Sunday, 24 August 2014

Almost one week later

It's Lucy's 9th Birthday :)
There have been times when I've worried that she wouldn't make it :(
But she has and is now out of danger and hopefully will recover well. She's already doing really great, last night she slept without a collar for the first time in over a year!

This time she had stitches in her pin wounds, she didn't last time, which I don't really understand, but then the halo was fitted by different consultants each time, maybe they have their own methods?

She only had four pins second time where she had eight the last. So now we have just four wounds to heal and they are in the same place as four of the last ones which is good (otherwise we'd be dealing with six scars)

Pin wounds on the forehead

I can see the scars from the old pin wounds alongside the new ones, but I'm not sure how noticeable they are to others.

Here is a photo of her scar as it is now. I think it may be time to try out some lotions to approve it's appearance.

It seems she can look further to the right than the left, but look carefully and you can see her shoulder are more twisted, so in fact the movement is about the same. So far, it's as the Dr's expected, her movement is 50 per cent that of a normal child. There may be further improvement in time, but it's unlikely.

Lucy still walks, plays and moves as if she is still wearing the halo. I suppose this is normal.

We still have so much to be thankful for, our little girl is still with us and no longer in danger. We are so lucky.

Wednesday, 20 August 2014


Today Lucy had her halo removed (again)
We arrived at the hospital at 8am, she went to theatre at around 9.15am and was back on the ward by 10.15am

She was drowsy for a while as the anaesthetic wore off. She'd been waking a little and asking if the halo had gone, then falling back to sleep. The she'd wake again and ask if the halo had gone. Finally when she woke up properly she expressed her joy at not having the halo anymore and said.
"At last, I'm FREE!"
Then she started crying, which made me cry.

She had a collar on but the consultant had told us that she needed to take it off as much as possible so she could strengthen her neck muscle which hadn't been used for two months. Two months! It's been over 12 months that she's been in a collar or halo, the consultant can't see past the current situation which was removing the halo after two months.

We took the collar off and Lucy exclaimed

"I'm normal again" 
Then she started crying again, which made me cry again.

Truly an emotional day.

Tuesday, 12 August 2014

A Date At Last.

When Lucy had her operation and halo applied we were told it would be removed in six to eight weeks. Well, six weeks passed and she was given a CT scan to check how things were. Then eight weeks passed and we still hadn't heard anything from the hospital so I gave them a call. I was told that she would have an appointment as soon as possible. The appointment came through for 12th November!! That means she would have had the halo on for five months.
I called again and explained why I believed she should be seen sooner and was told that she (the secretary) would have a word with Lucy's consultant to see what he said and get back to me. Three days later I called again to see what the consultant had said to be told that he hadn't seen the message yet and she would make sure he saw it that day.

Surely, it shouldn't be like this? She is an eight year old girl, she should  be seen in the time limits given, I shouldn't have to keep calling and pestering just to get her seen.

Anyway, the secretary called back and Lucy will be going into hospital next Monday morning to have the halo removed.

Then we will see what she is like, how much movement she has lost, if her neck is straight, if all of this has been worth while.

If she is fixed.

We have changed our minds again and have decided that she should have a general anaesthetic when she has the halo removed. The points have become quite sore and there has been some weeping which has scabbed over. We just think that it may be just a little too painful for her to endure. We also believe that she's not as brave as she often makes out. Sometimes she is able to express herself more and we can see just how frightened she actually is. We want the best for her and taking everything into consideration we now believe that the after effects of the anaesthetic would be easier for her to cope with than not having any while the halo is removed.

With the turn in the weather it makes us think that Summer will soon be over. We have tried to make the most of it but with Lucy in her halo we've not been able to take a holiday, or visit the beach, or do many of the fun things that we see others doing with their children while the weather has been warm and sunny. We can't visit adventure parks or go on bouncy castles, we can't go swimming or play sports. We refuse to keep out of the public eye, ignoring the stares and constantly answering questions, why should she stay indoors.

Having a new car has been a godsend. It's so much easier, and more comfortable for Lucy to go out now. So even though things have been bleak at least we've had something good in our lives.

A Day in the Life

 I've decided that I want to write things down for a couple of reasons. One is that I find it helpful to put it down to talk about it in...