Friday, 6 June 2014

Almost Time

I have just received a call from the hospital asking me for Lucy's measurements for the halo.
She had a shower yesterday and complained she didn't like showers....just  a few more days and she won't be able to shower for weeks, maybe months.
I put on her t-shirt for her this morning, removing her cervical collar and pulling it gently over her head. Just a few more days and she won't be able to wear t-shirts.
Then I gave her a gentle cuddle and kiss. Just a few more days.......

I can't really explain how I'm really feeling right now. I was talking with Lucy's dad last night and we both feel the same. The main feeling is fear, we are both really scared that something is going to go wrong, we can't even mention the worst case scenario...over-reacting...maybe, but always a possibility. We are worried about how she will cope with it all next week, it's definitely going to be one of the worst weeks of her life and we don't want to see her suffer. We are worried that it may not work and all her suffering will be for nothing. Another over-reaction? Can you blame us, we thought the physio therapy would work but it didn't, we thought the manipulation would work but it didn't, we thought the halo would work, but it didn't, of course we are not going to have complete faith.

There are so many things that can go wrong. There is no promise of a full and complete recovery, she won't be able to move her neck very much at all afterwards. There is no way we can't go through with it, it's not just the twisting of her neck, or the pain, she can cope with that. It is getting worse and we can't allow that, the more it slips the closer it becomes to being fatal. Quite simply, if she doesn't get it fixed she could die.

I'm trying to keep myself busy with planning. We are all hoping to stay at the hospital with her until after her operations. Dad will stay by her side and I will stay in a family room with the other two little ones. They will have to have a few days off school, sorry Mr Gove I know you won't approve. If they can't accomodate us at the hospital then I will stay by Lucy's side and Dad will stay with the other two at his mum's. Simply so there is someone to look after them while he is at the hospital all day with me.

I have to leave things in order at home so the older two can look after themselves, so a weekend shop is in order and I'll have to make sure all the laundry is sorted.

So it's going to be a tense week coming up. Please keep Lucy in your thoughts and hopefully I'll be bringing her smiling face back home again as soon as possible.


  1. Dear Anne, I am so sorry you are all going through this awful time. I didn't realise that if Lucy is not fixed ...well i can't even type it..... You are in my thoughts, i hope the hospital give you some reassurance ...being so far away i don't know if there is anything i can do to help, but if you think of something ? please let me know Love to all the family, Caroline XXXX

  2. Thinking of you all Anne; will be praying all goes well for Lucy xxxx


Could it be A sign of IBD?

 Last week I took L to see a new gastroentrologist at the Children's hospital. She's had gastro problems since birth and we've s...