Trevor's Story
A Grandmother’s Story
Trevor - our 3-year-old Grandson!
I believe the hardest part of writing is the beginning! You know what you want to say…but how do I start! So I guess I will begin at the very beginning!!
Our daughter first met her husband to be, when he was in the Air Force, and stationed in California. After they got married, they lived in England for a couple of years. Just before they moved back to the states, their first child, Heather, was born in May 1995. We were so fortunate that we were able to be there for the birth of their first child…and what a charmer she was! In July of 1995 they moved to Virginia. In June of 1997, their second daughter, Casey, was born, and once again we were very fortunate to be there…and yes, we had another charmer! Two beautiful girls!! But, they would still like to have a boy! So, in 1998 we got the call that they were going to have another baby (due in December), we were all really excited. I would like to interject here that we, and the rest of our family live in Southern California (within a 20 mile radius). This would be our eleventh grandchild!! The youngest all living in Virginia!! Now, I will start the story of Trevor!
Sondra (our daughter) went for the normal tests for a pregnant Mom…when she had the ultra sound they discovered that the baby was a boy, they also discovered that something was wrong with his right leg. It was not developing as it should…something was not right! So more tests, and it looked like the femur was missing! Sondra and Tim had a hard decision to make! The doctors said they had two weeks to decide to keep the baby or abort! After the shock wore off, they knew there was only one thing to do, and that was to have their baby!! So before Trevor was born, we knew that he was a PFFD child! None of us had ever heard of proximal femoral focal deficiency (PFFD). Tim is quite a researcher, and he found information for all of us, so we could better understand what PFFD was. This was also a difficult time for us geographically, living so far apart…and trying to give support long distance! Tim and Sondra found a doctor for Trevor, before he was born!
Trevor was born on December 14, 1998 (while we were in flight to Virginia, to be there for his birth!), and yes, another charmer and a cuddle bug! When he was first born, it was hard to tell that there was something wrong with his right leg, and he had a “perfect” foot. He went for his first doctor’s appointment, before we left to go back home to California. The doctor checked him over and said that we would have to wait and see how the hip developed, before anything could be done! It seems the options would be the Van Ness procedure, limb lengthening, or amputation of the foot and be fitted for a prosthesis. As time went on Tim was doing more research and trying to find out what would be best for Trevor! He had learned that there was a place in Baltimore that specialized in leg lengthening, so he made an appointment. They put Trevor through a lot of tests, but said that he was not a good candidate for the leg lengthening! Meanwhile they discovered that the hip was starting to form and of course Trevor was getting bigger! After he started walking they had a shoe made for his right foot with a lift. That worked for a very short period of time…then a brace that he could use for walking, but it was straight and he could not sit down with it on!
Trevor, for his age is very athletic! He would rather have a ball to play with than anything else! And what an arm that kid has!!! When we went to Virginia for his second birthday, we could not believe how he got around. He walked on the knee “of his good leg” and the foot of his short leg! And he was fast…he could out run all of us, including his sisters! He could also do anything that anyone else could; he just developed his own style!
Sondra and Tim ruled out the Van Ness procedure and they could not, at this time, have his foot amputated! They feel, that is a decision that will be Trevor’s one day! They also wanted Trevor to enjoy his childhood, instead of being in and out of hospitals!!
In Tim’s research on the web he found a Dr. Mark Moseley who has made prostheses for people with the same problem as Trevor’s. He designed a prosthesis where you use the ankle, like a knee. We were able to check out how the prostheses worked, by some articles on the web. It sounded really encouraging!!! A bonus for us, was that Dr. Moseley, was in Santa Monica California!!! Tim and Dr. Moseley did a lot of corresponding. Tim and Sondra sent Dr. Moseley a tape of Trevor “in action”. After viewing the tape, Dr. Moseley felt that he could make a prosthesis for Trevor! He sent Tim a schedule of what would be done and the time needed…and felt he could do it in a week! It was going to be tight!! Finally a time was set up for Tim and Trevor to travel to California (the rest of the family stayed home, because school was still in session), to see Dr. Moseley! And it was a bonus for us, since Tim and Trevor would be staying with us!!!
Dr. Moseley suggested that they work at his house, that it would be more comfortable for Trevor. It had a large back yard, and he felt that Trevor would be happier if he could run around, than being in a modern sterile office! I liked this right away…he was thinking of Trevor!!! On Monday afternoon, we went to Dr. Moseley’s modest home, and he was able to observe Trevor, and then he made measurements and a cast of his right leg and foot. This took some time (we were their approximately four hours), and we were very impressed with how Trevor (at 3) knew what was going on!! He was very patient and stood still while the cast was being made. He said, “Now I am going to be tall”!! The next day we went back for a fit of the cast and a few modifications were made. On Wednesday, Dr. Moseley made an unfinished prosthesis for Trevor’s right leg!!! We received a real education…none of us knew how much went into making a prosthesis! Everything has to be aligned and perfect for it to be able to work properly! On a side note, while Dr. Moseley was working so hard, we took Trevor to the beach!!! His first trip to see the ocean!!!
On Thursday morning, Trevor tried his “new leg”! After a few more adjustments, he was able to take his first steps! It did not take him long at all to start using his ankle as a knee! He walked with help, till he became more stable, which did not take long! Trevor wore the unfinished prosthesis home; to make sure it was a good fit for him. In fact that night they went over to Sondra’s sisters and he even played a little basketball with some of his cousins!! The next day (Friday) we took the prosthesis back to Dr. Moseley for a few adjustments and left it with him to complete the prosthesis! He said that he would do all he could to get it finished by that evening, so Trevor could have it to take home with on Saturday morning!! We went shopping on our way home to try and find some pants that would fit over the prosthesis. We found some warm up pants, with snaps on the side and they worked perfectly. Also, had to find some socks that would come up and fit snug so the device would not rub against his skin.
We received the call about 10 PM…and Tim went to Santa Monica and picked up “Trevor’s new leg”!!!
We are just so happy that we were able to share in this time, with Trevor! The prosthesis will help him now, but we know that he will have a lot of obstacles to overcome, as he gets older. But even at a young age he has a lot of determination, and he will make the best out of life!!!
Talked to Sondra last night, and he is doing well with his “new leg”. Going to the bathroom is a big challenge for him. Right now they have to remove the prosthesis every time…but they are working on that!!! He has been wearing it to pre-school, in fact I guess he shared it with everyone! He was so proud; he unsnapped his pants on the side and showed them his “new leg”!! What a kid!!!
I will continue this saga as new information develops, for now though, this is a wonderful thing for our grandson Trevor!!!
LaVerna Edmonds,
Torrance California