We stopped lengthening at the end of July and Sadie gained 7.8 centimeters of new length on her leg. That is a little over 3 inches and almost the max of what you can get with an external fixator! The visual difference is incredible! We are now in the "consolidation phase" which means her bone is actually growing back together from where we separated it all spring and summer (it's called distraction). I have to say it was the hardest thing we've ever done in so many ways and very emotional seeing her in pain with me being the one inflicting most of it with physical therapy 3 times per day and the knee bar at night. But she is very happy with her new leg and just happy overall. We really enjoyed our time in Florida and I feel the girls and I created amazing memories and a bond together going through something like that. We learned a lot about being brave and having courage. It's amazing what happens when you set your mind to be a certain way. Our overall goal was to be as happy and positive as possible. Our Brave Sadie Spotify playlist helped us a lot! Here is a link: https://open.spotify.com/user/22nskxshe4suclbto6c6cpfhq/playlist/5bvyWXYWdukGAcN5OOcjRT?si=ehFbioUi
We flew back to Ohio on July 31. Sadie started 1st grade on August 17. Sienna and I drive her to school and pick her up every day because we are too nervous about all of the bumps and movement if she rode the bus. She isn't allowed to play on the playground equipment at school and also is not allowed to run or jump as her bone is now growing in and everything is quite fragile still. All her friends at school are taking great care of her and sitting with her at recess. We are still doing physical therapy 3 times per day (attempting to really get those in), wearing the knee bar at night to hold her leg straight and still have the need to tighten it, and also cleaning the pins daily. It's a lot of work! The physical therapy is still quite difficult, as her muscles are very tight. I try to use the heating pad and a mixture of coconut oil with a bunch of essential oils mixed in as a massage rub. We also still take a lot of ibuprofen (both of us, haha). Not sure how much anything helps but we keep trying!
We get x-rays monthly and send to Dr. Robbins at the Paley Institute so he can tell us how her leg looks and when we can schedule the surgery to have her fixator removed. I'll update more as things progress! We're hoping for November timeframe for fixator removal.
Sadie doesn't wear her orthotic-prosthetic anymore because her leg is too long for it! She now wears a shoe lift. The upside of that is that her leg is longer and she is much less self-conscious about it. The downside is that we have to pay for that out of pocket each time we want a new pair of shoes with a lift she can wear - about $60 per pair. I had 3 pairs made for her before school started and she seems happy with those for now!
For the future, Sadie will need 3 more lengthenings in order to finally have her feet on the ground when she stops growing. Every other summer, we will travel back to West Palm Beach and do this all over again, for about the next 8 years. Good thing we're in love with Florida!! The good news is she can do the next 3 with an internal fixator, which we are told by all the other Paley families who have experienced it that the pain and hassle is much much easier than lengthening with the external fixator, which she wears right now.
We're so thankful for the ability to be able to help Sadie get 2 feet on the ground and eventually be shoe lift and prosthetic free with a fully functioning leg and hip!
Here are a few pics from our 4 months in Florida and beyond! What an adjustment going from living in Palm Beach Gardens and back to Mentor.
Back in Ohio:
