Jonathan's story has been posted under "Florida" on the other PFFDvsg web site for a few years now and is reprinted below. We were very happy with the results from both lengthenings although it was not an easy process. Both lengthenings were done at Shriners Hospitals--the first in Tampa and second in Twin Cities.
The second lengthening is nearly complete. He only has to do rehab to regain his strength and range of motion. His leg is 3 inches longer than when we started. The really neat thing is that he no longer needs to wear a shoe lift! We did not have any complications to speak of this time.
The only thing that was harder for him was that he was older and in school this time so had to deal with all the looks and questions/comments from other kids. I strongly recommend doing an education session at your child's school to answer the questions from other kids so your child doesn't have to face them all alone.
Feel free to contact us if you have any questions or comments.
Read Jonathan's Story...
Jonathan's Story
Location: Florida
Born: 1994
Diagnosis: Unilateral PFFD
Treatment: Lengthening
Told by: Christine Ross
Date written: August 2000
Last Update: August 2001
BACKGROUND
Jonathan was born in November 1994. He is our middle son. His brothers are 1 ½ years older and 3 years younger. We were very fortunate to have Jonathan accurately diagnosed before he was 24 hours old. The general orthopedic doctor came the day after he was born to tell us that he had proximal femoral focal deficiency or PFFD. He talked to us for a long time discussing different things we should keep in mind at that time and as Jonathan grew. It was a lot of information, but I’m grateful that everything he told us has held true even now. He couldn’t yet tell if the hip was properly formed but if it was then Jonathan could have his leg surgically lengthened when he got older. He said that this would be a long procedure consisting of several surgeries over the period of Jonathan’s childhood and it would be best if we could stay in one place for this. He talked a little about how it would affect the life of our family and my husband’s career. He knew that it might be difficult to stay in one place since we were in the military, so it would be very important for us to know as much as possible about Jonathan’s condition and treatments to help maintain continuity. He said he felt that it would be important to pick a treatment plan and stick to it. He said we should realize that this would require numerous x-rays, but they could shield vital places. He emphasized that it was "just one of those things" and there was nothing that I could have done differently during pregnancy to prevent it and that it was unlikely that any other children would have it or that Jonathan’s children would have it. He said he would give us some information about agencies that could help with the financial burdens that could accompany all the surgeries and support agencies and suggested different hospitals that he knew were good orthopedic hospitals including the Shriner’s system. He said he would look for information and try to give us some things to read. Our next step would be to try to determine the condition of the hip.
The doctor was unable to determine the condition of the hip there due to lack of expertise and equipment. Once we knew that our next duty station would be in California we flew to the Naval Medical Center in San Diego to meet with the head pediatric orthopedic doctor there. The other doctor told us to make a list of questions to ask and gave us some questions to ask so we could get as much information as possible from the trip. It was our only negative experience with a doctor. He didn’t tell us one thing that I hadn’t read in the few pages of text that our doctor had given us. Although to be fair, maybe there isn’t a whole lot more to tell. It’s just that I expected a specialist to be able to tell me more than I could read myself. Apparently, he didn’t care too much for our questions and was very rude and obnoxious. He told us all about his Harvard education then said that he could cut our son’s foot off tomorrow if we wanted. We stopped asking questions at that point and looked forward to working with a different doctor in the future. Fortunately, the Resident doctor was very kind and helpful. We did find out that Jonathan’s hip was well formed so he was classified as type A at that time. The Resident said that there was a conference the next week with a visiting doctor coming from the Scottish Rite Hospital in Dallas and they would like to use Jonathan as one of the case studies. We agreed thinking it would be nice to hear another opinion. We were relieved when Dr. Herring told us that he felt Jonathan would be an excellent candidate for lengthening and that he would learn to walk on his toe before then.
We moved to San Diego when Jonathan was 7 months old. Thankfully, a new doctor had arrived at the Naval Medical Center. He and his civilian counterpart (who had worked at Shriner’s and was very familiar with PFFD) always advocated lengthening for Jonathan. They thought that he would probably have his first lengthening when he was 8 or 9 years old. Jonathan learned to crawl on his foot rather than knee. He was an excellent climber since the shorter leg gave him an advantage. He was fitted with a shoe lift when he learned to stand and started walking at 15 months. I think that his discrepancy at that time was about 5 cm although it never seemed like much difference to us. No one ever noticed unless they saw his shoe. Sometimes even the pediatrician didn’t notice at first. I always had to tell the corpsmen to measure his long leg when he had well baby check-ups.
We moved to Monterey when he was 2 ½ years old. At that time we were only being seen once a year, so just made the trip down to San Diego again when he was 3 ½ years old. It was at that visit that our doctor said that he wanted to discuss Jonathan’s case with some colleagues, but he thought they might want to try to do his first lengthening before he started school. It was less disruptive to schooling to get one surgery out of the way before starting and they found the younger kids seemed to tolerate the procedure well. We were getting ready to move again and decided that we would try to go back to San Diego since we trusted the doctor there so much. (I’ve always been nervous about switching doctors since our first experience in San Diego.)
That’s when we found out that God had different plans for Jonathan and us. Circumstances beyond our control made it impossible to go back to San Diego. The likely place for us would be Tampa, Florida. I looked on the Shriner’s web site and found Tampa. Their web site said that they specialized in leg lengthening using the Ilizarov technique. I called our doctor in San Diego and asked what the Ilizarov technique was (we had always discussed using another technique) and he explained it to me. He also said that he was familiar with the Shriner’s in Tampa and that he thought it would be the best possible place for Jonathan. He said the facility was beautiful and that the doctors were very good. I reminded him about my "phobia" of new doctors and said that just being good wasn’t enough, I needed to be able to talk to them. He said he had met them and that they were very personable and he promised me that I wouldn’t be disappointed. So we accepted the position in Tampa and in January of 1999 drove across country with our three boys.
We had our first visit at the Shriner’s Hospital in Tampa the first week in February. We were very anxious to get started with the lengthening procedure. When the doctor came in and looked at Jonathan he asked if we had considered amputation. I remember wondering why he would even mention that and deciding it must be protocol to mention another option. We said that we didn’t want to go with that option, we wanted to do the lengthening. He felt that Jonathan was still a little young and told us to come back in 3 months and we’d talk about it then. He told the nurse practitioner to get us some information about the lengthening to read in the meantime. When we went back three months later, the doctor asked me again if I was sure that we didn’t want to go with amputation. I told him that I would do nothing first. He made sure that we knew he would need at least 2 and maybe 3 more surgeries after the first one. I said I understood that. Then he said we could start the process.
