- (4) I was just happy to be alive
Park Jeong-Hyeon (Kwon Su-Ji’s mother)
Su-Ji wanted to be a ballerina
So this summer was not only a hot, but also a very exhausting and long summer. We had just moved into the neighborhood a year ago before the surgery. Because I was busy going to work and Su-Ji busy going to kindergarten, I didn’t really get to talk to any of my neighbors. So Su-Ji was feeling lonely at home because there were no friends she could play with. Her only source of joy was video chatting with her kindergarten teacher and getting to see and talk to her friends.
We ran into people outside when we were walking outside, but because we didn’t really know then I couldn’t really explain too much about her condition. I just told them she had a leg corrective surgery. Su-Ji sometimes thought that it was a good thing that she had the surgery because people were nicer to her. She was upset about the surgery when she was bored at home or during disinfection, but when people showed sympathy to her, she seemed to like it.
In the month of July, when it was raining constantly, she couldn’t walk for almost a week. She was only using the wheelchair; I sensed that her left ankle was bowing. At the hospital, they told us that the left ankle bones got attached to each other, causing the ankle to become bowed. It was a kind of complication. So in the scorching month of August, we had to have another surgery for the ankle and be hospitalized for another 2 weeks. Not only was I worried about the 2-week hospitalization, but I was also afraid of the pain she was going to have to go through. But she wasn’t too afraid because she was going to see her favorite nurses and take fun classes at NamChon Dream Class. We had to stay at the men’s ward because there wasn’t enough room at the women’s ward, but she got along with the uncles and older guys there. Except for that one time when she threw a fit in the middle of an early morning, I think she had peaceful days. She even wanted to attend the classes on the day of hospitalization.
So we visited other wards as exercise, and decorated our bed with about 40 balloons, which were actually for lung exercises. Because I saw her suffer so much after the 1st surgery, I was worried about the ankle surgery too. But she tolerated it very well. She blew so many balloons for 8 hours without a sip of water, but didn’t complain even for a bit. The uncles at the ward were surprised to see her so bold. I also felt so proud of her for being so mature.
That is how we spent our summer vacation days in August. I was glad that we were at the air-conditioned hospital, away from the deadly heat. Of course in the midst of all that, Su-Ji was complaining that it was too hot, so we bought an electric fan for her. But then the guy next to her felt cold, so he was wrapped in a blanket at night. So eventually he let her have the bed next to the window. After discharge, she had to stay lying on the bed until ankle stabilization was finished. The professor said she could walk, but when she put her leg down even for a bit, all the blood accumulated around the ankle, causing pain. She couldn’t even use the wheelchair for a long time. So we only got to walk around the parking lot for a bit after disinfection every night. She couldn’t play the piano as she wanted to, all she could do was draw pictures or read books all day. But luckily she had better appetite than the first surgery. I was a bit worried that she could get constipation since she was laying down the whole day. Thanks to the fruits, she had no problem going to the bathroom. She was rather worried she was making me go through so much. After a long period of lengthening, Su-Ji had grown 11.6cm on the right leg and 11.8cm on the left leg. Her legs were now good enough to take ballet. So she got the ambition to learn ballet once she was all cured. I told her she could take swimming lessons too, but said she definitely wants to learn ballet. So her little hope might come true by next spring.
Even today, she is coping with the pain well, to make her dream come true. Children with atopic dermatitis have slower scar healing and bone lengthening. We were able to do daily lengthening of 1mm each day and ended up with 11cm but, for ankle correction, I had to adjust 0.5mm, 1mm, and 1.5mm for different pins, anyways it was very confusing. But the doctor in charge gave me instructions very well, and after a week it was easy to follow. But it was terrible disinfecting the pins inserted in the foot. Probably because the skin of the foot is weaker. After we have complete lengthening, we were waiting for the bone to fill in for 2~3 months. Meanwhile, she went to the kindergarten from time to time, and visited some neighbors we got to get close with, and rode a bike. She got tired of walking so she rode a bike more often now.
Professor said if the bone fills in by November, we could take out the Ilizarov device. Meanwhile we had been sending the pictures taken in Busan, then we came to the hospital for the first time in 6 weeks. All of a sudden, they were saying that she has to go through another ankle surgery. When Su-Ji was done with the surgery and fixation, I should have bought her the ankle braces. I bought her the braces later on when I started noticing that her feet were bending again, but the appearance already didn’t look so good. The professor hadn’t said anything about the ankle when I sent him the pictures, and the doctor in Busan, even though he had no knowledge about Ilizarov, thought that the ankles looked okay. So we weren’t thinking to face anything unexpected, but it turned out that she had to do one more surgery.
