1 Year Since the First Halo

This time last year Lucy was in hospital waiting to have her manipulation and halo fitted. We had no idea what to expect and neither did she. I really didn't think that they would go  ahead with it, the pictures I'd seen looked barbaric and I couldn't imagine my little girl like that.

Then we went to pick her up from theatre and this is what greeted us.

We were horrified, none more so that Lucy herself who immediately tried to pull it off. It was most distressing. We did get used to it though. In just  few days she was up and moving around, and five days later she went home from hospital. She was in the halo for 14 weeks in total and we did get used to it. We had no choice really.

I started this blog because having to face this was such a big thing I thought it would be nice to share our experiences and let others know that it can be done, it's not all bad. Of course it would have been nice if it had worked, but sadly as soon as it was removed, Lucy's neck bent again. That was heartbreaking.

We didn't give up though, we couldn't really. Just three months after having it removed Lucy was back having it put on again. This time though she'd been fixed with a plate, screws and bone graft. The second time the halo was on for only six weeks and Lucy took it in her stride. This time it worked and now my little girl is fixed. She only has 50 percent movement in her neck but she copes great.

We are taking a break for now but will soon be chasing up our appointment with the rheumatologist. We want to know why this happened and if similar injuries can be prevented in the future.

We also need to sort out her knee problems, although I'm not hopeful as it's something she's suffered with since birth and has had no help with so far.

Finally, I need to sort out a special needs statement before she heads on up to secondary school. I really don't think she will manage otherwise.

My little zebra has a long journey ahead of her.

Looking Forward!

Today I've been watching You Tube videos of young people having their halos removed without anaesthetic.
When Lucy was having her first halo removed the consultant did say that he could do it with her awake but they liked to anaesthetise children because it can be a traumatic experience. Currently, Lucy is having her most worries over having anaesthetic again. She always feels so poorly afterwards, and although we have tried both the gas and the injection, neither has been any different afterwards. She doesn't want her halo off because she doesn't want anaesthetic, so we are considering having it taken off without.

She goes to the hospital every week to have the screws tightened, both the ones on the vest and the ones in her skull. The Doctors are always amazed at how well she copes with this. I've been checking out the comments of young people who have had a halo and they have said that having the screws tightened is really painful. I know Lucy finds it difficult to express how it feels, and we have had some tears at times, but mostly she copes really well. So would she cope having it taken off? Well, it's something we are thinking about, we don't even know if the consultant would agree, and right now Lucy isn't so keen either. I hate having her pumped with such horrible poison that makes up anaesthetic.

Lucy has had two hospital appointments this week. The regular one to tighten her points and check up. We were worried that one of the points had become inflamed, but I bathed it carefully and regularly and it seemed to have cleared up loads by the time we went in for the appointment.

Then Lucy had another CT Scan. She is so used to these but this time there was a new machine and it threw her a little. Also, there was a very strong smell, I thought it smelt like new plastic, but Lucy assumed it was anaesthetic and started to gag. We managed to survive the scan though.

Now we just have to wait for the consultant to examine the CT Scan and then give us a date for removing the halo, it could be very soon. It will be amazing to get my little girl back again, but it's also a tense time to see if this last operation has worked and how much movement she will have. Looking back to when she had her last halo removed I had no reservations, I just assumed it had done the job and Lucy's neck would be fixed. It was a harrowing moment when I saw her head flop just a few hours after the removal. I'm am praying hard that this has finally fixed my little girl.

Halo Wearing - Summer Versus Winter

I wrote a post all about halo wearing back in March. It answers many of the questions asked about halos and what to expect.

I'd just like to add a few comments now on the differences between wearing a halo in the winter and the summer. Lucy had her last halo fitted from early December until late March. It was very cold but the vest is sheepskin lined so it kept her body warm. Unfortunately the sheepskin vest does not cover all of the body. The head and neck are exposed and because of the nature of the halo it is very difficult to cover these areas up. We did manage to thread a woollen scarf through the bars of the halo on really cold days which helped to keep her neck warm. There is no way of covering the head though, hats are out of the question. You can use an umbrella in the rain, but we found that the halo would keep getting caught on the spokes. We tried one of those dome shaped umbrellas but it wasn't much better. You are not supposed to get the halo wet so we found the easiest way to do this was not to go out if it was raining.