THE LENGTHENING PROCESS
(When I proof read this it seems really long and I thought maybe I should edit it more so it’s easier to read. Then I thought it is a really long process and that’s what you need to realize when trying to decide if it’s the right option for your family. It’s also hard to remove some of the things about what I was thinking or feeling at the time because I think those are also some of the obstacles we face. I also want to emphasize that I believe that the complications are inherent to the procedure. My husband and I are both convinced that we could not have received better care anywhere.)
The first step was to schedule a time for us to come into the hospital to stay for a few days for an evaluation. It would give us a chance to learn more about the procedure and they could decide if Jonathan was really a good candidate for the procedure. They told us that when he had the surgery itself we should plan on at least one month in the hospital. We were going to have to make arrangements for the month stay because my husband would not be able to take off work for that long and we had the other two boys to take care of. There were a lot of logistics involved. We had family members who were going to be flying in to help us.
Jonathan was admitted for the evaluation on June 1, 1999. During the stay we met with all the different members/departments involved on the Ilizarov team and learned from them what their part would be in the procedure. This included physical therapy, orthotics and prosthetics, nurses and nurse practitioners, child life, and social work, and pain management. Child life is the group who takes care of activities for the kids and they do pre-op teaching with a doll so the kids know what to expect. The social worker makes sure that you have basic needs met and helps make arrangements for you if you don’t. For example being able to afford paying for hospital meals during the stay. We weren’t going to have to worry about school because of Jonathan’s age, but they do have teachers for times when school is in session. The pain management team talked to us about the different methods and medicines that they used. Jonathan loved doing all the crafts and playing games during activity time. He liked getting a snack in his room before bedtime, too. They casted his leg for the AFO (ankle foot orthotic) that he would have to wear with his Ilizarov. Another thing that we found very helpful was a video about the whole process that was made there for us to watch. Jonathan loved it and we rewound his favorite parts to watch over again. One thing that the doctor said on the video that is important to remember is that the leg likes being short and it is going to fight the lengthening every step of the way. (By the way, we had found a good article on Medscape about limb lengthening in children using the Ilizarov method. The article is still available at http://www.medscape.com/medscape/OrthoSportsMed/journal/1998/v02.n06/mos...). I believe that everyone we talked to during the evaluation just wanted to be sure that we had a realistic idea of what to expect before we started.
We were fortunate to meet a little girl who was a little older than Jonathan who had an Ilizarov on and was going through the lengthening. It was really helpful to see the device actually on another person. We had looked at numerous pictures and read about it, but I think it really helped Jonathan to see it in real life. It was also very helpful for me to be able to talk to her mother a little about what to expect.
It took about 3 more weeks before we got a surgery date of July 20th. It gave us enough time to coordinate who was coming when and get plane tickets.
Jonathan was admitted on a Monday for surgery on Tuesday. On Monday we met briefly again with the different members of the Ilizarov team to be sure we understood everything. The anesthesiologist came and discussed what they’d be doing during the surgery and how they’d handle pain issues. He was great at explaining everything to Jonathan. He was going to have a coddle-block so he wanted Jonathan to know that his legs would feel really heavy when he woke up from dreamland. Jonathan also got to pick out what flavor of mask he wanted. The child life people came in again and did pre-op teaching again. They showed him pictures of what doctors would look like in the operating room with masks on and what the rooms would look like. They do a wonderful job too. That evening they took him up to see the surgery waiting area and wake-up room so he’d know what they look like.
The hard thing for him on the day of surgery was not being able to eat all morning before the afternoon surgery. The surgery was slightly less than the 4 hours that they told us and they said everything went well. Jonathan’s leg was so little that they could only fit two rings. Neither of them went all the way around because there wouldn’t have been room for him to sit or bend his leg. The bigger Ilizarov’s use "clickers" on the threaded rod to do the distractions with, but Jonathan had the smaller size so they had nuts with a marks on it that we would turn with a wrench. The Ilizarov is covered for the first few days and there are sponges around the pin sites to absorb the blood. Jonathan was sick and vomiting all of that first day of the surgery. We suspected that it was the morphine more than the anesthetic because they had given him some medicine to keep him from getting sick from the anesthetic. Then next day he was much better. The traumatic things for him then were getting the catheter removed and getting the IV removed. His bandages were removed on Friday, I think. Getting the dried blood-soaked sponges off his leg was another thing that wasn’t too fun for him. They used saline solution and pulled them off. His leg looked a little swollen, but they told us his pin sites looked great. Pin site care was hardest during the first few days when we could only use saline solution and "q-tips". The blood would dry and stick so of course it hurt when we tried to get it off. We found that Nintendo 64 was a great distraction, so started doing his pin care with Mario. They encouraged us to take an active part in his care at the hospital so that we would be comfortable with doing it at home. We learned how to do the pin care then how to do the distractions. We started the distractions (turning the nuts to start lengthening) on Monday. Jonathan had three rods on his Ilizarov, so we first unlocked the bottom nut, then turned the one with the marker to the next mark, then tightened the bottom nut again, and repeated the process on the next rod. They had three sides so at 4 turns a day we would actually go slightly more than 1 mm per day. We saw the physical therapist that day and did some of the exercises. Jonathan was anxious to start walking again even though it was cool to be pushed around in a wheelchair. It was easy for him at first and he walked all the way back to his room with his walker. The next day he started to get frustrated with not being able to go as fast as he wanted to with the walker. They only had him use it a few times a day, so it was still going well. We took him home that next weekend and managed okay at home. The next Tuesday the doctor asked if we’d like to do lengthening at home. We said okay. I asked about bringing him back in for physical therapy and he said they don’t do that as outpatient. They would look into finding a local PT for him or I could do it myself at home. When I talked to the PT she said she thought I could do it as well as an outside PT, so recommended just having me follow the routine she gave me at home. He was fitted with his AFO before we left that day. The AFO was attached to the Ilizarov and was supposed to help prevent him from losing range of motion. They had told me to keep it on him for long periods during the day and he could take it off at night. So Jonathan was discharged into our care. We would return in 2 weeks for a clinic visit and x-rays and could call if we had any troubles before then. I’m sure that living 35 minutes from the hospital was a large part of us being able to take him home.
It was wonderful to have people at home to help the first few weeks. I could just concentrate on taking care of Jonathan and others would take care of the other kids and keeping up the house. Physical therapy got harder after we started lengthening. There were two exercises that he said hurt and he hated doing them. We tried all different locations in the house and different times of the day to do them. Every time we would get to those he’d have fits. My grandmother said she couldn’t believe it was the same boy that she knew. Jonathan had always been my calm, happy child--the easy one. She couldn’t believe how he was yelling. He told me I was the worst mother in the whole world almost on a daily basis. He would say the meanest things his 4 year old self could think of. (This continued throughout the time he had his Ilizarov but only when I insisted that he do something he didn’t like.) He also wasn’t very fond of wearing his AFO and was upset when we had to put it on.
