Spinal Fusion | 20 Years Later

Hello!

In the last several years a lot has happened, I celebrated 10 years as a blogger in 2019, I hit two milestones in last year, starting with my blog turning 10 in October and I entered my “dirty thirties” a month later. For this year, there is a very different anniversary, and I’ve felt weird about it for months. I actually decided to allow myself to write about my thoughts months in advance because I couldn’t get it out of my mind of how it’s been this long since it happened, so I hope you enjoy taking a trip down memory lane today.

I was technically born with three conditions, as you may know I have Arthrogryposis Multiplex Congentia, but this can lead to other problems like babies born with club feet. scoliosis, etc. I happen to have a serve case of AMC with the addition of a club foot, rocker bottom, and scoliosis. I’ve had many, many physical therapies over the years, in the hopes of trying to help make life a little easier. I’ve had discussions about what could be done as far as surgeries go to “fix” my arms and feet, but the only I ever had been the full spinal fusion surgeries in 2002.

Photo by cottonbro on Pexels.com

What is spinal fusion?

Spinal fusion surgery is usually the last option, if your back cannot be corrected after wearing braces for multiple years. The National Spine Health Foundations says, it is like trying to fix a broken bone(s), which is a great way on how to explain it, especially in my experience. What does one do in the hopes of repairing a deformed bone? You have two options: use a splint or form a brace/cast and hope time will heal all wounds… Nice pun action there, right?

I wasn’t a stranger to braces; we still have the itty-bitty braces doctors gave us for my hands. When I came out of the womb, my arms weren’t set in the position at my chest. According to my mother, they were somewhat flat, and the doctors tried to adjust them twice. The first was when I was in incubator, (I was a preemie, so I needed a little help breathing and then of course figuring what was going on with my body.) and the nurses made a makeshift log by folding a single wash cloth and propped me on top of it so my arms would stretched out and eventually my parents were given the braces for my forearms and they a little smaller compared to a standard remote for your TV!

Anyways, I was about five or six years when I was put into the first brace I actually remember. I don’t exactly remember the appointment itself but It had many crooks and crannies, plus it was very decorated with stickers, thanks to my fellow classmates adding a bit of fun to the whole thing! I wore it until the end of third grade and just before I turned 10, I was fitted with a brand-new brace and it was very bulky, this was as close to a corset as I could get, and thankfully I only had to wear it for less than a year because it wasn’t doing very much to help me at this point.

I remember the night before we drove up to Shriner’s Hospital in St. Louis, my mom had my sister and I and we prayed together if it was decided by the doctors I would have surgery, I remembered our expressions being of fear and shock, I mean we were kids, despite the fact we’d go over there multiple times a year since I was about two years old, somehow I hadn’t heard that word “surgery” before, so it was no wonder why I can remember that scene so well because it was a new thing to me, and I didn’t fully understand that whole process until much later in life.

The actual appointment is still hilarious to me because after getting X-Rays done five minutes earlier, the four of us were called next and put into the standard size room with a very used chalk board and different toys attached to the wall next to the giant mirror. Our parents were wrecked with nerves, Blondie was playing, and I was on the cold floor slowly peeking out into the hallway, watching everybody walk around, which is something I still do at age 30, but I noticed there were a lot of doctors looking at a set of X-Rays and I saw my doctor among them. I knew at that moment they were inspecting my images and as I was told to scoot back in the room, I didn’t feel scared but curious of the language they were discussing–I knew something big was coming and it fascinated me!

As I made my way back over to my folks, they suspected the doctor would be coming soon, so one of them lifted me onto that damn bed thingy and I sat there for a short time before they came into the room. How do you know you’re going to have surgery? Well, in my case, about 7 doctors walked right in and they were the same 7 people busy talking in low tones about the process of my spine. There were tears and I cracked a couple of jokes, because that’s how I roll in life. The day we went up there for this appointment had to been in mid-April 2002, because by the start of August, and what would be the beginning of my 5th grade school year, we made another trip which would be even longer as I was now an inpatient on the second, B floor with a roommate by the name of Shelby.

