Sunday, 28 December 2014

Christmas 2014

Last Christmas Lucy had her manipulation early December and was in her first Halo for Christmas. We had hospital appointments every week, including Boxing Day where she had to have a scan.

This year was so different. Lucy was back at school, even though it's only part time at least she was able to take part in the Christmas music concert where she was on the stage with her class playing the ukulele. She decided against going to the school Christmas party because she was afraid that she may get hurt if the kids became a little rowdy.

I treated her to a lovely Classical Christmas concert at Symphony Hall on December 20th. She was great during the first half, but during the interval she spotted the ice cream lady. At £5 each for a small tub I couldn't let her have any (there were four of us and I'd left my card at home so only had what little cash I had in my purse, which I was saving for Mc Donalds afterwards) The lack of ice-cream brought on a sulk, and moan because my poor girl was STARVING! (It was only 3.30pm and she'd had a huge lunch!)

She soon got back into singing along with the Christmas Carols. I think maybe the whole concert was a little too long for her though, because by the end she was cramped up and her knees and ankles where hurting.

Then on 23rd December we went to see the play, The Tiger Who Came to Tea at the Town Hall. Again she was a little moody, but she was fine during the show, she even managed a dance and sing along.

Christmas Eve she went straight to sleep. I think if her sister hadn't been so tired she fell asleep as soon as her head hit the pillow, then Lucy may have kept her awake talking for a while. She didn't wake her though and was soon sleeping soundly herself. Right up until 5.30am!

She loved opening her presents, but as soon as she was done she was on the PC playing Elsword, her latest game addiction. She has been awkward to buy for this year, no Christmas list, no yelling at adverts 'Can I have that' no telling Father Christmas what she was a secret even from the big man himself. There was one Pokemon toy she had shown an interest in one day when we were shopping, I went back to buy it.

During the day she played with the Pokemon toy with her big brother for about 1/2 hour and Jenga with her sister for about 20 mins. She played with her little brother's playdough for a little while and she read one of her new books for around an hour. Everything else is still untouched, even her selection boxes and chocolate snowman.

Now, she is waiting to go back to school because she is bored!

Saturday, 6 December 2014


Lucy has had a migraine before, and I am a regular sufferer of migraines so we are pretty used to them in our house. This week, however, has been a little scary to say the least.

First up, Lucy's little brother was poorly. Then Lucy got sick too. She was starting to feel better when she had a really bad night complaining of ear ache. In the morning she didn't want to move so I let her lie on the sofa with a blanket all day and she just drifted in and out of sleep. I kept her topped up with fluids and regular doses of Calpol.

She ate little throughout the day and was very weak by bedtime. I figured that as she had slept for most of the day she would be awake all night, but she wasn't. She woke up early though, about 4.30am and sent her sister in to fetch me. (she still has trouble getting out of bed, particularly if she's not feeling well)

She was hot and complaining of headache. I took her temperature but it was 37.5 so high but not too high. I gave her Calpol and a my cold band for her forehead. She went back to sleep on the sofa. It was obvious to me that she had a migraine, but it didn't seem to be improving so I started to worry. I gave her one of those migraine pads but she said it hurt. I think maybe her wounds, although healed, may be a little too sensitive still.

As she was so poorly I began to worry that maybe it was meningitis. It's always wise to be cautious. So I started the checklist. She had been sick, but had recovered. She was hot but not feverish, her hands and feet were not cold. She was drowsy, had barely been awake in 36 hours. She was confused and irritable, she had a pounding headache, she was sensitive to bright lights (but she is often anyway) She did not have any type of rash or blotchy skin.

Then came the neck test...can you put your chin to your neck...Lucy can't do that anyway since the fixation. Does your neck feel stiff...mmm, yes all the time, is there any pain in your neck..yes, all the time. This is one of the first things you check when testing for meningitis and I can't do this with Lucy.

So, I went with my gut instincts and decided that because she wasn't feverish then it wasn't meningitis. Stop panicking and just keep caring for her.

I trusted my instincts but still had moments of doubt, maybe I should have taken her to A&E. There was another sleepless night ahead for me while I checked on her every hour, taking her temperature each time and being prepared to change my instincts at any sign of fever. She slept on like a baby.

Then she woke up and said she felt better. She has been a bit sensitive all day, just like I am when I am recovering from a migraine. It was a migraine, a really bad one. I know how horrible they are and really feel for her....but thank heaven my instincts were right.

Sunday, 30 November 2014

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.

Saturday, 8 November 2014

Back to School

Today, after being off sick for eleven months, Lucy went back to school.

