A NEW WAY TO RUN
by JOSHUA PHILLIPS
I dedicate this book to Buford Elementary School and everyone there,
because they let me be a regular kid and enjoy myself despite my many differences.
I'm Joshua Phillips, a nine year old boy from Buford Georgia and this is the story of my trip to the hospital in Towson Maryland for surgery on my hips and knees. I am a diastrophic dwarf, that means my legs are short and crooked, and I can not walk very well. I'm the littlest person in my school, and if you see me walking down the hall don't make fun of me because it hurts my feelings really bad. I am small but please don't treat me like a baby, because I am nine years old and in third grade.
We started out at my house in Buford Georgia at 5:00 A.M. We drove thirteen hours to reach Towson Maryland. My mom and I went alone. She missed the exit in Washington DC and we had to go about thirty minutes extra around Washington. That was a pain, because I was ready to get out of the car.
We went straight to the Pierre House when we got to Towson. The Pierre House is a place where dwarfs stay when they go to St. Joseph Hospital to see Dr. Kopits. He is a doctor who only works on dwarfs. He has patients from all over the world. The first thing we did when we arrived at the Pierre House was unpack and try to call my dad back home. I went out and played in the snow and bumped my head on the handicapped railing in front of the house. My mom put ice on it to get the bump to go down. I was worried about being well enough to have my surgery two days later. To make me feel better we went to Pizza Hut for supper and I heard "Friends in Low Places," my favorite song, on the radio.
Monday we went shopping at Toys R Us, my favorite store, in Towson Maryland, where I bought a new game for my Game Gear. After lunch my mom made me do my school work. Then we got to walk to the hospital, which is only one block from the house. I stomped on each pile of snow all the way to the hospital because I would not be able to walk or play in the snow again until I came back to Towson in about three months.
I went in the hospital and I went directly to the play room on the children's floor. This is a room where children can play when they are in the hospital. It has video games, books, basketball, and crafts. I saw Ms. Kathy the play room teacher. I have known her since I was three and had foot surgery at St. Joseph. Then Diane, Dr. Kopits' nurse, took me to the therapy room and I met Daniel Merritt, an eighteen year old boy who had just gotten out of his cast. He had just recovered from knee and feet surgery. He was from California and he was a diastrophic too. His father Abe worked as a firefighter. We became best friends and spent the whole month together.
We went to see Dr. Kopits for a pre-surgery checkup. This involves measuring each and every bend in my body. This tells Dr. Kopits how much each one of my joints moves. He keeps a record of me each year and is writing a book about diastrophic dwarfs and how they change and grow. Dr. Kopits is a funny man. He makes my doctor appointments fun by joking with me and playing along with all my jokes. Whenever Dr. Kopits comes on the children's floor at the hospital everyone is glad to see him. We start saying "Dr. Kopits on the floor" and laughing at how funny he walks toward us. He is always ready to laugh and hug every child around.
The next morning at 6:00 A.M. Dr. Kopits picks mom and me up at the Pierre House. He takes us to the hospital and it is raining. We went to his office to have pictures made. These are kept in my file to show how I looked before surgery and how surgery changed me. We went to day surgery and started pre-op. My surgery nurse Frank gave me a pill to knock me out a little bit. It made me feel kind of weird. Frank explained what was going to happen to me in surgery, and my mom put on hospital scrubs. These are the clothes nurses and doctors wear in the operating room to keep out germs. When we went to the operating room it smelled like the anesthesia gas that they put you to sleep with. My mom got to hold the mask over my mouth and nose until I went to sleep. I guess she left the operating room then because I did not see her again until I woke up in recovery. Recovery is a place you go to wake up from surgery and to be watched for a while to see if you are going to be all right. It is really very unusual for you to have problems after surgery, but the nurses are there just in case you do.
After surgery you sleep for a while and you sometimes hurt and need pain medicine. I had a special IV that gave me pain medicine every time I mashed a button. An IV is a needle that stays in your hand all the time and puts medicine right into your veins. It has an alarm that beeps whenever something goes wrong or it runs out of medicine. This happens a lot and it bugs me to be waked up by the beeping of an IV! Nurses come in every hour to check your temperature, heartbeat, and blood pressure. They even checked the heartbeat in my feet with a special machine that made my heartbeat in my feet loud enough to hear. All this attention makes it hard to sleep!
