Saturday, 8 February 2014

Still Waiting For a Cuddle

Monday marks the tenth week of halo wearing for Star. Ten weeks without a proper cuddle, it's not good for either of us. We have adapted so much that we barely notice the halo now, but I am getting so fed up, I just want her back to normal. She's coping better than me, it doesn't seem to bother her at all. She doesn't like having the pins cleaned and she's not keen on going out, but otherwise she's happy. She's sleeping better and can even get in and out of bed by herself now.

Bathing is still a big issue, it takes forever to get her wrapped up in plastic before we can go anywhere near the water. but once in the bath she likes to give her feet a soak. She can't bend her head back while I wash her hair so the water goes all over her face, but she's ok if I give her a flannel to hold over her eyes.

I'm frustrated with the hospital. The last appointment went well but we seem to have been forgotten about as soon as we left. The CT scanner broke and all appointments were pushed back six weeks, including Stars. This means while we were waiting for them to call us to go in last week, they were not expecting us until mid March!!! I'm so glad I called to find out what was going on, the Dr had no idea. Three hassling calls later and we finally got a scan last Wednesday afternoon.

We went along and there was little waiting around. It was Lucy's first scan since having the halo and she said it was good because before it hurt to lie on her back, but now the halo supports her. After the scan we went straight home, there was no doctor to speak to. So now we are waiting again. I did think they may have called on Thursday or Friday, but no. I left a message. I'm hassling again, I hate it, it should be up to them to let me know what's going on, I shouldn't have to keep calling and begging for information.

I complained last Monday that Star had not been seen by a doctor for over two weeks, well it's over three now and she's still not been given an appointment. It looks like the halo won't be removed any time soon.


  1. It still amazes me just what a brave girl she is! Really hope things move forward for you both with seeing a doctor soon - must be so frustrating. Much love xxx

  2. I can't begin to imagine how frustrating this must be for you all! Star looks as though she's coping better than her mum though. Keep pestering the doctors for answers, sometimes it's the only way forward. Thinking of you x


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