September 19, 2017

The Decision

Once we knew what dwarfism I had, it was up to me to decide whether I would get limb lengthening surgery or not. Limb lengthening

With the hospital nurse. Little did I know therapy was going to get more challenging
With the hospital nurse. Little did I know therapy was going to get more challenging

surgery is common for Little People when they are in Elementary school, all the way up until they normally graduate high school. The purpose for starting out so young is that the bone is more malleable and heals and grows faster than when you get older. This means when the bone is lengthen, the younger you are, the faster the bone will heal and the faster you’ll be able to gain more height.

The way the my surgeon, Dr. Dror Paley, does the procedure is pretty radical, almost like a science fiction or a horror story. What the surgeon did for me was he broke all six bones in the legs (both of the femurs, tibias, and fibulas), drill in eight sets of three external pins (24 pins) into my legs connected with external fixators, and drilled two internal pins by the ankle and two by the knee for stability. Then, every day for three and half to four months, we would lengthen the legs about 3/4 of a millimeter for the tibias and fibulas and 1 millimeter for the femurs. This was done using an allen wrench and rotating some screws on the outside of the fixators that would then pull the pins drilled into my legs apart, thus separating the

With the surgeon himself on the day he says I'm done lengthening and can go home
With the surgeon himself on the day he says I’m done lengthening and can go home

segmented bone. Once I was done lengthening, I had to wait about another four months for the bones to completely heal so I could get the fixators removed. The end result, you gain between 4-6 inches in length!

Sounds simple right?

Now most Little People actually get this procedure done three times during their life and an additional lengthening of their arms to keep them in proportion with the rest of the body. The first surgery you gain typically 4 inches, and then the last two surgeries you gain both times 6 inches. So in total, you can gain up to a total of 16 inches from this surgery.

Now there was no way I was going to do all of those surgeries! After the spine surgery, I have had a strong aversion to any type of surgery that was not completely necessary for me. When we started seeing Dr. Paley when I was 10 years old, I was terrified at those big, metal, clanky fixators that weighed about 4.5 lbs on each leg. And at the time as well, we were monitoring my spine so we weren’t actually thinking about lengthening my legs at the moment. We wanted to get the spine fixed first.

Walking with 4.5 lbs on my legs
Walking with 4.5 lbs on my legs

In addition, I had this notion that if I lengthened my legs, I wouldn’t be Cuquis anymore. I was ok being little and had gotten used to being 3 feet tall. I didn’t want any surgeon to tell me I could be like as tall as an average sized person. I was pretty defiant and against it.

But once I got into High School, and people were starting to drive, going out, and being independent, I

With June, the radiologist
With June, the radiologist

realized that I felt I was missing out. My legs were too short obviously to reach the gas and accelerator, and I wasn’t tall enough to even reach pedal extensions. In addition, college was coming around the corner and I knew I wanted to go to Duke University and live away from home. But how could I live on my own if I couldn’t even reach the door, the toilet seat, or reach and see above the kitchen table at home? Walking long distances was also very difficult and my right knee was slightly bowed to the point where it would buckle from time to time and I would constantly be falling.

So, I finally made a tough decision. I decided to have the limb lengthening surgery during the spring break of my junior year of high school and just take the rest of the semester off from school to recover and lengthen my legs. Luckily, I was at a private school at the time so they allowed me to use the grades I had when we went off for spring break as my final grades for the year.

The Surgery & Recovery

Thoughts on surgery before going in

Going into this surgery this time, I was older and more aware of the risks involved. I heard that most people who get these surgeries end up getting infections at the pin sites, and that a lot of people get nerve and muscle compression and have to go in for another surgery to release the tension. I also knew going in was that my only goal was not to be as tall as my peers. I knew I was never going to get to be as tall as them just due to my type of dysplasia. Also, my identity has been surrounded about the fact that I am little, and believe it or not, I did not want that to be taken away from me. That was a perk to being a Little Person – people always knew who you were.

However, my goals were to get as much length so that I could be able to reach pedal extensions and drive, and to get this done now so I can independently live away for college. So I knew I was going to gain some height, which I knew would help me in the future towards independence.

