A Distant Memory
Seven braces, six shoe lifts, five sets of crutches, four reclining wheelchairs (sizes XS, S, M, L) three walkers, two canes, and one wheelchair ramp – this represents six years of surgeries and dealing with Perthes for more than nine years (2.5 years were misdiagnosed). We are living proof that God can move mountains and everything is in His time. I’m so happy to report that Christopher is doing well for the first time since 3rd grade!!! He was part of the junior varsity high school swim team and they won district! He also enjoys the competitive men’s choir and is maintaining a 4.0 GPA.
Today marks the 3rd anniversary of Christopher’s failed head-splitting osteotomy surgery and hip fracture (two days later) during the first physical therapy transfer in the hospital. I’m so glad those days are behind us. The total hip replacement was the best decision we ever made because it gave him his life back – pain-free!!!
For all the new and current warriors battling Perthes, here are some tips:
- Always follow your instinct. It will not lead you in the wrong direction. If it feels right, then God is leading you down the correct path.
- Ask for your medical records, and if they do not give them to you, go to the person higher in the chain of command. Those are YOUR records and you can learn a lot that your physician will never tell you in person (like a cut was made too deep and caused your son’s hip to fracture – not to mention the bone was too soft).
- Do not attempt a head splitting osteotomy until the bone is hard enough to handle the surgery. You may be tempted to rush into that surgery because your child cannot walk and is in a wheelchair. Be patient and make sure it is the right time. We are living proof of how terribly wrong it can go.
- Join a Facebook Perthes group, I have had the best sounding board over the years from the Perthes Warriors that went before us and we are there for those that are just beginning the journey.
- Never allow your child to see how scared you are for them. Half of this battle is mental and you need for them to stay positive. I never allowed pity parties to go on for more than a day. Life gave us lemons and we made awesome lemonade!
- A shower is a perfect place for a good cry. I cried for four months straight once we knew he had bilateral Perthes. He never knew how sad I was for him.
- Your closest friends and family will not understand what you are going through during this time. Our Perthes family knows what we endure daily and the fears/joys. Lean on them during your darkest days. One day the sun will shine again.
- No two Perthes patients are the same. We are all like snowflakes and each case is different. One child will have a light case of Perthes with no surgery and return to living life quickly and another one will have a severe case and will endure multiple surgeries and sit on the sidelines.
- Enjoy the small victories! First time to walk without crutches, walker, wheelchair – just know that things can change quickly so enjoy the moments.
- Your child will more than likely become a wise, compassionate person because of Perthes. Christopher isn’t sad he had Perthes because he knows it molded him into the person he is today.
We are enjoying the moment and are currently pain free!!! I wish the same for all of our Perthes Warriors. Never give up because one day you will have both feet on the ground!