The other daily requirements during lengthening are pin care and distractions. Jonathan tolerated the actual distractions well. Sometimes he liked to help turn the nuts by himself (with supervision). Pin care had good and bad times. It would be harder when there was more drainage and more to clean. In the beginning he would bleed more after PT or walking. He could not get in a bathtub while he had the Ilizarov on because of risk of infection, so we put him on a mat in the shower and he would hold the nozzle for his bath time. I found some little bear shaped sponges that we would soap up for him to clean around his pin sites. We found that it worked best if we got them really sudsy and let it sit for a few minutes before trying to rub around them. He wanted to do this part by himself so we let him and just supervised by telling if he needed to work on one more to get it cleaner. Another problem with the pins was that his skin wanted to kind of grow up the pin, so we had to push it back down. That’s a thing he hated too. If we did it right after bath time when the skin was still wet it was easier. I would give him some q-tips and he’d push it down. This became another good time to yell at Mommy when I told him he had to work on one more than what he wanted to. Aside from these minor things the entire first month was fairly easy.
There are a few other every day things that changed. Jonathan had been independent, but now needed help getting dressed and using the bathroom. We made some underpants with snap sides and shorts with snap sides for him. I also found some great snap side shorts at Wal-Mart. We tended to carry him more that we had before. Partly because he wanted us to, but mostly because it just made things easier for us. For example, getting in from the car to the house. You could help him out of his car seat, set up his walker, help him down out of the van and let him make his way to the house. Or carry him from his seat to the house. He could walk, it was just slow and at first he would get tired. So, if I went shopping I’d let him ride in the double stroller with his brother. All of the boys were barefoot in the house more than not, and it was an adjustment for him to have to wear a shoe on one foot all the time. He kept taking it off. Then we’d have to find it and put it on him before he could walk anywhere. The Ilizarov could scratch anything it came in contact with including us. There were little plastic covers that go over the ends of the pins, which help a lot, but sometimes they fall off and get lost. We had a little bag of Ilizarov supplies with the covers and some extra nuts. Sometimes he would get caught in the fabric of a chair. We changed the toilet seat and put a cushion one on so it was more comfortable and didn’t get all scratched. I put a rubber mat in the floor of the shower so it didn’t get scratched and so it was more comfortable for Jonny. We put rails back on the side of his bed so he didn’t accidentally fall out and hurt himself. We moved his bed to our room so it was easier for us to hear him at night when he needed help with going to the bathroom or anything. (Our house at the time had the bedrooms on opposite ends.) After a few months, he was more independent again so we didn’t have to do everything for the entire time he had his Ilizarov.
We saw the doctor in clinic after two weeks at home. He said the x-rays looked good and Jonathan was making good bone. I think I mentioned to the nurse that he didn’t like wearing the AFO and she told me to just keep it on as much as we could but that it was okay to give him breaks during the day. I thought it was a little strange that the growth they measured didn’t add up to what I knew we had turned the nuts, but figured the few millimeters could easily be lost in where to measure on the x-ray and with just getting started with the lengthening. We had not had any pin site infections yet so the doctor said that Jonathan could swim (in a chlorinated pool) if he wanted. During the next two weeks therapy seemed amazingly easier. Jonathan was tolerating it well and keeping good range. I was really optimistic about the whole process. The only problem we had was that Jonathan’s older brother had pushed him and he fell on his Ilizarov and the pin sites bled again. We called and they told us what to watch for and Jonathan was fine shortly after. It did make his brother realize that he couldn’t do the same things with Jonathan that he used to do. He kept saying he didn’t know it would knock Jonny down. I forgot to mention earlier that Jonathan’s older brother can’t stand to see blood and has a very low tolerance to pain. He didn’t even like to look at the Ilizarov when Jonathan first came home. We told his younger brother that it would hurt Jonny if he touched his device, so he called it an "owwie". Ilizarov’s have kind of a natural defense with the pins sticking out—it hurts when they stab you too. So that helped keep his brother’s from trying to rough house with Jonny most of the time. I thought it looked like one of the pins was bent a little and wondered if it was from the fall. I thought I’d just ask when we had our clinic visit.
When we went in for our clinic visit after another two weeks the discrepancy between what I knew I turned (we had to get new rods because he had gotten to the end of his first ones) and what they measured was more significant. I don’t remember the exact numbers but it was only about half of what it should have been. I asked the doctor about it and he said that the rods probably bent a little. I think this was when Jonathan got his first prescription for Keflex for pin site infections too. I kept thinking how could it be that much difference between what was measured and what we turned. It was just a mystery to me that the length seemed to have disappeared. The RN who took care of the Ilizarov was kind enough to call me at home and try to explain it to me. I asked where the length went and he said that pins and frame bent. It didn’t seem like they had bent that much to me, but he said to remember we are dealing with millimeters. I said I know that but we lost over a centimeter. I’ll always appreciate his patience with me. He explained that sometimes the harder part of the bone "catches" for a time but not to worry because it would break free and start to grow and we could continue lengthening. So we just continued on as we had been. Therapy started getting harder again and it was getting really difficult to get Jonathan’s AFO on so I called the therapist and she said to bring him in. She said he was starting to lose a little range of motion, which was to be expected, and she made a slight adjustment to the AFO so that it wasn’t quite as straight. She said to keep it on more during the day and let them look at it again when he came in for clinic the next week.