"Growth means change and change involves risk. Stepping from the known to the unknown." - George Shinn
“Growth means change and change involves risk. Stepping from the known to the unknown.” – George Shinn

We traveled to West Palm Beach, FL to the Paley Advanced Limb Lengthening Institute at St. Mary’s Hospital in March of 2012. The date of surgery was March 15th, 2012 (I always remembered this day because one of my good friend’s birthday is the day after). Before the surgery, my mom and I went to Flagler beach to relax, and I kept thinking to myself, Is this going to be worth it? Is this risk going to pay off? Am I going to make it out ok? Back at the rental house, I found a book with inspirational quotes and found one that fit exactly as I was feeling that day:

“Growth means change and change involves risk. Stepping from the known to the unknown.” – George Shinn

That quote resonated with me because I realized that in order for me to grow, both physically and emotionally, I needed to take this risk. I needed to face the unknown in the face and conquer it, otherwise I was going to regret it down the line.

Desperately wanted some independence...so I tried my motorized scooter.
Desperately wanted some independence…so I tried my motorized scooter.

First night after surgery

The overall surgery itself went fine. But when I woke up, I was in excruciating pain…almost as much, if not more, than my spine surgery. I had never felt this pain before. My legs were swollen and felt they were on fire! When I saw the fixators on my legs for the first time, I almost passed out. I looked and felt like a transformer. The one thing that surprisingly helped my pain at the beginning was to move my legs for therapy to get the blood pumping. That changed during the course of the lengthening process.

First two weeks

My mom was a big support again for this surgery. Every night before bed, she would clean the pin sites and re-wrap the pins with gauze. We both would be so exhausted, both physically and emotionally, that at the beginning, it would take her three hours to clean the pins. We would both then start crying out of frustration. The reason it would take a long time was everyone telling us that I was bound to get an infection from the sites and it was inevitable. My mom being a pediatrician, there was no way she was going to let that happen. As a result, I never got an infection from the sites…ever.

There was a time at the very beginning when I felt that this pain was not worth it for me and I was so tempted to just get them out. That devastated my mom when I told her, but in the back of my mind, I knew I would probably regret taking them out, and my mom pointed that out to me. I had made the commitment, and I was going to stick with the commitment. Luckily, as my body got used to those foreign metal objects, the pain became more manageable.

(Left) Mama, (Right) Grandma
(Left) Mama, (Right) Grandma

The ups and downs

We also had my grandma there to help with cooking and errands, which was a life saver for us as my mom was busy tending to me. I had to

Showing off the fixators

try to keep up with as much work for school as I could everyday, go to physical therapy every day for an hour where they had me stretch, strengthen and towards the end, walk with the fixators. To get me walking, we would play Nat King Cole’s L-O-V-E to get me inspired to move and to keep me on a rhythm. Being able to walk with those things was such a big accomplishment for me and I was extremely happy whenever I would get a chance to move. And every morning, I would wake up to do leg lifts to the song Low Rider by War. By the end of it all, I developed really strong calves and thighs and six-pack abs.

With the lovely Christy Ruhe, the patient advocate.
With the lovely Christy Ruhe, the patient advocate.

I also made friends with one of the patient advocates, Christy Ruhe. She had the same surgery several years ago and understood how difficult the process was emotionally for me. She was kind, patient and a wonderful human being and she made the harder parts a little easier.

But I think what was maybe the hardest part though of this process was more being away from home and missing my space, my family, my doggies, and my friends. I felt isolated at times and could never feel “comfortable” in our rental home. The home was not accessible friendly either as my mom had to buy customized ramps for the front door and back porch, the door frames to the kitchen and master bedroom were narrow, so the only way to access these rooms was going out to the back porch, and go through the rooms from the outside.

To top it all off, I had really bad insomnia. The surgery traumatized me so much and because I was limited to sleeping on my back, getting comfortable was really difficult. I became anxious going to bed, the beds themselves weren’t comfortable for my back so I resulted to sleeping on one of the lounge chairs from outside, which we brought indoors. The sleepless nights then caused my mom and I to argue because she was tired, and I was tired, and we all just needed a break.

