Day 5 – A Place That Makes You Happy

Well, I don’t need to write much about this one tonight. I am in the place that makes me the happiest in the world…HOME.

I am so thankful that Belinda and I made it safe to Washington DC and back home. I am thankful that the surgery went well and that she can eat easier again. And I am so, so grateful to be back home.

I know a lot of places make me happy. But this one makes me the happiest of all.

Just got a call from Jill at the hospital…they had a cancellation and Belinda needs to be the hospital at 10 am! That’s one hour and seventeen minutes from now. I need to get an uber ordered and she just got up and started getting ready. She can’t have anything to drink this morning now, but she will be done earlier so she won’t have to have clear liquid all day today! Jill said once she shows she can drink okay after the procedure, she can go back to a regular diet. I’m not sure what time the procedure will be, guessing noon here since we get there at 10. That’s 11 back in the OKC. Here we go!

Your favorite season.

I’m glad this was the prompt for today. I’m pretty worn out already from the update about today, even though I just realized I forgot to put the pictures with it. I’ll have to go back and add those in a minute.

Of course my favorite season is autumn. I’m learning Norwegian, and the word for autumn is høst. That’s not really the point, but I learned that recently so I’m pleased to know it.

Fall always takes me back to the days of being new at Northwestern, meeting Ben, and starting our lives together. There’s so many wonderful feelings that go with the fall, like hayrides and bonfires and pumpkins and leaves falling. I was very happy when we were descending into DC to see the fall colors in the trees.

I’m not going to write much more tonight because I am awfully tired and I want to read a little. But I sure do like the fall.

Good news, approval of the tour Belinda wanted to take at the White House arrived today! It will be the day after her surgery. Since it is at 10 am, we should have plenty of time to do the tour, have lunch, and make it to our flight at 4 pm.

Our hotel is only six blocks from the White House, so depending on the weather and how Belinda feels, we might be able to just walk over.

I appreciate Senator Markwayne Mullin and his office staff for helping us get the tour set up. Last time Belinda visited with his staff and we were given a tour of the Capitol (although we cut it short because Belinda was hurting from surgery.) I originally chose to request our tours through Sen. Mullin because he and my grandma share their small-town ties to Stilwell, Oklahoma!

My agent just let me know that she has the submission list ready, and we’re going on sub with The Last Letterboxes on Monday. I’m not sure how I feel. Hopeful, sure, but maybe also afraid to hope too much, for fear of the crash of disappointment that may come?

I want to finish the middle grade novel the month. Preferably this week. That’s pretty fast but I know I’m capable. There’s just a lot of other things happening right now, but when is that not the case?

Homecoming is today. If I get enough writing done to feel satisfied today, I might go watch the parade. We shall see.

I’ve never written that book that starts with the scene in the small-town parade that’s been in my mind for years. I wonder if I ever will.

So I downloaded an app last week, Habitica, and it’s going okay with keeping me more on track and organized. I’m not sure how well it will work long term, but for now, I’m doing okay.

I’ve gotten a lot more caught up on the things I need to do as children’s director at my church. I also have gotten the house a little cleaner and less cluttered. A lot to go on both things, but still. Also doing better with personal hygiene and maintenance, which is admittedly lacking. So for the past six days or so I’ve been flossing daily, remembering to take my medications, and getting more into my writing. I’ve done a creative thing each day and working on my manuscript each day (I did give myself weekends off for that, to avoid burnout). Writing on my lj or here counts as a creative thing, so woohoo.

Anyway, I got the mg manuscript completely plotted out, EXCEPT I don’t know what’s going to happen in one area and it’s annoying and blank. I mean, I know what the kids is going to accomplish but I can’t quite visualize how he’s going to get there. I did stream of consciousness writing about it, I did a walk and talk out loud in my driveway, and I’ve talked to the older three members of my family. Their suggestions were unsatisfying, unfortunately. I did finally think of something that is involved in it, and that’s exciting, but I still don’t have the details and I’d like to get those ironed out before I start. I think that might be what is stopping me from writing. Each of my works in progress have a blank spot and I’m not sure what to do with it, so I stop writing. I don’t know how I did this in the past. Maybe there weren’t any blank spots?

The only other big change is I’m not sleeping as well lately. It’s completely coinciding with this “being productive” thing so I obviously am okay with it but I wonder why. My brain wants to think about things again. And I don’t want to think about things. I want to go with the flow. But I also want to write. It’s a curious thing.

