Today we went back to the hospital, we've been going weekly since she came home. She saw a dr that we have not seen before, he looked at her for about five seconds and then said ok, we'll see her in 6 weeks. He didn't even ask if she felt any better or if I had any concerns.
Next we went to see the orthotics nurse who fitted her with a new collar. This one is a torticollis collar and is meant to correct the neck back into it's normal position. It doesn't. Within half hour of wearing it Stars neck was bending right down again and she'd slipped right out of the support. Now if she sits up straight she can stay in the support, but she's 8 years old and there is no way I can keep her sitting straight all day.
Her old collar gave her support but it wasn't correcting her neck. Five times a day we have been removing the collar and doing physio with her. It hurts her, but mostly because the collar is causing her neck to be stiff. That's why we have to keep exercising.
After the collar fitting we went to see the physiotherapist who was the most concerned of everyone we saw today. She doesn't see much improvement either and is worried that the new collar is not suitable for Star. She has told me to give it a try but to call her if I am worried. We go back for physiotherapy every week until Star is well again. It may be some time.
The bus journey home reminded me of the time before she had the first collar, she cried in pain at every bump, break and corner. I'll definitely be using her old collar for journeys in the future.
Tonight for the first time in over a week I had to give her codeine at bedtime to ease her pain. She'd had paracetamol earlier but it didn't help. The codeine works but now she'll be nauseous in the morning.
Soon Star will be going back to school. A new school in a new area with none of her friends there to support her. I am so worried for her.