My support

I am lucky that I have so many good friends and family members also supporting me. About halfway through the process, my great-uncle, Tio Felipe swapped places with my grandma and he was like a god-send. We always called him “Mr. Cool Cat” because he was always so calm and he reminds me a bit of the Buddha himself. If my mom and I were arguing with each other due to exhaustion, he would tell both of us it was ok, allowed us to cry and then we would all be fine. He was just also a good distraction for me, making me laugh, and making me feel normal, like I didn’t have this surgery.

With Mr. Cool Cat himself, Felipe Corrales. He was such a big help and so caring throughout all of this.
With Mr. Cool Cat himself, Felipe Corrales. He was such a big help and so caring throughout all of this.

And before the surgery, my high school also gave me another going away party for me and raised money to buy me an iPad so I could communicate with my friends from back home and

With Jana and Nan showing off our new Alex and Ani bangles
With Jana and Nan showing off our new Alex and Ani bangles

at school. They even made going away cards for me which made me feel connected to home again.

My mom’s best friend from college, Jana, and her mom came down from Maine to also help out and visit, during Mother’s Day Weekend, which was also a big help to me. Jana is like an aunt to me and for that weekend I was able to forget the fact that I was confound to a wheelchair and we went and we all went to have fun. That was the weekend when we discovered the shop Alex and AniThis shop dedicated sold bangles made in the US that had charms that symbolized personalities, beliefs, and different inspiring thoughts. Retail therapy was one of the highlights of this journey. I began a bangle collection that included bangles that reflected my identity – such as the lotus flower as I believe in the Buddhist philosophy of peace and non-judgement – and my journey with this limb lengthening surgery – such as one that had the quote, “Life is not a sprint, it’s a marathon.

Life is not a sprint, it’s a marathon.

The final product of my hard work. 4.5 inches!
The final product of my hard work. 4.5 inches!

The end of the finish line

The end of this process was very difficult. It was June, I had been lengthening for almost three and a half months and I had stopped lengthening both lower legs and my right thigh. It turned out that the reason the right leg was bowed at beginning was because it was a whole half inch longer than the left leg. My left thigh then at the end had to play catch up to get it equal in length to the right. I felt the pins resisting to move as my thigh kept getting tighter and tighter.

With the whole team
With the whole team

On one of my last PT sessions, I remembered I was just ready to go home. One of the stretches we had to do was called the “Thomas Stretch,” which is when you lie on your back at the edge of the table or bed and the therapist bends your leg down and back until it hits 90 degrees. My surgeon said that one of his priorities for us patients to go home was if we were able to make it between the 80-90 degree range. Me being stubborn, I wanted to get to that 90 degrees. The right knee was ok doing it, but since the left leg was still catching up, it was really tight. As they were stretching, I kept telling the therapist to keep going further and further…until suddenly there was a SNAP!

(Above) Tony, the ortho-tech and (Right), Servando, the physicians assistant and a fellow Cuban
(Above) Tony, the ortho-tech and (Right), Servando, the physicians assistant and a fellow Cuban

Excruciating pain came from my knee and blood was oozing out of the pin sites. It’s one thing to be bleeding a few days or a week after surgery. But if it’s been three months, blood coming out was not normal. However, the therapist said the two words that to this day makes my blood boil: “That’s normal.

The fact that she seemed so apathetic about it got me really upset. My mom and I both started crying, and I thought for sure I had broken a bone and that I wouldn’t be able to go home and that all of the progress I had made was going down the drain.

But to our good fortune, nothing was broken. What had happened was the pins had tore the muscle, hence the large amounts of bleeding. My surgeon, Dr. Paley, finally cleared me to go back home and within the next few days, we packed up and flew back.

The total amount of inches I gained from this surgery: 4.5 inches. And when I went home, I began noticing how much 4.5 inches made a major difference in my life.

Home Sweet Home

Home Sweet Home
Home Sweet Home

Once we got home, the rest of the recovery process was so much better. Because I was no longer

lengthening, I did not have to worry about tight muscles. I just needed to focus on getting my bones healed

Of course my friends come right away to greet me when I get home.
Of course my friends come right away to greet me when I get home.

so the fixators could come out. And it was so much better doing it in the comfort of my own home where I was surrounded by people who love and support me.

I was immediately greeted by my high school friends and neighbors when I came home. I cried tears of joy and exhaustion and just thankful to be home. I had my doggies with me to provide comic relief and comfort. And I slept so much better to…probably the best since I had started the surgery three months ago.

