The First Year...
Connor was born at 36 weeks gestation on September 11, 2007 weighing in at 7 pounds 6 ounces! He is technically premature but one very healthy preemie. He was born with all ten fingers and toes. We were in love instantly. Shortly after I was out of recovery and Connor was all done getting all cleaned up we started the loves and kisses. The doctors came in to speak with us and it was then they told us about Connor's right leg being smaller than his left. I remember him telling me all this but it did not sink in until after the doctor left and we really took a good look at his legs. I was heart broken. I thought that I had some how done this to this incredibly beautiful boy. Shortly before we were discharged we spoke with the doctor again and said that we were to go see an orthopedic specialist. After about a month we went and saw Dr. Laura Meyers. She was wonderful. Made us truly understand that what happened was not any kind of genetic abnormality. Just a birth defect. We did x-rays and ultrasounds and found out Connor has whats called Proximal Femoral Focal Deficiency or PFFD. At the time the x-rays and ultrasounds looked good for someone with this diagnosis. Said to follow back in about 5 months. It was in March we went back and did repeat tests and she was very happy with how everything was growing but did suggest at that time that due to the severity of his discrepancy that we should look into Shriner's Hospital for Children here in St. Louis. We finally got into Shriner's in April of 2008. Here is what Shriner's had to say...His discrepancy is 20% measuring in at a 5 centimeter difference or 2 inches. Which over time the 20% will NOT decrease, which means by the time he is fully grown there will be a 7 inch difference, pretty major! So with that being said they gave us a few options. One would be to do no surgeries and make a prosthesis where his foot would be in a prosthesis meaning they would do a small surgery to where the foot would be placed in the "pointed" position and then it would just slide into the device. The second option would be to do the leg lengthening (LLS) surgeries which are "very painful." There will be between 3 and 9 total surgeries depending on the severity and how it is growing. And the third is to amputate the right foot and proceed with a prosthetic device. Andy and I knew at that moment that amputation was completely out of the question. Which left us with the prosthesis or lengthening. We both agreed that if it were either of us we would want to lengthen. We know that this is going to be extremely painful but we think that this is best. So from here on we will be coming to Shriner's to do yearly checkups and to come in to get lifts put onto his shoes and to get fitted for an Ankle Foot Orthotic or AFO, basically a support brace for his ankle.
Connor got his first shoe lift and brace in May of 2008 when he started pulling himself up and cruising. It took a little time but he got use to it.
Fast Forward to 2012...
So Connor is this huge ball of intense energy! He has got a personality out of this world!!! He is the sweetest little 5 year old I have ever met!! He is every bit my child as he never STOPS TALKING!! He gets around so well with his leg, really NOTHING can slow this child down. There are no obstacles in his way. He thinks that his "big shoes" are awesome and loves getting new shoes that make him go "super fast!"
We went back to Shriner's the last week of August this year. Here we not only met with Dr. Perry Schoenecker but also Dr. Eric Gordon. Dr Gordon will be the surgeon performing Connor's lengthenings. At this time Connor is at a 16cm(4inches) difference. He suggested that he needs to have a hip surgery before we start the legthenings so that he has good hip joint and function so we wont have the risk of any hip dislocations. Dr. Schoencker will be performing the hip surgery. This will be the first surgery in this long road ahead. Today, November 2, 2012, we received the phone call we were nervously awaiting. His surgery has been scheduled! We have known since the day he was born that he would be going through all this, I just didn't think it would get here so quickly. So the big day is January 7th, 2013. He will be at Shriner's Hospital for Children here in St. Louis. We will be doing a Pre-Op visit right before Christmas. This visit will teach us what to expect from this surgery and to go over the surgery plan, tour the hospital and meet the staff who will be directly working with us. I have spoken to a couple families who have already started this process and though they say it is very painful as a mother to see your child in pain, you have to see the light at the end and know that it will get better and they won't remember the pain. Just like giving birth, if we remembered how painful it was would we really want to do it all over again? The body and mind have a great way of healing you not only of the physical pain but the mental pain that went with it.
We hope and pray Connor stays the fun brave sweet energetic enthusiastic ball of fire that he his. That God gave him this personality to show us all how truly strong he is and to give us the faith that God will always be with us on this journey. We ask all to keep not only Connor but all of us Maine's in your prayers. This is going to be a very difficult time for all of us but together we will stay strong for Connor and eachother. We will keep everyone updated on how Connor is doing through this blog. Pass it on to those you care about so that Connor has all the love and support he can get during this time.
May God Bless
