There will be an answer, let it be.

I can’t believe I’m finding the time right now to sit down and write this bog post because we are leaving for Florida tomorrow, but it feels like we still have a million things to do. We booked Louis’ surgery back in June and it felt so far away, yet here it is just around the corner on November 7th. It felt important to make time to write this post because I know Louis has a lot of people in his corner who are eager to know what he has going on.

Louis is having surgery on both of his knees on Tuesday. I’ve had people ask me what the name of the surgery is, and the name just involves the procedure to lengthen/address different tendons around his knees. The surgeon may also have to modify his femur bone but he’s not sure until he is working on Louis. The surgery will take about three hours or so. We are expected to spend one night in the hospital and hopefully be able to discharge the next day. The remainder of the time we are in Florida (about six weeks), Louis will be in an intensive rehab program, going to physical therapy about four or five times a week. The goal of surgery and therapy is to increase the range of motion in his knees, so they bend to at least 90°. They can bend about 30 to 40° currently. An increased range of motion in his knees will help him to be able to use his legs more functional matter, whether that's sitting more comfortably, using stairs, going from sitting to standing, etc.

This is going to be an intense experience for our family, and most likely the first of a few more surgeries. We are experiencing a lot of emotions as parents. It is scary for someone at any age to undergo surgery and, as any parent knows, it’s incredibly difficult to watch your child in pain. Moreover, something we’re both learning his parents is that it can be hard to know that you’re making the right decisions for your child. While we grapple with these emotions, we know this experience is going to be difficult in the short term, but we believe it’s going to be beneficial in the long run. We are so lucky to have friends and family that love us, to be able to take time off work or work remotely, and to have found Dr. Feldman and the Paley Institute. We also have immense gratitude for our position in life because there are kids born with this condition around the world where these types of interventions are not available. And we are so thankful for Louis. He truly is bright light in our lives. The older he gets and the more his personality develops, the more our hearts fill with love. Finally, we just want to say thank you to everyone for supporting our family and we will do the best we can to Update everyone as we are able.