Jarrett's
Diary
Jarrett was born with a birth defect called Arthrogryposis Multiplex Congenita (AMC). Click here to find out more about AMC. In short, this is the presence of multiple joint contractures at birth. This condition does not get worse. And, most important, his intelligence is not affected by AMC. With a lot of physical therapy and a few operations, Jarrett will get better. At this point we don't know how much improvement we will see. We have high hopes for him. He has the following affected joints
We are fortunate that his hips and knees are not affected. I have shed many tears over his condition. But, as I learned more about AMC, I have developed a very positive out look for him. I am thankful that his condition is not any worse than it is. Our goal is for him to "have all the joys that every little boy deserves" as his Grandpa Ken puts it. Everyday we work with him to develop a range of motion in his joints. We don't know what has caused his condition. And, we will probably never know. But, that doesn't matter any more. What matters now is the future he will have. I am writing this diary so that all of our friends, family and anyone interested in AMC can share in his recovery. If you have any questions or comments, please click here to email me.
April 27, 1998 On this day, I met my son. I took this photo of him while the doctors looked him over in the delivery room. In this photo, you can see how he was inside of me for all those months. His arms were straight and his legs were curled up. They still don't know what is wrong with him. Although, they suspect AMC. You can't tell in the picture, but his feet bend in the middle so that he can wrap his feet around your finger.
April 29, 1998 We are still in the hospital. It is important to start correcting his feet as soon as possible. This photo was taken just before the casts were placed on his feet. Many people have asked me if he is in pain. The answer is no. His feet aren't causing him any pain. This is the position that they find natural. He is just mad in this picture because he would rather be curled up in bed with mom. We will be removing the cast once a week at home so he can be recast the next morning.
May 7, 1998 Jarrett has just completed one week of casting. Removing his casts took about an hour. We would soak them in water until the plaster got soft and then peal the gauze off. He wasn't crazy about all of this. This photo shows the remarkable improvement that one week has done. We are very excited about his improvement.
May 11, 1998 Today we saw Jarrett's pediatrician. He did some research, spoke with the orthopedic surgeon that has been doing the casting and formally diagnosed Jarrett with AMC. So far, he is developing at a normal rate.
May 20, 1998 After three weeks of casting, he continues to show improvement. Although, each week there is less and less improvement. His doctor says that he is working to get the bone in Jarrett's heel to drop down into place. This photo is of Jarrett's feet in their natural resting position. When the doctor puts the casts on Jarrett's feet, he pushes the feet up so that they form a 90 degree angle from the leg. We are still not able to push them up that far.
June 2, 1998 Jarrett is fitted for wrist braces. We are hoping with the aid of the braces we can stretch the ligament holding his thumb to his palm out. He wears the braces at night while he sleeps. He doesn't wear them during the day because we want him to learn to us his muscles in his forearm. The braces will be replaces in about one month or when his hands grow so much that the braces no longer fit. We also had his cast redone. Someone at the doctors office suggested soaking his feet in vinegar and water. This really worked. I was able to get his casts off in 10 minutes.
June 9, 1998 We are getting very little improvement from the casting. His right heel appears to be descending. But, the left heel is being stubborn. There is still enough improvement to continue the casting. He has had 6 sets of casts at this point. His hands continue to show a lot of improvement after one week.
June 16, 1998 When we originally started the casting, they said we would do it for 6 weeks and see how much improvement we saw at that point. This marks the end of the 7th week. The doctor still wants to try and get Jarrett's left heal to descend. So we will continue to try. The doctor has consulted with a pediatric orthopedic surgeon to get his opinion. The specialist said that clubbed foot caused by AMC always requires surgery to make the foot functional since AMC clubbed foot is more severe than the average clubbed foot. So, we decide to try for one more week and the reevaluate the situation. The doctor doesn't want the push the feet too hard for fear of causing a rocker foot. This is where the foot arches in the opposite direction of the bottom. A problem has arisen with Jarrett though. He kicks his feet around so much that his cast are coming lose. These are pictures of his left foot and right foot. They look relatively normal. But, as of this date he has not moved his feet at all. They remain tight and in this position. We are not sure of how much muscle development he has in his calf. He can mover his toes around quite well.
June 22, 1998 This is Monday. On Friday night, Jarrett knocked his left cast loose. Over the weekend it has cause the rocker foot we were trying to avoid. When I went to remove his cast, it slide right off his foot. In the few hours before we saw the doctor, the curve on his foot lessened. Over the course of the day, the arch of his foot went back into the position we want. But, since we were seeing no more improvement from week to week, we decided to fit him for braces. He will now wear the braces for most of the day. We take them off to allow his feet to air out once or twice a day.
