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Raisie Bay

specialneeds

Still Waiting For a Cuddle

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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.

Talking Point

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Star had another hospital appointment today and thankfully it was not as distressing as the last. I’m keeping a new blog to track her journey, not just with her neck but with her hypermobility and autism too. You can find it at www.zebrahooves.co.uk

We are now looking forward as the past week has gone quickly and it could possibly be just a couple of weeks before the halo is taken off. Also, the consultant has promised to get us a referral to a rhuematologist so they can take a look at Star’s hypermobility and hopefully get her a proper diagnosis.

We took the bus to the hospital again today, despite Star getting sick on the journey last week. I had hoped it was a one off, but she did feel sick again this week, just not as bad. I really considered getting a car so I could take her myself, but hopefully things will be better when the halo is removed, and that shouldn’t be too long now. Maybe I’ll arrange a lift for the next appointment. Anway, I need my money so I can finish carpeting and furnishing our new house, a car is a luxury we can’t afford right now.

There was an old lady on the bus who was very interested in Star and asked lots of questions. Now, I actually find this quite refreshing. I’d rather people ask than just look and quickly look away if caught looking. She’s not a monster, she’s receiving treatment and I’m happy to discuss it with anyone who asks. She does get a lot of stares off other children. I think they are really curious as to what it is on her head. When I took her to the theatre just after Christmas one little boy came up and started asking questions and his parent dragged him away apologetically. I don’t think you should apologise for a child’s curiosity.

We have a local mini supermarket close by our home and the guy behind the till rarely speaks to customers apart from to say how much is owed. If you ask him a question his answers are really short and to the point. I don’t think this is a bad thing (I’d probably be the same) but it is a sharp contrast to the other shops in the area where everyone is really chatty and knows everyone else’s business. When I went in the shop with Star he didn’t hesitate in asking lots of questions about her halo and what was wrong with her. It was obvious that English was not his first language which is probably why he doesn’t normally say much. I was pleased he finally spoke to us.

last week I was feeling down about it all, but now I believe the end is near and that the future will hold answers and support. I do hope I’m right.

Extended Sentence

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I started today with great expectations, it was Star’s fifth hospital appointment since her discharge and they told us that the halo was to be fitted for six weeks. Last weeks appointment had been cancelled by the hospital. I’m not sure why, they just said come in two weeks the week before. I was confused because we’d been told that the halo needed checking every week. I did call to ask but was just given a new appointment, which was today.

We decided to brave the bus into town. Star has been on the bus a couple of times now so I thought she would be okay. Her mood was not good from the start though. For some reason she didn’t want to go to the hospital and wasn’t being very co-operative. I finally persuaded her by allowing her to take the Mobigo to play with. Once out she was a little better, although she was very wobbly on her feet and complained of her knees hurting.

At the hospital we have appointments on the ward were she was confined. She went straight to the play room, took off her shoes and snuggled up in the giant beanbag with a book.

When we were called in by the Dr she took the book with her but refused to put her shoes back on.

The book turned out to be a lifesaver, so to speak. On examination the doctor discovered that most of her screws in her skull had come lose and two had actually worked themselves free. I had a feeling that they were not right because the night before I’d managed to de-tangle her hair for the first time since she’d had the halo fitted. I am not a doctor though, there was not way I could tell the screws had come out unless I pulled them because they were still in the skin, just not the skull. I was told the reason they had come loose is because they had been left too long and I should have attended the week before. Nice one, make me feel guilty for your mistakes!

So, the screws had to be replaced and this was done by the doctor while the nurse and myself distracted Star with her book. Of course the two bad ones were too much for her and the tears came fast. Looking back now the whole experience makes me feel sick, but at the time I just held her the best I could and comforted her the best I could. That’s what mum’s do isn’t it?

So when it was all done, and the screws on her vest were tightened the doctor arranged an appointment for next week. So then I asked when the halo would be removed and he said it would be another two to six weeks yet. He said it was at six weeks when they started regular CT scans and they would only consider removing it when they were happy.

I left the hospital feeling completely deflated. Of course I want it to work properly, when they take it off I want her to be fixed. Still, it’s like anything that is horrible, you count the days until the end, and I really thought the end was nigh.

Star didn’t really understand what was going on. She became quite sick on the bus on the way home and at one point I really thought we would have to get off for a while. But we made it, and since being home she has been okay. She complained of a headache just before bed, I’m surprised she didn’t complain earlier, I know I would have. I gave her some Ibuprofen and she wasn’t long gong to sleep.

Now it’s time to get practical. I spoke to the hospital teacher this morning and she told me to contact her if Star was going to be in the halo any longer and she would arrange for some teaching for her. I had mentioned to the school headteacher that I was concerned about her lack of schooling and she didn’t seem to keen on having her in the school with the halo still on. I was concerned anyway because a lot of the children at the school are boisterous and I’d be worried about her getting hurt. To see the head teacher with concerns makes me convinced that she shouldn’t go back just yet. So she will need to continue her education at home. I’ll be teaching her until we get some help.

I will need to buy her some more clothes. She has received some lovely clothing gifts from kind friends and I’ve bought her what I can, but to be honest it really is a pain finding suitable clothing that fits. Not only that but the vest has ruined a few things too, it has lots of jagged bits that work their way through the clothing.

I am going to try and come up with some sort of home-made cover for washing. Our current method is time consuming and Star really doesn’t like it. What I need is some sort of plastic bag vest that is shaped just right, something we can slip on and off easily.

We did do something helpful today. On arriving at the hospital another consultant asked us if we would speak with a family who’s son is having a halo fitted tomorrow. They had no idea what it was and the consultant though it would be helpful if they could see Star and speak with me. Of course I was happy to oblige. I’ve found it so difficult to find information on Star’s condition and even the halo so I have a wish to enlighten other’s who will find themselves in the same position. This is why I’ve started up a new blog all about Star.

So we spoke to the family. They looked at Star and I told them what to expect and how do deal with certain things, like clothing and bathing, the sort of things I’ve had to work out for myself. I hope that I have helped them in some way.

Living With a Halo part two

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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.

Living With a Halo

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One week on from Stars 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 Stars 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 Star 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. Star 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, Star 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.

Boo woke up this morning and said “mummy, I had a wonderful dream” I asked her what it was and she said, “Lucy didn’t have to wear a halo or a collar any more and everything was great”

Despite everything my little girl still smiles