I’m trying something new. It’s the Habitica app. Allegedly it will help me be more productive, actually get things done, and be the person I’ve always wanted to be. So far today I have cleaned for 10 minutes, taken care of my emails, and ate a healthy meal. I’ve also showered, shaved my legs and painted my nails, which is kind of amazing, but I don’t get points for that. I would if I had set those things up as tasks but currently I’m still wanting to figure out the app, and I don’t want to get in too deep and then give up on the whole thing.

I’m also supposed to do 10 minutes of cardio, which is obviously going to be walking but I’ll try to be brisk about it, and practice a new creative technique. I don’t even understand what that means. It sounds like if I was an artist I would try a different brush or way of drawing or something. But I am a writer. I thought about it a while and decided that for me, I’m going to attempt to write a limerick, especially since it’s St. Patrick’s Day. Now, I’ve written limericks before, but not that often, so it is sort of a new technique for me. Also, my monthly goal list includes writing a poem, and this will take care of two birds with one stone.

And then I’m going to go in the kitchen and eat a tuna sandwich, which I think isn’t really eating healthy but also isn’t junk food, so I don’t have to take a positive or negative hit for the app. I’m such a perfectionist that I hope I’m doing this right but I think the idea is it’s supposed to work in a way that works for me, so I guess whatever I say is right is right. As long as I’m honest with it.

So, the limerick. I decided I’d just try to write it here, as part of the blog post. The tricky part is to make it funny without it being too awfully vulgar. Maybe I can write a funny one without any vulgarity. We’ll see.

There once was a lady so hairy,
That some called her legs wrong and scary.
She gave up on shaving
Instead started braiding
And hog tied her worst adversary.

Okay, I’m very happy with this!

Happy New Year!

It’s a few days in, but it’s not to late to say that, I don’t think. Lenora’s birthday is tomorrow, so we’re really not quite through the 12 Days of Christmas, and our holidays officially end in our house after Lenora’s birthday, which conveniently falls on Twelfth Night.

Anyway, not much to say, but I am back at the keyboard and I’m writing. I feel very positive about this year. I think this is the year that I make great strides in my writing again. I’m ready.

This week I was a reporter again for a bit and put together this story about a great kid in my children’s church group who is in need of life-changing specialized surgery. It ran in the Tuttle Times newspaper on Sept. 17, 2020. This is the article in its entirety as submitted to the newspaper.

###

Jonas, we’ve got your back!

Local boy needing specialized surgery finds support in the Tuttle community

By Regina Garvie

A Tuttle boy is in need of life-changing surgery – and his friends and family are stepping up to help make that surgery a reality.

Jonas Lee turned twelve last week, but he was only five months old when he was diagnosed with Progressive Infantile Scoliosis Disorder. And over the years, the condition hasn’t gotten better with treatment. It’s worsened.

In 74-94 percent of scoliosis cases diagnosed in infancy, the disorder resolves itself as the child grows. However, cases that don’t resolve on their own quickly become debilitating, pushing on vital organs and causing complications like asthma, irritable bowel syndrome, and other issues.

“It also changes the way the ribs and chest cavity are formed because of the immense stress caused by the spine,” said Jonas’ mother, Hollie Lee. “Infantile scoliosis accounts for less than one percent of all idiopathic scoliosis cases. It is even more rare for it to be progressive.”

Jonas’ scoliosis also deviates from the norm because most cases curve to the left, but not his. It curves to the right.

Jonas began his proper treatment journey with tethered spinal cord surgery by a neurosurgeon at OU Children’s Medical Center when he was 20 months old. Before that, his parents had taken him to multiple orthopedic specialists and pediatricians who all told them to “wait and see,” which they later learned was the worst thing to do with a progressive scoliosis case.

After Jonas recovered from that first spinal cord surgery, he was put into a trunk cast that was changed every six to eight weeks in the operating room.

“Once that orthopedic doctor decided he was ready to put Jonas in a brace instead of a cast, we knew we needed to find a more experienced doctor,” Lee said. “Time is of the essence and his back was not going to fix itself. We were determined to seek the best non-surgical treatment available for him.”

That decision led the family to Shriners Hospitals for Children in Salt Lake City, Utah. From then on, the family traveled to the Salt Lake area multiple times each year for new casts and eventually bracing. In 2017, Jonas’ doctor retired, and he began seeing an orthopedic specialist in Philadelphia, Penn. at Shriners Hospitals for Children, and the Lee family began looking at different options.