So that day, we got a date for the surgery, then even though we were completely upset but Su-Ji didn’t seem to be upset or depressed. Rather, she looked like she was happy about it. She really wanted to go to the hospital as soon as possible. She kept asking us to go to the hospital early, and she even told the nurses that she liked it at the hospital better. She liked it so much because of all the nurses at orthopedics who welcomed her. On top of that, the music therapy teacher opened a private class for her on the day she returned, and let her borrow her favorite children’s story books.
That is how our 3rd surgery began. She was still happy until the surgery and even after, she tolerated very well. But this surgery being the 3rd, she knew what to do. She even taught an older guy who had just come out of the surgery how to blow the balloons and played together. Of course, Su-Ji won every time with his help. So right now she is in the fixation process again after the 3rd surgery. It won’t take too long until the whole process is complete, but I believe she will make it through everything. I don’t know how long this process is going to be, but she will remember the classes she had at NamChon Dream Class and the kindness of nurses during the days she was at the hospital.
No one can tell how many days are left exactly until complete bone healing. But we think we spent the summer of 2010 pretty meaningfully. I also believe it became a chance for Su-Ji to mature a little more. By seeing other patients who were in greater pain than her, she realized that she was not the only one suffering from pain. We also became closer to our neighbors at our apartment. She gets along with her friends very well, and I think she also became more confident.
She is looking forward to finishing all the treatments before spring, taking ballet lessons, and maybe becoming a beautiful ballerina in the future. I would recommend the Ilizarov surgery to dwarfism patients and whoever is in distress due to short height. Being tall isn’t everything in life, but it provides you with chances and gives you confidence and hope. The period of lengthening or fixation is definitely time of agony. But you will feel very satisfied afterwards. 7-year-old Su-Ji is already looking forward to thigh surgery. I think the expectation she got to have after the surgery made her forget about the painful days she had. I hope many people can have a great opportunity like this and dream big and be hopeful for their future.
Park Jeong-Hyeon (Kwon Su-Ji’s mother)
Su-Ji wanted to be a ballerina
So this summer was not only a hot, but also a very exhausting and long summer. We had just moved into the neighborhood a year ago before the surgery. Because I was busy going to work and Su-Ji busy going to kindergarten, I didn’t really get to talk to any of my neighbors. So Su-Ji was feeling lonely at home because there were no friends she could play with. Her only source of joy was video chatting with her kindergarten teacher and getting to see and talk to her friends.
We ran into people outside when we were walking outside, but because we didn’t really know then I couldn’t really explain too much about her condition. I just told them she had a leg corrective surgery. Su-Ji sometimes thought that it was a good thing that she had the surgery because people were nicer to her. She was upset about the surgery when she was bored at home or during disinfection, but when people showed sympathy to her, she seemed to like it.
In the month of July, when it was raining constantly, she couldn’t walk for almost a week. She was only using the wheelchair; I sensed that her left ankle was bowing. At the hospital, they told us that the left ankle bones got attached to each other, causing the ankle to become bowed. It was a kind of complication. So in the scorching month of August, we had to have another surgery for the ankle and be hospitalized for another 2 weeks. Not only was I worried about the 2-week hospitalization, but I was also afraid of the pain she was going to have to go through. But she wasn’t too afraid because she was going to see her favorite nurses and take fun classes at NamChon Dream Class. We had to stay at the men’s ward because there wasn’t enough room at the women’s ward, but she got along with the uncles and older guys there. Except for that one time when she threw a fit in the middle of an early morning, I think she had peaceful days. She even wanted to attend the classes on the day of hospitalization.
So we visited other wards as exercise, and decorated our bed with about 40 balloons, which were actually for lung exercises. Because I saw her suffer so much after the 1st surgery, I was worried about the ankle surgery too. But she tolerated it very well. She blew so many balloons for 8 hours without a sip of water, but didn’t complain even for a bit. The uncles at the ward were surprised to see her so bold. I also felt so proud of her for being so mature.
