Namine did not have a good day at therapy yesterday. Some days are better than others – that’s true of anyone – but lately she’s been complaining of more pain than usual. Considering that she’d rather suffer in silence than admit pain, that’s saying something.

We found out a while ago the truth of Namine’s right shoulder. It is not, as we had previously believed, simply a bad shoulder resulting from too many PICC lines. It is the result of a genetic anomaly, one for which her doctors have no name.


Yesterday in therapy, the pain was so bad that Namine was screaming and crying. She said she wanted to be done, she didn’t want to walk anymore. On Christmas Eve, Namine showed my family how she walked in her walker. We didn’t make her do it; she asked to walk, so I brought in her walker. She didn’t walk for very long, though.

There have been signs that something deeper might be wrong. Namine is not standing as straight in her walker as she used to. She leans, sometimes a little, sometimes a lot. It depends on how much her arm is hurting that day.

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Namine has a pink pair of shoes that she’s been wearing for some time; they don’t hold her feet in place as firmly as her AFOs, but her PT has told us that they’re fine for her. It seems that Namine is complaining of her feet hurting while in her shoes more and more, sometimes when she’s only had them on for a couple hours.

We have an appointment to see Namine’s orthopedic surgeon, who is also an expert in spine and other bone disorders. He advises us on her scoliosis, and he was content to not do anything proactive about her shoulder, as long as it wasn’t bothering her. Well, it’s bothering her now – along with her legs and feet, it seems. We think it’s a good idea to have some scans done; at least x-ray, but the good doctor might even want an MRI as well. We’ll see.

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