The halo vest does not cover the tummy and it is difficult to get clothing over the top. We managed to dress Lucy in a stappy vest under a shirt or button through cardigan a couple of sizes bigger than her regular size. Even then it was not possible to do more than two or three of the bottom buttons up and often the shoulders where uncovered apart from the halo vest. We found a big coat she could wear, but again couldn't do it all the way up for maximum coverage in the cold weather.

Apart from not getting the halo wet, it's also advisable not to go out when it's too cold as the points that enter the skull can get very cold and cause the wearer pain. This only happened to Lucy once, we did try to avoid taking her out when it was too cold.

When Lucy had the halo put on a second time it was in June. We have since had some really warm and sunny weather. So, no worries about covering her up and it hasn't rained much here either. It's not all good news though. We've found that Lucy has more headaches on sunny days. We are not sure if the halo is the cause, but she didn't really have so many headaches before it was applied. Also, the sheepskin vest is very warm. We've only been dressing her in her strappy vests, but she's still too hot and itchy all the time. It's even worse at night time when she's trying to sleep. She is just too hot.

We have had to be careful that she hasn't spent too much time in the sun so she doesn't get sunburnt or heatstroke. This time she also has a partially shaved head and healing scars. We can't put a hat on her or completely cover her in sun protection lotion.

Basically, halo wearing affects your life in both winter and summer. It's just as difficult to keep cool as it is to keep warm. Ironically, Lucy's summer halo appears to have much more sheepskin than the winter one. The summer one covers her neck a lot more, whereas the winter one left her neck exposed to the cold.


We are trying to keep things as normal as possible, and using Lucy as a guide we are getting out when we can, just not for long.

Two Weeks to Go

We have a date for Lucy's operations. She will go into hospital on the 8th June and have the first procedure the following morning. Then she will have the fusion on the Wednesday, just two days after.
So now we have two weeks and then it all begins.
Lucy is fine about it. We've talked about it and tried to make her understand but it's hard to get through to her sometimes. Her main concerns have been about the anaesthetic, she does not want gas this time. Also, she is worried about not being on the same ward as she usually is. She has been assigned a different consultant so she thinks this means a different ward, but that is not the case. She will be back on her regular ward with her favourite nurses and everything will feel familiar to her.

That seems strange saying that, I never really thought I'd be thinking of a hospital in terms of being a familiar place. It has become so though. We go to the ward and everyone knows Lucy's name. We go to radiology and we are greated with 'hello Lucy' and rarely have to show an appointment card or letter, ditto when we go to the physio therapy department. We can't walk around the hospital without someone recognising her. It really has become a second home. Yet it seems such a short time ago when we were first in A&E watching the new automatic doors being unable to close properly. Lucy still laughs about that, probably because I tried to keep her entertained during our long wait by saying the doors where shy but in love and trying desperately to kiss, but whenever they got close they were too shy and opened up again.

I'm getting in all the hugs I can while she is free from the halo. I'm dreading its return, I can't get close to her. This time she will be in much more pain too, how do I cope not being able to hold her and make her feel better. I'm already dreading the thought of her being in pain. In fact whenever I think about what she has to endure I feel sick. I really hope and pray it's not too bad for her.

So Your Child Needs A Halo!

When I was told that Lucy would need a halo brace I really had no idea what to expect. I found photo's by searching the Internet and was mostly horrified by what I saw and read.

I'm writing this post so that if any other parent finds themselves in the same position hopefully they will feel more enlightened, and not so frightened.

The halo looks like some piece of Victorian torture apparatus, but it really isn't that bad. It's not pleasant but in all honestly you do get used to it, both parents and the wearer.

Some of the things I thought about the evening before it was fitted.

What about her hair?

