Thursday, December 21, 2017

My Follow-Up Appointment in St. Louis: Reunions & Science Museum Before the Big Day

Real Talk - I haven't written in forever because I can't figure out how to do St. Louis justice!!! But I figured writing something that falls short of perfection is better than writing nothing at all, so here goes! 

Sunday morning, we headed into the lobby and saw one of my favorite dining staff members from the hotel....the same woman who had come running out to the shuttle on the morning of my surgery to give me a hug and a prayer before I left for the hospital. I immediately ran over to her to give her a hug, and this time we got a photo with her too!!

Then we went for breakfast at the hotel...the waiter recognized us immediately! :) I had wondered if maybe they would have forgotten after four months, but no...they remembered. And then the amazing woman who I'd just reunited with - the woman who gave me the shuttle hug! - came over with a paper bag full of popcorn and snacks for my brother and me. It was so sweet....and those snacks came in handy when I needed some energy during my hospital appointments the next day!

Then we took an Uber to the St. Louis Science Museum, and as we waited to get inside, I recognized a woman from England whose children both had SDR, and I introduced myself. We only spoke for a few moments, but that instant connection never ceases to amaze me....strangers become friends in mere seconds.

Science Museum Marble Contraption! The Children's/
Hospital has a mini version of this, courtesy of the museum :)
Sputnik Toothpaste, photo courtesy of my brother.
IDK why, but this is one of the few photos we have
of our museum trip.....

The museum itself was awesome!! There was a King Tut exhibit that was amazing, and we saw a couple IMAX movies about Egypt and the Amazon, as well as a planetarium show where we got to lie down on the floor for an hour (highlight of the day for my tired feet ;)). Long story short, if you are headed to St. Louis, definitely check out the science museum!! We thought we'd just spend a couple hours there, but we were there the whole day.

And the evening was even more memorable: two other women who had SDR in July were also in St. Louis for their followups, and we met for dinner. Over the past few months as we've navigated this journey together, we've become friends, and was so powerful to be able to speak about our experiences in-person, both SDR-related experiences and CP experiences in general.

Also?? Just as we gathered together, the English SDR family entered the room! It was such a serendipitous moment: at one point, there were five people in that room with CP...five people whose lives had been changed by Dr. Park.

Afterward, we returned to the hotel to prepare some gift bags for the SDR patients we'd be visiting, and I went to bed feeling surrounded by people who understand (and share!) my journey. I was more than ready for the day ahead.

Thursday, December 7, 2017

10-Year Anniversary of "That Day" : December 6th, 2017

Before I turn in for the night, I just wanted to write a note about today (well, technically yesterday by the time I publish this post!)...December 6, 2017. Ten years after That Day. That Day started out mom had reminded me earlier in the day that we were going to work out at the gym after school, I suddenly remembered that I lost my library book, and then I headed off to my first period class. Later that day, I told my friends I'd meet them at lunch, but I never made it there, because I slipped on a puddle of water about twenty feet from the cafeteria and broke my femur.

Ten years, countless hours of rehab, and two surgeries later, here we are. When I opened my eyes again this morning, I was struck again by how ordinary the day seemed, and yet that only made me feel more nervous. Because Extraordinarily Terrible Things can happen on Ordinary Days. (How's that for a late night optimistic thought?!)

I'm not terribly superstitious, but I kinda felt like pulling the covers over my head and skipping to December 7th.

I am so glad I didn't.

Instead of reliving those memories from December 6, 2007 (as I do far too often), I'm going to relive today for you.

I slipped on my favorite reindeer pajamas, sipped hot chocolate in my favorite mug (with peppermint!), Google Hangout-ed two of my Very Amazing Friends, and together, we decorated my Christmas tree.

Today, December 6th was a day of celebration. Celebrating Christmas and No Pain (it's only my second anniversary of NO PAIN since That Day!!!!).

Later on, I went to PT and it was agility day, and my stomach dropped for a second...agility day, TODAY? But what if I fall? For a second, I almost wanted to leave, but I took a deep breath and pushed through.

For the record? I did fall. But this time, I got back up.

I tapped cones with one foot, weaved through obstacles, leapt forward as far and as high as I could. I even practiced zig-zagging from one cone to another as fast as possible (and we had a good laugh over how I managed to get lost and confused in a grid of four cones...have I mentioned that my sense of direction is non-existent?!).

December 6th will never "just" be December 6th to me. The ache will always be there, even now, when my physical pain is gone. I still battled all day with that irrational, nagging feeling that something terrible was going to happen and that I was going to be writing this blog post several days later from a hospital room.

But December 6, 2017 was the best December 6th I've had in this entire decade.

(Coming Soon: My St. Louis trip and follow-up appointment, full of awesome photos courtesy of my brother's cameraphone, which is more high-def than my vision ;) ) 
(I promise I'll write soon!) 
(I also promise to reply to the unanswered emails in my inbox!) 
(I'm sorry!) (I love you all!) (I really do read every email!) (THANK YOU!) 

Saturday, November 11, 2017

Arrived in St. Louis for my Follow-Up!

Just a quick I've-been-up-since-5AM update! My brother, mom, and I arrived in St. Louis today for my 4-month post-SDR follow-up appointments this week.

Our ice cream...Dark chocolate with butterscotch,
pecans, almonds, and salted caramel. Amazing!
I'm completely exhausted but it feels good to be back...almost like I've found my way home. When we arrived, we met up with another SDR family who's back this week for follow-ups, and that's been my favorite part so far! We reunited in the middle of a grocery store, and we definitely got a few weird looks from the grocery store employees...but so worth it!! One of my best SDR friends is an eight-year-old girl who had surgery a year before me, and as soon as we saw each other, she ran at me for a giant hug! Then we took selfies and she gave me a little tour of her favorite grocery store items. Moments like this mean so much to me...I love that we've connected because of CP and SDR, and yet we also can talk about the trivial stuff. :)

Then, we (my brother, mom, and I) went to a local taco place, and it was good, but it wasn't nearly as good as the ice cream place we went to afterward, Jeni's. This ice cream, you guys? It's like the Holy Grail of ice cream. In my brother's words: "It's a good thing this place is more than 800 miles from home because if it were any closer, I'd be here every day."

My appointments (filmed PT eval, neurosurgeon, and orthopedic surgeon) aren't 'till Monday so we've got tomorrow free to do some exploring!

In the bed looks so, so comfortable after this crazy long day. Goodnight!

I'll leave you with a few more pictures. Sorry not sorry - they're all food-related! Maybe tomorrow I'll try to capture something other than food, but no promises. ;)

Ice cream place!

The MENU! Between the 3 of us, we sampled like 10 flavors
before we finally settled on our choice. ;) Such difficult decisions!

Taco place!

Wednesday, October 25, 2017


I can't believe it's been five years since I took the leap to make this blog. Five years ago, it never occurred to me that this blog would help me find a community....friendships. Togetherness. Thank you (yes, you!) for being here...for reading and for caring about these words in this little corner of the Internet. If it weren't for you guys, I would have just gone back to writing my thoughts in a journal, but there's something inherently powerful about sharing.

Anyway, it's been a while since I've posted here, so I thought I'd share an update while I'm here.

I'm headed back to St. Louis in a few weeks for my SDR follow-up. This time, my brother is coming with my mom and me, and we're so excited about that! I can't wait to show him the city that changed my life. I'm looking forward to reuniting with some SDR friends too - a fellow adult whose follow-up is the same day as mine, and a little girl I befriended who had surgery a year before me. :) 

I'm excited to see Dr. Park and to show him how far I've come in these past few months, but that part also brings some nervousness. While I'm there, I've got to do another eval, similar to the first one, where I'll demonstrate my motor skills in bare feet while being filmed, and then they'll translate my movements into numbers in order to examine how much progress I've made (!!!). 
At Pilates. :) My socks say "be unique."
They make me smile because they remind me
I don't have to be perfect...I just have to be me!

