Wednesday, 8 January 2014

Living With a Halo - part one

This is a post copied from my other blog which I've decided to include as it explains how we have coped with the halo.

One week on from Lucy's operation and we are learning how to cope with the halo. Just over a week ago I was thinking of how I would cope with Lucy's long hair if she had the halo fitted (it wasn't definite then) but now I see that really was the least of our problems.

 Starting with the hair though, it really isn't too bad. The halo doesn't go all the way around the head, there is a gap at the back, perfect for reaching the hair and putting it in a plait or pony tail. We do have screws in the side of her skull which means hair brushing is difficult, but it's not so impossible to keep it tidy. Also, I've been told that it may be possible to wash her hair next week when the pin point wounds have healed more. We just have to find a way of doing it without getting the vest wet.

 Now, our biggest problem is clothing. I didn't realise just how big the vest is, both at the front and the back. And the bars come right down onto the chest making putting clothes on almost impossible. So far we have managed to fit her in a cardigan which just covered her arms and fitted around her back. So I tried one of my bolero type cardis which has a fastening at the front. It just about does up at the front but tends to slip off her shoulders. The other day I took an old vest top apart and sewed on some ribbons to see if I could adjust it to fit around the vest. I had a little success, although the vest was way too small. I think with a larger vest it just might work but it's going to look weird. I've ordered her some dungarees, and praying that they fit. They seem the perfect solution as they open up at the shoulders. Also, they are adjustable at the sides so we could just leave them open if they don't fit over the vest. Fingers crossed they do the job.

Another huge problem is getting out, especially to hospital appointments. I currently don't have a car but I would so appreciate having one right now. We can't really take her on the bus, it just wouldn't be safe for her, I'd be scared of her bumping into one of the bars, or someone else. The ride can be quite jolty too, even if I ask the driver to stop while she sits down or gets off. I think she could cope with the stares, we're kind of used to that with her having to wear a collar for so long. However, the halo is unpleasant to look at and I wouldn't want to distress anyone on public transport. Taxi's are a good alternative but so expensive, and we don't exactly have a lot of money right now. I've tried to find some hospital non-emergency transport but so far had no luck. I'm managed to get two offers of lifts from friends and family, that leaves four journeys until the halo is removed. Also, I can't really take her anywhere else. We have been invited to see a play at the town hall at Christmas but I have no idea how to get her there.

Now, I'm quite used to not having much sleep. The Little Man has only been sleeping through the night for a short while, and Lucy has never been a good sleeper anyway. However, I'm finding looking after her during the night a big strain. She calls out to me often needing me to turn her over, or rub her knees (this is usually what keeps us awake) or give her painkillers, or just comfort her because she's distressed. This is happening all night long and I'm lucky to get an hour in-between. I do hope she settles more as she gets used to the halo, for both of our sakes.

Other things we've had to get used to are;
Cleaning the pin points. I found it quite hard at first, but now I don't think too much about it and just get it done. The ones at the back are the hardest because you can't see past her hair, but I'm so glad they didn't have to shave her.
Washing. We can't get the sheepskin under the vest wet, so no showers. She can have a shallow bath, but to be honest, I'd be terrified of her getting in and out, she's not the best at this without a halo. So it's wash downs. And we can clean under the sheepskin with baby wipes. I'm dreading what her skin will be like when it comes off.
Stairs. Lucy has always been a little awkward on the stairs and now it's ten times worse. Now she has to balance herself and has limited vision. I have to follow her every time she goes up, and come down in front of her just in case.

The halo is big and hard, I'm already sporting bruises on my arms and shoulders from it, and every time I go to kiss her it feels like I'm close to losing an eye. It's really not a kind or friendly contraption, hugs are out of the question. Also, when you collide with her, and believe me we are trying very hard not too, you worry about hurting her, although she hasn't complained yet.

On the plus side, and it's really hard to find a plus side, lucy has been brilliant. She hasn't complained much at all It has to be uncomfortable, and sometimes I watch her facial expressions and know she's in pain, but when I ask she says something like "it doesn't hurt too much, mummy" She's a proper trouper. I really hope this is all worth it and she comes out of it fixed and pain free.

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