“We began preparing our hearts and minds for a new procedure called Vertebral Body Tethering, or VBT,” Lee said. “VBT is a fusionless surgery that preserves the patient’s mobility. At our normal checkup this July – which was delayed two months per Covid – Jonas’ back had progressed while using his brace 23 hours a day. It had gone from around 60 degrees last summer to 76 degrees.”

Because of the dramatic increase in curvature, Jonas is no longer within the parameters for the Shriners Hospital to perform VBT. But instead of giving up hope, his family refocused on another surgery, Anterior Scoliosis Correction (ASC). ASC is very similar to the VBT surgery, with one main difference. With ASC, the doctors will be able to correct all of the rotation in Jonas’ spine while in the operating room.

“The rotation is really what causes scoliosis to progress,” said Lee. “It is very much a 3-D condition, which is mind-boggling when you think about a curvy and twisted spine. There are only a handful of doctors in the entire world trained in ASC.”

Because Jonas’ curve is so large and rotated, there are even fewer doctors that will perform the surgery on him. But a group of doctors in New Jersey have a private practice where they specialize in ASC and train other doctors in their technique. They also regularly publish medical journals on ASC.

According to the doctors’ website, spineandscoliosis.com, in the ASC surgery titanium pedicle screws are placed on the outside of the vertebrae that are causing the scoliosis and a rod-cord is attached to each of the bone screws in the vertebral bodies of the spine. When the implants are tightened, it corrects and straightens the spine. The affected curve(s) show an immediate improvement right after surgery, and continued improvement over time as the spine remodels.

And time is of the essence. “It is very important that Jonas has his surgery sooner than later. With each day, his back continues to curve more and more,” Lee said. “He is very tall and thin so it is hard to see his deformity through his shirt and his brace. When he is not in his brace he is in a great amount of pain. Partly bone pain, but mostly muscle pain. His muscles have never really had to hold his trunk up; that has always been the brace’s job.”

Lee said that they have good medical insurance that will cover the hospital stay and the anesthesiologist, but because the doctors are considered out-of-network and in a private practice, there is no “write off” of fees once the insurance decides how much they will cover.

“A deposit of $35,000 is required up front for the surgeon fees,” she said. “We also had to sign a promissory note stating that no matter what the insurance ends up covering, we will be responsible for whatever amount is remaining and will pay it within four months of the surgery date.”

Despite the huge expense, the Lees have moved forward, and Jonas now has a surgery date of Oct. 14. Due to Covid, they are required to drive there instead of fly, which will be about a 22 hour drive. They will also have to quarantine for two weeks prior to surgery.

Although he has been in treatment for his spine since he was a toddler, Jonas has always been as active as possible. His mother describes him as “an old soul” who loves fishing, music, playing the drums, playing his violin/fiddle, kayaking, water sports, hunting, and camping.

“He’s very adventurous,” she said. “Even when he was a baby he would scream if I brought him inside from being out on the back porch.”

Jonas has been homeschooled since the middle of first grade and started Epic Charter Schools last August.

“Epic has been a perfect fit, because he is still able to go on camping adventures and do his schoolwork,” Lee said.

Jonas is also the pitcher and team captain on his baseball team, wearing his back brace while he plays baseball but hiding it under his jersey. His team won first place in the Canadian Valley Baseball Association in 2017.

Lee also describes her oldest son as very humble. “He would never tell you that he could play “TNT” by ACDC on the drumset at two years old,” she said. “He has always been able to keep perfect time with music.” The Lees are both drummers, so they recognized Jonas’ talent early on. He is now involved with the Oklahoma Homeschool Bands in Oklahoma City, where he plays percussion in band and violin in orchestra.

The Lees have lived in Tuttle for 10 years, after moving here when Jonas was a baby so he could grow up in a small town with a close-knit community like his parents did. “We wanted a home where we could let our kids ride their bikes around the block and grow a big garden,” Lee said. Jonas attended Tuttle Schools for several years before switching to homeschool. He also was involved with Cub Scouts for a time before deciding to focus on baseball. The family attends church at True Oak Fellowship.

Jonas’ dad, Jason Lee says their faith in God has helped them through many trials over the years.

“God has a way of revealing Himself to you in challenging life experiences if you lean on Him and trust Him,” Jason Lee said. “I am confident that in and through Christ is the only way we’ve all gotten through this. We only need to look back and see what God has done for us to know and have confidence in what He will continue to do in Jonas’ life, and the further back you look the farther ahead you can see. Don’t get me wrong, it wasn’t always super difficult. In fact, we have adjusted to a level of normalcy with the brace. But I can remember our church family laying hands on our baby and miraculous surgeries. We could really write a book full of testimonies.”

