Ava is still working hard at maintaining her range of motion. She still fights us on our daily stretches (that may never change) but seems to do better with the physical therapists, so we continue to go to PT three days a week. It is a drain - both physically and financially, but until she can really get full range of motion and start working on strengthening and gait training, we have to stick it out.
Her scars are healing pretty nicely. They are turning a more purpleish color rather than red/pink and the top ones (that you can't see in this picture) seem to be healing more quickly. Doesn't surprise me since the bottom three were the ones that were such gaping holes and gave her so much trouble with the ex fix.
I recently went through the 'tub of medicine' and organized and threw away a lot of stuff from the ex fix days. I lined it all up on the kitchen counter and couldn't help myself as the tears started flowing. I never imagined I would have to give my child Oxycodone....for months at a time. I never imagined having this much medication and medical supplies in my house. We have been so spoiled for so long with good health and no physical issues that this came out of nowhere and really shocked us.
On March 7th, something truly AMAZING happened. Something that was not at all amazing 8 months ago. Ava rode her bike. I know, you're thinking, "So what? She's almost 9yo." but the range of motion and strength required to ride a bike is something that has eluded her since she got the ex fix off. But she LOVES riding her bike and even when she got the all clear from Dr. Standard, she still wasn't able to. But that's all over now, baby! She's off!!!
We met with some friends to play and Ava even was ROCK WALL CLIMBING!! Truly incredible!
Hello! My daughter was just diagnosed with Perthes on Thursday. She is 7 1/2 and reading through your story, makes me wonder if our journey will be similar to yours. My husband actually had Perthes when he was 5 so we are familiar with this disease and how different it is with every child. I would appreciate any information or support groups you have. Thank you so much and many prayers for Ava and your entire family! You can contact me at ginnymertes@gmail.com
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