That is how we spent our summer vacation days in August. I was glad that we were at the air-conditioned hospital, away from the deadly heat. Of course in the midst of all that, Su-Ji was complaining that it was too hot, so we bought an electric fan for her. But then the guy next to her felt cold, so he was wrapped in a blanket at night. So eventually he let her have the bed next to the window. After discharge, she had to stay lying on the bed until ankle stabilization was finished. The professor said she could walk, but when she put her leg down even for a bit, all the blood accumulated around the ankle, causing pain. She couldn’t even use the wheelchair for a long time. So we only got to walk around the parking lot for a bit after disinfection every night. She couldn’t play the piano as she wanted to, all she could do was draw pictures or read books all day. But luckily she had better appetite than the first surgery. I was a bit worried that she could get constipation since she was laying down the whole day. Thanks to the fruits, she had no problem going to the bathroom. She was rather worried she was making me go through so much. After a long period of lengthening, Su-Ji had grown 11.6cm on the right leg and 11.8cm on the left leg. Her legs were now good enough to take ballet. So she got the ambition to learn ballet once she was all cured. I told her she could take swimming lessons too, but said she definitely wants to learn ballet. So her little hope might come true by next spring.
Even today, she is coping with the pain well, to make her dream come true. Children with atopic dermatitis have slower scar healing and bone lengthening. We were able to do daily lengthening of 1mm each day and ended up with 11cm but, for ankle correction, I had to adjust 0.5mm, 1mm, and 1.5mm for different pins, anyways it was very confusing. But the doctor in charge gave me instructions very well, and after a week it was easy to follow. But it was terrible disinfecting the pins inserted in the foot. Probably because the skin of the foot is weaker. After we have complete lengthening, we were waiting for the bone to fill in for 2~3 months. Meanwhile, she went to the kindergarten from time to time, and visited some neighbors we got to get close with, and rode a bike. She got tired of walking so she rode a bike more often now.
Professor said if the bone fills in by November, we could take out the Ilizarov device. Meanwhile we had been sending the pictures taken in Busan, then we came to the hospital for the first time in 6 weeks. All of a sudden, they were saying that she has to go through another ankle surgery. When Su-Ji was done with the surgery and fixation, I should have bought her the ankle braces. I bought her the braces later on when I started noticing that her feet were bending again, but the appearance already didn’t look so good. The professor hadn’t said anything about the ankle when I sent him the pictures, and the doctor in Busan, even though he had no knowledge about Ilizarov, thought that the ankles looked okay. So we weren’t thinking to face anything unexpected, but it turned out that she had to do one more surgery.
So that day, we got a date for the surgery, then even though we were completely upset but Su-Ji didn’t seem to be upset or depressed. Rather, she looked like she was happy about it. She really wanted to go to the hospital as soon as possible. She kept asking us to go to the hospital early, and she even told the nurses that she liked it at the hospital better. She liked it so much because of all the nurses at orthopedics who welcomed her. On top of that, the music therapy teacher opened a private class for her on the day she returned, and let her borrow her favorite children’s story books.
That is how our 3rd surgery began. She was still happy until the surgery and even after, she tolerated very well. But this surgery being the 3rd, she knew what to do. She even taught an older guy who had just come out of the surgery how to blow the balloons and played together. Of course, Su-Ji won every time with his help. So right now she is in the fixation process again after the 3rd surgery. It won’t take too long until the whole process is complete, but I believe she will make it through everything. I don’t know how long this process is going to be, but she will remember the classes she had at NamChon Dream Class and the kindness of nurses during the days she was at the hospital.
No one can tell how many days are left exactly until complete bone healing. But we think we spent the summer of 2010 pretty meaningfully. I also believe it became a chance for Su-Ji to mature a little more. By seeing other patients who were in greater pain than her, she realized that she was not the only one suffering from pain. We also became closer to our neighbors at our apartment. She gets along with her friends very well, and I think she also became more confident.
She is looking forward to finishing all the treatments before spring, taking ballet lessons, and maybe becoming a beautiful ballerina in the future. I would recommend the Ilizarov surgery to dwarfism patients and whoever is in distress due to short height. Being tall isn’t everything in life, but it provides you with chances and gives you confidence and hope. The period of lengthening or fixation is definitely time of agony. But you will feel very satisfied afterwards. 7-year-old Su-Ji is already looking forward to thigh surgery. I think the expectation she got to have after the surgery made her forget about the painful days she had. I hope many people can have a great opportunity like this and dream big and be hopeful for their future.