The next day after surgery I usually feel good enough to go to the play room and see all my friends. I went to the play room in my bed because I could not get up. Most days we stayed there all day long. We even ate our meals in the play room. My friends and I played games, laughed, talked, did our school work, and had fun. I had a student nurse named Gigi. She was one of my favorite nurses. She talked to me a lot. I also had to do exercise every day. These included lifting weights with my arms and exercising my legs to keep them strong while I was in the cast.
Every day at the hospital was about the same. We did the same things, ate our yucky meals at the same time, and spent a lot of time trying to make the day go by faster. Each day the play room teacher would have something for us to do. One day we made rice crispy treats with Ms. Peggy. Abe, Daniel's father, was silly. He carried around a video camera and made five different tapes while we were there. He sent them home to his wife and she got to know all of us. We had to say "Hi Claudia" in almost every video. I had a problem. I could not see my whole cast or my legs. Abe solved this problem with his video camera. He made a video of me in my cast and I got to see it on the TV. I had to lie in the bed on two mattresses. This kept my back straight while letting my legs from the knees down bend down to the lower mattress. Because of this two mattress set up, I could not get out of my bed, so I went everywhere in my bed. I became a common sight rolling around the children's floor in my bed with my teddy by my side, and my mom pushing me, bed and all.
Wednesday night in the play room was always special, but the Wednesday night before Thanksgiving we had a Thanksgiving dinner together with all the other patients and nurses. I, however, ate pizza and salad for dinner, while Daniel and everyone else ate turkey, dressing, sauerkraut, and all the other trimmings. I did finish up dinner with some pumpkin pie and candied sweet potatoes. After dinner we played Bingo. This was an every Wednesday night deal. We could play and win prizes. This was worth getting out of the room for even if it was the day after surgery for me. I got to win some stuffed animals and tea to drink.
One of the best parts of being in the hospital was getting mail. Sometimes I would get ten or twenty cards and letters at one time. I also got packages in the mail from my classmates at school and church. It was a lot of fun to open all these things and get money and presents from people I know and love. If getting cards was one of the best parts, then the morning of surgeries was the worst and best too. It meant getting up early and waiting for the big "slice" that was going to happen in the operating room. The best part of these mornings was Daniel and Abe coming to my room at 6:00 A.M. and entertaining me until we went down the elevator to surgery. Daniel and Abe would clown around and make me laugh so I would not think about the surgery.
When I got downstairs to the operating room door, I would cover my nose and mouth so I would not smell the operating room smell. Dr. Kopits laughed at me and hid his nose under my sheet also. I always asked for a blue cast and the first time they forgot the blue food coloring so I got a white one. The third surgery Dr. Kopits forgot the blue food coloring again so Dr. Howie worked his magic. He took two blue markers broke them open and put the inside wick in the water to turn the plaster blue. This worked great and I woke up with a blue cast. At the last cast change Dr. Kopits finally remembered the blue food coloring. This time they put that in the water and presto I got my last blue cast. Dr. Kopits, however, turned Frank, my nurse, into a blue smurf by cutting the food coloring bottle open in the air and splattering Frank and me with the blue food color. So when I woke up in recovery the nurse was surprised to see blue dots on my chin. Frank explained what happened to us and the nurse was relieved to know I was not sick with some strange disease.
I met dwarfs from all over America and the world. Lauren was from Boston MA. She was a twelve year old diastrophic. Gonzolo was my only roommate. He was from Chili, and did not speak English very well. Shera was a deaf dwarf from New York. I learned a little sign language from her like how to sign freedom. This was what she said as she left the hospital to go home. Enice was a three year old diastrophic from Germany. She could not speak English at all. Jennifer was a five year old diastrophic from Germany. She had been living in an apartment in Towson since July. She could not speak English when she got to Towson in July, but by November she could say a lot of English words. She taught me German. I learned to count to six in German, and some other words like "nine" that means no. I heard Jennifer say this a lot.
My dad and sister, Erin, flew to Towson on the Saturday before I was supposed to go home on Wednesday. They came to take us home. I was supposed to go home on Sunday, but I had to get a cast change on Tuesday. This was disappointing to me. When I started home my parents put me in the back of the van and wrapped me in quilts and blankets. It felt good to be outside of the hospital. I had been wanting a hamburger (not a hospital hamburger) since I went into the hospital and on the way home I ate McDonald's and Burger King's hamburgers for lunch and dinner. It was the best food I ever tasted.
When I got home it felt wonderful. It was the best feeling in the world. I got to eat my mom's cooking and see my pets. My mom and dad took me to school to see my friends. They asked questions about me. They really wanted to know how I use the bathroom in my cast, so I had to explain about urinals and bedpans.
