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Scoliosis testing in schools in UK

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Messages: 101 - 150 of 339
  • Message 101

    , in reply to message 98.

    Posted by suelucy94 (U13851571) on Wednesday, 1st July 2009

    You and me both! I am so in awe of Mr Tucker that l can't even remember properly what he looks like!!
    Will post soon
    Sue

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  • Message 102

    , in reply to message 100.

    Posted by christine (U10806837) on Wednesday, 1st July 2009

    Hi Tracy
    Good on Cam for his attitude towards school. This determination will put him in good stead for a quicker recovery. Sounds like his friends are a fantastic support, well done to them.
    Last year the BBC Your News programme filmed Emma, Megan and myself (I hate being on camera) after she wrote in with her scoliosis story and about her petition to get testing started in schools. The 3 minute film went well and got the point across and generated a lot of signatures for the petition. I know that in the past other people have tried with petitions to get scoliosis testing reinstated. If only the politicians got out there and met children like Cam, Lucy and Emma and saw what they had to go through or maybe if one of their children had scoliosis then they may change their minds about testing in schools. We can live in hope I suppose.
    Keep us posted with any updates. My thoughts are always with you. I know what you are going through but there is light at the end of this tunnel.
    Take care.
    Christine x

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  • Message 103

    , in reply to message 102.

    Posted by madmum2816 (U13850009) on Friday, 3rd July 2009

    Hi Christine
    I am amazed at the positive atitude of all the youngsters who have scoliosis. I wish I had seen your news item, but I have signed your petition and urged others to do the same.
    One day we will get something done to have scoliosis testing in schools. I find I look at young peoples backs a lot now!
    Thank you for your kind thoughts and I will keep you updated.
    Tracyx

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  • Message 104

    , in reply to message 103.

    Posted by suelucy94 (U13851571) on Friday, 3rd July 2009

    Hi
    We saw Mr Tucker yesterday and he is very pleased with Lucy's progress. We see him again in 6 weeks and Lucy will have x-rays then. He was pleased with her posture and her wound. She can start swimming again in 6 weeks and can sleep on her tummy again as of now- great news for her!
    She doesn't need to wear her brace unless she's out and about which is good in this heat. He asked Lucy to bend and touch her toes, which she was reluctant to do- unsurprisingly!- (she's never been able to touch them anyway!)but he was pleased with her when she touched her shins!
    We mentioned that she still has some numbness in her back but Mr Tucker said this will gradually go.All in all a positive visit!

    Take care and keep in touch

    Sue
    xx

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  • Message 105

    , in reply to message 104.

    Posted by christine (U10806837) on Friday, 3rd July 2009

    Hi Sue
    What fantastic news. Lucy is doing great. You must be so relieved. I bet she's happy about the brace, it must get very uncomfortable in the heat.
    Emma is the same, never could touch her toes, 2 1/2 years later and she still can't. Mind you she doesn't like exercise. Just got her to try and it was laughable. She said can I bend my knees, she was practically on her hunkers.
    Speak soon
    Christine x

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  • Message 106

    , in reply to message 103.

    Posted by christine (U10806837) on Friday, 3rd July 2009

    Hi Tracy
    I too am the same, always looking at kids' backs but also adults ones as well and I have seen some curvatures over the last couple of years. We were at the Girls Aloud concert in Newcastle recently and there was a young girl of about 12 in front, I spent a lot of the time focusing on her spine as I was sure she had a curve. In the end decided I was being paranoid.
    Lets hope they start scoliosis testing and save some children going through operations like this.
    Do keep us updated please we are always thinking about you all.
    Christine x

    Report message6

  • Message 107

    , in reply to message 106.

    Posted by madmum2816 (U13850009) on Saturday, 4th July 2009

    Hi Sue, Christine,
    Good news about Lucy! So glad she is progressing well and does not have to wear her brace all the time. It does not look like Cam will need a brace thank goodness - I don't think boys are as complient as girls. It is amazing that it is still possible to be flexible enough to touch toes following spinal fusion. Cam is not very athletic, but enjoyed his ski trip in February and wants to go again, which I believe will be a possibility in the future.
    My friend Anna who had a double curve fixed with rods 20 years ago has just had her 2nd baby normally with no problems.
    I will post an update about Cam when we have some more news from Stanmore following his MRI on the 9th.
    Take care.
    Tracyx

    Report message7

  • Message 108

    , in reply to message 107.

