First of all, sorry for the delay in posting! I should have been
posting little updates all summer but things just got a bit overwhelming
and emotional. I wanted to quickly share an update on our amazing progress so far!
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:
A highlight of our trip was participating in the Palm Beach Marathon! The Paley Foundation sets up a 5K included with the race for all of the patients and families in town. Everyone walked, ran, crutched and strolled to the finish line. It was so much fun and one of the most uplifting days of our lives! We are now looking for more 5k races to do!
