Friday, 20 December 2013

Living With a Halo part two

My little star is a real trouper. She is coping so well and I'm so proud of her. We had a hospital appointment yesterday where she went to have all her screws tightened up. They also gave her an x-ray and things are still looking good. Her Daddy got to see the scan pictures all in order from the start and was a bit shocked at how bad it actually became before they did the manipulation. Thankfully things are looking much better now. It's still not perfect because the consultant over compensated, but he insists that it will go back once the halo is off.

Sleeping has become easier for Star. It's probably down to just getting used to the halo more than anything else. She only has pain relief when she asks for it, which is usually last thing at night and first thing in the morning. She has really adapted to wearing the halo and never lets me forget to clean her pin points regularly.

We have found a way of washing her hair.
First I put towels around the edge of her sheepskin. Then I cover her with a black plastic bag. Then I use a plastic hair dressing cape across her shoulder bars.
I put the Little Man's step in the bath for her to sit on. Then I wash her hair trying to use as little water as possible.
It's not easy but it gets the job done and so far we've not got the sheepskin wet.

Clothes are still a problem but we've found that spaghetti strap vests that are a couple of sizes too big will go up from the bottom and stay on her shoulders. They manage to keep her tummy and side bits covered up.
Then we can but button through cardi's or blouses over the top. Luckily there is not problem with her wearing her normal jeans and trousers. I did buy her some dungarees but she's not keen on them.

We took her to her school for the Christmas concert and they all made a fuss of her. We even had seats reserved for us at the front. We may consider sending her back to school after Christmas for a couple of mornings a week.

Here she is feeling a little sick after her trip to the hospital, but I wanted to show you how she relaxes, and also how we are dressing her.




2 comments:

  1. Oh wow. I've just found your post on Google+. What a brave girl she is. Best wishes to you all!

    ReplyDelete
  2. That looks like a nice shirt :) sounds like she's doing so well, what an inspiration! Can't be easy for you juggling everything at mo (an understatement, huh?!) but hope you do manage to find some time to relax too x

    ReplyDelete

It is so nice of you to stop by my blog, I would love for you to leave a comment too. I will reply to as many as I can and if you are a blogger you can expect a return visit from me. Many thanks, Anne xx

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