It was getting more and more difficult to do the PT and to get the AFO on. Jonathan seemed to be in a lot more pain that he’d been in before. We had stopped the Tylenol with codeine weeks earlier and were just giving him ibuprofen when he needed it. The ibuprofen didn’t seem to be doing any good at all. I called in about getting more Tylenol with codeine and they told me that they don’t give it to the kids anymore at this point and I should just give him ibuprofen more often. I kept thinking that if I have to get this AFO on then we need more pain medication because he’s in way too much pain when he’s wearing it. I talked to the nurse about it when we had our clinic visit that week and she said to give him the ibuprofen around the clock and it would work better. I wish that I could have conveyed the problem better to her. His leg had finally started to grow at a rate closer to what I was turning the nuts, so I was relieved about that. Jonathan had new rods put in again that day and had grown enough that they had to put a connector between two rods to have the length that we needed. I talked to the physical therapist about the problem with getting the AFO on and she had the orthotics guy check it. He made a slight adjustment to it and I hoped it would help with the problem. The PT said to keep it on as much as possible, but it was still okay to take it off at night. I gave Jonathan the ibuprofen again at regular intervals as I had the previous couple days, but it didn’t help at all. The next morning I tried to call the clinic, but could only leave messages. I was getting really worried. I could see that his leg was getting more bent and he was in tremendous pain when I tried to put the AFO on. I was feeling extremely under-qualified and even incompetent to be taking care of him at home. A nurse practitioner called around 4 PM on Friday afternoon. I tried to explain the problem and she just kept telling me to give him more ibuprofen, I kept saying that it doesn’t work. But we were just going in circles. So I asked what else I could do when he couldn’t tolerate having the AFO on for more than 15 minutes at a time. She said just try to keep it on those 15 min then give him a 15-20 min break and put it back on. She said if he lost too much range they would just admit him for physical therapy. I had no idea what else to do, so said I’d try. I had to take my older son to Cub Scouts that night and didn’t see how I could ask a 15 year old babysitter to deal with fighting to get the AFO on, so let him leave it off while I was gone. He had fallen asleep while I was gone, so I left if off for the night like we usually did. The next morning I could barely even get it on with all my strength and Jonathan was screaming bloodcurdling screams of pain when I finally did get it on. It was obviously more than whining about not liking it, he was in real pain. I thought --I give up, I have to take him back to the hospital. I called the nurse (it was one that we happened to know) and she said that she was really sorry but there was no one there who could help on the weekend. That was really depressing. She said to just try to get it on if I could and leave it on as long as he could tolerate then take it off for a while. He tolerance seemed to be about 1 minute if that. So I tried having him lay on his stomach and put the weights on his leg to stretch it like the PT had told me that Thursday for long periods during the day. It didn’t go over well, but I figured at least it was something. The next morning was even worse. His leg was very visibly bent and there was no way I could get the AFO on. I called again and the same nurse said to just stop trying and bring him in the next morning. I asked if there was anything I could do for the pain. She said keep up the ibuprofen and maybe stagger it with Tylenol (which I had started doing anyway). She said I could clean out the bathtub well with Clorox and put him in the warm water, too.
I took him in to the clinic first thing in the morning. They said he had significant loss in range of motion and would admit him. Once he was admitted they gave him some Tylenol with codeine and he seemed to feel better finally. He was happy to go back downstairs and play Nintendo. We had also been having a problem with the new connected rods on the Ilizarov. It turned at the connection when I tried to do distractions. His rods had occasionally gotten loose before, but I had been able to tighten them. When the rods were loose, I would worry that I’d inadvertently compressed the loose rod with respect to the others and wonder if that would affect the distractions. So we did get that taken care of that day. However, we didn’t see a physical therapist. I kept worrying that his leg was getting more bent. Since we lived so close, they let us go home at night and just come back the next morning. We saw the PT on Tuesday morning. He was very kind and said that it wasn’t my fault and that loss in range of motion was not unusual. I asked what they would have done if he had been an inpatient and he told me some of the things that they do. He said that he believed once it got to a certain point that it progressed very quickly and so that’s why it was hard for me to stop. I still felt sick about it. We ended up staying for two sessions of PT every day then going home in time to get my older son off the bus everyday and coming back in every morning after I put him on the bus for school. I took my younger son with Jonathan and me to the hospital every day. He was just learning to talk and started saying "Mama, Home!" every time we drove into the hospital parking lot. I would say no, hospital, but he kept saying Home for the next several months. We were at about 4 cm of length and the team decided that we could continue with the distractions and just do the PT to maintain the range that we had. The PT who we were working with said that he thought Jonathan would regain some range after we stopped the distractions.
When we were at about 5 cm it was decided that we’d stop the next week at about 5.5cm. I believe it was the beginning of October. Jonathan’s Ilizarov had started to shift and was getting closer to his leg in one spot. We talked to the nurse practitioner and then the doctor. He said there was nothing he could do short of taking Jonathan back in the operating room and readjusting the frame. The doctor said he didn’t think that the frame would move anymore especially after we stopped distractions. I felt bad for Jonathan because you could see where the pin sliced his flesh. He got another pin site infection and they gave him more antibiotics. That helped with some of his pain, which was good. We put a spongy pad on the end of the frame so it wouldn’t cut his skin. The frame also shifted a little at the top and would stab into his stomach when he leaned over too far, so we covered it up with a spongy pad too. He became extremely sensitive about anyone touching his leg near his pin sites.
Once we stopped distractions we started doing PT at the hospital only once a day three times a week and I worked with him at home again. It was about the same as in the beginning. Only a couple exercises that he didn’t like and he really gave me problems about getting them done. Thankfully, the therapists would come up with new exercises to do the same things to try to make it more fun. I have tremendous respect for the pediatric physical therapists. Our concentration shifted to trying to get the bone to consolidate which meant walking as much as possible and keeping weight on the leg. When we went in for our clinic visit the first week in November the x-ray was really neat to look at. You could see all of the length that we had gained and could see the bone consolidating. I was really hopeful that we were nearing the end of this process. Jonathan was walking as well as he could, but it was difficult to walk on a bent leg. We kept doing therapy to try to get it straighter so he could put more direct weight on it his femur when he was walking. He was in a lot of pain from the muscles and it seemed to bother him the most at night. We had started letting him use a heating pad after he had lost the range of motion. He woke up almost every night at least once complaining of pain. Usually we just told him to turn on the heating pad, but if he couldn’t go back to sleep we’d give him some Tylenol.
Jonathan turned 5 in November, and we had his party on the weekend. I noticed that the frame has shifted more but knew I could just ask the therapist about it when I went in Monday morning. It was very painful for him and he didn’t want anyone to touch it. She said she didn’t think she could do therapy with him because it was touching his leg and would rub the tendon. She paged the nurse practitioner who was taking care of Jonathan most of the time. We went upstairs to see the doctor and he said he’d have to take him into the OR to adjust the frame. We made arrangements to do it as an outpatient the next day. The surgery was short and went well. They readjusted the frame and cut off the top where it was stabbing his stomach. The doctor had the orthotic guys put an extra support on the AFO so that there would be no way for the frame to move again. I was very thankful for that. Jonny was much better again pain wise after the frame had been readjusted. He started therapy again a couple days later. He had nightmares for the rest of the week after the surgery crying "don’t touch my pins" in his sleep. But he was okay again the next week.
I had noticed that Jonathan had lost weight during the procedure and looked a little skinny, but also thought that his brother had gotten thinner when he was around 5 so didn’t worry too much about it. My grandmother and brother came down for Thanksgiving and couldn’t believe how thin he was. She kept saying he looked so awful—sallow skin, thin face, skinny. He had always been stocky and had a round face before. I asked the nurse practitioner about it and she said I could give him Pediasure and or vitamins if I was worried about nutrition. She said he probably had loss some muscle mass from not being as active and that would make him look more "boney". We had been giving him Flintstone vitamins so continued with that. I tried Pediasure but he didn’t like it and could tell when I put it in things.