In addition to walking by faith, the family, including the couple’s other son, eight-year-old Jude, have found solace in the outdoors. “Jason has always fished and hunted and Jonas really enjoys it, so we spend a lot of time camping and just enjoying God’s creation,” Hollie Lee said.

Jude has a different, unrelated rare bone disease, Legg Calve’ Perthes Disease, but both he and Jonas continue to stay active even with their physical issues. However, what they can do is limited. Hollie Lee is looking forward to how the ASC surgery will improve Jonas’ life.

“Jonas has never been allowed to play on skateboards, trampolines, pogo sticks, or anything that causes compression to his spine. Since he has to wear his brace 23 hours a day, he can’t just go jump in the water when it is hot outside,” she said. “The brace straps in the back so he has to have help getting it off and on properly. With him being 12 now, he’s pretty tired of his mom or dad having to help him with it every morning or night.” Jonas wears a different, more aggressive brace while he sleeps. The night brace isn’t designed to wear while standing because of its rigidity. “Jonas is incredibly excited about the idea of not wearing a brace,” Lee said. “The few times he had been allowed by his doctor to sleep without it, he has gotten much better rest.”

Currently the Lees’ fundraising goal is the $35,000 deposit amount for the surgeons. So far, the family has raised around $15,000 through donations on their GoFundMe page, personal checks in the mail, and other means.

The Lees’ church family is also determined to help the Lees make their hopes for Jonas’ health come true. They will be hosting an Indian Taco and Silent Auction Fundraiser this Sunday, Sept. 20 from 11 a.m. until 2 p.m.

Church volunteer Patti Lamle said that there will be multiple ways on Sunday that the community can show their support for the Lee family.

“We will be selling Indian Tacos for $10 each,” Lamle said. “People can drive through to pick up or dine in.” There will also be raffle prizes, silent auction items, and t-shirts for sale, and all proceeds will go towards Jonas’ surgery.

Lamle said that the church hopes God will bless their efforts and provide enough funds to help the family.

“The Lee family is a treasure,” she said. “They serve the Lord with their whole heart. They are a true asset to our community, church, and their friends and family.”

Hollie Lee said that she was grateful for the love being shown by the church and community.

“We are consistently blown away by the support we have from our church family at True Oak Fellowship,” she said. “Our motto is ‘Love God, Love People, Be a Servant’ and our church family has had Jonas’ back since the beginning of this journey. Love, support, and the Holy Spirit is oozing out of the walls at True Oak. I know that probably sounds cheesy, but that is the best way to describe it! Jonas is a bit embarrassed by all of the attention, but he knows it is out of love. He is extremely thankful.”

To help with Jonas’ life-changing surgery, True Oak will be open for the fundraiser this Sunday, Sept. 20 at 20 Worley Creek Drive, 11 a.m. to 2 p.m. Those who cannot attend or would like to give directly can send donations to the family’s GoFundMe page at https://www.gofundme.com/f/jonas-we039ve-got-your-back or by sending Paypal donations directly to the Lees at holliemlee@gmail.com.

BREAKOUT BOX:

We’ve Got Your Back, Jonas! Fundraiser for Jonas Lee

$10 Indian Tacos, Silent Auction, Raffle, T-Shirts

Sunday, Sept. 20, 11 a.m. – 2 p.m.

Drive-through or Dine-in

True Oak Fellowship, 20 Worley Creek Drive, Tuttle

Or donate directly

GoFundMe: at https://www.gofundme.com/f/jonas-we039ve-got-your-back

Paypal: holliemlee@gmail.com

PHOTO CUTLINE: The family of twelve-year-old Jonas Lee (right) is raising $35,000 so he can have the life changing surgery he needs. His parents, Jason and Hollie Lee, and younger brother, Jude, along with Jonas, will all be at True Oak Fellowship in Tuttle this Sunday for an Indian Taco and Silent Auction Fundraiser to help them reach their goal. Jonas was diagnosed with an extremely rare form of scoliosis as a baby and now needs specialized surgery to help him live life to the fullest.

PHOTO CUTLINE: Jonas Lee’s spine now has a 76 degree curve. Without life-changing surgery the curve will continue to worsen as time passes. Jonas’ type and degree of scoliosis is extremely rare. A curve of 10 degrees is present in about three percent of the nation’s population. A curve of 30 degrees is present in about 0.3 percent.