Lucy has long hair, I had no idea if they would shave any of it. I had no idea how I would be able to manage her hair once in the halo. I considered cutting her hair short. I really had no clue.

Well, generally, they do not shave children to fit a halo. The halo does not go all the way around the head, so if the child has long hair it can be brushed and styled from the back. For the actual fitting it is probably best to leave the hair down. I made the mistake of plaiting Lucy's hair and the screws were inserted through the plait causing it to be tangled. I'm so glad I didn't cut her hair, she didn't want me to and it would have been just one more thing for her to be upset about. 

With boys, things should be a lot easier. Short hair would be really easy to manage.

Washing the hair is a problem mainly because you can't get the vest wet. I've seen some photo's of people lying down on a counter while their hair was washed by someone else in a sink or bowl. 

I chose to wash Lucy's hair in the bath. I made sure the vest was covered completely by plastic bin liners and also managed to cover her shoulders with a hairdressers cape threaded through the bars of the halo. I washed her hair quickly to avoid her getting too wet, or the water seeping through the covers. 

What about her clothes?

The halo comes with a large, fleece lined plastic vest. There are bars and screws to consider. The shoulders and neck are hard to reach making dressing difficult. The vest does not cover the upper body completely, there are gaps at the sides. Also, it does not go right down over the waist so there will be a gap between the vest and the trousers or skirt.

I found that vests with spaghetti straps worked best. The thin straps were able to fit on the small space left on the shoulders. I had to buy them a couple of sized too big as the vest is quite bulky. We put them on from the bottom up. being stretchy was helpful too. I made sure the vests were long enough to cover her tummy.

Over the vest I found that blouses worked best. I guess shirts would work for boys. You won't be able to do them up to the neck so there will still be a gap. They will also need to be a couple of sizes too big. 

When going out in the cold we found the only way to cover her neck was by threading a scarf through the bars of the halo. This shouldn't be a problem in warmer weather.

Can You go Out?

For the first couple of weeks we didn't really take Lucy out. If we did we used a car. Once She was more comfortable with the halo we were able to venture out on public transport. 

A child wearing a halo has limited visability because  they cannot move their neck. They are also top heavy and it takes some time for them to gain their balance.

You shouldn't really go out if it's freezing cold as the pins can become very cold and they are in the skull. You should also avoid rain as it's difficult to keep the halo dry.

How Will They Sleep?

The simple answer is, just how they have always done...unless they sleep on their front. With Lucy it took her a couple of nights to get used to the halo then she was fine. She likes to sleep on her side and this is possible with the halo. The head doesn't touch the pillow, it is suspended. It doesn't look comfortable but it can't be too bad. Lying on the back is better because the halo doesn't  go all the way around and you can actually lie on the pillow. Even though the head is mostly not touching the pillow, it's still good to have a nice soft one. 

We found that for at least a couple of weeks Lucy couldn't turn herself over in the night, so if she became uncomfortable we had to go and turn her. Then she just started to be able to do it by herself, and get out of bed by herself.

The halo makes the child top heavy so it does take some getting used to but it's not impossible. I guess all children will be different and a younger child may have even more trouble mvoing around after lying down. 

This is how Lucy's slept

Can They Go To School?

We were told by the consultant at the hospital that it would be okay for Lucy to go back to school with the halo in place. I didn't really feel comfortable with this and decided to discuss it with her school. They were not too keen on having her there, they were worried she may fall or be pushed. So we arranged for  her to be sent some work to do at home. However, as the weeks progressed we decided the better option would be to apply for a home tutor. We have a very good school near us that provided home tutors for sick children and children who are otherwise unable to attend school for a period of time. This is what worked best for us. 

Does the Halo Hurt?

I've left this one until last because it is relative to the child. Lucy has a very high pain threshold and had little trouble with the halo. When it was first applied she was very distressed and had headaches for a few days. There were also a few times while wearing it that the points (the parts where the halo is screwed into the flesh and skull) were sore or hurt. However, she became comfortable very quickly and complained little. Another child might feel very differently. You have to remember that the the halo is heavy, uncomfortable and is screwed in. Also, the vest can be quite uncomfortable to wear and the skin underneath can become sore.