When we went in for clinic visit the first of December, we were hopeful for more consolidation and possibly even enough to have the Ilizarov removed. You could hardly even tell a difference in the x-ray from the month before. It looked like we hadn’t made any progress at all. The doctor said we just had to be patient—like a gardener, and wait for more bone to grow. We changed his PT routine so that he was doing some exercises on his knee to get good weight bearing on the bone. Some of the new exercises were fun and they were different so it was easier to do them with him again. We stopped giving him pain meds all together (even before PT) because it really didn’t make a difference if he had it or not. He still woke up a lot at night, but he seemed okay with the heating pad and occasional Tylenol. Just before Christmas he wanted to try to walk without his crutches. He could sort of do it, but with the bent leg it was really hard to balance. I talked to the PT about it and an O&P guy and they decided they could make his shoe lift in a wedge shape so he’d have more stability. It did make it a little easier for him to walk. He had already lost some range of motion at the hip, too. So when he walked it was kind of like keeping your leg up like a marching step all the time.
When we went in for the January clinic visit, the x-ray showed he had made some progress, but not enough to take off the Ilizarov. The doctor showed me one spot that needed to fill in more. I asked him about whether he thought Jonathan would need surgery to release the muscle. He said he didn’t want to do that because he was so young and didn’t want to cause any unnecessary scarring. He said he thought that it would release more on it’s own once the Ilizarov was off. That sounded great to me. We continued our outpatient PT, but now only twice a week. Our goal was just to get the bone consolidated, so we concentrated on weight bearing exercises and only did the other stretches to maintain the range we had. Jonathan was walking more easily so that helped. He continued to have pain at night and we continued with the heating pad and occasional Tylenol.
When the February clinic visit came up, Jonathan wanted his Daddy to take him. Daddy said that Mommy needed to go because she always had questions for the doctor. I said, you can go this time because I don’t have any questions and don’t feel like sitting around for hours just to hear "see you next month." I was really surprised when he called me from the hospital and said they were scheduling the surgery for the Ilizarov removal. We started trying to figure out the logistics of the scheduled surgery. My mother-in-law was able to come so we made the plane reservations for her. She would stay a week to help me in case Jonathan had any problems when he got home. The week before the surgery Jonathan was goofing around and flipped over the arm of the sofa and landed on his Ilizarov. It was the first time in several months that the pin sites bled, so I was a little concerned. We took him in for an x-ray and we saw a different doctor, but he said it looked fine.
Jonathan was admitted on Valentine’s Day. The physician’s assistant came down to discuss the operation with me and answer several questions that I had. She said you do know that they might not remove the Ilizarov, don’t you? I said NO. She said that the doctor would check for motion in the bone and if there was any, that he would have to leave it on. I thought about how we had made all these arrangements so we could have it done now. Also, I had to tell Jonathan who’s greatest wish at the time was to get his cast that he might not get it. Of course we didn’t want it to come off if it wasn’t ready, so we just hoped that it would be okay. We did pray that it could come off though. We asked if we could keep the frame for a souvenir after the surgery and they said we could if it was not usable for anyone else. When we had been in the waiting area for about a half-hour, we were given the frame. We were so relieved since that meant that it was off. The doctor came out said that it went well. He thought everything would be fine and the next step would be to get the leg straighter. We knew that being in the cast for a month with the constant pull would help a lot toward that goal. Jonathan didn’t even throw up this time after surgery (no morphine). He had his green cast and was so happy. He would wear the cast for a month then be seen in clinic and get his brace on which he would wear for a long time (no one said exactly how long yet). We would then only have to worry about getting back strength and range of motion.
Jonathan only had itching problems for the first week and didn’t have any pain. He slept through the night for the first time in months. He could walk fairly easily with his crutches since his leg was straighter and didn’t use the crutches at all around the house. He was in a much better mood and I was glad to have my boy back. He even started eating better again. His color got better. Life was just tremendously easier. We had to keep on him about too much activity now. I was worried that he was going to crack his cast if he played too rough.
The end of February, Jonathan had a bedwetting accident, which was really unusual, but got his cast wet. I called to ask what to do about it. I thought I had gotten it dried enough, but was concerned about odor. They said to bring him in. When I got there the guy who takes care of the casts said he could just remove it and put a new one on. I asked if that was okay for the bone, he said he wouldn’t disturb it and thought it would be fine so I said okay. When he cut the cast off, Jonathan’s leg looked funny to us. I didn’t want to upset him so didn’t say anything. Jonathan kept saying Mom my leg looks weird, what’s wrong with it. I thought it does, but I didn’t want to ask for a doctor or nurse and upset Jonathan. I told him maybe it was just because he hadn’t seen it in a long time or maybe the cast made it look that way. I mentioned it to my husband, but we figured it was just the way it looked from the cast and didn’t worry about it. I was really confident since Jonathan had been walking so much that the bone would look great when we went in for our next visit. One night he woke up screaming that his leg hurt. I asked where and he pointed to his thigh. I couldn’t imagine why it would hurt. I checked his toes and did the checks they taught us to do if there were pressure in the cast, but everything seemed fine. My husband got him a Tylenol and he went back to sleep. He had been playing hard outside the day before so we thought that maybe he just pulled a muscle or something. I checked him again in the morning and asked if how his leg felt, he said it was okay now. I checked with him all day and he was fine, so I didn’t call the hospital. About two nights later he woke up crying that his leg hurt and I gave him Tylenol again and he threw up. He was sick for several days after that with a stomach virus. I didn’t give anymore thought to the pain in his leg since it was gone. I blamed the discomfort that time on the illness.
My husband had been interviewing different places for a new job and after much prayer and consideration we finally decided on Kentucky. We would only be 6 hours from my family and only about 45 minutes from the Shriner’s in Lexington. He had to start work the first week in March. We had planned on having the boys and I stay in Florida until school was out, but since Jonathan seemed to be doing well, we hoped that we could move up over Easter.