And? Dr. Park will tell me if I need hamstring PERCS ("minimally" invasive lengthening) this summer. I was talking about it with my mom last night, and we ran through the different scenarios in an attempt to mentally prepare ourselves. I have made noticeable, visual progress since my pre-op eval, but our gut feeling is that they'll still recommend surgery, especially on my right leg but probably on both. I think I'm okay with that...but there's another part of me that's tired of this. Tired of hospitals and surgeries and recoveries. Wanting to move on with my life.

For now, though, I'm trying to focus on the positive parts of this trip in front of us, because despite the nerves, I really am looking forward to it. I'm hoping I can keep it together when I see Dr. Park again, because what do you say to the person who's changed your life??? 

Post-SDR, I feel so much more (physically) comfortable in my own body. Visually, I think my gait is pretty similar to pre-op, but it takes so much less effort to move. I can wake up in the morning and start walking immediately. I fall so much less. Exercising is actually enjoyable, and stretching doesn't hurt so much, and my balance is much better. And - believe it or not, this is a new skill - but I can straighten both knees at once when I stand!!! 

It hasn't been easy, but for me, it's been so worth it. 

I'll write again soon - hoping to get a few more posts in before our trip - but for now? Thanks for being here. Five years of blogging feels amazing, thanks to you. :) Here's to many more!

Thursday, September 14, 2017

On My Bad Leg

When I was little, a neurologist told my parents that they should encourage me to be left-handed, because my right side - including my right hand - would be more affected by CP.

They tried. I resisted. I'd pick up a crayon with my right hand, they'd switch it to my left, and I'd quietly and unceremoniously slip it back into my right.

Eventually they gave up trying to change me according to a doctor's orders and just let me be who I am. As I grew older, it became clear that my hands were very minimally affected by my CP, if at all. Yet that doctor wasn't entirely wrong. My right side - specifically, my right leg - is significantly more affected than my left leg.

That difference has always been obvious, but post-SDR, it's even clearer. My left leg has been stronger from the start, quicker to build further strength, and easier to stretch. Visually, my left knee turns in less and the calf muscle is noticeably larger.

Oftentimes in PT, someone will notice one of these differences and comment. The words leave my mouth before I can stop them:
"My right side is my bad side." 
(Or, conversely, "My left side is my good side.")

I say these words, and yet I know deep down that they are not true. My body is not divided. It is not a split entity between "good" and "bad."

I'm not usually one to get caught up in semantics, but I am trying to change my language. I want to view my entire body - my entire self - as inherently good.

Sometimes, though...sometimes it's hard.

Yesterday, it was hard.

Yesterday, I had my first progress evaluation in PT.

Overall, it went really, really well. My progress over the course of the past two months has been awesome: my balance is better, my strength and endurance have increased significantly, and I am in much less pain as my body continues to heal.

And yet there was one part of the evaluation that felt like a punch to the gut. I've been working so hard on stretching my hamstrings, trying to avoid another surgery. If I can't get my range-of-motion to a certain degree by my follow-up appointment in November, I am probably going to need lengthening. It's a minimally invasive lengthening surgery called PERCS, and it's supposed to be much less traumatic than the tendon surgery I had when I was two. But there's no getting around the fact that it's another surgery. Another hospital stay. Another recovery. I really, really don't want to go through everything that entails if I can help it.

Over the past two months, I've gained significant range-of-motion in my hamstrings on my left leg. On my right leg? Not so much.

It was hard to watch my mom's face fall in disappointment as the PT read out that number...a number that still seems impossibly far away from where we need it to be. It was hard not to think of my right leg as my "bad leg" in that moment, because it causes me so much more frustration and worry and heartache compared to my left.

I wish I could say that those range-of-motion numbers don't matter. For me, they do. I want so badly for those numbers to go up so that I can spare myself from further pain and tears and anxiety. But I will say this: those numbers aren't everything. Those numbers don't define the worth of my body. They don't define me. They don't even define my right leg.

Righty, if you're listening? I appreciate you. I know we've been through a lot together, but I think you're pretty awesome for continuing to try, and for getting me where I need to be. And for the record? I don't think you're bad.

You're part of who I am, 
and no matter what happens, 
we're in this together. 

Saturday, September 9, 2017

SOS: When you're stuck on an island and bleeding profusely

It's 4 p.m. on Monday, the fourth of September, and I'm holding my mom's hand as we walk along the beach. The sky is peaceful, calm, and the tides have retreated, leaving behind a wide expanse of flat, wet sand that is scattered with rocks and shells. The stairs to my uncle's house are about fifty feet in front of us.

As we step, we are trying to be careful to avoid sharp rocks and shells, but it's a nearly impossible task.

"Don't worry," my mom says. "We are almost to the stairs!"

That's when she looks down at my feet and gasps.

"Blood," she says, and at the panic in her voice, I follow her gaze.

Blood. Everywhere. A seemingly endless stream of red stains the sand surrounding me. My left foot is so covered in blood that I can't identify the source.

My uncle, who is standing twenty feet in front of us, runs over and carries me to a rock in the middle of the beach. He sets me down, and runs toward the stairs to get his girlfriend to help.

"So much blood. So much blood. There's so much blood." My mom keeps repeating this, and there's an edge of hysteria to her voice that makes me wonder if she might pass out.

"It's okay, I'm okay, I'm okay," I say. I'm not quite sure if I'm talking to her or if I'm talking to myself. The beach starts to spin, and I close my eyes. I'm afraid to say that I'm dizzy, because I'm worried my mom might faint. But it's almost as if she knows, because she gets down behind me on the rock and opens her arms so I can lean back. I close my eyes.

When I open them, my uncle's girlfriend (we'll call her Karen) is running toward me with a dishtowel and a pair of kitchen scissors. My uncle trails behind her with a first aid kit.

Karen looks down at my foot, at the blood streaming steadily down the rock. "Oh my God," she says.

She thinks I might need stitches, but my aunt and uncle (who share the same blood clotting disorder that I inherited) think I can get by without them.

"Well..." she says. Her hands are covered with my blood, but her voice is suddenly bright - almost cheerful. "I could suture you up right here if you want! I have a suture kit right here!"

NOPE NOPE NOPE. She's a biochemical engineer, so she knows her science, but even if she was a doctor, I don't know if I would be brave enough to let someone give me stitches in the middle of the beach, especially since my feet are still a bit hypersensitive from SDR.

The sunset on the island :) I took this after dinner,
during the second rebandaging of my foot. 
As they rinse off my foot, it becomes clear that the source of the bleeding is a pretty deep gash on the top of my big toe. They bandage it up with gauze, wash off the bloodstained rock that served as my makeshift exam table and I get to my feet to make the trek up the stairs.

("I'm so impressed you didn't even shed a tear!" someone says. "If it were me I think I'd be sobbing."

Well, after everything's she's been through lately, this is nothing, my mom says. #truth...CP has steeled me!)

As I step, my foot continues to drip blood, so they have to rebandage everything at the top of the stairs. I'm told not to look because there's still a lot of blood, so someone drapes a beach towel over my head. ;)

Later, I join the family for dinner and then we have to rebandage everything AGAIN...and then at some point on the way home, we realized that it was still bleeding significantly. My aunt (a nurse) met us at a CVS and applied some steri-strips and some clotting medicine, using a flashlight to see in the dark as I propped my foot up on the dashboard of the car.

My sad toe :( This is from today, 5 days later.
I took a bandaged pic because I don't want to traumatize anyone ;)
On Tuesday afternoon (24 hours later), I could walk on it, and it didn't hurt much, but every time I stepped, the cut began to bleed we went to a walk-in clinic. The doctor there (who was the same doctor who saw me at the urgent care center when I broke my femur in 2007!) said that I probably should have gotten stitches, but it'll heal up on its own with the steri-strips to hold everything together.