Lucy was very lucky, she had no infections at the points (which can happen) and no sore skin under the vest. 

There is one thing that is difficult to prepare for and that is how you will feel when you first see your child in the halo. I felt very distressed and a little nauseous. Lucy was also very distressed so I had to push my own feelings aside and not let on just how awful I felt. 

You really do get used to it pretty quickly though, it's not all bad.

Lucy stayed in hospital for five days after the halo was fitted. Before she came home she had to show that she could walk around the ward, walk up and down the stairs and I had to learn how to clean the points.

I hope this has helped a little if you have found yourself here because your child is going to need a halo. If you have any questions please ask in the comments or contact me.

Pin Wounds

When the halo is applied it is screwed into the skull to keep it in place. There are four pins at the front and four at the back.

This is what the pins look like when the halo is on.

I was worried about what sort of wounds would be left behind. If I'm honest I'm quite pleased because they are not as bad as I expected. 

The wounds are actually quite small. It's hard to tell from the photo but you can see that they are deep. Well, the pins did go straight through to the skull. There is a lot of healing to be done, outside and in, and the scars are bound to be lasting. I'm pretty sure they won't be too noticable though. The ones on the back of her head look slightly bigger somehow, but they will be covered by her hair anyway.

I'll be updating in the future on how the wounds heal.

The Halo is Removed

On Monday March the 3rd, after exactly thirteen weeks, Lucy had her halo removed.

Daddy took her to the hospital while I got her sister to school. I figured I should just about make it to the hospital in time for her to come out of theatre. Thanks to traffic I was five minutes late, and Lucy wasn't happy with me. Not the best of starts, but she soon forgive me.

The removal was quick, probably only took about 20 minutes with her being under anaesthetic. The pin wounds are clean and look like they will heal quickly and well. I was told that with adults they do not bother with a general anaesthetic to remove an halo, but it's better for children because it's less distressing and less risk of the child moving or trying to move while they are taking it off.

I was surprised to see that Lucy's skin looked fine under where the vest had been all this time. You can't wash under the vest, just wipe with a baby wipe or damp flannel. I thought she might have been marked or wrinkly but she just looked normal.

Lucy woke up hungry and the nurse fetched her some toast and squash, which she devoured. She seemed a little quiet at first, which is understandable, but she was soon her smiley self.
At lunch time we were asked if she would like to go to the playroom as they were having party food for lunch. I got Lucy out of bed and took her to the bathroom before dressing her. It seemed strange putting 'normal' clothes on her again. She has put on weight, so it looks like I'll be shopping again. We walked the length of the ward to the playroom and Lucy chose some food. We sat at the table but she said she felt all wobbly and wanted to go back to her bed. I think she was out of bed a total of fifteen minutes. She did eat and drink a little more though.

The nurse caring for Lucy told us that she just had to have an xray, and drink one more glass of squash and she could be discharged. We went for the xray around 3pm by which time Lucy was feeling a little pain and looking pale. The nurse decided to take her in a wheelchair rather than make her walk. By this time I was getting worried that Lucy just wasn't doing as well as we thought. Her head was floppy and she was sticking her chin out, which is something she does when she's in pain. As usual, when asked if she was ok she gave her usual reply, 'I'm fine'

I have to say at this point that Lucy's nurse this day was really brilliant, she was so attentive and told us what was going on all the time. Despite being an incredibly busy day she never left us for more than half an hour and listened to everything we said. So when I told her I was worried that Lucy wasn't acting like herself, she actually listened to me.

The Doctor came around and said Lucy's xray was good and she could go home. He said she should be sitting up though, and not in bed anymore. So I took her out of bed and she sat in the chair watching some tv. Then her nurse came to take her candula out and Lucy started vomiting, everywhere, tons of it. She was crying and complaining of headache, not like Lucy to complain at all so she must have been feeling really rough. The nurse said to put her back in bed and we were to delay going home for a couple of hours at least.