She's now in year five. She only spent eight weeks in year four. She was already poorly with her neck when she started, her problems had started at the beginning of the summer holidays and she'd already had one spell in hospital and was visiting weekly for physio therapy.

Then early December 2013 she went into hospital again for a manipulation and was first fitted with the dreaded halo. 

She was provided with a home tutor, who has been lovely, and has kept up with the same work her former classmates were doing.

The halo was removed in March, but it hadn't worked.

In June Lucy was given surgery and her neck is now held together with metal plates and pins, and a bone graft. Again, the halo returned.

Just before her birthday in August the halo was removed again and we had our little girl back. She can now hold up her head by herself, although she has lost fifty percent of movement in it.

After talking with the school we came up with a plan to ease her back in gently, so she's going three mornings this week and if that goes ok she'll do five mornings next week. When she is ready she will go back full time.

This morning was very emotional. She was really scared and cried so much. None of my children have ever cried to go to school, even when they first started, so it was also really difficult for me. She still went though. We met a little girl who remembered her in the playground and then her teacher and everyone was really nice. When I picked her up just before lunch she was a lot happier.

I am so very very proud of my little girl. She didn't have to go back, she could have stayed with her home tutor until next year at least. She was very brave. She has always been brave. She's a true Star!

Sunday, 26 October 2014

Back To School

At the moment it is half term, but after the holiday Lucy will be going back to school!

This is big, she's not been to school now for eleven months. Even then she'd only been at her new school for eight weeks. She has been home tutored by a qualified teacher (who is absolutely lovely) since February of this year.

We deliberated for a long while about sending her back to school. We considered changing schools, I even tried a couple of special needs schools to see if they would take her, but she was turned down. Academically she's not too bad. She can keep up with her peers in most subjects. It's her behavioral and physical difficulties which are a problem.

I had even considered moving her to a different school. Her current one is not the best, they have a lot of troublesome pupils, and the school is a fair distance to walk. However, they are trying to improve the school and I have already seen it change for the better in the last year while Lucy's siblings have been attending. Also, we now have a car, and although I prefer to walk to school at least it means we can use the car on difficult days, which probably means every day where Lucy is concerned.

The school are being really good. She only has three days to attend in the first week and I will be picking her up at lunchtime. She will then continue to attend every morning until she feels able to stay for school dinner. Then, only when she is ready, she will go back full time. They are arranging all the extra support she will need while in school, so fingers crossed that will all be in place quickly after her return.

Lucy hasn't shown much concern over returning although that may change nearer the time. Her sister is really excited that they will be at school together again. Now that her sister has moved up into Key Stage 2 they will be sharing the same playground at playtime and lunchtime too. They are really close so hopefully this will help. I can't believe I even considered splitting them up into different schools.

I still have lots of concerns but I believe that school is the best place for her. She currently has no friends and all and only ever plays with her sister. Maybe that will change when she goes back to school. I live in hope.

Now, I have the task of finding school uniform for her.

Saturday, 27 September 2014

Grisel's Syndrome

Going back to the beginning of Lucy's neck problem I remember her waking with a sore throat and neck one morning, it became better throughout the day. Then a day later it was back again. I took her to the GP who diagnosed tonsilitis.
I wasn't fully happy with the diagnosis at the time because it was obvious that her neck was also bent, I just felt it was more. So I took her to A&E. They said it was torticollis and it would get better in a couple of days. It didn't.
Two weeks and a few more visits to A&E later and she was finally admitted after a CT scan had shown a rotary subluxation of the atlanto occipital joint. 

The consultant was adamant that she had been in an accident and that the subluxation was traumatic. I knew, however, that she hadn't and insisted that it was non-traumatic. Much later I had heard about Grizel's Syndrome and had a conversation by e-mail with an American Neurosurgeon who had suggested Grizel's Syndrome when I'd told him Lucy's story. 

Grizel's syndrome is a rare condition which usually affects children. It occurs more in children who already have lax ligaments, such as those with hypermobility syndrome. It is the subluxation of the atlanto axial joint after an infection such as tonsilitis, Group B streptococuss or similar ear, nose and throat infections. It can also occur after sugery for ENT. The symptoms are torticollis, cervical pain and symptoms related to infection. 

Lucy started with a subluxation of the atlanto occipital joint and was treated with muscle relaxants and soft collar, followed by physio therapy. Three months down the line there was no improvement and in fact the C1 and C2 had subluxed as well. Evidence shows that early treatment and intervention can prevent the situation from getting worse. 