I was really discouraged by this injury because I was afraid it would interfere with all of the progress I've been working so hard to achieve...but luckily, it hasn't slowed me down much! For some reason (maybe it's an SDR thing or a CP thing) it barely hurts at all, and I only missed one day of PT (Tuesday - the day we went to the walk-in clinic). I stopped doing the treadmill for a couple of days, but otherwise, I've been continuing as usual. Today I met with my personal trainer and she was so happy with the strength I've gained in the past two weeks. My squats are looking better, and my core is engaging more as my back heals. And the BEST part? When I was using the abductor strengthening machine, I can now press my knees completely against the pad. When that happened, we didn't say anything...we just stared at my knees in silent reverence until the last repetition, when she pointed and said, "Do you SEE that??" :,)

I wish I could go back in time to five days ago, to the moment when I was curled up bleeding on that rock in the middle of the beach, whispering
I'm okay.
I'm okay.
I'm okay.

I wish I could go back to that moment and say
You're okay.
You're okay.
You're okay.
You can do this
and you will.

Tuesday, August 29, 2017

7 Weeks Post-SDR: ELATION OVER STAIRS & Progress Through Struggles

There are no words that could come close to capturing the feeling you get when you finally, finally, finally accomplish something that you've been working on for as long as you can remember.

A few days ago, I stood at the bottom of the staircase, took a deep breath, and walked up. With no hands. Alternating steps. 

When I got to the top, I turned around. Took another deep breath. And walked down the same way. 

Pre-SDR, if I concentrated hard, I could sometimes do one step up without a railing, and one step down. They were shaky steps, often thwarted by thinking too hard or not thinking hard enough. Sometimes I'd lead with one foot, and the other foot wouldn't follow quickly enough, and I'd fall. This happened often enough that independently navigating curbs has never been an option for me.

But now? Maybe when I come across a curb in public, I won't have to feel the pounding of my heart in my chest. Maybe I won't have to worry about whether I'm safe, because I'll know that I am. This staircase is so much more than a staircase for me. It's independence, and safety, and freedom.

It was never just a staircase. 

These past seven weeks have been incredibly difficult at times. At times I've wanted to post here, but I just couldn't, because I didn't know how to put words to my feelings...didn't want to put words to my feelings, because I was afraid they would hurt all the more if I gave them power by typing them onto a page. I was frustrated that my legs weren't working in a way that was familiar to me, afraid of dealing with the possibility of failing myself and my family, and feeling crushed under the pressure of it all.

But things are looking up. The pace of my day-to-day life has picked up again, with an online graduate school program and tutoring in the evenings and an intense regimen of PT. I do four days per week of formal physical therapy that lasts for about an hour and twenty minutes, one day per week of personal training, and I usually go swimming for at least one day as well. On top of that, I do stretching and exercising at home. I just finished 25 minutes on the treadmill (definitely had to pep-talk myself through those last five minutes!!!), and after this I'm going to go stretch my hamstrings. (I think I'm developing an addiction to hamstring stretching!!! More on that later) It's a lot, for sure, but I'm motivated and encouraged by my progress. :)

My next goal is to work on building my confidence with curbs out in public. Physically, they are so much easier than before surgery, but my mind still remembers how difficult they were, and I've fallen flat on my face so many times that it's a difficult fear to transcend. A lot of this recovery experience feels like that: there's a disconnect between how my legs feel now, and how my body remembers them.

That's it for now, but I'd like to write here more often. It's cathartic to share my experiences with you guys, and my hope is that maybe someday it will help somebody maybe I'll be back here tomorrow with some more to share. :) Thanks for stopping by!

Tuesday, August 15, 2017

Day 3 Post-SDR: The Hardest Monday Of My Life (ft. vomit, unwelcome roommates of multiple species, & lots and lots of tears)

I'm not a morning person and I'm not a Monday person, so I think it's fair to say I'm biased against Monday mornings to begin with, but the particular one that I am about to relay to you was the Monday-est Monday morning I've ever had. 

Let me paint a picture for you: it's 7am, 3 hours after the pain management doctor was bent over my epidural pump and apologizing because I'm not able to receive the blood-thinning "better" pain medications.

I am simultaneously throwing up, trying to breathe, and trying NOT to breathe so I don't aspirate into my lungs.

Panic washes over me as I realize that somehow, I'm unable to breathe through my nose. My body feels as if it's warring with itself, and I'm stuck in the middle of it all, somehow separate and yet unable to escape. As my stomach reflexively retches, forcing air out, my lungs reflexively fight to get air in.

My mom is trying to help me sit up. With her other hand she presses the call button over and over and over and over again. A nurse answers through the speaker on the remote, asking if we are okay. My mom doesn't need to reply because whatever horrific sound effects the poor nurse hears on her end sends them running to my room. Later, I wondered if the entire nurse's station heard me throwing up, but in that moment, I couldn't have cared less.

When my stomach has finally calmed itself down (with the help of some anti-nausea meds), those nurses leave.

Someone else enters.

This is the part of the story where my mom completely loses it. 

"Did you see that??!" she asks, staring at the door to my hospital room.

"See what?" I reply, still preoccupied by the pink basin in my lap.

"SOMETHING JUST CRAWLED UNDER THE DOOR!" she says. I can tell she's seriously considering leaping onto a chair.

"Like a bug, or...?"

"YES, it was HUGE...really really huge and I don't know where it went but - OH THERE IT IS, I SEE IT, IT'S DEFINITELY A COCKROACH AND IT'S GOING INTO THE BATHROOM, IT'S -" (at this moment, she runs over to the bathroom door and slams it shut, which we both know will do nothing because Mr. Roach is the perfect size between terrifyingly huge and yet terrifyingly small enough to fit under the gap beneath the door.)

She turns to me and exhales: "OKAY...okay. Okay. It's in the bathroom. Do you think we can use the call button for this kind of emergency too???" (contemplative pause) "....You are so lucky to be in that bed right now."

And then we just start to laugh. Because after the kind of morning we'd just had - 4am meetings with the pain management team followed by I-can't-breathe throwing up - a cockroach as a roommate is just about the last thing we needed.

Not too long after, though, Mr. Roach decides on his own to leave the bathroom and crawl out of the room. Miracles do happen, people. #SDRChangesLives but #SoDoCockroachesFinallyLeavingYourRoom.


After that fiasco, the neuro team came in to remove my catheters. I was pretty worried about having no more epidural to control my pain, especially considering how much pain I had experienced earlier in the morning, but they assured me that the oral pain medications would be just as effective, and they were right. :)

I got extra pain meds then, too, because my next visitor was my PT. Honestly, I don't remember much at all about her visit, and maybe it's because of those pain meds. I remember that the room spun when I sat up on the edge of the bed. She had her arms around me to support my back as I sat, but it definitely wasn't the most comfortable experience. Then she had me wrap my arms around her shoulders as she pulled me to standing. My legs felt like jelly, completely incapable of supporting my weight, and as she helped me take a few shuffling steps toward my wheelchair, I was struck by the very strange sensation that my legs were not my own. In some ways, they were heavy, and still pretty numb from the residual epidural medications in my system, but at the same time, they no longer resisted me. They didn't fight back anymore.

After I was settled in my wheelchair, we went for a quick trip around the hospital so that I could get used to sitting up for longer, and then it was back to bed. At this point, I really wanted to get cleaned up and change out of my hospital gown into some Real Clothes (and now that my catheters were out, I was officially allowed to!).

My amazing and incredibly resourceful mom had a plan to accomplish this. She stopped by the nurses station and asked for several of the largest diapers they had on hand. They got a good laugh out of this, and were particularly intrigued when she explained that she needed those diapers in order to give me a "shower." (I wouldn't be allowed a true shower until Day 10 post-op! *shudder*)

Back in my room, she positioned the diapers under my head and used them to absorb water as she and my nurse shampooed and conditioned my hair. They sponge-bathed the rest of me and then I changed into my SDR t-shirt and pajama shorts, and my mom did my hair (side ponytail, 80's style! Not exactly my favorite but hey, my options were limited, and Laura Ingalls Braids were completely out of the question!). It wasn't the most luxurious shower I've ever had, but I was in no position to be picky, and it felt amazing to be clean!

By now, it was Monday afternoon, so I believed that the Monday morning horrors were finally behind me.

I was mistaken. Never underestimate the mood-wrecking power of a single sentence spoken over a hospital intercom.

"This is a reminder that all fire alarms are going to be undergoing testing in the next hour." 

I began to sob. 

