Maura’s next hip follow up is tomorrow (June 6, 2017). She has now been in the rhino brace just under 20 weeks (12 weeks full time, and 8 weeks 18-20 hrs a day). I was excited for our last hip appointment because I thought I knew what to expect. Our previous doctor had been very set on 12 weeks full time, 12 weeks half time as the standard protocol for treatment after the cast. Our new doctor holds different opinions on treatment. I was devastated 8 weeks ago when I expected to hear that we were free during the days to wear cute clothes, show off our little legs, and do what every other kid does for the warmer spring months – instead I heard “She’s doing great, you can start taking the brace off for 4 hours a day!” I must have given the doctor a look of death because he immediately said “or 6, more won’t hurt…. and longer for special occasions”
I knew this was a possibility. Our doctor back in Oregon told us that many doctors hold different opinions on treatment protocols when it comes to bracing and that there isn’t any research to support the differences. And, I have searched through every research database I have access to – and he’s right – I can’t seem to find anything. :Sigh: It’s not that I wasn’t happy to have more free time, but I felt like the light at the end of the tunnel went out. Without a specific timeline, how do we know for sure when this journey will end? I guess we don’t. So here I am, trying to prepare for our next appointment. Will we get the news we want to hear? or will this journey drag on and on.
Appointment prep questions:
- Is her progress still in line with your expectations?
- How are we measuring progress? What is our end goal? (I asked this question last time and was disappointed in the response I got of “I’ve seen lots of hips and we’re just looking for more improvement” You know what I didn’t find in my research? an article that recommended “eye ball the xray and go with your gut” grrr, better ask this question again!
- Is the chance of future surgery still approximately 10%?
- Are there any activity restrictions or recommendations?
I’m sure I’ll think of more by tomorrow, but for now that sums up what I need to know. Wish us luck!