K – right now I’m in wide-eyed, don’t panic mode. Then I will get into research mode. Then we’ll figure out what the best thing to do is.
Long story short: We went to the Down Syndrome clinic last month for a check-in and check-up and got some good general feedback. At the very end, the PT (physical therapist) noticed Jordan’s hips were really loose. More than she expected or something. She looked more, she called other people over and we got a referral to an orthopedist next door at Shriner’s. This morning was that appointment.
They talked with me, looked Jordan over, had him run up and down the hall and pushed and pulled his legs, feeling his hips especially. Even I could see his right hip klunk in and out of joint (without pain from Jordan). We took xrays of his hips and his c-spine. Don’t really know how the c-spine xray is related (at all) but he wanted it done and I have been putting that off so we did it too. Jordan was pretty scared the whole appointment, but was a trooper and did really well considering I couldn’t explain to him that the xray machine was taking a picture and wasn’t going to chase him down and poke him or something. I was a little wrong though.
His spine xray showed all is well in the spot that can be too loose in people with Down Syndrome. Between the hip xray and the physical examination, though, the doctor recommended treatment to fix his hip joints. This treatment… is not pretty. It involves breaking and resetting his pelvis and his femurs, shortening his ligaments, 4+ days in the hospital and a spica cast for 8 weeks, which goes from waist to ankles with a hole for a diaper. That’s followed by PT and a prayer that it was successful.
Steps now are a MRI to get a better visual on his hip joint (the x-ray didn’t show enough). Then another consult. Then I will take that stuff and get a second opinion, because this does not sound like a good idea to me. No kidding, right?
So now you can freak out and pray with me while I go to my peeps and get more information. I need more input about: what happens if we don’t do it? (loss of mobility? pain?) How successful is it likely to be? Do we have alternatives? Etc.
A spica cast.
Oh dear!! But he may be so much better after it all gets healed. Hope and pray for the best!!
Wow, Rachel! That’s crazy news to get and process. You’re reminding me that in the recovery after Niko’s tonsillectomy on Mar. 1, Niko would continuously pop his hip in and out as he dealt with the pain. I tried to get him to stop but he was pretty inconsolable. Yikes, I should probably book an appointment with his physical therapist. Sorry we missed you this week. I thought of you as we drove through your state.
Oh my, Rachel! I feel for you and will pray that the reality will be less intense than your worries about it. I can pray for that with great understanding!