My mom and I tend to argue about the exact date we went up and stayed at the hotel and eventually moved into the hospital to stay. The first night in that hospital was another hilarious experience! I couldn’t get to sleep, because the next day would start on my three-and-half-month journey. We got yelled at by one of the night nurses that the TV wasn’t allowed on at night. This is definitely something you don’t tell a new patient, but we followed the rules, and after my mom went to bed, I decided to play with the controls of my bed, and I had that thing folded up like a taco! I think my mom woke up in the middle of my fun and told me off, because I don’t remember much after that!

The next day, Dr. Lawrence Lenke only came to the hospital on Tuesdays and Thursdays as he spent the majority of the time at the Children’s Hospital a few miles into the city, where I would end going for the second and third surgeries. The first was a smaller one but the one we can somewhat pinpoint the easiest, which is why I tend to celebrate them on this one date, as supposed to the day we left in early November. This surgery was just as important as the doctor and his nurses and techs fitted a half halo made of metal onto my skull. I had eight pins screwed into sections to keep it secured and I was attached to a pole in both my bed and wheelchair to keep myself alignment. I ended up having three surgeries altogether, but I wouldn’t have the actual spinal fusion surgery six days after my 11th birthday.

Over the years, I’ve finally figured out the timeline of everything that happened, both while I was in surgery and recovery, and what was going on at home and school too. My mom and I were separated from our support systems. My dad stayed home to work and stay with my younger sister, she actually doesn’t have a lot of memories of that time, whereas I remember almost everything. I had tons of distractions between school, friends that stayed in our section, the goofy nurses and field trips. I went on more field trips in three months than I did in one year!

A little after I had my first surgery, I got to meet some of St. Louis Cardinal baseball players. My dad was very excited, he thoroughly enjoyed this! I think this and the time a group of motorcyclists came to visit us and brought us goodies. Anyways, I’m not into baseball so I sort of felt silly meeting these guys, but the Cardinals team is a big supporter of Shriner’s Hospital, and visit the kids, and sometimes a group of kids, nurses and people in the RT (recreational therapy) go to watch a game and meet the entire team(s) and I am thrilled they do this. We met with a great bunch of guys, and it was really fun, but I highly doubt Woody Williams still has my autograph but hey you never know! He was very curious of my ability to write with my feet, so we did a trade, he signed my shirt, and I gave him my autograph.

From L to R we have Timo Martinez, Andy Benes (he retired later in the 2002 season!), Mike DiFelice and Woody Williams. Notice the metal halo on the top of my head, and the pole behind my wheelchair. Photo credit: Dona Glambert aka my nana!

It is absolutely crazy that it’s been over 20 years since I had my first surgery, the other two anniversaries will be at the end of October and first week of November.

I could sit here and tell you all of the things that happened, but it would be even longer than it is now, so I am going to stop here for now. If you would like to ask any question about my experiences; while I was staying at Shriner’s, recovering, or anything else, you can email me at gotmeghan.blog@gmail.com Be sure to get the dot in between “gotmeghan” and “blog” before you send your messages! I’d also like to say if you know someone who was a nurse at that hospital, worked in the B section, and remembers anything about the girl who drove her wheelchair with her feet, I’d also like to get in touch with you/them too!

Have you ever had surgery before? What was the location and reason why you needed to have it in the first place? Leave your answers below!

snowflake

REVIEW | Five Feet Apart

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I’m back!

On the day I finished this post, I’d been sick for at least a week and a half. It has been so frustrating to say the least, because at first we thought it was allergies and then three days later, I developed this awful cough and my mom had to get some medicine tablets because I refuse to drink the liquid stuff. Hopefully, this isn’t your only post of the week but let’s not push our luck!

I am very excited to finally chat with you about the film adaption of Rachael Lippincott’s novel Five Feet Apart. I mean, this was the main reason why I wanted to read the book in the first place. Before we continue, I have to say this post will probably have spoilers included, so if you haven’t read the book and want to, I highly suggest you skip this blog post for now.

The first thing–well, there were two actually–I had to tell myself. I literally had to give myself a little talk because I had read the book and I was still reeling from the fact that I cried many times and enjoyed certain scenes within the story. I knew it is going to be very sad and when I finally I made a deal to watch the whole thing before I judged everything that was presented on my TV screen.