    Posted by suelucy94 (U13851571) on Monday, 6th July 2009

    Tracy
    We will be thinking of you on Thursday- you're getting closer and closer to knowing the date for the operation every day. It 's all going to be worth it- trust me.
    Lucy is enjoying not wearing her brace at home as it's so hot, but it's made it harder when she needs to wear it for school and out with friends because she's got used to not having it on all the time. Just over 5 weeks to go and then it's off! We see Mr Tucker again on the 13th for x-rays.
    Thank you for telling me about Anna- i find that amazing! I thought the spine moved/tilted in pregnancy? Did she have any back pain?

    HI to Christine and Emma!

    Keep posting

    Sue x

    Report message8

  • Message 109

    , in reply to message 108.

    Posted by madmum2816 (U13850009) on Monday, 6th July 2009

    Hi Sue
    Anna gets some mild back ache from time to time, but she has a job that involves a lot of standing and walking as well! The pregnancy hormones can sometimes help the back, and the pelvis relaxes to stretch and let the baby through, becoming more flexible. Anna had a double curve straightened just like Lucy. She said it was definitley worth going through the operation. Amazing when you think the surgery has actually got even better since then.
    Sometimes scoliosis means a woman cannot have an epidural or spinal in an emergency, but I have never been in the situaltion with a mum with scoliosis where one was needed.
    Post soon.
    Tracyx

    Report message9

  • Message 110

    , in reply to message 109.

    Posted by suelucy94 (U13851571) on Tuesday, 7th July 2009

    Tracy

    Thank you for this-it's so reassuring. We will be thinking of you on Thursday. Let us know how it goes.

    Take care

    Sue
    x

    Report message10

  • Message 111

    , in reply to message 110.

    Posted by christine (U10806837) on Wednesday, 8th July 2009

    Hi Tracy
    Just wishing Cameron all the best for Thursday. Will keep logging in to check how he is.
    Christine x

    Report message11

  • Message 112

    , in reply to message 111.

    Posted by madmum2816 (U13850009) on Thursday, 9th July 2009

    Hi Christine and Sue
    Cam's MRI went very smoothly this morning. He said it was noisy but OK.
    it should be reviewed quickly as someone from the surgical team phoned to see if it had been done while we were there. Hopefully we should hear in a day or two as they have put it as priority, and we will get a phone telling us when we will be seen again.
    I will let you know when I have some news.
    Tracyx

    Report message12

  • Message 113

    , in reply to message 112.

    Posted by christine (U10806837) on Thursday, 9th July 2009

    Hi Tracy
    Glad it all went OK for Cam. Things sound as though they are going to run very quick from now on and that is excellent news.
    As usual, keep us posted, we all await any news eagerly.
    Christine x

    Report message13

  • Message 114

    , in reply to message 112.

    Posted by suelucy94 (U13851571) on Thursday, 9th July 2009

    Hi Tracy
    It sounds like it all went well with Cam and it must have been reassuring to know the surgical team were checking to see if the scan had been done. I have been thinking of you all today. Hopefully you will get a phone call soon. Let us know!

    Sue
    x

    Report message14

  • Message 115

    , in reply to message 114.

    Posted by madmum2816 (U13850009) on Saturday, 11th July 2009

    Hi Sue/Christine
    Got a letter from Stanmore this morning. We have to phone on Monday for an admission date!! Felt sick inside when I got the letter - this is happening so fast. Cam was cool about it, but Ian and I are astounded at the speed this is hapening. I will post again when I know what date we have.
    Tracy x

    Report message15

  • Message 116

    , in reply to message 115.

    Posted by christine (U10806837) on Sunday, 12th July 2009

    Hi Tracy
    Please post again on Monday when you get Cam's admission date. Yes it is going really fast now but hopefully Cam's date could be early on in the summer holidays giving him less time off school. Glad Cam is still coping really well.
    Christine x

    Report message16

  • Message 117

    , in reply to message 115.

    Posted by suelucy94 (U13851571) on Sunday, 12th July 2009

    Hi Tracy
    Lots of things have happened in the last few weeks for you all and l know your thoughts are probably all over the place but like Christine says, the sooner the date, the sooner Cam will be on the road to recovery with hopefully less impact on school work. Once you get a date, you can organise and prepare yourselves . I look back now and can't believe what has happened to us since late February. Was it a dreadful sickening shock? Yes it was. Are we glad she had surgery? Yes we are! Lucy has a straight back now -it's amazing. She has been so brave- we are all so proud of her - she's just kept going. I was proud before but what a thing to go through at a young age.
    I can't help but still feel very emotional when i think of the last few months but we got through it and so will you. The nurses at Stanmore were so kind- Cam and you will be well looked after.

    Post tomorrow- am thinking of you

    Sue
    x

    Report message17

  • Message 118

    , in reply to message 117.

