Connor helped pick out the design of his website!! Pretty cool huh?! He is our little superhero, our "IronConnor"
Connor did wonderfully with the Hip Osteotomy last year! After coming out of the Spica cast he was using the walker and before we knew it he was back to his old self climbing and rough housing just like nothing ever happened. We returned to Shriners around April last year to get the pin removed and once again Connor was just as strong and brave as ever!! After the removal he was restricted to baths and swimming which it wasn't summer yet so swimming wasn't an issue and he just took showers instead of baths, easy right! He decided to throw in a broken elbow over the summer, a week after pools opened and was out of the swimming scene till mid July. He required surgery with his elbow and had 2 pins placed. Once the pins came out he was told by the doctor the only physical therapy he needed was SWIMMING!!! He definitely keeps us busy.
So now comes the "Getting Ready for Lengthening" part.
We had a visit with Dr. Eric Gordon at Shriner's back in November 2013. Here is where we discussed the plan for Connor's lengthening.
Connor is scheduled for Surgery April 2, 2014. We are beginning with a Femur Lengthening with a Taylor Frame fixator. This device is a beast of a device in simple terms. It is going to start at the top of his thigh and go to the middle of his Tibia/Fibula. This device will not only lengthen the bone but also help to straighten the bone as it grows and will help stabilize his knee and rotate his knee so his knee is more in front of him as opposed to the side which is how it looks now. He will have this device on anywhere from 6-12 months. The more activity he does will promote a "quicker" bone healing. It will be no less than 6 months are we are thinking more like 8 months just so we don't get our hopes up that we will be done at the 6 month marker. 
These are two pictures of what the device will look like. The picture to the left is of a boy a few years older than Connor but it gives you an idea of what this looks like. Unlike this boy, Connor's fixator will be a little longer.
For this surgery Connor will be in the hospital from at least 5 days up to about 10 depending on how quickly he recovers and we learn the proper care Connor and the device need. We are looking at Physical Therapy 3 days a week for the entire duration the fixator is on. In addition we will also see Dr Gordon every Wednesday for x-rays to check bone growth and pin sites. As with any open wounds the risk of infection is extremely high and we are well aware we may have additional surgeries for thorough cleaning of pin site and or tendon release if the tendons become to stiff. We had the decision to try and do 2 of the 3 days of physical therapy closer to home at an outpatient facility but decided that with the level of expertise the Shriner's team has we feel its best to drive the extra miles to get Connor the best outcome with therapy.
Connor will be out of school for about 2 weeks. Once we get his care plan down of what days we will be going to Shriner's we will send him back to school. We are already in the process with Lakeview Elementary of getting him approved for the 504 plan which is basically stating the school cannot discriminate against him because of his disability and that he will be medically cleared from the days he will miss and not be penalized with truancy. His school team is made up of some wonderful people who will help make the school environment safe and still fun for him. We are hoping to schedule physical therapy after lunch at Shriner's so that Connor gets the academic courses like reading and writing and math as opposed to PE and Art and Music. While I fully believe that those classes are very much needed he needs to have strong reading writing and math more than the others. We will have to have numerous meetings during the summer with school because he will still be in the middle of this at the start of his 1st Grade year.
As for his activity once the fixator is in place he is pretty much a go for most things boys like to do. He can still play on a playground and most importantly he will get to go swimming! It is almost most encouraged for him to swim as this will be great therapy and he won't even know that it is!
Connor knows that we are starting this process in April. He is a little nervous but has always still stated that he just wants his little leg big. He knows all the options and he knows this is going to hurt but he wants to have BOTH legs the same. We are going to get both feet of the ground and it all starts with the first step. This is not the first surgery and this will defiantly not be the last. He are looking at 2 more additional lengthening's after this one and hope to have him completely lengthened by the age of 16.
Please keep Connor and all of us Maine's in your thoughts and prayers. I will try my best to keep everyone updated of Connor's journey.