What I Really Thought 

So, I absolutely loved the film! I was surprised by my reaction after I finished it because I didn’t think I would love it that much, but yes, I thought it was absolutely beautiful! It didn’t have every single thing, but it had enough that it followed the same timeline from the book, and that was it for me.

One thing that I totally forgot to put into my head while I was reading the book was that hospitals are busy places, as you see on film. However, while I was reading the book, the only professionals that turned up in my head were Barb, Julie and Dr. Hamid. That’s it. I don’t know why I just kept other nurses or random people from entering various scenes. I mentioned in my book review that I used the hospital I went to back in 2002, to draw some inspiration on how to map out this massive space, and the section I stayed had probably three or four nurses at their station. So, we were never without someone there besides our parents of course, so I don’t know how I managed to create a space with only three medical professionals!

Have you watched the film adaption “Five Feet Apart” yet? If you read the book beforehand, did you have any issues with it? Did you like it just the same? Tell me your thoughts about it below!

snowflake

Book Review: “Five Feet Apart” by Rachael Lippincott

Howdy!

One day after I finished writing Monday’s post, I finally finished this book. I knew I was close to being done with it, but I figured I would savor it a little bit!

I came across this book twice – the first was when the trailers of the film adaption were being played on almost every channel and the other was through a fellow blogger who literally tweeted she cried more than she though she would. I definitely had to wait to read this but I can say it was worth the wait! Now I can finally check out the movie and see it lines up with what I was seeing in my head or not.


27774596._SY475_Can you love someone you can never touch?

Stella Grant likes to be in control—even though her totally out of control lungs have sent her in and out of the hospital most of her life. At this point, what Stella needs to control most is keeping herself away from anyone or anything that might pass along an infection and jeopardize the possibility of a lung transplant. Six feet apart. No exceptions.

The only thing Will Newman wants to be in control of is getting out of this hospital. He couldn’t care less about his treatments, or a fancy new clinical drug trial. Soon, he’ll turn eighteen and then he’ll be able to unplug all these machines and actually go see the world, not just its hospitals.

Will’s exactly what Stella needs to stay away from. If he so much as breathes on Stella she could lose her spot on the transplant list. Either one of them could die. The only way to stay alive is to stay apart. But suddenly six feet doesn’t feel like safety. It feels like punishment.

What if they could steal back just a little bit of the space their broken lungs have stolen from them? Would five feet apart really be so dangerous if it stops their hearts from breaking too?

Description from Goodreads.

First Impressions:

There was only one thing I knew about the story, and it was the disability aspect of it. I think reading John Green’s The Fault In Our Stars helped me a lot when it came to understanding cystic fibrosis or CF as it is mostly called in the book. It kind of put things in perspective thinking back to my own lung function, especially before I had my back surgeries in 2002. The technical term is: spinal fusion surgery. If you’re not too queasy about blood, you should check it out online. I wouldn’t surprise me if there’s a video of it on YouTube! Growing up, I was never able to breathe right because my spine was so curved, it was slowly crushing my right lung. What I didn’t know until about a month or two ago, is that my lungs are still undeveloped because of the damage my spine caused.

I think another way I understood the character’s stories is because I spent three and half months at Shriner’s Hospital for Children. Once the author was explaining the layout of the hospital, I was basically using my memory of the buildings I was in for my stay to reconstruct what it could look like, but it wasn’t as fancy as the book though. I also felt like I was both Stella and Will in different ways, because I remember being likeable among the nurses there but also a rebel like Will. As Will had found his way out of the hospital, I escaped once but it wasn’t to go onto the roof, I was actually searching for my mom.

I loved this story for many reasons. Of course, I liked the fact that it brought me back to a time in my life that seemed so small but in reality it wasn’t. Three and half months is a long time, especially when you’re surrounded to new people, other kids with disabilities (and that alone was different!), but on top of that you have the surgeries and recovery time. I was fortunate enough to have all three surgeries be successful, whereas there were others who had the same surgeries but their bodies were rejecting the rods. They had to be there longer. They were away from their families and friends, just like Stella, Will and Poe.

