When Ruby was quite young, probably 2, we noticed that her left hip would clunk and grind at times when she was squirming in our arms. This concern was discussed with the pediatrician, but upon examination, nothing was found wrong.
At age 3 1/2, during a Physical Therapy session, the therapist felt Ruby's hips "pop out of joint". She was quite concerned and recommended that we see our doctor. We did so, and received a referral to an orthopedic surgeon. Had an appointment with that orthopedic surgeon soon after, and were told that it was just Ruby's tendon popping, and that the hip wasn't actually dislocated. He also told us that Ruby's hips were twisted funny in the x-ray, and that nothing was wrong. I trusted him, figuring we have had a litany of tendon problems with the twins - Isaac had to wear ankle braces from 18 months to 4 1/2 due to tendon problems, and Ruby has Brown Syndrome, which is a tendon problem in the eye - and just chalked Ruby's hip problem up to yet another tendon problem. When I relayed this information to our Physical Therapist, she suggested getting a second opinion. She told me that she had felt tendons pop before, and what she felt was NOT a tendon.
We moved soon after this, and didn't get a second opinion for another 8 months. That doctor said that Ruby's hips were subluxed some, but she had no real concern. She was more interested in educating the resident than she was in talking to me. Incredibly frustrating. We followed up in 6 months, and this time I brought my assertive husband with me. This time, the doctor told us that Ruby's hips would probably require surgery. Then we went for around 5 weeks without learning anything more, though I bothered them quite a lot. Finally, I told them I was done getting put off and I wanted an answer. The doctor called me that day, told me that if there had been anything seriously wrong with Ruby's hips, they would have told me. Okay, well, I thought that saying that she probably needed surgery, and then sending us in for additional x-rays and videos meant that there was something seriously wrong. And does nobody realize that Ruby is getting older and older and older and they're not fixing the problem?!?!?! =P Anyways, she transferred us to another doctor.
So, in October of 2011, we saw Dr. Walker for the first time. She examined Ruby's hips, and like all the other doctors was unable to dislocate Ruby's hip. However, she was much different from the other doctors, in that she LISTENED to Ruby. Ruby showed her how she pops her hips out, and the doctor was surprised, saying that she thinks Ruby is partially or completely dislocating her hip on her own. (We found out later through a second-opinion doctor that Ruby's hips pop out the front of the socket, which is rare, and which is also why no doctors have been able to dislocate Ruby's hips on their own - they were always trying to pop them out the back of the socket.) Anyways, Dr. Walker said that Ruby would need to have surgery and then a cast, OR "just" a cast for 6 months. We'd never heard of the cast-only option before, and were quite excited about the prospect. A week or so later, we learned that this is what Dr. Walker wanted to do with Ruby. Which was all good until we started thinking.
We have a genetic condition in our family - Charcot-Marie Tooth disease. David and I always figured that both Ruby and Isaac have it, due to their physical delays/weakness/problems/whatever, but we've never had them tested for it. (Though I had specifically asked the doctors if we should have her tested, and they said no.) Well, I did my Internet research and found that CMT can affect hips (and David's cousin, who has CMT, has had 2 total hip replacements, both before age 40). We kept bringing this up to the doctors, but they just weren't concerned. Finally, I found an awesome article from Mayo Clinic about CMT and hips, sent the important snippets of the article on to our Care Coordinator at Shriners, and she sent it on to the doctor. We went in for a "clarification" appointment with Dr. Walker, and she decided that if Ruby had CMT, we would do surgery, but if she didn't, we'd proceed with the casting plan. Fine. (Oh, yeah...somewhere in there they sent us to a Geneticist, who saw no need to do any testing.)
So, off to a neurologist we went. CMT tests are EXPENSIVE and insurance doesn't cover them. Luckily, David's Dad had his blood-test done, and we knew what type of CMT we should test for. So, that cut our cost down significantly. But we had to wait a month to get the results. And had to wait for the results before we could schedule casting/surgery. FRUSTRATING to say the least, since we've been talking CMT at the orthopedic surgeons since we started going. AHHH!!!! Anyways, yeah, test came back positive. So surgery was scheduled. For April. (Did I mention that we specifically said we wanted this done in the winter so Ruby could be outside and exercising in the summer? Yeah. =P) Anyways....
Good news is that the second surgery is only 12 days after the first surgery, and then 7 weeks after the second surgery she will hopefully get her cast off. Then just have to find out how long in a brace.
Anyways, we wait. And pray. You see, when Ruby was in-utero, the doctors told us that the blood flow through the umbilical cord was stopping and that Ruby wouldn't make it. We prayed. I was annointed. And the next time we went in for an ultrasound, we were told that there were no more problems with the blood flow. PRAISE GOD!!! Ruby has been annointed for her hips. They continue to grind, pop, and clunk. But I know that if it is His will, God can again heal Ruby. Please pray with us.
Update: Ruby had bilateral Pemberton Osteotomies in 2012 and spent 10.5 weeks in a chest to toe spica cast. She learned to walk independently 11 days or so after having her cast removed. Her hips still clunk around, but we've been told she's all good. Her acetabular indices are much improved. Still have check-ups with the orthopedic surgeon to make sure things stay on the up and up.