Jonathan’s clinic visit was on the 16th of March. Jonathan was so excited that he would finally be able to take a real bath again after all these months. I told him he could do it that night when his cast was off. When they took the cast off his leg still looked funny. Jonny asked me how long it would be before it looked normal again. I told him we’d have to ask the doctor about it. We had the x-ray and waited. The doctor came in and put up the x-ray and said it looks like we have a little bowing. I was so shocked that anything was wrong. Another thing was it looked like more than a "little" bowing. All I could think to say was but we were going to move next month. He said he would postpone it. He said that he would have to take Jonathan back into the OR and reduce the fracture (straighten the leg) and put him in a spica cast for about 6 weeks. If it didn’t heal then he would have to do a bone graft. He showed me where the bone was growing and consolidating well on the x-ray, so he thought that he would not need to do the bone graft. I was so afraid he was going to say that we’d have to put the Ilizarov back on that what he did say seemed easy to deal with. He said that he could do the surgery the next day if I could be in early. I said we could do that. Jonathan was really upset about not being able to get his brace and cried until he fell asleep. I remember when I signed the release the complications listed said neurovascular damage. I kept worrying about it that night. I was afraid that I started this whole procedure with a boy who could do anything and was worried that I would make decisions that would cripple him
We got up really early and got everyone sent off to where they’d be for the day then drove up to the hospital so we could be there by 7:30AM for scheduled 8:30AM surgery. I was so nervous. I had never been nervous or anxious before any of the other surgeries, but couldn’t shake the anxiety this time. I was afraid that it wasn’t going to go well. I asked the doctor before the surgery if Jonathan kept falling into worst case scenarios or if this was normal to have all these problems. He said that we needed to remember that first of all the bone wasn’t normal and second the leg likes being short and it was going to fight us every step of the way and we just have to keep fighting back. I think that is the most important thing to remember when going through this whole procedure and I was really glad that he reminded me of that fact. When he came out of surgery he said that when he tried to straighten the bone that it started to break at the other end and he had to stop. I was relieved that it was only the bone that broke, but wondered how it was going to get straight and how much length we lost. He didn’t think that he had lost length and said that the bone would eventually straighten itself out. He said he would have to wear the cast for at least 8 weeks though. The cast went across his hip so he wouldn’t be able to sit up straight. They gave me a special vest that I would have to use in the car. He would have to lay down and be strapped in. I was glad that we had a van or else I wouldn’t have had any place for the other kids to ride. His leg was much straighter though, so I figured at least we made a little progress. Jonathan was up and walking on the new cast with ease in a just a couple days. In fact it was the easiest for him to get around since we had started the entire procedure the previous July. It was difficult to go anywhere though when I had to practically stand on my head in the back of the van to strap him in. We were very fortunate to have wonderfully supportive neighbors and friends. They would watch the kids once a week so I could go grocery shopping and watch the youngest when I had clinic visits. I just hoped that the cast would be enough and waited for the next clinic visit the end of March. Jonathan’s beautiful new bone looked like an elongated Z. The doctor said that it would eventually straighten and he’d just have to keep a close eye on it to be sure the cast was doing its job. I could believe him, but I really wanted to know HOW it was going to straighten by itself. At the time I still really wanted all the length. It made me sick to think about all that pain to get the last 1 1/2 centimeters and they might be gone. I was also still afraid that we might have to put the Ilizarov on again. I was glad that his feet looked so close together though. I talked to the nurses and read enough to make myself understand how the bone could remodel itself and decided things weren’t so bad after all. Jonathan was so happy and getting around so well. I knew things were better because now instead of being "the worst Mom in the world" when he was upset, I was "just not the mother he expected."
We had our next clinic visit two weeks later, which was about the middle of April. The bone looked better but seemed to still have a long way to go. The doctor thought that it would be safe to say we could move the first of June, but I just to be safe I changed our move dates until the first of July. I really felt at ease for the first time in more than a month.
That next week the boys were playing on the back patio and the youngest shoved Jonathan and knocked him down. He fell right on the back side of the cast near the top and cried and cried. I looked at the cast, did the checks for circulation and he seemed fine. I called the next day and mentioned that he had fallen, but I didn’t think it was a problem. The cast guy said that could bring him in for an x-ray if I was worried. I said no at first then called him back later and said I guess I did want it. So we made arrangements to go up the next day for the x-ray. Jonathan had been walking kind of funny for a couple days and I wondered if his cast was bending or something, so had him check that too. The x-ray looked fine and he couldn’t find anything wrong with the cast, so we went home relieved. On that Saturday night I was washing Jonny’s hair by having him lean over the bathtub. I noticed some drainage at top of the cast on his backside. It looked a little bloody, but also a little thick like a fungal infection. He wouldn’t let me touch it much so it was hard to get a good look. I called the charge nurse just to tell them about it and knew that they probably couldn’t do anything until Monday. She said to watch it and call them back tomorrow. I did and said there was more drainage, but not a lot. It was kind of soaked up into the cast material. She said to call the clinic the next day and try to get in to see them. The guy that I needed to see wasn’t in, so they asked if I minded waiting until Tuesday. I didn’t want to see anyone else, so said I’d just wait. I took Jonny up on Tuesday morning expecting a quick visit for a minor problem. He cut some of the cast away so he could see the area and looked concerned. He cut some more and told me that they would have to admit Jonathan. Jonathan had started to cry when he was cutting because the area was tender to touch and also because he was nervous about the saw. A nurse had to come in to help hold him still while more of the cast was cut off. The saw was loud and Jonny was screaming then my 2-year-old started crying because he was worried about his brother. It was really loud in that room! The wound care specialist came in and agreed that Jonathan should be admitted. I kept trying to think of ideas of how to take care of the other two boys and still stay with Jonathan at the hospital. The doctor was out of town so the nurse practitioner who works with him came in to do the admission and decide course of action. Everyone was so great at taking care of us! I felt like I didn’t really even need to worry because everyone was doing it for me. Jonathan was ecstatic about being admitted. It meant more Nintendo time for him. Once they got the wound all cleaned and evaluated it it didn’t look as bad as they had first thought. I was concerned about how much cast they had cut away and wanted to be sure that it was still strong enough to hold the bone where it needed to be. The wound care nurse was concerned that blood and gotten down farther into the cast and wondered if it would be best to remove the whole thing. I really didn’t want them doing that without talking to his regular doctor. We saw one of the other attending doctors later that day and he thought that if we just cut a little bit more cast that we would have all of the drainage cleaned up, so that’s what we did. Just to be safe they said no weight bearing yet. They let me go home on a pass that night and just come up the next day for wound care then go home again. We did the same on the third day and they took an x-ray. They felt that the bone looked okay and said it would be all right for Jonathan to walk on it again. They gave me all the supplies to do the wound care at home and said it looked much better already, so discharged us. We had a scheduled clinic visit with the doctor the next week and said to just keep that appointment.
We saw the doctor that next week. At this time Jonathan had been in the spica cast for 8 weeks following the 4 weeks in the long leg cast. He said the bone looked good and we were making progress, but it was too soon to remove the cast. He said he didn’t want to change the cast because he didn’t want to disturb the bone yet. That sounded great to me too. He said we should just be patient--better to be safe than sorry. He said to come back in three weeks. The wound care nurse said that his wound was healing nicely and to just continue the wound care as we had been doing.
