Amazing Avery - Our journey with PFFD

Amazing Avery - Our journey with PFFD Updating everyone as we embark on the task of correcting Avery's leg length discrepancy

Home from Ohio! 🦋 Avery's femur has grown about 20mm since her last X-rays 9 months ago. We have the choice to wait for ...
05/30/2025

Home from Ohio! 🦋 Avery's femur has grown about 20mm since her last X-rays 9 months ago. We have the choice to wait for it to grow more to be able to do the internal nail lengthening (the preferred option) or we can do the lengthening now with an external fixator, which we really do not want to do 🫤 Since she is doing well with her prosthesis we're just going to keep waiting and letting her grow some more! We'll go back for another checkup and X-rays in a year 🩷🦵🏻

It's been a hot minute since I've posted here! 😄 Today we are headed to Ohio for a checkup with Dr. Iobst, the surgeon t...
05/30/2025

It's been a hot minute since I've posted here! 😄 Today we are headed to Ohio for a checkup with Dr. Iobst, the surgeon that will eventually do Avery's leg lengthening. As of her last checkup almost a year ago, her femur needed to grow 30mm more before we could consider doing the lengthening surgery. I'm anxious to see what her growth is today 😬 Wish us luck! 🩷🦵🏻🥰

An update! After our last visit to the doctor in Ohio in December (the last time I updated here 🙃) Avery was fitted with...
08/06/2024

An update! After our last visit to the doctor in Ohio in December (the last time I updated here 🙃) Avery was fitted with her foot-on-foot prosthesis, and has been wearing it almost daily and doing great with it!
Today we had a checkup and xrays with her original orthopedic doctor at Peyton Manning Children's Hospital and got a little bit of an update and a plan for her future lengthening. Her femur still needs to grow about 30mm more to be able to do the Precice internal lengthening which is our ideal goal. Since her last xray a year and a half ago, her femur has grown about 37mm, so we are expecting another year and a half before the femur will be the target size for lengthening.
We will go back to NCH in Ohio when the time comes for the surgery to attach the Precice system, but we will be able to do her bi-weekly checkups and xrays with her doctor here at Peyton Manning which is awesome for us 👏🏻
So, we are still just playing the waiting game for now! Waiting for her little femur to keep growing until our next steps 💕🦵🏻

Before: out cold 😂😴During: her "butterfly hospital" as she calls it ❤️🦋After: prizes for being a great patient 😊It was a...
12/05/2023

Before: out cold 😂😴
During: her "butterfly hospital" as she calls it ❤️🦋
After: prizes for being a great patient 😊

It was a good day! We have an appointment Thursday to get started on making her new foot prostethic 🤞🏻

12/04/2023

Today we are headed to Ohio to meet Dr. Napolitano and get Avery fitted for a foot-on-foot prostethic ❤️🦿 Send us all the good thoughts and prayers!

Some recent pictures of Avery rocking PT 💪🏻❤️
05/23/2023

Some recent pictures of Avery rocking PT 💪🏻❤️

After 5 months of waiting, Avery Jane finally had her first PT appointment with her new physical therapist yesterday! Sh...
04/11/2023

After 5 months of waiting, Avery Jane finally had her first PT appointment with her new physical therapist yesterday! She did awesome, no crying or whining and did everything they asked her to do. She even woke up excited for it yesterday saying "today is physical therapy!" 😂❤️

Another checkup down ✅ Silly as ever, brave as ever ❤️ The doctor left the ball in our court today, he said it's all up ...
02/28/2023

Another checkup down ✅ Silly as ever, brave as ever ❤️ The doctor left the ball in our court today, he said it's all up to us now how soon we want to start the lengthening process. We could start next week if we're ready to get rolling, but he also doesn't see anything wrong with waiting another year or two since she is doing just fine. There are pros and cons both ways, so we've got some thinking to do. 🙏🏻 Love our girl, so so much 🥰🥰

02/27/2023

We are on the road to Ohio for Avery's 6 month checkup today! 🚗❤️

Last night was Avery's last PT visit with Miss Cheyenne 😢 After multiple therapists we went through, Cheyenne was the on...
11/17/2022

Last night was Avery's last PT visit with Miss Cheyenne 😢 After multiple therapists we went through, Cheyenne was the only one Avery has ever cooperated with and really enjoyed going to therapy with. Even on days she didn't have PT, Avery would say "can we go see Miss Cheyenne today?" ❤️ But life calls and Miss Cheyenne is moving on to her next adventure in life so we understand! We sure will miss her and I know she will miss Avery too!

Side note-- these pictures are from Monday evening at therapy, NOT last night... because last night, Avery was too tired and refused to do absolutely A N Y T H I N G other than cry for an hour 🙃 it was a very disappointing last session and mommy cried the whole way home after we left 😭

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