Pre-appointment jitters

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:

  1. Is her progress still in line with your expectations?
  2. 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!
  3. Is the chance of future surgery still approximately 10%?
  4. 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!

 

 

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3 thoughts on “Pre-appointment jitters”

  1. Hope your appointment went well? We had spica no. 3 put on today, but got above knee on both sides which is so exciting! We have had 12 weeks of to the ankle on her affected hip. Half way through spica journey for us today, 6 weeks in this one 6 weeks in broomsticks then supposedly that standard brace time you mentioned 6 weeks full time, 6 weeks nights only, though surgeon today said “brace for quite awhile…” so who knows!

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    1. Ooooh not good, haven’t worked up the energy to write about it! Her progress was minimal since her last check. The dr took her out of the rhino during the day, but due to lack of progress. Future osteotomy likely but we wait and see how it progresses on it’s own for the next year or so. :sigh:

      Above the knee is exciting! We hoped our second one would be like that but it was almost identical to the first. Yay for half way! Keep on plugging away!

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      1. Oh no!! Sad to hear that! Gosh it’s such a marathon isn’t it with this! We also did the IVF thing so it’s like here we go again!
        But yes so far so good, broomsticks next though with the bar across which sounds really restrictive and hard when she will get used to moving more! But one step at a time I guess!

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