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.

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.

Three Weeks On

It's been three weeks since Lucy's second operation and she seems to be coping well. We still have the anaemia, the consultant told me to take her to the GP for regular blood tests and some iron supplement. She won't take the iron it makes her really sick, and it doesn't help her constipation. So we are going with a homeopathic remedy and lots of iron rich food, her current favourites are broccolli and Heinz Spaghetti Hoops (one of your five a day with extra iron! so the advert goes, and she saw it so she'd rather have Hoops every day!) We'll see how she goes.

She's getting a fair bit of pain in her neck, but it's still early days yet. There was some major stuff going on in there when they operated and it's going to take some time to heal. The scars are nice and clean and healing well, and her halo points are fine. We are really lucky that she manages to avoid infection. 

She gets tired a lot, although she's become more awkward at bedtime too. I think maybe she's uncomfortable and can't sleep properly. The heat lately hasn't been helping much, she's wearing a sheepskin vest all the time! Of course the anaemia can be a cause of tiredness too and can also cause itching, which she is getting a lot (And not just under the sheepskin vest)

I think that considering she's just three weeks post op. she is doing really well.

It's also nice that she now has a real nice team looking after her at the hospital. I really don't like to complain because I know they all do such a good job, but the last team that cared for her constantly made me feel as though she was a burden. If I called them because I was worried about something I was abruptly brushed off. Appointments were rushed and often I had to pester them for the next appointment because they hadn't made one for her. They didn't seem to take any of my fears or worries seriously and I often felt that had she had a brain tumor or something then they might be a little more interested in her, it was like a broken neck wasn't enough. 

Her new team are so much more considerate. The appointments are made regularly and we are never left waiting. When we go in they take their time to make sure she is really is ok and show that they are concerned. They ask me lots of questions and I never feel like I'm pestering them. They are all considerate from the highest consultant to the nurses on the team. I don't know why Lucy was switched from her old consultant team but I'm so glad that she was. 

healing wounds, this is the one where they took the bone graft. 

White as a Ghost

I have been worried about how pale Lucy is since her operation. She is doing fine and even went to play out in the sunshine in the garden a couple of days ago when Daddy put up the swing. However, she is still really pale and gaunt.
I always check on her in the night, shortly after she has gone to bed, then again when I go to bed, and often when I have to get up to visit the bathroom, or someone else wakes me up.
Last night it was her sister that woke me and asked me to tuck her back into bed. I walked into the room and it felt like my heart was in my throat. Lucy was lying on her back, mouth slightly open, white as a ghost and eyes half open. To be honest, she does sleep a lot like this..i.e. mouth and eyes a little open, but it was just a shock seeing her so pale as well. Of course, you can't see her breathing easily either because of the halo vest covering her chest. I did however notice a small fall and rise of her tummy.
I had to touch her, just to see, just to make sure.
It was such a relief to feel her warmth.
She stirred in her sleep and asked me to turn her over, so I helped her on her side and she promptly started snoring.
If only she had been snoring when I walked in the room.

Tomorrow she goes to have the halo checked and the stitches in her head and neck taken out. She is now terrified of going to hospital. After all this time, she was always perfectly fine with going. I guess last week was just too traumatic for her and she doesn't want to go through anything like that again.
I don't want her to go through anything like that again!

One Down, One to Go

The last three days have been a complete emotional roller coaster. First, Lucy's operations were moved to different dates, then they were postponed altogether, then yesterday afternoon we had a call saying it was all back on and could we bring her in immediately.

So we arrived on the ward and had a nice little cubicle, Bed no1. We had a fairly good night despite it being a very noisy ward. So many crying children, it's difficult to ignore them.

This morning Lucy was a little panicked. We had told her that she was having the halo back and she'd been ok with it. She was ok with it last time, she dealt with it much better than us! However, this morning she decided she didn't want it back and was distressed.

By the time we took her down to be anaethetised for theatre she was really upset. She screamed when given the canula, and gagged and sobbed as the anaesthetic was administered. It was very distressing.

The manipulation and halo application went really well and took nearly an hour shorter than last time. We could see why when she got back...four screws instead of eight? Also, her neck is not very straight. Still it's just a temporary measure until the next big operation.

On Wednesday she will go back to the theatre, hopefully she'll be keeping her canula in until then so no big needles. The will open her neck and attempt to screw her bones in place along with a metal plate. To create a better fusion they will also had some bone graft, taken from her thigh or her skull. She is going to be hurting afterwards for sure.

Once they have completed the fusion they will decide whether or not to keep the halo on for a while. She could be coming home in five to ten days after the operation depending on her recovery.

During the time leading up to operations you feel so anxious, so worried that something may go wrong and that you will be leaving the hospital without your child. You don't want to think that way, but you know it's a possibility and it hurts to even think about it. Then while your child is recovering on the ward another little patient loses their battle and your heart starts pounding and the pain feels so real even though you know it's not your child. Then shortly afterwards, yet another patient loses their battle. And you cry, you don't even know these children, but you know it could so easily have been your child and you feel the pain of the parents an family, you feel their loss.