Our next appointment was on June 1st. Exactly one year from when Jonathan had his first admission to the hospital for his evaluation. I was nervous about getting the brace. I had gotten dependent on the cast and worried if the brace would hold the bone as well. I also knew I was going to be busy with getting ready for the move. I had many questions about how we were going to do the transfer up to the hospital in Lexington and worried about starting over with a new doctor again. I felt very attached to all the people who we’d worked with over the past year in Tampa and knew it was going to be hard to start all over with people who didn’t know our background yet. I had been warned that it would be a long day, so made arrangements for both of the other boys to go to the babysitters and warned her that I’d be gone all day. (School was out by this time.) I knew that there would have to be adjustments to the brace because it was casted when he had the Ilizarov removed and his leg was a different shape now with the fracture. I also suspected that they would be adding a belt portion to the brace and knew that they would have to re-do his shoe lift. I didn’t even tell Jonathan that they would be taking the cast off—I just said that we are going to check on it. He was happy when they said we could cut it off. He kept rubbing his leg just because it was a novelty to see it again. We were given information about skin care since his skin was delicate after being in the cast for so long. They said it would be a good idea to give him baths alone so his brother’s didn’t step on him. The doctor said no PT yet because he didn’t want anyone pushing on the bone yet. I got some of my questions answered and the phone number to call and try to schedule a visit in Lexington.
It really did take all day. Jonathan fell asleep before they were completely finished with everything, so they had to measure his legs to get the height for his shoe lift. I couldn’t believe how big the shoe lift looked when they brought it in. I thought about how a year ago, I had expected it to be half that high or less. We were going to come in the next Monday to have some final adjustments on the brace since he was asleep. I took him upstairs to let the doctor check the brace. He said it looked good. So we finally went home for the day. Jonathan was glad to sit up in the car seat again. When we got home he couldn’t walk except with the walker because his leg was so weak. I felt so bad. I kept seeing the boy who a year ago could run jump and do anything and now he could barely walk. I got out his old shoe and the lift was smaller (although only by about a quarter inch) than the one he wore home. I just kept thinking what have I done to my son and what did I have to show him for it? I had thought when I started that I’d be able to show him how his shoe lift was smaller, but it wasn’t. I knew there was a logical explanation for it being bigger now. It had been only half his discrepancy when we started and now it was the entire difference, but it still bothered me. The fracture made a bump in his leg which gives the illusion of it being shorter than it is. I had believed with all my heart when we started that we were doing what God had planned, but I let doubt get to me that day.
Then I remembered that we can do all things through Christ who strengthens us. We made the adjustments to his brace on Monday and they did cut a little off his shoe lift so he had room to move his foot more easily when he walked. I talked to the nurse practitioner who answered all of my other questions that I wanted answers to before we moved. I was worried about maintaining continuity of care for Jonathan. I wanted to be sure I understood everything when I talked to the new doctors. She said that they would transfer all of the records, but I wanted to be sure I could answer all the questions that I might be asked. I finally felt fine again by the next day and concentrated on trying to get things arranged for the move and getting set up to see the new doctor in Lexington. I had called them on the 2nd of June and they said they would request the records from Tampa right away. That week Jonathan was admiring his leg after a bath and said, "You know Mom, I think it was a good thing that I had my Ilizarov." I could see the length we gained when he straightened his leg beside the other leg.
We had one last visit in Tampa on the 22nd of June. The doctor said the bone looked good enough to start therapy. He said that I needed to know that there would be three more surgeries—one femoral and one tibial lengthening, and one epiphysiodesis (the one to stop growth in the other leg). I said I could still hope that his leg would grow and he wouldn’t need three more. He said it won’t. Then he again said if I didn’t want to go through all the surgeries, we could do the amputation. I said I understood but I wanted to continue with the lengthenings. I really believed by now that amputation is a viable option and for some people the best option. He said we could come back to Tampa anytime, which was reassuring. He said we should work toward getting the belt portion of the brace off by the end of summer and start having him try to use his knee more. Jonathan was walking well by this time, but was still hesitant to try to walk with the hinges unlocked at the hip let alone the knee. The therapist told us to keep his crutches so he could try walking with them when the knees were unlocked.
We moved to Kentucky the first of July. I called the Shriner’s in Lexington and they did not have Jonathan’s records and said they couldn’t do anything with us until they did. Jonathan needed some adjustments to his brace and I really wanted to start PT with professionals, so I was getting a little concerned again. I called back the next week and they returned my call to say that they had received the records just that day and the doctor had an opening on the 19th of July so we took the appointment. When we got there we found out that they had not received any x-rays or most of the records from Tampa. So I gave the resident a brief description of the past year then he filled in the doctor. The doctor examined Jonathan and looked at his range of motion a little, then asked if I had discussed other options like knee fusion. I said amputation? He said yes. I said yes, but we want to stick to lengthening. He said I know it sounds like a no-brainer, you want to keep the foot, but it really isn’t. He has to go through at least three more surgeries and he already has a tight knee. He could lose a lot of range with three more surgeries. (I couldn’t remember if they never mentioned that problem to me in Tampa or if I just didn’t pay attention or didn’t remember.) I said that I wanted to stick to the current plan and my main concern at this time was getting physical therapy so he could regain the range that he had lost. He offered me inpatient or outpatient PT. I picked outpatient because I needed to take care of the other kids. We also got the brace adjusted a little and talked to a therapist who gave us some exercises to do at home. She said she would get with the doctor and call me about the outpatient schedule.
After discussing the visit with my husband, we thought it would be better to be inpatient before school started rather than trying outpatient and having him admitted after he’d been in school for a time. We also discussed why the doctor had even brought up the amputation and decided we better make absolutely sure no one was telling us that the lengthening was impossible. We didn’t want to put Jonathan through all of this three more times then have them say we had to amputate. It would be better to do it earlier than later if it was inevitable.
I called the care coordinator to ask the doctor more about it. I also asked the care coordinator about doing the inpatient option, but going home at night. She called back the next day and said that the doctor said okay to the inpatient therapy but he couldn’t answer the question yet and would talk to me when Jonathan was admitted. In the meantime, I e-mailed the question to the coordinator at the hospital in Tampa and he said that it was their teams opinion that we should continue with the current course of treatment. That was really all the reassurance we needed.