Yes, I am twenty-three years old and I am crying over a fire alarm. Before you judge, let me explain.

As a person with CP, fire alarms are already a source of immeasurable anxiety for me. If you're reading this and you also have CP, you'll know what I mean. If you're reading this and you don't have CP, then I ask you to imagine what it's like for you when a fire alarm goes off. You probably startle, and your body tenses up for a moment, and then you get on with your day. But my brain has a hard time turning off that reflex; I startle hard, and for at least several minutes afterward, my legs feel "stuck," and painfully stiff.

And in the first few days after SDR, my already-heightened startle reflex was more powerful than ever before. A knock on the door, a ringing cell phone, and even an unexpected light touch on my arm or leg produced waves of excruciating spasms that arched my back and rocked my body. These spasms were so intense, so sudden and unpleasant that my mom referred to them as earthquakes.

I already feared unannounced whispers and taps on the shoulder, having experienced the awful pain of the earthquakes they created. But as I lay in that bed, white-knuckled hands death-gripping the bedrails, I imagined the kind of torture that a fire alarm might induce.

I could not stop the tears. Could hardly form a sentence. Was terrified of the pain that might come for me just minutes before I was expected to get out of bed for my next PT session.

But my amazing nurse came in to reassure me that the alarm would be quiet. I wouldn't even be able to hear it from my room, she said.

So there you go. Lesson of the Day: Don't Cry Over False Fire Alarms. I wiped my eyes, took a deep breath, and repeated four words in my head over and over again. You can do this. You can do this. You can do this. You can do this. 

When my PT arrived a few minutes later to help me out of bed and bring me to the PT gym, I think it was still pretty obvious by my reddened eyes that I had fallen to pieces...but if she noticed, she was too polite to say so.

At PT, we started with simple exercises on the table, like bridges and side leg lifts...except they weren't so simple anymore! I couldn't do a bridge at all, and my side leg lifts consisted of the PT pretty much lifting up my leg for me! It was kind of a strange feeling to struggle so much with exercises that have been pretty "easy" for me my whole life, and to realize that so much of my "strength" was actually spasticity.

And then we did sit-to-stands. They were definitely painful on my back (a sharp, burning soreness), and yet I was amazed at how much easier it was to put weight through my legs. Pre-SDR, I could feel my knees resist me whenever I tried to straighten them, as if tight elastic bands were attached to my muscles, trying to force them bent again. Now, I was able to straighten them with ease, and not only would they extend further than before, but they'd stay that way.

As the "grand finale" of my PT session, I did a few laps around the gym using a walker. It wasn't the most graceful walking I've ever done, but the steps felt completely different than any I'd ever taken before. My legs still felt "borrowed," as if they didn't quite belong to me yet...but my steps felt so light! I have a video of my walking on my phone, and I can hear the tears in my mom's voice as she notices my straight knees. I think it would have been a happy tears moment for me, too, if I hadn't been concentrating so hard! :)

In the same PT session, I saw the family that had stopped by my room on Sunday while I was was nice to meet them now that I was actually conscious (and to meet their little girl, too! She gave me a big smile and watched me with wide, curious eyes!).

Later that evening, when I was back in my room, my neurosurgeon came by to check on me. He was almost giddy over the range-of-motion in my ankles, and per my mom's request, I showed him and his fellow a few seconds of the clip of me walking in PT. He was really happy with that - and with my SDR t-shirt. ;)

Then we had to switch rooms. The hospital room I'd been given was actually meant for seizure monitoring, and another patient had come in who needed it. It was great for those first few days post-surgery, because it was private and the shades could be pulled down to turn the room *completely* dark, even in broad it was amazing for sleeping! But now that I was starting to feel better, I actually didn't mind the room switch.

Except that as they wheeled my bed into my new room, I heard and smelled my roommates before I saw them.

My new room! Here's the view from my bed.
They were eating chicken tenders. Chicken. Tenders. You know, the very same food that I had eaten for brunch a couple days before, and the mere thought of it made me feel sick to my stomach. I glanced toward them, trying to force a smile and a wave for the sake of politeness. A little girl was sitting in the hospital bed with her mom, watching Despicable Me on volume level 106. The sheer amount of food on their trays would have been impressive if it hadn't made me feel so ill...mountains of chicken tenders, French fries, and ketchup. The room smelled like a McDonald's, and the mom was one of those Very Loud Chewers, so it was impossible for me to forget what they were eating.

It also turns out that her mom was a Very Loud Laugher. And a Very Loud Talker. A Very Loud Person. And every time she'd laugh or shout or drop something on the floor, the spasms in my back would return with a vengeance.

Very Loud Mom and her daughter were supposed to be discharged hours prior, but according to the nurses, they were taking their time leaving. My mom and I listened to them read over the discharge paperwork, and they were laughing about how they could just pretend that they had no one to pick them up and then they could stay here for as long as they wanted. The horror! Given the choice between sleeping in the hallway or staying in the room with spasm-inducing Very Loud Mom and her heaping plates of nauseating fried food, I'd choose the hallway ten times over.
The puzzle when it was all finished! No missing pieces. :,)

Once again, though...miracles do happen. They actually did leave, and a volunteer guy came by to give me a puzzle to work on. I LOVE puzzles...I thanked him profusely and told him he made my day. He said I made his too. It was a Hallmark Moment, you guys. :,)

Our new roommates arrived in the middle of the night...a mom, a dad, and twin newborn boys. I'll save that story for my last hospital stay post!

So there's Monday: cockroaches and vomiting and alarm tears and happy tears and chicken-tender-eating roommates! 

Thank you to all of you who have reached out with words of encouragement and support, and thank you to all who continue to follow my journey! For those who have reached out with concerns, I want to assure you that my last post was written in good spirits...I promise. I mean everything I said: I'm not planning to stop writing anytime soon, and I'm going to continue relaying my experiences with honesty and openness. This post just took a lot longer than usual to write because I needed to do this Monday justice!

I'm thinking that my next post will be another "current day" update, so stay tuned for that very soon! But I definitely have a lot more to write about the rest of my hospital stay, PT sessions in St. Louis, and the (crazy!) plane ride home.

Until next time! xo

Thursday, August 3, 2017

Dragons, New Legs, and Complicated Feelings: A Letter to YOU

Before I continue with my hospital stay posts, I want to talk to you about something.

I want to talk to you about Complicated Feelings. My purpose in writing this blog is to help you feel less help you feel uplifted and understood and loved. I never want you to come to my blog and leave feeling alienated or less than or hurt.

When I write about my SDR experiences, I'm writing from a perspective that is deeply personal to me. I know that others with CP don't necessarily feel the same way about spasticity or cerebral palsy, and that's 100% okay. For me, spasticity did feel like a dragon, so Dr. Park's metaphor (i.e., SDR = slaying a dragon) resonates. For me, spasticity was wholly negative and separate from CP. It slowed me down and caused me a great deal of pain. And now that my spasticity is gone?? My body feels completely different, and it's a disorienting and extremely difficult yet extremely joyful experience for me...something that I need to write about. I do feel free - as if a literal weight has been lifted, not from my shoulders but from my legs.

You might feel differently. Maybe for you, spasticity is simply a part of having CP. Maybe for you, it doesn't cause suffering. Maybe for you, spasticity represents security, something you feel you need to get around. Maybe for you, it's not a dragon. I acknowledge you. I see you. I want you know that even though I write from my own perspective about my "new legs" and my new sense of freedom, I am not implying that you are not free.

For me, so far, SDR has been the right decision. For you (if you are reading this as another person with CP), it might not be. And that's okay.

And even though I've had SDR, I still have CP. That's not something I'd ever want to take away. As I've noted on this blog in the past, CP is a part of who I am, and I have grown to love that about myself. My goal in having this surgery is simply to move have less improve physically so that I can live a healthier life going forward.

I will continue to document my experiences honestly, sharing my triumphs and hardships as they come - I feel like I owe that to you, and I owe that to myself, too. But I also want you to know that I am here to talk if you ever come away from my blog feeling worse than you did when you arrived. I don't hear from the vast majority of my readers on a regular basis, so I don't know how you're feeling. I can only hope and pray that my blog is a source of comfort and solidarity for you. But if it isn't? Please...send me an email, or write me a comment.

