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!!

Monday, July 3, 2017


Tomorrow. Tomorrow. Tomorrow.

We are flying to St. Louis tomorrow morning.

Praying that all goes well, and I will definitely keep you guys in the loop!

Thank you for all the love and support. <3