Namine had an appointment at the ENT clinic the other day. The news was not surprising, and not very alarming, either. Namine still has an ear infection in her left ear, but thankfully it is only still in her left ear. We’ve already got ear drops, though, so we’ll be giving those to her until tomorrow. The other appointment she had was yesterday, meeting with Dr. Black – our new orthopedic surgeon – in order to determine how to rectify Dr. Thometz’s screwups.

We’ve known for a while that Dr. Thometz (also referred to as “Dr. Fuckup”) did something wrong with Namine’s foot surgery. We’ve had a gut feeling that her braces weren’t doing a damn thing to help her feet maintain a flat position, and that her feet themselves are regressing too fast. This last – that her feet are regressing – is a risk we knew about before proceding with surgery, and even Dr. Thometz, with all his lack of bedside manner, told us about it. We felt before, and still do feel, that it is a risk worth taking, especially because as Namine grows, she evidences more and more her desire to walk.

Of all the things we expected, learning more about Namine’s feet in two hours than we had in all the rest of her life was not one of them. Dr. Black, once we had finished with taking x-rays of Namine’s spine, hips, legs, and feet, was more than willing to show and explain everything to us. This was already more than we’d ever gotten from Thometz; he would rarely explain things to us, and when he did, he would opt to use only the choicest, biggest medical terms he could think of. (Even Dr. Gordon, Namine’s special needs doctor, sometimes had difficulty deciphering his medicalspeak.) And never did he show us any x-rays. The only x-rays we ever saw were when we ended up in the ER – like when we thought Namine had broken something in her leg.

We already knew that Namine has scoliosis, and yesterday’s x-rays confirmed that. It’s a mild form, but it is there, so that’s something else that Dr. Black wants to watch. We’ll probably visit him every six months, just to be sure.

We had always been told that both Namine’s hips are dislocated. For more than three years now, we’ve operated under the assumption that Namine’s ability to stand is nothing short of a miracle, with two dislocated hips; but it was revealed to us yesterday that they might not be. It’s hard to tell, but Dr. Black seems more trusting in Namine’s own abilities than a bit of film. He wants to watch her, in order to be sure, but he feels confident that the right hip, if not also the left hip, is firmly in its socket.

In hearing Dr. Black talk about Namine’s foot surgery, I could hear his disdain for the doctor who performed it. At least, I think I could. (It’s possible that was my own hatred for the man coloring my thoughts just a little.) One of the biggest problems for Namine, aside from the fact that her feet are regressing back into their curved position, is that her feet turn inward. Thometz thought to correct that with the surgery he did – making cuts and removing pieces of bone – but he didn’t do enough. And now, when Namine walks, her feet hit each other because they turn inward so much. Dr. Black explained to us that it’s not just her feet that need correcting; her tibias (shin bones) actually torque inward as well. In order to efficiently correct the position of her feet, the tibias need to be cut and readjusted with plates and screws. This is something that can be done relatively soon, but we need to have Namine’s echocardiogram first. If she needs the Fontan, that of course takes precedence over all else. Dr. Black also told us that the curvature in Namine’s feet can be corrected further, but she needs to be older and bigger for that.

One of the last things Dr. Black did at the appointment was look at Namine’s feet in the AFOs. He concluded that they’re really not doing anything to help hold her feet in place, and they’re only hurting her. So from this point forward, we no longer have to use them – neither the day braces nor the night ones. Namine has flexible little shoes she can wear during therapy to walk in, and those are comfortable.

  • Leah, Mike & Alyssa

    I’m so glad you actually have a Doctor that’s looking at Namine as Namine and not as another patient/number. What a relief about her hips.