I spent two months at home in the cast. My grandmother came to my house every day to stay with me. I watched long hours of TV and did a lot of school work. I was on the floor all the time. I even slept on the floor because it was cooler and more comfortable to me. My teacher from when I was in second grade was my home school teacher. Ms. Mclaurin came to my house two times a week for one and a half hour to help me with my school work. My speech teacher, Ms. Weil, also came twice a week. My mom and dad took me a lot of places in my wheel chair. They would load me in the back seat of the van and we would go to the store or out to eat. We just had to make sure there was plenty of room for my wheel chair where ever I went. At Christmas I was even in the church play. My pastor's wife dressed me as a town's person in Bethlehem and decorated my wheel chair. Soon Christmas had passed and I had one month left. The month of January was a very long month, but one fun thing was a big snow. My mom and dad put me in a large trash bag from my chest down, wrapped me in blankets and took me out in my wheelchair. I was a funny sight to see rolling up and down my street in a trash bag. At last it was January 27 and the next day my dad and I would leave.
The night before I left I had a dream that I was in Virginia. If my mom had not woken me up I would have been in Towson a lot sooner. My dad and I left at 6:45 A.M. January 28 bound for Towson, Maryland. I slept until about 9:30 lying in the back seat of dad's truck. About 12:15 we stopped at Burger King and ate lunch. At about 7:15 P.M. we arrived once again at the Pierre House and since it was late we had to get a security guard to let us in. Dad had to tote me up some very steep and narrow steps to our bedroom. Once the truck was unpacked we turned on the TV and watched the second half of Super Bowl 30. Dallas beat Pittsburgh 27 to 17.
January 29 we got up early and had some time to kill before we had to be at the hospital at 1:00 P.M. so we went to Toys R Us and looked around for a long while. We came back to the hospital at about 12:00 and ate lunch in the cafeteria. Then we went up to 2 North, the children's floor of the hospital, and the play room. There we waited for Diane to come for us and take my cast off. It was about 2:30 when she finally came. She took us into the room where they take your cast off and started sawing. My dad had the video camera and was filming the whole time so my mom could see what I looked like when the cast came off. Finally the cast was off, it smelled terrible and my legs were covered with long black hair. This was not there before they put the cast on. I felt like a Genie just coming out of his lamp. I said "Wow does it feel good to be out of there. Hang on a second, ten thousand years in a spica cast sure can give you a crick in the leg." Then it was straight to the whirlpool where they washed my legs to remove some of the dead skin and all of the smell "SHEW!" After the whirlpool Sister Celeste, the physical therapist, took me to a big table where she started my therapy. She let me bend my legs and hips as far as I could by myself then she gently moved my legs and hips up and down, and around and around. This hurt a little but not too much. The rest of the day was spent playing in the play room and getting settled in our room.
The next day we started the regular physical therapy routine. This is whirlpool and about an hour of therapy each morning. In the afternoon we had more exercise and then we could get in the pool. I thought this would be for play, but I soon learned the pool was therapy too. We had to exercise and walk a lot in the pool, but after I did my exercise I got to play ball and swim. I liked to play in the pool with Kyle and Monica. Monica was from Michigan, she was in therapy from hip surgery also. I could not get my head wet because I did not have ear plugs to protect my tubes in my ears. So, after pool I had to go to a special ear doctor to get ear plugs made just for my ears. They are form fitted plugs that only fit my ears and no one else.
I had to get x-rays taken today also. X-rays don't hurt at all, they're just pictures where you can see through your skin and tell if your bones are healing, and to see if your pins and metal rods are in place.
We went back to the play room where Brian, Kyle, my dad and I played Monopoly for a long time. Kyle won because he had almost every $500 dollar bill in the whole game. Kyle is a dwarf who was at the hospital because he had his hips and ankles operated on and he was in therapy just like me. Brian is a diastrophic dwarf who is old enough to drive and that is why he is here. He had a car accident and hurt his neck, but Dr. Kopits fixed it with surgery.
Wednesday was Dr. Kopits day in physical therapy. He came every Wednesday to check all the PT, physical therapy, patients. He looked at my x-rays and said everything looked good. This was a relief. He then measured every joint in my legs, hips, and ankles again, and said I was doing great for such a little time in PT. He said I needed new AFO's, Ankle Foot Orthosis, which are braces for my feet. Diane will make us an appointment with a brace maker as soon as possible.