Thankfully, Lucy wasn't sick again, and after a dose of medicine her headache cleared up and she regained some colour. She was refusing to eat anything, scared of being sick again. The nurse said she'd be happy if she just kept a cup of squash down.

At 7pm Lucy had perked up a little, she'd kept her squash down and was talking to me again. The Dr came and said it was ok for her to go home, so the nurse finished the paperwork and we got ready and left to spend the night in our own beds.

As we were leaving the ward, literally just about to go through the door, Lucy's consultant was just coming in and he saw Lucy and said 'no, no, no' My heart sank, I thought he meant he wanted her to stay in. He took off her coat and then the collar and carefully straightened her neck before putting the collar back on. Her neck flopped again. He said 'the xrays were good, her bones are straight, but they will come out of place again if she can't keep her neck straight. The collar she has is not strong enough to hold her neck straight, and Lucy's tendons are not strong enough. I'm not sure what is going to happen, but we have to keep telling her to straighten up and keep our fingers crossed that we can buld up strength in her neck to hold her head up again. She can't start physio for two weeks as it's too risky, so it's going to be down to us and Lucy to try and keep her neck in place.

We have been referred to a rhuematologist for Lucy's hypermobility. I want to know if it's her loose tendons that caused the slipped discs in the first place. I also want to know if it can be prevented from happening again. My biggest fear now is that it can't be prevented and Lucy has what is known as cranial instability...i.e. her neck isn't strong enough to hold her head. Only time, and the doctors, will be able to tell.

Is it ironic that the hospital uses zebra wristbands?

12 weeks, but still one more to go!

Well Lucy reached the 12 week mark of halo wearing but she's not having it taken off until next Monday. The good news is, this is definite, she had the first theatre spot booked for Monday morning.

Apparently, taking off the halo is not as bad as putting it on, phew. However, it is a long and uncomfortable process and in the case of children they prefer to do under a general anaesthetic. Lucy is fine with this, she doesn't like having a general anaesthetic, but who does? She is happy, however, that she will wake up without the halo. We are all really looking forward to it coming off. I'm looking forward to a cuddle with my girl.

We've just finished a week of half term here. This means Lucy has had her brother and sister around to keep her company. We tried to get out of the house and do some fun stuff, but we were limited. First up was a tript to the cinema on Saturday morning. We were there for the first showing at 10am and there were only three other families in the theatre. We watched Monsters University and all really enjoyed it. I wanted to go home for lunch, I do feel uncomfortable eating out with Lucy. Her dad says I'm being stupid, but in reality it can't be nice if you have to sit and eat your food opposite a child with a halo screwed into her skull, can it? I just remember my feelings when I first saw her in it, I felt sick. We can't forget that we are used to seeing it and it doesn't bother us anymore, for others it's more distressing.

I didn't win my argument and we went to Mc Donalds. We did, however, manage to find a quiet table right at the back of the restaurant. Yesterday we all had lunch in the hospital restaurant, I felt much more comfortable there!

Then on Tuesday we went to Toys R Us. This is a trip I've been promising the kids for a long time. They have been missing out on sweets and treats and saving up the money for a special treat. They managed to save £25 so I made it up to £45 so they could have £15 each. I was a little worried because there is so much in Toys R Us, and such a lot of expensive stuff. I really thought I'd have trouble on my hands as they rushed around the shop wanting everything in sight. It wasn't like that though, they were really good. The girls both wanted My Little Pony toys and Lucy really wanted the wedding castle. It came with two ponies, so I suggested that I bought it between them as it was £30. They agreed and were really happy with the idea.

We had to get to the shops by bus and again we had lots of stares, but also plenty of questions. I really prefer it when people ask what's wrong with her instead of just staring. Of course, after three months it's getting a little tiring explaining it over and over, but I'm still glad that we've been asked.

We didn't get to go out again. Lucy does find it really tiring, and we end up having very disturbed nights as her body catches up with the exercise she has taken. Thank heavens for Junior Ibuprofen and wheat bags, it's the best way to stop her pain.