Yes, I do feel as though my dragon has been slayed. I do feel freer, as if I have new legs. I am continuing to work hard in PT, and I am excited to make progress. For me, SDR seems like it was the right choice...the right path for me as I strive to be the healthiest, happiest version of myself that I can be. But for you? Maybe it's not. Maybe you embrace your spasticity in the same way that you embrace CP. And that's awesome.

Whichever path you choose...whether or not spasticity is a dragon for you, whether or not SDR represents freedom for you, just know that you are enough. We are enough. And we are in this together. <3

Monday, July 31, 2017

Life on the 12th Floor: Part I. (AKA: Alarms that Never. Stop. Beeping.)

It's a bit difficult to parse out the days, as they all blend together, but I remember that when I woke up early in the morning on July 8th, the day after my SDR, I was still feeling good. I had some more itching on my face and arms, which they controlled with Benadryl, but no nausea (once again, THANK YOU DR. ROBBINS!!!) and just a little soreness in my back. I couldn't really feel anything from the waist down...I could wiggle my toes (really, really well, in fact), but my legs felt numb and heavy, almost like they weren't entirely part of my body.

For brunch, I ordered Frosted Flakes, strawberry ice cream (because I can), and chicken tenders (retrospectively, this makes me feel ill....chicken tenders for brunch?! No no no no). I can't really remember much else about that day, but I think that's because I spent most of it sleeping.

EVIL ALARM...or maybe this is my epidural pump.
I'm not sure. But the evil alarm is in this photo somewhere.
Except when the machines started beeping or the nurses woke me to check my vitals. Both scenarios seemed to happen 1,583 times a day. One of my issues was that my breathing was shallow, and this triggered the respiration alarm
*c o n s t a n t l y.* I remember waking up and asking my mom if we could toss that monitor out the window and watch its descent from the twelfth floor, and she wholeheartedly agreed.

I begged my nurse to fix it or turn it off or ANYTHING. (Breathing is overrated) One of my first nurses was really good at pressing buttons on those monitors, but she refused to answer any of our questions. She kind of reminded me of a personified brick wall, because she was incredibly unhelpful when it came to fixing that respiration alarm, and when my mom asked her what she was putting through my IV, Personified Brick Wall stared at my mom in silence and left the room. Which...I dunno, doesn't that kind of sound like the substance of a horror movie? Evil nurse puts unknown chemical into your veins and upon questioning, stares through you and leaves the room. 

My next nurse was WAY better than PBW. She was amazing, in fact. She moved a lead on my chest so that the respiration monitor wouldn't freak out at me as much, and she was much faster to come into the room to turn it off when it did start sounding the alarm.

And then...circa 2 am Sunday morning, the pain hit. Hard. I think the general anesthesia was out of my system at this point, and my back knew it. At its worst, my pain had climbed to an 8 out of 10. My awesome nurse paged the pain management team and told the doctor that it was a "ten." ("I added a couple points so he'd move quickly," she confided conspiratorially.)

There was a giant digital clock on the wall that displayed the hours, minutes, and seconds as they passed. Those illuminated red numbers taunted me. I remember watching the seconds inch by and wondering when my pain would end. If it would end. 2:13:36. 2:13:37. 2:13:38.

As my pain increased, so did my nausea. When the pain doctor finally entered my room, I was bent over a pink basin.

He looked at the dosage of medication that I was receiving through my epidural and realized that it was too low, a child's dose, so he increased that. And then he pressed some buttons on the epidural pump and gave me a bolus of medicine.

"We watched your face relax instantly and we knew that it had worked," my mom said later. I pushed that basin away and fell asleep.

When I woke up later Sunday morning, my pain was about a 3! I must have slept most of that day, too, because I remember some other details, but they're all boring and related to sleeping (like: "UGH. The nurse is coming in to roll me again. Now I have to sleep on my left side, which is my least favorite side for sleeping!" Yeah. I told you they were boring details.)

The next (interesting) part of Sunday that I remember is waking up later in the evening and realizing that I'd missed my first visitors. I was really sad about that and kind of frustrated that my mom didn't wake me for them. :( I'd been in contact with another SDR family who was coming back for their daughter's one year follow-up appointment, and the little girl wasn't allowed on the floor (due to germ precautions), but her mom and grandma had come to see me and they dropped off a beautiful goodie basket...a stuffed elephant, a coloring book, some Better Cheddars (like Cheezits but...BETTER), heat packs, and a fuse-bead Ariel that the little girl had made me. Once again, we were floored by the kindness that found us in St. Louis.

"Don't worry," my mom had told me."We'll see them again." And we did. :) I'll share about that later, but Monday was such a crazy day that it deserves its own post, so I'm going to leave off here at Sunday night. Stay tuned for the rest of my hospital stay, which features less sleeping, lots and lots of tears (happy AND sad in the same day!), my first time out of bed to try out my "new legs," a room change, and a whole bunch of PT sessions!

Saturday, July 29, 2017

3 Weeks Post-Op Update!

I'm still working on my hospital stay posts, but I had so many people ask me yesterday for an update on my recovery that I figured you guys might be wondering too.

Week two was rough.

The numbness in my legs started slowly wearing off starting the night I was discharged from the hospital (Wednesday, day 5 post-SDR). First, it was really just my feet that started regaining sensation. They were overly sensitive and really, really cold. I was wearing socks and slippers at the same time, and even that didn't seem to warm them up at all. Then I started getting tingles in my legs...nothing excruciating, but it felt like static electricity all from my hips to my calves.

By Saturday night (day 8 post-SDR), my legs felt achy, but I didn't think much of it. I thought my muscles were just sore because I'd never used them without spasticity before.

I thought wrong. Saturday night was a warning, a sign of the misery that awaited me. As the days progressed, the achiness intensified. By Monday night, the achiness had turned into burning, shooting pain, and the tingling was no longer the benign static electricity sensation. Soft blankets felt scratchy and itchy against my legs, and my knees hurt when they touched each other.

I was going to bed at 8 pm and watching the hours creep by until the sun started rising. And nothing helped. I tried Valium, magnesium (the neurosurgeon's suggestion), sleeping aids. I was more exhausted than I'd ever been in my entire life, and yet sleep refused to come for me.

On Tuesday afternoon, I sent off an email to the PT who assists Dr. Park and helps with administrative tasks. She assured me that these nerve pain issues were normal (and older children and adults are more prone to them) and she forwarded my email to the physician assistant.

Tuesday night, the tingling, itchiness, and nerve pain were worse still, and my mom had timed my muscle spasms and said they were coming every 30 seconds or so. ("I'd watch you start to drift off to sleep," she said, "and then your leg would spasm and jolt you awake again!") Not being able to sleep was the most frustrating aspect of this whole situation, but these issues were also plaguing me during the day. My legs felt like they were getting a low-grade electrical shock, and on top of that, it felt as if I had a sunburn (this "sunburn" was worst on the bottom of my heels). Even wearing a soft pair of leggings was uncomfortable.

On Thursday night, we called the St. Louis office and the PA wrote me a prescription for a drug called gabapentin, which is an antiseizure med that also helps with nerve pain. I didn't want to take it because some of the side effects are scary, but she assured me that it's low-dose and I'd only need it for a short time.

Out of sheer desperation, I took it. And it WORKED.

I took it about two and a half hours before bed (it takes some time to work), and the first few nights of taking it, I still had some tingling, muscle spasms, and hypersensitivity in my legs and feet, but my symptoms were diminished enough that I was able to fall asleep.

Now, my legs feel pretty much normal again! I still get some tingling and itchiness when I put pressure on my legs, and my feet are still hypersensitive (and sometimes it feels like they have pins and needles), but these issues don't interfere with my life at all. I'm not thrilled about having to take the gabapentin, but I'm beyond relieved that it's working for me, and I'm hoping that I'll be able to stop taking it in the next couple of weeks, once my nerves have calmed down. And no side effects yet!

