We are now 3 years post ex fix. That seems hard to believe. In some ways, it feels like Perthes totally took over her life and in other ways, it really feels like a distant memory to us.
Ava has completely moved on from Perthes. We still have checkups from Dr. Standard - in fact, we have one coming up in a couple weeks and I'll try to remember to update. We actually haven't seen him since LAST YEAR. :o He said that we are fine to be on yearly appointments now unless something changes. That was amazing to hear!
Here are her updates by date:
August 2015 (10 months after ex fix removal) - climbing the rock wall at the pool!
We went to Universal Studios to the Harry Potter world and when she went back to school, she took her ex fix (daddy glued it all back together for her) so that she could pass it around her class and they could see how heavy it was!!
October 2015 (12 months after ex fix removal):
Ava running at a field hockey practice
Ava running at a field hockey practice
March 2016
Ava running the Final Mile (the last mile of the Shamrock Half Marathon)
And still working hard at PT to regain strength and range of motion:
May 2016 - End of the year party for her 4th grade class was at the ROLLER SKATING RINK! I was a little worried, to be honest, not just that she wouldn't be able to have the range of motion to skate, but also that she could fall on her hip...yikes! But I tried to be calm and let her be a kid. And she did GREAT!
July 2016 - Being a KID at the waterpark! This is the stuff she would be missing out on if we had gone with a 'wait and see' approach! The ex fix gave her childhood back!!
July 2016 - Camp Perthes
This was definitely the highlight of Ava's year! Earl Cole, a winner of Survivor, battled Perthes as a child. He started this camp for kids with Perthes to be with others who understand what it's like. The camp was in Florida, but I really wanted Ava to have this experience! She absolutely LOVED it. And she got to hang with Annabelle, who we met in Baltimore and who had the ex fix after Ava at only 5yo!
This was definitely the highlight of Ava's year! Earl Cole, a winner of Survivor, battled Perthes as a child. He started this camp for kids with Perthes to be with others who understand what it's like. The camp was in Florida, but I really wanted Ava to have this experience! She absolutely LOVED it. And she got to hang with Annabelle, who we met in Baltimore and who had the ex fix after Ava at only 5yo!
September 2016: We went to the Adventure Park, which is a high ropes and ziplining course. She had an absolute BLAST (my daredevil!) and only had minor aches the next day - amazing!!
Also, we saw Dr. Standard for our next checkup. Here are her xrays. He cleared her to come back IN A YEAR!!!! So exciting to get to the stage where we don't have to drive up there every few months!!
October 2016 (2 years after ex fix removal)
Ava is back to playing softball and LOVING IT!
She's also on both summer AND winter swim team to keep building strength and keeping up with range of motion. She is NOT good at doing her daily Perthes exercises, but these daily swim practices help her maintain most of her ROM.
March 2017: We went on a family cruise for Spring Break and they had a rock climbing wall. Of course, Ava wanted to climb a bunch of times. Check out her RIGHT leg - that's the Perthes leg that she couldn't flex or bend the knee well after the ex fix!!!
May 2017 - Softball season again! Check out this RUN to first base! She's not the fastest on the team, but by gosh, she loves it and we are thrilled for her to be able to participate!
Sorry to have all that to catch up on in one post, but I wanted to let everyone know how Ava has been doing. Will try to update after her appointment with Dr. Standard and share more pics and xrays then!
Feel free to email me at amcghee77@gmail dot com if you have any questions or need support on your child's journey with Perthes!!
Feel free to email me at amcghee77@gmail dot com if you have any questions or need support on your child's journey with Perthes!!
-Amanda
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