Lucy was eventually given a manipulation and a traction collar, halo, was applied for three months (13 weeks). This did not work. As soon as the halo was removed the subluxation returned and it was discovered that a little piece of the C1 was missing. 

Ten months since the first signs of torticollis Lucy was was given a further manipulation followed by a fixation by Harm's method and the halo re-applied. 

It's been almost fourteen months now and Lucy is free from the halo and soft collar and appears relatively straight again. We will find out next week if her treatment has finally worked.

Her consultant still believes that her original subluxation was traumatic. 

From: Case Reports in Otolaryngology
Volume 2014 (2014), Article ID 703021

In conclusion, diagnosis of the Grisel’s syndrome is largely based on suspicion of the patient who has recently underwent surgery or history of infection in head and neck region. Early diagnosis of the atlantoaxial subluxation is required for careful clinical and radiological evaluation and consultation with relevant branches. Early intervention is critical for prognosis; conversely, delay in diagnosis can be dramatic. Therefore, clinicians should be aware of acute nontraumatic torticollis after recently applying the head and neck surgery 

Sunday, 24 August 2014

Almost one week later

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

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

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

Pin wounds on the forehead

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

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

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

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

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

Wednesday, 20 August 2014


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

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

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

We took the collar off and Lucy exclaimed

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

Truly an emotional day.

Tuesday, 12 August 2014

A Date At Last.

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

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

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

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

If she is fixed.

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

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

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

Friday, 18 July 2014

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.

Sunday, 13 July 2014

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.

Wednesday, 2 July 2014

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. 

Monday, 23 June 2014

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!

Thursday, 12 June 2014

Now it's Time to Recover

Lucy had her second operation yesterday morning. She went down to theatre about 11.30am and was asleep by 12, we went straight to her as she came out of theatre at 6.15p.m. Waiting for your child while in theatre is the most surreal experience, you go through a plethora of emotions. Then when they take longer to come back than you expected, we were told four hours, you start worrying, really worrying.

We were told that they were performing a fixation of the C1 and C2, this means two small screws in either side and a small titanium plate joining them up to keep them perfectly straight. This means that she won't be able to turn her neck as much as before. I'm sure she will cope, she hasn't been able to turn her neck for the last ten months anyway. We were also told that she might need a further plate on the occipital joint at the base of her skull which means that she wouldn't have been able to look up or down either. Again, she hasn't been able to look up or down for the past 10 months. However, once in there they decided that they wouldn't need the plate on the occipital joint. They were not happy with the C1 on the left side, the bone that had deteriorated, so they performed a bone graft from her skull and added it to the C1 to give it more strength.

We had been told that if they were happy with the fixation then she would not need the halo back on, however, because they had to do the bone graft she needs the halo back on until it fuses, so it will be around six to eight weeks before it comes off. Such a shame, we'd have liked to have been rid of it.

Lucy was back on the ward by 7 p.m. and she was really sleepy from the anaesthetic and the morphine. She had a drip for fluids and a catheter, so no need ot move or bother her, she just had to sleep it off. And sleep she did, all night and all day today. She did wake for short periods, but struggled to stay awake and went straight back to sleep. She woke in the night during obs. and wanted to be turned over. She became quite distressed so the nurse pushed her morphine button. She had morphine constantly pumped into her but she also had a button to give her a little extra if in pain.

She got a bit panicky when they came to take her blood. She has developed a real hatred of needles. Then she was distressed when taken for a CT scan but only because they had to move her from her bed to a trolly and back again. In between being moved she was ok. She says she is not in pain, but I think that proves that she is hurting.

Tomorrow, she should be more alert and we will need to move her, at least get her sitting up. She also has to have the halo vest altered because it's too high up.

Her stitches will be removed in ten days time.

Overall, it all went well. They didn't hit any problems other than her suffering a big loss of blood and having to have quite a hefty transfusion.

We have to hope now that it has all been worthwhile and her head stays upright. She will never be able to move her neck normally, but at least she will be safe, comfortable and hopefully pain free.

Monday, 9 June 2014

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.

Friday, 6 June 2014

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.

Sunday, 25 May 2014

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.

Tuesday, 29 April 2014

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.

Wednesday, 23 April 2014

A Night At the Theatre

Last night I too the girls to see a live performance of Jaqueline Wilson's Hetty Feather.
We've been to live shows before and the girls have loved it. So far we've seen The Gruffalo's Child, Room on the Broom, What the Ladybird Heard and Andy and Mike's Tick Tock Time Machine. Lucy has coped really well, she doesn't mind being around lots of people, she doesn't mind loud noises for a limited amount of time, she enjoys the shows and interacts well. The only time I have had problems with her it wasn't a live show but a 4D movie...which included smells..that's her weak point, she doesn't like strong smells.