She's had a lot of pain in her neck too which has been very worrying. We even had an impromptu visit to the hospital at one point when her screw came loose and I found blood in her hair. It was ok though, soon sorted. The pain seems to have eased in the last week though, so fingers crossed everything will be ok when the halo is taken off.

Just one more week to go...YAY!!

The End is Nigh, But is the Future Bright?

Last week I took Lucy to the hospital for a CT scan. Since having the halo she has had x-rays but this was her first CT scan. I was told three weeks previously that Lucy would have a scan at eight weeks and if it was fine they would remove the halo.
Well, Lucy had her scan at around nine and half weeks and we didn't hear anything from the hospital. Then over the weekend we noticed one of the pins was really loose and Lucy was crying because it hurt her. The next day I noticed blood around the point. So Today, without warning, I turned up at the hospital. We were seen straight away but because Lucy was her bright little cheerful self she made me look like some neurotic stressy mother.
That's the thing with Lucy, she's almost always bright and cheeful, she takes everything in her stride. Don't get me wrong, she does have meltdowns and we really know about it when she does, but they don't happen often and most of the time she's just lovely. You can watch her without her knowing and see her grimace in pain, but ask her if she's ok she'll smile and say "I'm fine" so when she does say she's hurting we know to take her seriously.
So the Doctor today asked her when and where it hurt and she replied, on this side (pointing to the left) and when I lie down on this side. The Doctor replied, "well, don't lie down on that side then"

He checked over her points and said they all looked fine. He found dried blood in her hair and said that was normal. He asked how long it had been since the halo had been tightened and I said more than three weeks, he said she'll be ok for another two then.

Then he looked at her scans and xrays. He said there had been some improvement during the last month, but there was still rotation noticable in the atlanto occipital joint, and there was still a slight bend. Therefore he suggested leaving the halo for another two weeks and then see about taking it off. So an appointment was made for two weeks time.

I came home and told Lucy's dad what had happened. I was confused because I was under the impression that the halo was there to keep her neck perfectly straight while it healed. Lucy's dad agreed because he'd been told by another consultant that it was there like a brace to heal a broken bone, to keep her neck in the same position. This contradicts what the Doctor said today about there being improvement in the position over the last month. How would the position improve if it was meant to be held in place? However, I do know that the halo is a traction brace (it actually says so on the back of the vest) so maybe it is stretching her neck straighter? Which Doctor is right? Which should we trust? Can we trust anyone anymore?

I have a plan. I am going to write down all my questions and concerns and when we take Lucy back to the hospital on 25th February I'm going to make sure the Doctor that sees us hears them all. Hopefully, he will have some answers, because I have a feeling I'm going to need them.

In the meantime I am praying for my little girl. I know from the scan pictures I saw today that she is still not healed. My hope has been drained. The Doctor may have been fobbing me off saying that it will improve over the next two weeks, I can only hope that he was telling the truth, but in my heart the hope is lost. I've been saying for a long time that her neck was still not straight, but Dad believes it's because they over compensated for the bend. I can still feel that lump in the back of her neck, the bone that is not where it should be. I keep telling myself I'm imagining it, I'm being negative, I'm a neurotic mother, anything. Will I have to accept that she is much better but not perfect? I think I will, so long as she is safe and free from pain.

The Importance of Keeping The Points Clean!

It's been seven weeks now since Lucy had her halo fitted. Before we left the hospital the nurse showed me how to clean the points, or the wounds where the screws enter the skin. It is a fairly simple procedure, we have to clean each set of points with one clean piece of cloth and then dry it with another. At first we were given some cleansing solution, but when that run out we were told to use sterilised water instead. When the little cloths ran out we used cotton wool pads. The points need to be cleaned daily.