Having a sick child is so emotionally draining.

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.

The Way Ahead

Today we had the long awaited call from the consultant at the hospital.
We were told that sometime in the next six weeks that lucy would be going into hospital for two procedures. He couldn't give us a specific time because he has to work out when he can fit her in for both procedures where she won't be in hospital for any longer than necessary and so that they can both be performed a week apart.
The first procedure will be another manipulation where her bones will be pushed back into position while under a general anaesthetic. Then she will be fitted with the halo again.
A week later they will open her up and insert a metal plate and tiny screws to keep the bones in position.

After the operations she will be wearing the halo for as long as necessary. Then we will see the end results. We already know that her neck will never be completely straight, and that she will have limited movement. How bad it will be we will have a long wait to see.

I can't say I'm not scared because I am, I'm terrified. I already know the implications of the manipulation and the halo as she's had these done before. That is scary enough. I don't yet know the implications of the fusion and I'm not looking forward to hearing about it. It sounds like she will be in theatre a long time.

At least we have some time now to mentally and practically prepare for her stay in hospital.

We have not yet heard from the paediatric rhuematologist she was referred to, and they probably won't be able to assess while she is in the halo, so I'm going to contact them and let them know what is happening. I already know that the communication system in the hospital is not that good.

Limbo Land Again

We are still waiting to hear what will happen next with Lucy. I called the hospital last week and they promised that someone would call be back, when they hadn't called back 10 days later I called them again. I was told that Lucy was being transferred to a new consultant and that they would call me back and let me know what was happening. I still haven't heard anything.
I don't know exactly what they mean, she could transferred to a new neurosurgeon or maybe they mean a different type of consultant, an orthopeadic doctor, or rheumatologist??? I really don't know. Maybe they mean she's being transferred to another hospital? I wish I did know. It seems crazy that she can be in such a fragile state and the hospital just don't seem to care. Or maybe they just don't know how to help her? Either way, it seems too much trouble for them to let me know what is going on.

On the bright side we have put it all aside this week and had some lovely days. We had a day out at the Nature Reserve which was lovely. The weather was fantastic and Lucy was feeling well. She managed to do a fair bit of walking as well. She couldn't join her siblings in the soft play area, it was too risky, and the playground was full so we couldn't risk her playing there either. It was hard saying no but she was gracious about it, especially when we promised her a treat in the shop before we left.

We had another day out in town where the girls had the opportunity to review some great new trainers which you can draw on. After the event we had a walk around town and again I had to say no when she wanted to play in the play tunnel and slide in The Entertainer. I really hate having to say no all the time.

So we went out twice safely, but then she has a fall in our own back garden. Thankfully, she didn't hurt her neck but she hurt her leg. She had a big scratch and a bruise on the top of her thigh. I was worried for a while because she said her leg hurt too much to move and I thought she'd done some serious damage. It did ease off though and she was able to walk ok the next day.

Another worry is her headaches. She's been getting them for a while, before her neck twisted. I took her to the GP who said she was having migraines and to just give her pain relief. I don't think they are bad enough to be migraines, I get them and they actually floor me, her headaches are not so bad but they are frequent.

I find myself constantly checking her pin wounds from the halo. They improved quickly after the removal but they don't seem to be getting any better. They are more like deep indents than wounds but they are still red and still noticeable. I wonder if they will put the pins in the same place when/if she has another halo put on. Or will she have new scars?

So here we reside in limbo land again. Trying to get on with our lives but constantly worrying about our little girl.

Not The Best News

Today we went to the hospital to get the results from Lucy's CT scan.
It wasn't good news. The bones have definitely slipped again, but much worse is that the bone has deteriorated quite a bit and no longer fits in with the rest of the spine so it will keep on slipping.

We have been told that Lucy will require an operation and possibly the halo will be returned.

Lucy's consultant will be discussing the CT scan with neurosurgeons at GOSH tomorrow and then will decide what the next step will be.

I don't have a picture of Lucy but I found this photo of scan which looks very similar. You can see the two bones at the top of the spine. One is square, the other is triangular. They should both be square. The one on the left of the picture has deteriorated changing the shape. This means the skull does not stay in position and tilts to the side.

photo credit: http://neuroradiologyonthenet.blogspot.co.uk/

A possible cause could be Rheumatoid Arthritis. Something I've suspected before.

I will be asking lots of questions, and pressing for our appointment with the rhuematologist.

It could be that the bone deteriorated because it was rubbing against the adjoining bones when they slipped out of place the first time. Will we ever know?

Six Days Post Halo Removal

I thought I'd give a little update on how Lucy is doing now her halo has been removed.
It feels a little strange, like we have gone back in time. Back to the beginning, when Lucy was first fitted with a collar, when she couldn't eat, sleep or move properly. She's been in so much pain this week it makes my heart bleed for her. Her neck muscles must be so weak, she can barely hold her head up in the collar. If I take it off she's in agony.

It's still early days yet though and I'm hoping and praying for improvement. Currently she can't get in or out of bed alone or turn over in the night. She can't lie down without help. She's having trouble swallowing and is barely eating or drinking. She has bad headaches and the pain in her neck has her grimacing constantly.