So we went along to watch Hetty Feather just like a normal family. I was a little worried because we were going to the evening show which finished past the girls bedtime. Leila gets tired and Lucy doesn't like her bedtime routine changed. The show was also just over two hours long, which seemed a long time to expect Lucy to sit and watch. She can watch a whole movie, but just about and most movies are only about an hour and a half. The extra forty five minutes of this show were going to make a difference.

Well, she didn't do too badly. She really enjoyed the show and was completely attentive from beginning to end.

She breaks the mould of what people expect from autistic children when it comes to empathy because she cried at all the sad parts. Well, I say cried, she sobbed, I had to sit hugging her as she cried her little heart out, I had to keep reassuring her that it would be a happy ending. It was a happy ending, and she cried at that too. I have seen her cry at things before, but it's usually involved animals. She did cry with happiness at one of the High School Musical films the first time she watched it. So, I'd say she was empathetic, very much so. Even if she has little control over how she expresses herself, at least she is expressing the correct emotions at the right times.

When the show stopped for the interval she knew it was past bedtime and insisted that we went home right then. I told her that it would be a shame to miss the second half and we wouldn't know what happened. She didn't seem to care. So I told her that if we went home right then, we would still be late for bed, so why not watch the rest of the show anyway. She wasn't happy with that but did see my point.
Finally, I persuaded her to stay if I bought her an ice-cream. This made her happy. Just like a normal child.

As soon as the second half started she was totally engrossed again.

They were both really tired but completely fired up when the show finished. As I said before, it had been a happy ending and Lucy had cried, probably a little too much, but she said she was really happy. Then we got up to leave and before we had left the auditorium she started talking about Pokemon. It was like we had not been to see the show, she didn't want to speak about it. All the way home she talked non-stop about Pokemon, Mario and Sonic the Hedgehog. So much so that my head spinned. Leila was trying to talk about the show and what she had enjoyed, but she wouldn't listen and didn't want to take part in the conversation. In fact, even when I spoke to Leila, Lucy just carried on talking about Pokemon et al. On the way home Leila sat with my niece who had come with us and ended up falling asleep on her after they had chatted about their favourite bits of the show. Normal.
Lucy talked all the way home, not mentioning the show at all. It was as if she couldn't think about it because it had affected her so much, so she talked about her favourite things instead. Not so normal.

At home we still had to go throught the normal bedtime routines even though we were nearly three hours late for bed. Eventually, she stopped talking about Pokemon, Mario and Sonic and went to sleep.

Today she has talked about the show, she remembers it all and told us her favourite bits. One part was when Hetty gets a spanking. We don't do physical punishment in this house so you'd think she'd be shocked, but the scene was performed comically and the very last spank was performed in really slow motion, which was quite funny to see being done live. This scene has been re-enacted by Lucy over and over and over and probably will be for days. (When I say re-enacted, there is no spanking involved, she just copies the faces and movements of the actors and they were when the last spank was performed.)

To us, she is normal, quirky maybe, but she's our girl and she's always been the same. The routines, the repetiveness, the randomness of her conversation topics, the incessent talking about what she wants to talk about even when no-one is listening to her, the lack of control over her emotions, to us, all normal, all Lucy.

She managed to sit through a two hour plus show and pay attention the whole time, she showed emotion at the right times, she stayed up past bedtime (although, not completely without complaint) and she enjoyed the evening. All normal, all typical for a child of her age.

People have pre-conceptions about autism, they often think that children can't sit still, always mis-behave, can't control themselves and so on. In fact, on the outside, a lot of autistic children can look just like other children, and behave just like other children. No-one on the bus home would have thought of Lucy as strange just because she was talking about Pokemon, they didn't know she'd be talking about them incessently for at least an hour, they didn't know that we'd just been to see a fantastic show and any other child would be wanting to talk about that, they didn't know that a lot of what she was saying would be repeated over and over and over. To them she was a normal, excited child on their way home to bed.

Saturday, 19 April 2014

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.

Monday, 7 April 2014

Dear Mr S.

I am writing this letter to my daughter's paedatric neurosurgeon. I felt the need to write it down and share. Whether I actually send the letter to him I don't know yet.

Dear Mr S.

I called your office today to ask your secretary to give you a little reminder that you promised to call me last week. I know you are an incredibly busy man, but my daughter is eight years old and has been suffering for more than eight months and is very much in need of your care and attention. Also, I am a very stressed out mother who has barely slept for the last week.

