But you must try, try and try, try and try

We finally feel ready to provide an update on Louis after his surgery. The surgery went well! Dr. Feldman decided he did not need to do an osteotomy or make any adjustments to Louis’ femur bones. This was great news because that’s less intervention, and he had no weight-bearing restrictions postoperatively. The surgery entailed soft tissue (tendons, ligaments, etc.) releases in both knees. The surgeon was able to get over 100° of flexion or bend in the OR, but the goal is to maintain 90° of flexion. We only spent one day in the hospital, as expected, but it certainly felt longer than that. Watching Louis come out of anesthesia was challenging, but we knew he felt a little better when he ate 6 orange Popsicles. We ultimately got his pain managed, and he left the hospital with knee splints that held his knees in a 90° bend. He had to wear these splints 24/7 except for physical therapy three times a day.

Louis' physical therapy started the day after we left the hospital, and we are continuing to go every weekday. Therapy initially involved range of motion stretches 3 times daily (meaning mom and dad must do them at home, too.) It is critical to continue these stretches, especially for the next 6 months. The challenge with kids with Arthrogryposis is they can regress and lose the range of motion they have gained, especially as they go through growth spurts. So, we must remain diligent until he’s done growing—just a short 16 years or so. The stretches are intense for all of us. As anyone who has had surgery can imagine, having someone mess with the surgery site immediately is not a pleasant experience. There are plenty of tears and screaming on Louis’ part, which is heartbreaking and gut-wrenching to watch as parents. However, we do not want his surgery to be in vain. Luckily, the stretches have gotten a little easier as time passes, and we are doing our best to focus on our larger goals to get through this challenging time. New toys and ice cream are also helping.

We saw Dr. Feldman 9 days after his surgery for a post-op appointment. He said Louis’ knees looked amazing, which was incredible to hear from the surgeon. We knew people would be impressed with Louis. We will see the surgeon again in mid-December and continue physical therapy until then. We got new KAFOs (knee, ankle, and foot orthotics), which allow Louis to reduce the time he stays in the knee flexion splints. This has been a lifesaver because he can now scoot around and stand with these. His physical therapist had him working on walking, reaching down to pick up toys from a standing position, and going from laying down to sitting up—which is incredible to see so soon after surgery. We can’t wait to see the progress he will make by the end of the experience! Thank you so much to everyone who has supported us. We can’t tell how much your calls, texts, prayers, and gifts have touched us and strengthened us throughout this experience. Louis and his parents cannot do it without you!