Physically, I've been working hard in PT (an hour a day 4 times per week, and then I do exercises and stretches at home as well). I'm amazed at just how weak my muscles are - exercises that I've done "well" my entire life now make my legs tremble! For PT, I'll sit on the edge of a table or chair with my legs bent, and then straighten one knee and hold it there for ten seconds, and my leg will shake uncontrollably after a few repetitions. It's kind of frustrating, because in my head, it should be easy, and yet it isn't. It's so, so hard.

At the same time, though, I am in awe over how easy it is to move! My legs feel so free and light without spasticity. It's as if I've gone from having tight elastic bands pulling on my muscles and heavy chains weighing down my legs to having nothing at all. Walking up stairs feels like floating, and straightening my knees is so simple now!

I'm now walking independently all through the house. Outside of the house, I can walk for short distances on my own, but I usually hold someone's hand for balance because my legs still give out on me sometimes. According to my PTs, it takes about six weeks to build muscle, so I guess I have to be patient as I wait for my muscles to come through for me. Every day, though, moving feels walking improves overnight, because my brain is constantly working on figuring out new pathways for movement now that it can't rely on spasticity.

For the most part, the feeling has returned in my legs, although I still have a numb area on my left leg from the top of my thigh to just above the knee. My back is still sore, too, and it's tricky for me to bend over, but that's been improving gradually as well. My scar is 3 and a half inches - a bit longer than I expected, but so worth it. :) I'm in awe over my new legs.

One intriguing "side effect" of SDR that I've noticed is that the discrepancy between my two legs seems much more pronounced without spasticity. My right leg has always been more affected than my left, but I think spasticity evened out some of the difference because my more spastic right leg was able to rely on that artificial strength, and my less affected left leg was hindered by spasticity. Now that the spasticity is gone, my right leg is noticeably weaker throughout most of the exercises (except some of the hip exercises, because my left side is still not 100% after my broken femur/pin removal)...and my left leg is significantly more flexible.

I'll be back soon to write more. Thank you all so much for your encouragement and support! Week three has been such an improvement over week two, and here's hoping that the upward trend continues. :)

Monday, July 24, 2017

SURGERY DAY: Goodbye Spasticity!

previous posts: 
{a walk in the park - airport day and the adventure that ensued when we arrived}
{pre-op day one - beginning and ending the day with tears}
{pre-op day two - when a doctor places scissors on your back and moves them around a bunch}
{quick almost 2-week post-op update - surgery was a success}

My nerves woke me up before the sun rose on surgery day, but it seemed as though my friends were up with me, because my phone was buzzing with messages of and support that crossed state lines, crossed oceans, and found us right there in our hotel room.

We didn't have to be at the hospital until about 9:30 am, and my surgery was tentatively scheduled for around 11, so I was allowed to drink water until 7:30 am, but no food - not that I would have been able to get anything down knowing what was ahead!

When the shuttle arrived to take us to the hospital, the driver was about to shut the door of the van when a woman came running out of the was the staff member who we'd befriended over the last few days, coming to give me hugs and good luck. She wrapped her arms around my shoulders, bent over as she leaned into the van. I don't remember her words, but I remember that my fear was gone for those moments as she held me, this woman who hadn't known of my existence until just days earlier.

I still felt the shadow of her arms on my shoulders as the van pulled up to the hospital and as we walked into Same Day Surgery. (Side note: I'll never understand why it's called "Same Day Surgery" when you're arriving for an inpatient surgery!). My mom braided my hair while we waited so that it wouldn't be a huge tangled mess after three days of lying flat in bed.

And then the nurse called us back. You know how some people just emanate confidence? Well, this nurse emanated nervousness. Nervous Nurse handed me a cup to pee in (sorry if this TMI?? I typed this and backspaced it like three times) and then fluttered and hovered anxiously outside the bathroom door as if I couldn't manage the task myself. Then she took my weight and height. Then she forgot my weight and height. We went through the process again so she could write the numbers down.

Then she brought us to a private pre-op room, where a hematologist came to talk with us. He was only there because I have a bleeding disorder, which I've mentioned on this blog basically means that I bleed a little more than most people (a fantastic characteristic for someone with balance issues!!!! (*sarcasm)). The clotting factor that I'm deficient in was tested on my first pre-op day, and my level came back at 33%...three percent above the cutoff where they require special intervention during surgery to prevent excessive bleeding. That glorious three percent spared me from the hematologist's concern...he was all, "EVERYTHING SHOULD BE FINE, YOU ARE GREAT" but then my mom asked if that factor deficiency could increase my risk of cerebrospinal fluid leak from my spinal cord and he turned a little pale and ran off to Google that. (My mom is a teacher. She asks all the tough questions.) (spoiler alert: it doesn't. Or more precisely, "it shouldn't," which is doctor-speak for "I'm not really sure but I think you'll be fine but don't sue us if you're not." :) ) 

Our next visitor was a member of my pain management team. She was really nice and extremely smiley for someone who deals with pain all day every day. Because of my bleeding disorder, she explained (with a smile) that things would be a bit more difficult...I can't have the ibuprofen-based meds that they usually give SDR patients because those are blood thinners. Everything will be fine, though, she said, still smiling, because luckily things like Tylenol exist, which are not blood thinners.

Then Smiley Pain Management Woman left and Nervous Nurse came back into the room. She proceeded to inform us that the hospital has a delightful new policy in which patients have to undress completely and be "sanitized" with alcohol wipes. She averted her eyes: Do you, um, want me to do it or do you want your mom to do it? 

(Therein began an awkward pause as my mom and I considered each equally uncomfortable possibility. Is there a "neither" option??)

We decided to let Nervous Nurse do it and I'll spare you the details except to say that her awkwardness reached a record high in this minute and a half. Not that I blame her, but the whole experience might have been a little more relaxed if she had been able to look me in the eye. ;)

Next up: the hospital gown and oatmeal colored socks. I endured the hospital gown, but I decided to forgo the socks because seriously? Hospitals are unpleasant enough without oatmeal colored socks...they could've at least picked an actual color. It didn't matter, anyway, because Nervous Nurse dropped one of the socks and couldn't find it.

Then she looked at me with an expression that I can only describe as terrified.
"Now it's time for the......" she squeaked, and she ran out of the room.

I'm not afraid of IVs, but there's no denying that having someone poke you with a needle repeatedly is sort of unpleasant. Especially when they don't know what they're doing. I looked at my mom with resigned laughter. I'd give Nervous Nurse a chance...more than likely, two chances - because that's usually when they have to go ask for someone else to try - but her abject terror at the prospect of giving me an IV told me everything I needed to know. I already knew that she wouldn't be able to get a needle in my vein.

When Nervous Nurse returned, my mom tried to get her to relax by lightening the mood with the story of Ben (not his real name) and the chaos that ensued when he tried to get an IV into me last summer.

Poor Nervous Nurse. The story didn't have the mood-lightening effect that I think my mom had intended. On the contrary, Nervous Nurse looked a little faint after that story. But she put on her brave face and I put on my brave face and stuck out my arm for her to try.

I told her that my left arm usually has better veins, but she wanted to try my right arm..."I'm right-handed," she said, "so it's easier for me," she admitted.

She searched for a vein for a while, then tried the crook of my arm, a little below where I'd had blood drawn. That was a no go, so she turned to my wrist next.

"Wrists...wrists kind of hurt," she said. (Sigh...yes...unfortunately I know this already....) "So I'm going to numb the area first."

"This part won't hurt," she said, as she poked me with a needle. (It kinda hurt)

Then came the next needle...the actual IV needle. (It hurt)

She dug around for a while in my wrist and just couldn't get it to go in, so she ran for someone else to try. This time, a bunch of nurses came in. Two worked on getting an IV in my hand, and another asked me if I'd like her to distract me.

"Sure!" I said, so I showed her the photos of the zoo animals on my phone with my left hand while they prodded around in my right hand. We actually had a coherent conversation about the St. Louis Zoo and her family while they were making their attempts with the needles, and I have to say, the distraction was actually legitimately helpful. :) They couldn't get the needle in, though, so they called in the anesthesiologist to try.