She's still not complaining much though. I'm giving her regular painkillers and asking her if she's ok. She told me tonight that it's best when she's in bed. I've given her a big plump pillow which is what the consultant recommended. It gives her neck extra support and she is comfortable....until she needs to turn over.

I gave her a bath. It was wonderful to not have to wrap her up in bin bags first. She could actually sit in the water, although she needed help getting in and out of the bath. I took off her collar to wash her hair but it hurt so much it was a very quick wash. Also, I was wary of her wounds so I had to use baby shampoo, and not rub very hard.

I haven't yet removed the plasters off her forehead wounds, she won't let me. The wounds on the back of her head are looking ok though, nice and clean. Just one is a little bigger than the others, this is the one that gave her the most trouble while the halo was on. She complains that they are sore and itchy, but I've not seen her scratch them. Fingers crossed they will heal quickly.

pin wounds

Today she had another bath. She was a little more relaxed than the first time. I took her collar off for a little longer and she didn't complain so much. I noticed that she is not moving her neck, to turn she moves her shoulders. This is understandable, she's not used her neck for three months, it's bound to take time to work again. A little more worrying was that her head is once again in the cock robin position. she is not holding it straight. I keep reminding her to sit up straight, and hold her head straight, but it must be so hard for her. I just hope that as her muscles get stronger she will be able to hold herself straight again.

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.

Sometimes the Road can be Rocky

Right from the beginning things have not been plain sailing with Lucy's neck problems. It took more than two weeks of regular A&E visits before they actually realised what the problem was and admitted her. She was sent home after a week with  the promise of a six week check up to see how she was doing and regular physio therapy. The physo therapy department were great and Lucy was seen every week at first and then twice a week when she didn't seem to be getting any better. The six weeks came and went and I tried to get her a follow up appointment with the consultant but to no avail. The physio thereapist contacted the consultant with her worries but still nothing. Then I contacted PALS the hospital patient liason support team and eventually, after twelve weeks, Lucy got her appointment...for a CT Scan. I was so fed up at this point my plan was to go for the scan then to go and sit on the ward until the consultant agreed to see us. However, I did not have to make a nuisance because the consultant turned up at the scan and then talked to us afterwards. That's when Lucy was admitted for the manipulation.

After another week in hospital Lucy was sent home with weekly appointments for the next four weeks. I had to call and make appointments for the next two weeks. Then at the last appointment I was told she would be sent for another CT scan and if that was ok then they would take her in and remove the halo. The CT scan was supposed to have been this week. Today I called radiology to ask why they hadn't sent her an appointment and was told that the instruction was to see her in six weeks!

So what were we supposed to do for the next six weeks with no appointments booked? The halo was supposed to be fitted for 8 to 12 weeks, it's been 8 weeks already, another 6 would take us to 14 weeks. Also, the screws are supposed to be checked and tightened every week. It's just like before, they've forgotten her again.

Last week we had some discharge from her points, it did stop so I didn't fuss. This week Lucy has been experiencing more pain than usual. I've already called the hospital and they promised to call back but didn't. I can't wait for PALS again, I will have to go to the hospital and make a nuisance of myself until she is seen. Why does it have to be like this? Why do they seem to have so little regard for an eight year old child?

We often get asked, how does she sleep?

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.

Hospital Appointment

Yesterday we went to the hospital for a halo check. It wasn't a good experience, two of the screws had come out, although they were still in the skin. Most of the screws needed tightening. Getting it all tightened up again was a distressing and painful experience for Lucy.

When you have a halo then you should have the screws checked weekly. We were not told this at the start. We were given weekly appointments and at the first one they were all tightened, but they were not that loose. At the second appointment they were tightened again but the third appointment was during the Christmas holiday and there was no-one available to tighten them. Then for some reason we were told not to attend the following week. So this week it had been nearly three weeks since they were last tightened and that's why they had got so bad.

I was told yesterday that I should have attended last week, which is exactly what I thought and did phone up to ask, but nothing was done and we missed an appointment which we shouldn't have missed. If you are reading this because you or your child have been fitted with a halo, I will advise you to make sure you get them checked weekly, it really is necessary.

As well as having to endure this horrible experience we were also given the news that the halo wouldn't be removed any time soon. When we had the chat with the consultant before the halo was fitted we were told that they are normally on for six weeks. As we are approaching our six weeks in a few days time I had built my hopes up that it would be removed soon. It was quite deflating being told that it would be at least another two weeks and possibly another six weeks. I really do want the best for Lucy, this has to work and I wouldn't want to jeopardise her recovery, but I just can't wait for it to be gone now.

While at the hospital we were asked to meet a family who's son was having a halo fitted tomorrow. I was happy to do this and answer their questions as well as give them a few tips on how to cope. This is my aim, to raise a little more awareness so people know what to expect.

Living With a Halo - part two

Another post taken from my other blog about how we are getting on with the halo.

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My Lucy 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 Lucy. 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 put 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.

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.
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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.