Helpful Resources for Amputee Families
Whether you are a new amputee or someone who is facing amputation, the most important thing to remember is that you are not alone. As Lera was faced with the difficult decision to have amputation, it was critical to find and to meet a team of experts prior to surgery to gain a much deeper understanding of what to expect in the weeks and months after the surgery so that informed decision could be made.
Top priorities were to find...
1) a surgeon Lera could trust and felt 100% comfortable with.
2) a prosthetist who understood her physiology and the mechanics of her mobility with and without her limbs.
3) to begin working with a PT who had expertise in working with amputees before the surgery to understand what the process and timeline we were facing for Lera to achieve her mobility and freedom.
The decision to consider amputation was not made lightly. Amputation was initially recommended by Lera's orthopedic surgeon at Shriner's Hospital in LA with the concern that Lera's legs would not be able to support her growing upper body for much longer and she would need to consider transitioning to using a wheelchair as she grew. Lera was in 100% right away but her parents needed a bit more time to let it sink in.
After finding just the right orthopedic surgeon to address what Lera needed, everything came together rapidly. Thankfully, recommendations they received for prosthetist and PT were perfect. As for finding the right surgeon, for Lera, her mom being a pediatric nurse at a local pediatric hospital helped them to zero in on a wonderful orthopedic surgeon. When in doubt, talk to your nurse friends (if you have friends who works in Preop or PACU, they are the best ones to ask for recommendations). Your nurse friends will be more than happy to share who they love working with. The family was then introduced to an incredible pediatric prosthetist, Jillian Okimoto at Hanger Clinic in Phoenix, AZ. Upon their first meeting, she immediately referred us to Dan at Touchstone Rehabilitation in Phoenix, AZ.
As much support and encouragement as Lera and her family received from their team, they still had many questions along the way and having a great team behind them was very important especially during the post-surgical healing process. Most importantly the team at Hanger Clinic introduced Lera and her family to sled hockey, Challenged Athletes Foundation and Camp No Limits right away. For Lera, finding sports have been a catalyst for healing and a way to embrace her new found freedom.