and getting back to in-person learning.

Just to mention, I personally know some of you are loving remote learning so much that you have decided to homeschool. Your kids are thriving and you found a new love of teaching your kids the curriculum you want on your terms. My hat is off to you! I have a couple students to drop off on your doorstep. Just kidding…no, really.

Here is a great example of how teachers make learning fun during remote learning. Enjoy the dancing spider. He’s got moves.