Constantly on my mind is how my daughter's condition has become so bad. I really can't help thinking that if she had been treated properly and promptly in the beginning we would not now be facing surgery. For two weeks I brought her into the Accident and Emergency Department and was constantly told it was nothing to worry about and it would fix it self. It didn't and she was offered a CT scan of her neck. The scan showed a subluxation of the atlanto occipital joint and she was admitted to your ward.

For a week she was treated with muscle relaxants while we waited for a traction bed for her. The bed arrived but the decision was made not to go ahead with traction and to try physio therapy instead.

I was happy to go along with this. Of course, the less distress to my daughter the better and if it could be put right by physio therapy then I was happy to bring her to the hospital twice a week.

It soon became apparent, however, that the physio therapy was not working. Her nurse was really concerned but had to push for another CT scan. After the scan the physio therapy was stopped, we were not told why, but we were then left in limbo. For weeks I waited for a call to come and see you and find out what was going on, what the next step was going to be. I was told that you were busy, that there were no appointments in your clinic, that I had to wait. 

I became impatient and called the Patient Liason team at the hospital who finally managed to get me a clinic appointment. First my girl had to have another CT scan. At the appointment we were told she was going to be admitted for a manipulation as the subluxation had become worse and it needing correcting. So my daughter was taken to theatre and the manipulation performed and a halo traction brace fitted.

She wore the halo for thirteen weeks and on removal we believed that she would now be fixed. This was not the case, her neck began to slip back the very same day. At her halo removal check it was obvious that something was wrong so I was told she would need another CT scan. After the scan we were left in limbo again, not knowing what was going to happen next. I called your secretary who then managed to fit me in for an appointment.
The scan showed that a piece of my daughter's bone had deteriorated and it was unlikely that it would hold her neck up without further intervention. 

Then, well, we are still waiting to hear from you. 

The questions going around in my mind are, how, when and why has her bone deteriorated? Was it in the beginning when her neck was so twisted the bones were grinding against each other? Did it happen while she was having physio therapy trying to make the bones go back into place? Maybe it happened during the manipulation? Why has it only just been detected, did it happen very recently? My daughter has had many scans and xrays (I have the dates and times of every one written down) why wasn't it noticed sooner? 

More importantly, what are you going to do for her now, and how much longer will we be waiting.

Yours Sincerely,

A Distressed Mum of a Beautiful, Brave Little Girl who deserves to be treated better.

This post will be duplicated on my other blog Raisiebay.

Tuesday, 1 April 2014

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:

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?

Thursday, 27 March 2014

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.

Tuesday, 18 March 2014

Cock Robin

We had a hospital appointment today to see how Lucy was getting on after having her halo removed.
The Doctor straight away noticed that her neck was not straight. He asked several times when the halo was removed, I'm not sure why, it was two weeks ago, it seemed like he didn't believe me. He said that she had a xray on 3rd March and her neck was straight. I said 'yes, that was two weeks ago, when she had her halo removed.'

He took off her collar and asked her to look to the left, which she did (and grimaced). The he asked her to look to the right, which she couldn't do (and grimaced even more). He asked her if she was in pain, she replied 'a little bit' She hates admitting to being in pain for some reason.

Then he said he would need to speak to her consultant, but was certain that she needed a scan. So we waited around for a while. Then he got back to us and said that they couldn't arrange a scan until tomorrow so could we come back. On the way home I had a call to say we had to come in Thursday instead.

So, still no answers. We really don't know what is going on.

I have two theories.

1. The muscles are too week to hold her head up straight and that's what is making her lean. Perhaps if they can strengthen her muscles then she will be recovered.
I worry that maybe her muscles were lax in the first time and that's why the bones subluxed. In which case there may not be a way to strengthen them. I'm not sure what the answer would be if that was the case.

2. Her joints are starting to sublux again. In which case then they will need to find another way to fix her, if that's possible. It also means the last three months of enduring the halo have all been for nothing!
It also brings up the question, why are her joints subluxing all the time?

One thing that the consultant has mentioned in the past is fusion. The joints in her neck would be screwed into place to stop them from moving.

I hope it doesn't come to that, but I do want her fixed.

Thursday, 13 March 2014

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.

Sunday, 9 March 2014

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.

Tuesday, 4 March 2014

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?

Wednesday, 26 February 2014

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!!

Monday, 10 February 2014

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.

Tuesday, 28 January 2014

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?

A Day in the Life

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