Today in the pool I had more fun because I could get my head wet. Sister Celeste also let me do under water surfing. This is done by pushing a boogie board down to the bottom of the pool and I stand on it. The boogie board is then let go and I have to try to keep my balance. It's very hard but very fun. This works my hips and knees making them stronger and also helps me with my balance. I also ride a special tricycle a lot to help make my knees stronger. It feels good to be moving around on my own again.
February first was my first day of school with Sister Pat Phillips, she has the same last name as me. We have a school room in the hospital right next to my room. School started at 9:30, right after my 8:30 PT class, and lasted for about an hour. Today my dad got in the pool with us, but he did not get in the pool very often. I love swimming every day. While we were in PT we got a roommate for the first time. His name was Travis and he had his tonsils taken out. We rested for a while, boy swimming makes me tired, then we went to the play room looking for some friends to play with, but no one was there. Then we decided to go down to the gift shop to look around. When we came back up stairs I asked the nurses to cancel my dinner tray and give me a meal ticket so we could go down to the cafeteria and eat dinner. After dinner the brace man was there to measure my feet. He put casts on both my feet and then took them off again. I was glad that this time I was in a cast I did not have to stay three months! He used these casts to make a model of my feet. Using this model he will make new AFO's for my feet and we will go get them fitted once he has them completed.
Dr. Kopits said my left leg was not working as well as my right leg and he is going to take out the pin in my left knee. This pin was put in during surgery in November. He will do this minor surgery next week, and afterwards I should be able to move my leg much better.
We missed Bingo on Wednesday, because Nick, the bingo man, was sick. Monica, the weekend play room lady, let us play today. It is Saturday and we only have PT once today. Another special thing about today is that during the night it snowed about eight inches. It sure seemed strange swimming in the pool and looking out the window on eight inches of snow! Sunday we do not have PT, or school. It is a day of rest and we get to eat lunch in the play room with all the nurses and patients. We also got a new roommate. He is a achondroplasic dwarf and has a dislocated vertebra in his neck. His name is John and he is from Indiana. Dr. Kopits put him on a special machine to stretch his backbone for about a week to see if he gets better, if not he may have to have surgery.
February 6 is surgery day. That means no food after breakfast. I can have clear liquids until 12:00 then nothing until after surgery. We also had to go in to Baltimore City to Denisons, the brace place, to pick up my new AFO's. We're supposed to be there at 11:30 so right after school dad got permission to leave the hospital. We were only at Denisons a few minutes when Diane called and said Dr. Kopits wanted to wait until Thursday to do my surgery and we could go somewhere for lunch before we came back. I picked McDonalds for lunch. While we were gone John's mom and dad had a birthday party for him in the play room, but they saved us some cake. John is five years old today. I wore my new AFO's, and they feel great.
Dr. Kopits checked me the next day and said I was doing fine. He told me to keep practicing the way I walk. He says my muscles and joints work great now but I have to teach my brain to make my legs walk the way I am supposed to instead of the way I'm used to. I am scheduled for surgery tomorrow. We played Bingo again this evening. I won a Woody the Woodpecker Video.
I got my new night time AFO's today. They are just like my day time ones except they push my feet up a little to stretch my leg muscles. I went to surgery today and I was almost asleep when the big deal happened. I threw up! The nurse had a very powerful suction tube that they used to get the vomit out of my mouth. This was so strong that I thought it could suck everything out of my body, luckily I had my tongue in front of my throat and my air pipe. This saved my whole body from being sucked clean! I felt better when I left the operating room so went back to my room to put some stuff away. Then I went to the play room and had fun.
Friday, February ninth at 6:15 I was awakened by a charming nurse with my surgery pill that tastes kind of weird but does not hurt you. It actually helps you relax and not worry about surgery. About 8:00 we went down stairs to the operating room. We were waiting in the hallway outside of surgery for Dr. Kopits. But at 9:00 he still had not arrived so someone paged him. He called back and said he had forgotten me! I was mad and upset because he had forgotten me, but I also was forgiving because he does not usually operate on Friday. While I waited on Dr. Kopits we were passed by a lot of people who asked silly questions like, "Were you kicked out of your room because you couldn't pay the rent?". One man was from Australia. He said "hello mate" and "how are you doing today?". He sounded very Australian and I liked to hear him talk. By the time Dr. Kopits got there all the operating rooms were full. It was 12:00 noon when we finally got into an operating room. This was supposed to be a minor thirty minute surgery, but it took three whole hours because Dr. Kopits could not find the pin in my knee, because it was so deep in my knee.