I was pretty pleased on the fact that I could picture everything going on; to Stella in a full handmade hazmat suit to the black truffles! I felt like I was right there with them, which is why it probably made me more emotional because I was around the same environment. We definitely had more than two nurses watching over us. A lot of them were like Barb and Julie, but instead of using a favorite nurse I enjoyed being around and let me tell you, there were a lot! I exchanged them with someone else. I miss them and I think that was the main reason why I didn’t want to put their faces in those characters. I was already emotional by what was happening in the story, I didn’t need to add another layer to it.

Stella had the right idea of vlogging her time in the hospital, and talking about her struggles with CF. And just being a supporter to others with the condition! A part of me wishes I had discovered blogging or enjoyed writing in a journal while I was there. We took lots of pictures but I would love to read what was going on in my head at that time. We had lots of activities, involving arts and crafts, but nothing I did ever survived the past 18 years. Yes, that number is correct. It has been 18 years since I had my surgeries. A lot of family members and teachers I had in school are probably going to be shaking their heads after reading that sentence!

By the time this post goes live, I will hopefully watched the film. I will also write up a review on that in next couple of weeks. I cannot wait to do that next! Okay, I’m done now.

Have you read or watched Five Feet Apart yet? What were your thoughts on it?

snowflake

A-Z Disability Challenge | T : Titanium

I think one of the most popular subjects I tend to talk about, whether it’s online or out in public, is my Scoliosis and time I spent in the hospital to receive my rods in my back to help fix that problem. Honestly, I would like to stop doing it, because I really do speak up about it a lot! So, I’m hoping that this post will mark the end of it for a while.


I was a newly eleventh year old when I finally had my third and last surgery at Shriner’s Hospital for Children in St. Louis, MO. The surgery actually took place at the Children’s Hospital since it was a major operation. My family and I were already familiar with it, because I had my second surgery there too! I’ve never been too sure about how long I was under but I want to say about eight hours. I’m sure some of my family members will comment below the correct time range if I’m wrong.

I spent about three weeks recovering from the “right side” surgery, which surprised the crap out of my doctor, so they made a schedule to get the final surgery done within a week later. It wasn’t that long of a gap between these two, but neither was the timeline to go home either. I feel like I was there for another week and a half because we came home just before Thanksgiving. For the operation itself, it consisted of stretching out my body, inserting the crushed rib they took out during the previous surgery, placing it into small spaces where the cartilage in the spine is suppose to be, afterwards putting the titanium rods in place; plus the metal pins at my hips. The last thing they did besides sew me back up was unscrew the metal halo I had attached to my skull for almost four months. Yes, we asked if we could keep it, but were told various stories about why that wouldn’t be a good idea. .

Now after 17 years, it is still pretty weird to see these really bright objects pop up on recent X-Rays. Even though I’ve only had one done that wasn’t for a check-up at Shriner’s, was even more surreal because for the whole of my childhood that’s where I went to get a look at the inside of my body, besides the time I got an MRI at Children’s Hospital, just before I was to have the second surgery! Other than that, I really forget that I have them. I mean, don’t get me wrong, I can definitely sense when the weather is changing drastically because of my rods and I’m certainly not a fan of going through a metal scanner and hearing it go off like crazy and it’s not all because of the wheelchair!

As time rolls by, the less sensitive my back has become to being touched. I use to try to move away from my mom’s hands whenever she gives me a shower, because it was so painful internally, but I’m happy to say I love being scrubbed down because it acts like a mini back rub too! Of course, I still have days where I do not like to be touched back there and it’s usually because of something that I’ve done, like slept in a different way or popped it, and yes, I try not to do that on a daily basis!

Here’s an interesting question for you, do you have any titanium plates or rods in your body? Also, do you get sick and tired of talking about how you got it like me?

Happy Blog Birthday | Let’s Donate To Big Cat Rescue!

Howdy!

May 13th is my blog’s birthday, and even though the date actually lands on a weekday, I thought about what I am attempting to do, so I needed this post to publish a little earlier than I originally wanted it to, but it’s all good I am making it work one way or another! I’m not planning on having a big celebration or anything, even though I’d like to have one for sometime in October, since it will be 10 years since I became a blogger and I think it would be nice to celebrate that milestone on the lines of my actual birthday too. We’ll just have to see what happens though!