Jonathan was admitted for PT and Rehab on the 8th of August. I had hoped so much for most of this to be over before he started school; however, he was going to miss the first week of kindergarten. They evaluated his range of motion and we had a meeting with the team of doctors who do lengthenings there. The doctor that we had seen at the first clinic visit concentrates more on spinal surgery. The other doctors told us a big complication with the multiple lengthenings was that there would be a loss in range of motion. Basically, they said what good is a sentient foot on an unusable leg. I questioned the degree of the handicap—they said it could vary. I asked what they do about it—they said that they try to recognize the problem before it became severe. I said so he may not be able to get all of the length and just have to still wear a shoe lift. They said yes. I said a little shoe lift is better than a huge one. He could do anything with one before, so I don’t think it will stop him from doing anything in the future. I just needed to be sure that they weren’t going to tell me that they would have to amputate after we’d gone through 3 surgeries and probably 7 years of treatment. They said that was unlikely. I asked them also about criteria for next surgery. They said first of all we all needed to recover from this one. I said that sounds like a good idea. They also estimate the next surgery to be in 4-6 years. I also asked about whether or not the growth rate would stay proportionate like it had before the surgery. The doctor said that it usually does if nothing is done but that some people believe that the forces put on the growth plates during lengthening slow down the rate of growth. After speaking with them, I still feel confident about sticking to our current treatment plan. I think it will minimize the possible complications.
They took a scanogram x-ray to see what Jonathan’s leg length discrepancy is now. It’s obviously not exactly accurate because of the flexion in leg, but it shows a rough idea. It says that the difference is 6.2 cm. I decided that day to stop thinking about it all in centimeters. Every way they measured came up with a different answer. The other doctor measured the difference using "blocks" on the floor and got something like 7.5 cm; the prosthetics guy said isn’t the discrepancy just the size of his shoe lift which is 1 ¾ in. I smiled at the doctor and said You know it’s just a math thing but we started out saying that his difference was 8 cm and we stretched it 5.5 cm, so that would only leave 2.5 cm. When we started that’s what I expected the results to be, but they aren’t. It’s not going to add up. The other doctor said, yes, but he’s grown since then. I suspect that the 8 cm was inaccurate and that his difference was more than that at the time we started. I really think there’s just not "apples" to compare to "apples". They looked at his scanogram from July of ’98 and the difference then was 8.8 cm the doctor said. That scanogram was taken when he was standing and his hips are uneven, so I don’t know if that was taken in to account when they measured or how they would compensate for it if they did. They also estimated his discrepancy (if nothing had been done) at skeletal maturity to be 18 cm. I said that’s about what I expected based on where his leg used to come to on his other leg. (Jonathan’s leg used to come to a point a little above the ankle bone. Now it touches the ankle bone. His difference now is the distance between the ankle bone and the bottom of his other foot. We made progress and that’s what is important.)
He did make good progress the week and half that he was inpatient. He regained almost 50 degrees of motion. He got his belt removed from his brace and some more adjustments to the brace. I’m still a little nervous that they may have cut too much off of the brace in trying to keep it from rubbing on the wound scar, but the therapist, orthotics guy and doctor all said it looks fine. He is learning to walk with his knee joint unlocked, so uses one crutch like a cane. He started school last week. He needs a little help getting on and off of the school bus because it’s such a big step, but his teacher says he does great at school. The thing that makes therapy a little easier at home now is that I’ve been exposed to different ways to get the same motion after watching his therapists for so long. When he doesn’t want to do an exercise, I give him choice of means to do it which seems to help a little. It’s still hard scheduling it in our days (he’s in all day kindergarten) and sometimes he’s tired and crabby (or I am), but it’s definitely easier than it was last year.
So, we are really still going through the process over a year after we started. I don’t expect to see the full results for almost another year. Jonathan still had decent range of motion for only the first two months of the procedure, so basically his leg had been immobilized for 10 months. It’s not unreasonable to expect it to take time to fully recover. Some of the results I do see now are his old personality is back just as it was and he has better muscle tone and looks so much healthier. He seems to look back on his Ilizarov and cast with fondness. When we were moving he found one of his little bear sponges and asked if he could clean his pin sites in the shower. I said you don’t have pin sites anymore. He showed me his scars and said they’re here, but now that there’s no pins I can clean the middle of them too. He even has fond thoughts of physical therapy. He started laughing the other day when we were doing his exercises because he remembered a joke one of his therapists did with him. Sometimes he wants to play some of the games like he did in therapy. On the 4th of July we talked about what we had done the year before—I said just think Jonny, that was before you had your Ilizarov and now you don’t have it again. He said Wow, that Ilizarov made time go by faster, didn’t it? I told him a few weeks ago that someday he would have to have an Ilizarov again. He seemed a little unsure about it, but said okay. Last week we were doing something and I said something about what we'd be doing in a few years (forgot the details), but Jonathan said, But Mom don’t forget I’m going to have my Ilizarov again. I said Oh yes, you are right. I know that God will continue to be with us and especially with Jonathan.
Feel free to e-mail us anytime if you have questions or comments.
Christine and Cliff Ross
Jonathan Update (Aug.'01)
I wanted to write an update since it's been a year since I wrote Jonathan's Story.
Jonathan continued with once a week outpatient physical therapy and PT at home in September and October. He had a doctor visit mid-September and we were told that we could start weaning Jonathan out of the brace. We started with just an hour a day at night and worked up to the hours after school. He continued to wear the brace at night in the locked straight position to maintain the stretch on the muscles so we would be sure that we didn't loose any range in that direction. By the third week in October the physical therapist said she thought he was ready to go without the brace all day. He used his crutch for one day at school, and then he was fine. He was released from outpatient PT the end of October with a range of -5 deg to 35 deg.
The only exercises that he needed to do at home were some knee bends and one where Jonathan laid on his belly and grabbed his foot to pull the leg bent. I also encouraged him to sit on his knees and try to get his bottom to touch both feet whenever he was watching TV or playing on the floor.
We had a check-up with the physical therapist in January and his range had increased to 40 deg when she pushed him a little. He was easily doing all the things that little boys love to do. By March he could easily sit on both feet when he was on his knees, so that's when I considered him to have regained his complete range of motion.
He continued to wear the brace locked straight at night until our doctor visit in April. At that time the doctor gave him to okay to participate in any sports that he wanted to do.
Jonathan learned to ride his bike without training wheels around that time. He started T-ball in May and had a fun season. We also did swimming lessons this summer. One day he showed me how he could climb up his door frame in his bedroom all the way to the top of the door. (Not an activity that I approved of, but it was really neat to see him be able to do it.)
So, two years after we started this procedure, Jonathan can do anything. His leg is two inches longer than it was; that and a few scars are the only evidence that we ever went through any of it.
As we said in the first story, please feel free to contact us at any time with comments or questions.
Cliff and Christine Ross
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