I don't know how many of you have seen Grey's Anatomy, but this anesthesiologist seemed like she'd fit right in with their cast...I loved her! She looked a bit like she could have been Arizona Robbins' sister, so I'll call her Dr. Robbins. Anyway, Dr. Robbins got to work searching for a good vein on my left hand, and while she looked and tapped, we talked. She admitted cheerfully that she doesn't usually like working with patients in the teenage to early twenties age group.

"I like you, though," she said, suddenly serious. "You're cool...your body involves two of my favorite specialties, hematology and neurology." (HAHAHA I've gotten compliments before, but never that one!)

At least my IV tape had teddy bears on it!
Dr. Robbins found a vein that looked promising(ish) in my hand, but mid-needlestick, it didn't look like it was going to work.

She clasped a hand around my wrist. "Try to relax your hand," she said, her voice subdued in concentration. "I've almost got it...almost...if I don't get it this time, I'm going to call in ultrasound...but...........yes. YES, I've got it!!!"

She actually had to use a preemie needle for that IV (I guess I still have preemie veins!!) and she explained that it wouldn't be sufficient to use as an IV for the duration of my surgery, but rather than subject me to a fifth needleprick, they'd use this one to put me under and find a better access point once I was asleep. Later I'd find evidence that they'd tried several times to start an IV in my legs, but the one they ended up using was in my left wrist. (For any parents of younger kids who might be reading this, please note that in kids younger than nine-ish, they put them to sleep with a mask and do all IVs once the child is under.)

Then we talked a bit more about surgery and post-surgery stuff. She'd be the anesthesiologist watching me in the operating room during my SDR ("SDRs are SO cool...I love them!! That neurosurgeon is a genius," she said.). When I mentioned that I'm prone to nausea issues post-surgery, she got her game-face on.

"I'm the same way...and there's nothing I hate more in this world than throwing up, so I'm going to do everything I can for you to prevent that." :,) She explained that she'd ask my neurosurgeon to administer propofol as one of my anesthestic drugs during surgery, which would help reduce my nausea and would also have the benefit of making the EMG nerve signals a bit clearer. She also said she'd administer more fluids, getting me to the top end of "euvolemic" (normal fluid balance), and since I'd told her I was a neuro major in college, she excitedly explained the details of how they'd use electrophysiology to determine my hydration level during surgery.

Next, I met a few more members of the neurosurgery team who would be present for my SDR (mostly observing and monitoring...Dr. Park does the actual surgery from start to finish).

And then: we waited. They were running a bit behind schedule, so it looked like it was just going to be my mom and me in the room for a while, waiting anxiously...but then my phone buzzed with a message from an SDR mom, an incredible woman who lives locally and whose daughter received the surgery a couple years ago and has thrived. This woman now pays it forward to other SDR families, and she often comes to the hospital on Friday mornings to visit SDR kids and drop off goodies for them.

She was waiting in the Same Day Surgery waiting room, and she said that if my mom went and brought her back, she would keep us company. <3 This woman made all the difference in the world while we were waiting...we had never met before, and yet she told us stories and laughed with us and conversed as if we'd known each other for years. Tears spring to my eyes even now as I write about her kindness. This experience has been times, it's been one of the hardest things I've been through. But it's also been one of the most beautiful. Near-strangers became family in an instant, reaching toward us with open arms. My mom and I were afraid of being alone in an unfamiliar city, but we soon found that we weren't alone at all. We were never alone. Everywhere we looked, we found love and solidarity.

When the neurosurgery team was ready for me, they came in and administered "sleepy medicine" into my IV. I remember it going in, and I think I remember hugging my mom before she left, but that's it. My mom waited in the Ronald McDonald room for all 4.5 hours of my surgery, and she received updates every update when they'd finished positioning me and setting me up for the actual procedure to begin, an update when they finished my right side, an update when they finished my left side, and an update when they were finishing up.

All in all, he cut about 2/3 of my sensory nerves from L1 to S2. I don't really remember waking up in the PACU, except that there were several medical people hovering over me and I couldn't stop shivering. My next memory is being in my teeth were still chattering and my face was itchy, which they said was a side effect of all the medications. But I never felt sick to my stomach at all on that first day (THANK YOU, Dr. Robbins!!!!). I really don't remember much else about this first night.

Except this: my legs felt incredibly heavy and numb (partly from the nerves severed and partly from the epidural), but wiggling my toes was easier than it's ever been in my entire much easier.

I closed my eyes and slept soundly for the rest of the night. Dr. Park calls his work "slaying dragons." And now, after 23 years, my dragon was gone. 

(Coming soon: post(s) about the rest of my hospital stay!)

Friday, July 21, 2017

Pre-Op Day 2: When a doctor places a pair of scissors on your back and moves them around a bunch

I thought I'd catch up with these posts in sequential order to help anyone who might be looking into SDR for themselves or their let's continue on with Pre-Op Day Two!

First, though - I added pictures with captions to my first two posts, so go back and take a look if you'd like. :) (Walk in the Park) (Pre-Op Day 1)

My second pre-op day began with a PT evaluation at 9 am! Oh but first: cupcake! I forgot to mention that the night before, my mom and I went to a cupcake place. She got a lemon cupcake, and mine was mocha espresso. We ate them back at the hotel and she put a candle in mine to celebrate my "new legs." :)

It got a little squished in the bag on the way back to the hotel but it still tasted wonderful :) 

ANYWAY...I digress. At 9am the next morning, we met with one of the St. Louis physical therapists and she brought us to a PT room, where a PT assistant waited with a video camera. My movements were filmed this entire time so that they could look back when I come for my follow-up appointment and assess my progress. (*shiver* Have I mentioned I hate being filmed? Especially with bare feet while someone watches and judges my movements!!!! No thank youuuu)

The PT eval started out easy. Walk across the room. Do it again. Sit down on this bench. 

I was totally acing it, you guys. I can walk across a room twice and sit down on a bench like a champ.

But things escalated quickly. Next it was, "Walk in a straight line along this strip of tape, one foot in front of the other." I always knew I would fail a field sobriety test, but now we have proof on film. I was a complete mess. ;)

And THEN: she held a foam roll a few inches off the floor and asked me to step over it without holding onto anything. My mom was sitting in the corner internally freaking out, probably thinking I'd fall flat on my face and break something on the day before my surgery. But I did it. I was pretty proud.

Then she raised it a couple more inches and asked me to try again.

This time, I tried, wasn't able to clear the roll with my foot, stepped on it, flailed around frantically, and very very nearly lost my balance. The PT was encouraging, praising me for giving it a try, but it was definitely not a dignified moment......and once again, they have this cringeworthy maneuver on film somewhere. Fantastic. ;)

Next, I had to walk up and down a set of stairs holding a railing. I did one step each without a railing too, but that's about my limit if I want to avoid maiming myself. (And remember that this whole time, my mom was in the corner pleading, "Please don't fall! Please don't fall! Please don't fall!")

Then it was: "Can you run?" Not really. But I made an attempt at some sort of uncoordinated fast-walk. (CP fast)

Lastly, she timed me while I walked as quickly as I could to one bench, then turned and walked back.

That was the end of my little movie, so the filming person left and the PT assessed my range of motion and level of spasticity using the Ashworth Scale. Spasticity scores range between 0 (no spasticity) and 4 (severe spasticity). The PT said my spasticity was "significant," especially in my ankles, hamstrings, and quads (what muscles are left? LOL). I got to see my numbers when they showed me the report on my day of discharge from the hospital, and most of my scores were ones and twos. Hopefully now they're all zeros!!

I also got a ranking of the severity of my CP according to the Gross Motor Functional Classification Scale (GMFCS), where 1 is the mildest form of CP and 5 is the most severe. I have always considered myself to be a 2 on the scale, as have my parents and previous PTs (at least after my surgery as toddler, once I could walk independently). This PT classified me as a 1, though, which was surprising!

Before we left this appointment, I got an "SDR Changes Lives" T-shirt :) and then it was off to radiology.

A "Rube Goldberg" type display near the radiology waiting room. It was fun to watch...these little marbles would be sent through a chain reaction down all these loops and then would be brought back again to cycle through.