I’ve been thoroughly confused about how old this blog is for the past few months. I’ve told a LOT of people–including anyone who’s read my “About” section lately–that my blog is nine years old, when in reality it isn’t. It’ll actually be eight instead. Sometimes I’m not good at my math, and basketball can only help with so much so let’s be happy I’ve corrected it before this post goes up! Honestly, it doesn’t really matter if it’s eight or nine years, it’s all a milestone anyways, and I’m very proud of myself for keeping it alive and thriving through it too.

This year though, I didn’t want to write a regular uplifting post. As much as I love writing them, I wanted to do something completely different.

On Facebook, you can create a donation fund to your favorite charities. My sister and dad have each created their own for their birthdays, but they’ve raised money for Shriner’s Hospital For Children because that’s where I was looked at all throughout my journey with my Arthrogryposis and Scoliosis, plus all of my surgeries too, so we care deeply for the hospital and what it has done for not only me but my family as well! You would think I’d follow in their footsteps, but no, I’ve had another organization in mind.

I am a big lover of cats. Now when I was younger, I wasn’t. Our family cat had a special bond with my mom and sister then he ever did with me. I loved being around dogs, getting their attention was somewhat easier and being able to get them to come to you to pet them was awesome to someone as small as me! Cats on the other hand, they only come when they want to and they normally don’t like to be petted either. So, growing up I was always Team Dogs! It wasn’t until my sister found a little stray cat that she later named Bootsie did I began to enjoy the company of a cat compared to a dog. Honestly, when she started having kittens that really made me want to be around them more often because I will always have a soft spot for baby animals!

The kittens have all grown up now. Our last litter just turned three in early April, but unfortunately we also lost one of our beloved cats too. My sister and brother-in-law had three of our babies living with them: Gru, Toni, & Otis. I think a week after their birthday, Gru got really sick and started having seizures. They ended up having to put him to sleep that same day. Gru was one of the sweetest cats I’ve ever been around. All of our cats are very affectionate but Gru loved cuddling, being around all four of his brothers: Otis, Samuel, Chipper, and Nolan. He and Nolan had a pretty special bond with one another, Gru had a lot patience so he didn’t really mind the tugging of his fur or ears, he was just a good kitty! The household has definitely been grieving over his loss. After it happened Otis was really sad and Toni, who isn’t really a lovable cat, may have sensed that and showed him lots of love over in the past few weeks. It’s been sweet and weird to see Toni be this way.

Although my love for domestic cats have been a slow process, I’ve always loved big cats! I don’t know why or how it got started in the first place but it’s been interesting to see it flourish overtime into other cats in various sizes. For the past few months I’ve been watching these YouTube videos of the different types of wild cats that they have at the Big Cat Rescue in Florida. They have all kinds but the only breed I’ve never seen there are cheetahs. Big Cat Rescue is basically a sanctuary for big cats that were trained in the circus and are retired, and then you have ones that were rescued after becoming unwanted or become ceased by the police on raids. There various reasons how a wild cat could have ended up there.

I’ve always been a huge fan of lions and tigers of course, but I’ve noticed that the longer I watch their videos my tastes in wild cats have changed slightly. I do love Siberian Lynx, Savannah Cat, and the Cougars or Mountain Lions as we call them. I love each one for different reasons, like the Lynx just look exotic because they have thicker coats and they belong up in the mountains of Asia. I think I purely love Savannah cats because they look like your standard domestic cats but they’re not! And finally the real reason why I am a fan of cougars are because our family cat Oliver was nicknamed a mountain lion by my dad because he would always stand on high places and look so regal doing it too. I also love how big their eyes are too!

I am asking you, my readers to help me raise about $100 or $200 for this great organization. If you cannot donate, that is fine, but I was wondering if you could please share this post with your family and friends so they can see these wonderful cats. They are very beautiful and goofy at times and I know from experience that if you only watch one video, whether it’s on their Facebook or YouTube channel, you’ll be hooked! If you click here you will be directed to my blog’s Facebook page, the donation tab will be pinned to the top and you can do what you want with it. The post will be LIVE until the 16th, so it’ll be open for everyone for a week.

Thank you for always being here for me, and hope you enjoy the rest of your day! 🙂