And finally, I started noticing the difference and positive outcomes of the surgery. Because I was always bound to my wheelchair in Florida, with the exception of PT, I never knew how tall I would actually be. When I stood next to the sofa, I was shocked that I could see over the sofa! When I stood next to the kitchen table, I could see over the table!

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Winning Homecoming Queen even in fixators!

I went to school in my wheelchair because I wanted to social outlet. My friends supported me and pushed me around school and made sure I was safe. I felt like a student again and not just some patient in a wheelchair. During this recovery process, I was nominated for Homecoming Queen and won it as well with the support of my friends! It was so nice to be included back in high school life again Life back home compared to in Florida was significantly better.

The Removal

Then, on October 31st, 2012, seven months since I had the operation, I went back to Florida and got the fixators removed. Oh what a happy day it was for all! I remembered I was waking up from the anesthesia and I murmured to the nurses, “My mom is going to scream when she sees me.” The nurses were confused, but what I meant was she was going to scream with happiness once she saw my fixators were gone.

We asked to keep the fixators as a memento, and 4.5 lbs those darn fixators weighed! Looking back on it, I still can’t believe I held that much

Fixators are finally off!
Fixators are finally off!

weight on me! I’m 54 lbs, so 4.5 lbs is a lot for someone my size.

So nice not having to see those fixators anymore
So nice not having to see those fixators anymore

For the whole month of November, I wasn’t allowed to bear weight because the holes where the pins were needed to heal. I took calcium and silica pills like crazy to help with bone genesis, and boy was that one month waiting long. I was enjoying the fact that my legs felt lighter and that I could actually bend my knees to 90 degrees no problem.

And then, on December 8th, 2012, we got an email from Dr. Paley. Dr. Paley was a man of few words, but these few words were the driving point and beginning of my new life with long legs:

“Bones healing well. Can start bearing weight and walking.”  – Dr. Dror Paley

My mom and I screamed! And I cried! I was so happy! I was officially DONE! After suffering for a whole seven months, dealing with pain, insomnia, and anxiety, I had completed this journey! And that evening, I stood up for the first time with my new legs, and I felt so tall. And I felt so light. I was smiling from ear to

Standing up for the first time without my fixators!
Standing up for the first time without my fixators!

ear, and I couldn’t wait to begin walking!

And not only that…I got into Duke University I few days after I received this news. So, December was a good month for all of us.

Celebration

We had a “Celebration of Long Legs Party” the end of December where we invited all of my friends and family who supported me both there and from afar during this long journey. I couldn’t completely dance yet as I was still working on standing up and walking, but I had so much celebrating, knowing that life was going to be much easier because of this surgery. And by the end of January, I was using my scooter again,  by April, I was dancing away at prom, and in May, I walked up the stage and received my diploma with my brand new legs.

My lesson to you

Celebration of Long Legs Party!
Celebration of Long Legs Party!

If you are reading this and are thinking about having a limb lengthening procedure yourself, I don’t want my experience to make you afraid. Everyone has different experiences. I am not going to lie, it will be hard, challenging, and tiring both emotionally and physically.

What helped me was having a really strong support system. My mama for one has been my rock. We both went through a lot of ups and downs with this procedure, but I knew she would never leave my side. Because like my spine surgery, she kept pushing me forward and reminding me how worth it it’s going to be in the end.

Because of this surgery, I can walk longer distances, I can unlock my front door, see and reach the kitchen table, and am able to be independent in college. My next step now is the summer of 2017 after I graduate from Duke, I am going to finish my online driving test and finally get my license so I can achieve my number one goal.

This surgery has taught me so much that I cannot let obstacles get in the way of what I want to do in life. There was one evening back when I still had the fixators but was at home when my mom bought me this card that had this quote….

“Life’s not about waiting for the storm to pass, but rather it’s about learning to dance in the rain.” – Vivian Greene

This quote is my favorite quote, not only because it talks about dancing, but because it goes back to what I said about not letting obstacles get in the way of achieving your dreams and goals. I have not let these surgeries or my size stop me thus far from doing what I want to do in life. And it never will…

…because I am 3 feet 4.5 inches tall, and I am proud of it!