We waited for foreverrrr in the radiology waiting room, but when they finally called us back a couple hours or so later, the actual radiology appointment was only a few minutes long.

They had me lie on my stomach on the x-ray table, and the doctor placed a pair of metal scissors on my back and wiggled them around. It seemed so silly, like something out of a children's book than an actual medical thing...but I guess they knew what they were doing! Apparently the doctor and radiology tech were using the scissors as a marker, watching the X-ray as they wiggled them around until they located the precise location of my L1 vertebra. Then they "X marked the spot" with permanent marker and covered it with Tegaderm so I could shower that night. This way, the surgeon would know just where to make his incision in my back to remove the piece of bone from my spine in order to access my spinal cord.

Look at this hot air balloon within the Children's Hospital! So cool :)

And then: ZOO TIME. :) Because the St. Louis Zoo is so massive, and because my pulled hip flexor was still bothering me, we took my wheelchair...and we had an amazing time. It was such an awesome way to get our minds off of surgery for a while and just enjoy ourselves. :)

My favorite animal at the zoo was this baby orangutan who was in love with his toy! <3

Later that night, we had dinner at Bar Louie's. It was pretty good...not amazing, but I liked it. :) Their french fries tasted like McDonald's french fries...and I'm not a fast food kind of person, but I DO enjoy McDonald's french fries. My sandwich was a BLTT - bacon, lettuce, turkey, tomato.

My Last Supper

There you have last night of spasticity. :) All in all, it was a pretty awesome day! But I was in for a rough ride......more on that later.

Thank you for all the prayers, well wishes, and support! <3

Wednesday, July 19, 2017

Surgery was a success!!

I feel so guilty for not updating more, but it's so difficult to type out updates on my phone. I will share many details (and photos) about my SDR experience in the days to come, but for now I'll just say that it was a success!!

My legs feel so much looser and's a crazy feeling! And I was supposed to need a walker to get around for three weeks, but I started taking independent steps about one week post-op, so we returned that walker today. :) My legs still feel wobbly though, so while I do some independent walking around the house (trailing against walls and furniture in case my legs give out), I have also been using my forearm crutches.

As the numbness in my legs wears off, my legs have been aching and tingling quite a bit, which is uncomfortable. Even wearing leggings and sleeping with sheets feels kind of itchy and scratchy. I am hoping that subsides soon, but most people say it takes at least a few weeks.

The hospital stay also had some rough patches (and some beautiful moments)...more on that later!!

You guys are awesome! Thanks for bearing with me and my (spotty) updates. I'll be back soon with more to share, so watch this space. <3

Wednesday, July 5, 2017

Pre-Op Day 1: Beginning and ending the day with tears

(Arrival day post is here, if you missed that!) (Typing on my phone...sorry if these posts aren't as organized as usual!)

Today was our first day of pre-op appointments. My first appointment wasn't until later, so we had some time to eat a leisurely breakfast at the hotel breakfast buffet...which, at least by my standards, was crazy fancy!! SDR patients and their families get free breakfast buffet coupons :) so...a few minutes into our breakfast, I guess it shouldn't have come as a surprise when a little boy in a wheelchair came in, his back cushioned by a huge pillow.

My mom saw them and started to cry...and she's not a crier but I think the reality of what was to come just hit all at once. Not happy tears, not sad tears, she said. Just...everything. The weight of everything just came crashing down.

After a few minutes, we introduced ourselves to them and they were so, so nice and encouraging. :) It's been amazing to find these new friends as we start on our journey.

The breakfast area at the Chase Park Plaza where we stayed :)
Another photo of the breakfast buffet :)

Here's what I had for breakfast that morning! It was really good!
I have trouble eating when I'm nervous though, so I didn't eat too much of it. 

After breakfast, I spoke with one of the hotel staff members who has seen so many SDR families come through. She said she will pray for me...and promised that when I come back for my follow-up, we will race each other. Whoever loses buys the winner some popcorn from the hotel movie theater. ;) I told her it was a deal!!

Next it was off to the hospital for our appointments. First I had to get blood drawn...which isn't common for SDR patients going through the Children's Hospital, but they needed to verify that my clotting was sufficient due to my mild bleeding disorder. It was the easiest blood draw I've ever received!!! The technician got it on the first try. :)

Then it was off to the neurosurgery wing to watch a video about SDR and have my appointments with the physical therapist and the surgeon.

Neurosurgery waiting room.
The picture on the wall is photos of children whose lives have been changed by SDR <3

In the room to watch the SDR video. They said to wait for someone to come help set it up, so my mom and I sat and stared at static for five minutes before we worked up the courage to touch the remote without permission and start the video ourselves! ;) 

All went almost feels surreal.

By far, the best part of the day was this: after assessing my gait, foot movement, and clonus, the surgeon turned to us and said that my improvements will "not be mild, not be moderate.
They will be significant."

Happy tears.

A Walk in the Park (St. Louis Edition)

I'm typing this on my phone, so this update might not be very eloquent, but I wanted to share the beginnings of our St. Louis adventures.

We arrived in St. Louis on the afternoon of the Fourth...and during both flights I got a window seat!!! My inner five year old was so excited about that.

At one of the airports, I got an Auntie Anne's pretzel!!! Fun fact: I love Auntie Anne's pretzels so much that I wrote an essay about them in third grade and read it aloud to my class. :,) 

SUCH PRETTY CLOUDS!!! I was "that person" taking tons of photos out the window during our flight...A stranger in a nearby seat barely concealed their smile at my excitement.

Another overhead photo! 

When we arrived, we decided we wanted to walk to see the fireworks in a park that neighbors our hotel. How far can it be, we thought. We checked a map and guessed it to be about 1.3 miles from the hotel...tricky but doable. Let's try it, we thought. (Can you see where this is going??)

On our way out of the hotel to begin our trek, we asked the concierge how far he thought they were. He glanced at me, sized me up, and said - his voice doubtful - "Well, it's hilly...and it's about two miles."

We thanked him and continued on our way. My mom rechecked the map and concluded he must be mistaken...definitely not two miles, no way!!

So we walked. And walked. And walked. We ran into some people also on their way to the fireworks (side note: Midwesterners are so friendly!!) and they didn't know how long the walk would be we just cheerfully followed the path, oblivious to what was ahead.

Then I started to get tired. My Fitbit registered a crazy high heart rate, and as I was standing against a fence resting, a literal SCHOOLBUS pulled up next to us.

"I'm not supposed to do this," she called, "but do you need a ride??"

(Wow, I thought. I must really look like I'm falling to pieces!)

We told her no thank you, thinking it must not be too much farther, but we were amazed at her generosity. :)

This whole walk we marveled at how flat the roads were - not hilly at all, as the concierge had warned us. But that's when we saw it: A GINORMOUS HILL.

By the time we arrived at the fireworks, I was dizzy, too tired to think, and beyond thirsty. My Fitbit buzzed on my wrist: "WE SAW YOUR 17 MINUTE RUN," it said. (I wasn't running.)

My mom asked me what I wanted to eat or drink. Water. Anything. Water.

There was no water to be found, but we managed to find some lemonade. :) The fireworks were fun to see, and once I had some time to rest and rehydrate, I started feeling human again. A little girl ran up to me during the fireworks and gave me her princess wand. I gave it back, but it made me smile...I wonder if she somehow knew that I need her magical princess powers this week. :)

On the way back, we took a shuttle home. When we asked a traffic guard for directions to the shuttle, he turned to us and said, "Oh yes I remember you walking in!" (I'm used to being recognized because of my CP gait, but this fair has thousands of people!!!)

Anyway, all in all I walked more than 6.5 miles throughout the day and 15,000 steps, which is pretty crazy for me...but I've been paying for it. :( I think I pulled my right hip flexor muscle. It's not too bad, but it's definitely annoying to deal with this on top of surgery worries! Hopefully it'll improve over the next couple days.

So that's Day One!! Today was the first day of pre-op appointments, which I'll recount in a second post for the sake of clarity. Tomorrow is the second day of appointments, and Friday is surgery day!!