I rested most of the weekend. Monday I went to PT with my leg bandaged and I still had a hemovac in my leg. A hemovac is a small tube that is sticking in your leg to allow any blood that collects in it to drain out. It drains into a round, plastic box with springs in it. The nurse empties it whenever it fills up with blood. Diane says it is time to take the hemovac out so she came to my room after PT and removed it. I thought this would hurt very badly, but it hardly hurt at all. She just clipped one little stitch that held it in and pulled the tube out of my leg. She then put a little medicine and a Band-Aid on it. Then I had to go back to PT and get into the whirlpool again so Sister could remove the little pieces of tape that were on my leg. THIS HURT A LOT! It pulled the hair, which there is now a lot of, on my legs out. It also pulled on the new incision Dr. Kopits just made in surgery. After this I finally got in the pool and had some fun.
Today while I was in school my dad and the nurses moved me to a new room. We just went down the hall one room and into the room with Michael Post and his mom. Michael is a diastrophic dwarf from Roswell Georgia. I have known them for a long time. My leg is doing much better now and I can lift it by myself. Dr. Kopits says I am doing very well.
The next morning early Michael went home. We got eight more inches of snow last night. My dad wants to go out shopping for a pair of shoes for me. I have not had any since I got my cast off. Dr. Poku, the pediatrician said he thought it would be all right and gave us a LOA, leave of absence. We went to a mall called Towson Town Center. We went to Hess shoes but they didn't have anything that would fit over my AFO's. We then went to another store called Van Dyke and Bacon, there we found a pair of high top sneakers that fit so dad bought them for me. These shoes are the only shoes that my dad and I have ever seen that don't have a left and right! You can put them on either foot! This is to help them fit over the AFO's which are wide and bulky.
We had a visitor today. She was a lady that came to talk to us about many different Indian tribes from all over the United States. After she left my dad and I got another LOA and left the hospital to go shopping. It was good to be out of the hospital. We went to a pet store just to look at the animals.
Monday February nineteenth, I walked for the first time since surgery. "Hooray!" I had to walk between two bars that are the same length and make sure to keep my feet straight and my bottom tucked in. This was pretty hard to do, but Sister Celeste said that I did a great job for my first try. She is going to let me walk with a walker tomorrow. If I do good this week she said that I may get to go home by the end of next week. "Hooray!, Hooray!"
I am doing fine walking on the walker and I can even use the crutches now. The crutches are harder because my hands can't hold the handles very well. Sister Celeste is very strict. If you stick your bottom out and lean over, she will thump you on the bottom. This gets my attention and I straighten up right away. Walking makes my feet hurt very badly. Sister Celeste says this is because I haven't walked for so long that when I put weight on my feet the tiny bones in my feet get small fractures in them, and the only way to heal them is to keep walking. If I stop for the bones to heal they will just keep fracturing every time I begin to walk again. Sister Celeste says the pain should stop in about three days. Every day I can walk farther and farther. This makes me tired and I have to rest after each time, but I can see I'm getting stronger.
Today is February twenty-third and it is my uncle and two cousin's birthday. I wish I was home to celebrate with them. My birthday is March twelfth and I think I will be home by then. I sure hope so! Dr. Kopits is still out of town and I can't wait till he gets back. I hope he approves of how I am walking and lets me go home.
Today Dr. Kopits comes to PT and checks on us. I am so excited! Dr. Kopits sees me at about 11:00 A.M. and he measures me all over again. Then he sends me downstairs for another x-ray. After lunch he checks my x-ray and says I am well enough to go home. This is the best news I have ever heard. That night after Bingo Ms. Peggy awarded me a trophy for walking. I was very proud.
Today is February 29 and I am going home! I came up here on the 28th and now I am going home on the 29th. This in only one day. Ha Ha, I wish! Really it is one month and one day and it seems like an eternity. My dad video taped a complete session of PT before we left so we could have it for my new therapist at home. He also taped my x-rays. This will help the new physical therapist see where all my metal hardware is. I have quite a lot of pins and plates. It was 11:00 A.M. when all the paper work was finished and we finally left the hospital. I was free! We drove for 12 hours, stopping only for lunch, bathroom breaks, and to get gas for the truck. We got home at 11:15 P.M. My mom and sister were still up waiting for us and we spent several hours talking and looking at my video tapes.
Now That I am walking, I am off to play instead of writing! Good Bye, Adios, Hasta Lavista.
Note from webmaster: DR. STEVEN KOPITS PASSED AWAY IN 2002.
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