I have to confess, the past week or so I've not cleaned them daily. Not a good idea. Just before Lucy's bedtime yesterday she told me she could feel something on one of the points. I took a look but it was hard to see because it was one of the back ones which is covered by hair. So I cleaned it and found it was covered in dried blood and gunk. Of course I cleaned the rest of her points too. Then this morning when she got up, one of the points on her forhead was oozing gunk. So now I'm being extra vigilant in keeping them clean and she will have to go the hospital if it doesn't stop in the next 24 hours.

This morning I gave her a bath.
I use a black bag and wrap it around the vest, tucking it in at the neck and sides and finally rolling it up under the vest at the bottom. Then I cover her shoulders with a waterproof cape that I use for protection when dying my hair. She sits on a small seat in a few inches of bath water and I was her down, well the bits of her I can actually see. Then I wash her hair by pouring water from a cup. The shower would be too powerful and we might get the vest wet. She cannot hold her head back with the halo on, so I have to be careful. We use baby shampoo on her hair, not ideal because it really is for babies and not much use at all for getting an eight year olds long locks clean. The hospital suggested baby shampoo, but I'm thinking I might try some Simple shampoo instead, something really mild and gentle but actually meant for washing hair, not baby fluff.

Lucy likes to suck on a flannel while I wash her. This is because she gets some sensory comfort from it and it distracts her from my washing. It doesn't hurt her washing her hair, but it can be uncomfortable and feel strange. It's like when she was a baby and hated having her hair washed, I would give her a flannel to suck on then.

After her bath I have to make sure that both her and the halo frame and vest are completely dry. I can use a hairdryer so long as it doesn't get to hot. I was quite happy that her points were really clean afterwards, although her forehead needed a little attention to get clean while in the bath. I'd really hate for her to get this far and end up with an infection.

We've still not been given an appointment for her CT scan yet, I hate waiting on the hospital to call, although I have to say the radiology department are usually pretty good.

The pain in her groin is still there, but it comes and goes and doesn't seem to be bothering her too much. She doesn't seem to be getting many headaches now either which is good. She can also get out of bed by herself now, she just wriggles her way to the edge and lowers her legs with the momentum giving her the strength and balance to lift her upper body up.

two of the points

Moving Forward

We had another hospital appointment today. It's amazing how quickly you become familiar with a hospital, well I say quickly, we've been going there for nearly six months now! Lucy has her appointments on the ward where she stayed, now as soon as we go in the nurses and helpers all know who she is.

Today we saw one of our favourite consultants. I know you shouldn't have favourites, they all do a very important job. However, there is always one that seems to listen more, take more interest and remember things better. This doctor has promised to get us a referral to a rhuematologist so we can find out what type of hypermobility she has and get a proper diagnosis. I know that in the long term the actual diagnosis is not relevent, but it will give us some answers and allow us to find the right support groups. There is no cure, no real treatment, all we can do is manage the symptoms. Of course, with a diagnosis it will mean that if Lucy has problems in the future the doctors will know where to begin. It took a long time for them to take us seriously this time, it was as if they didn't really believe that Lucy had anything but a crick in her neck at first.

Today's appointment went well. There was not much tightening to be done which pleased Lucy. She has been complaining for a couple of days of a pain in her groin area. She told the doctor and he examined her. I didn't think he would because I thought the pain was nothing to do with her neck. However, it turns out that it's possible for her lymph nodes to swell, which could be connected to the lymph nodes in her neck. She could also have pain there because of the restriction of the vest. People see the halo and think that it looks uncomfortable, but the vest is just as bad. It is fixed tight around the abdomen and can be tight under armpits too. If it gets too bad then the doctor (and only the doctor) can release it a little. Anyway, Lucy is ok at the moment, we just need to keep an eye on her and get in touch with the hospital if it gets worse, or doesn't get any better.

people don't realise that the vest is uncomfortable too.

Next step is a CT scan in a couple of weeks time. Then if all is well they will take away the halo. I asked about the procedure for taking the halo off. Normally, for adults they just take it off with a topical anaesthetic, but it does take a long time and can be distressing. For children, they prefer to give them a general anaesthetic. So Lucy will go to sleep and wake up halo free. We can't wait now.