    Posted by madmum2816 (U13850009) on Monday, 13th July 2009

    Hello Sue and Christine.
    I telephoned Stanmore this morning first thing! Cam is to be admitted on August 3rd with his op the next day. If there is a cancellation it may be brought forward. We all feel stunned but I am so glad there is not too long to wait.
    It is so good to have you both to share this with. It helps to get us through knowing there are people on the other side. A dreadful sickening shock is exactly how it feels, but I really want to see my son with a straight untwisted back, and a few inches taller.
    Thank you for all the kind thoughts and words. I have contacted parent accomodation to book a room, and any other advice you could give aboput Stanmore would be great.
    Talk soon.
    Tracyx

    Report message18

  • Message 119

    , in reply to message 118.

    Posted by christine (U10806837) on Monday, 13th July 2009

    Hi Tracy
    This is really good news. August 3rd is soon, but also fingers crossed for a cancellation, Emma took someone else's place when they couldn't go ahead because of a temperature. I know exactly how you feel, that feeling in the pit of your stomach. You just wish that this had never happened but know nothing can change it, only the operation can help. The feeling you get when you see your child stand for the first time after the operation is amazing. To see them stand straight and tall beats no other. Unfortunately I have no experience of Stanmore but will post later with anything I think may be of help for your hospital stay. Give our best wishes to Cam.
    Will write soon.
    All our best wishes
    Christine, Emma and Megan x

    Report message19

  • Message 120

    , in reply to message 118.

    Posted by suelucy94 (U13851571) on Monday, 13th July 2009

    Tracy
    I'm so pleased you all haven't got too long to wait. It's not long is it? You all have something definite to aim for now.

    The parent accommodation is just across the road from Coxen Ward/adolescent unit where l imagine Cam will be? It will take less than1 minute to get from the ward to the block. There is a kitchen and a washing machine and ironing board. There are 3/4 loos and showers. The rooms are on the 1st floor and on the ground floor there is a small cafe/restaurant. I used to get my teas and coffees and snacks from there! There are cupboards in the kitchen where you can leave food and a fridge-they suggest you label your food with your name. There is also a small kitchen for parents on the ward so maybe take a mug and whatever you want to drink.
    Lucy only ate about 3 of her meals during her stay as she had no appetite, so i used to eat them, which sounds dreadful (!)but except for the last few days, she didn't want me to leave her so it meant l didn't go to the cafe/restaurant. Parking is free. If you can, get some fresh air and take a walk in the grounds-it's so green and leafy- and just a small break from the ward.
    I will post more as i think of it. So pleased you have a date.

    How long will Cam be in for? It's one operation isn't it?

    Sue
    x

    Report message20

  • Message 121

    , in reply to message 120.

    Posted by madmum2816 (U13850009) on Tuesday, 14th July 2009

    Hi Sue
    Thanks for the info.
    Don't know how long cam will be in for. I presume a week to 10 days as he is having one op. It feels weird to know so little about it. we don't get to see Mr Molloy until the day Cam is admitted. It's bizarre isn't it?
    I have booked my accomodation and they have reserved it for two weeks for me. If the date changes they can adjust the days.
    Did you spend all night with Lucy too, or did you manage to get to the room for some sleep? And was the accomodation full?
    I have asked Cam to write a list of things he wants to take and have bought some baggy shorts and shirts for him to wear. I need to get some loose-ish PJ's for him. I got some flip flops as I thought he wouldn't be able to do his shoes up.
    Nearer the time I will get his some of the foods he likes so maybe he can snack when he feels like it.
    it's feels really odd knowing when the op is now - I keep thinking 21 days to go etc. Cam is pleased he will get to go to some end of term parties!
    Tracy x

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  • Message 122

    , in reply to message 121.

    Posted by suelucy94 (U13851571) on Tuesday, 14th July 2009

    Hi Tracy
    I agree it's bizarre- the first time we saw Mr Tucker at Stanmore was on the morning of the first operation.
    With regards to the accommodation, we arrived there on a Bank Holiday weekend and the accommodation lady said it would be quiet because of this and it was! There weren't many patients on the ward either- in fact the whole hospital seemed very quiet and not at all what i'd imagined! I think that for the first few days there were only a few parents staying in the block. I had imagined prior to the stay that i would have a coffee or eat with other parents but l didn't see anyone which was quite strange at night. It will probably be different when you're there.
    When my husband came up (on and after the 2 operations, l would sleep in the parent block and Jamie would sleep in the room with Lucy. I think l slept in the parent room only 4 or 5 times out of 13 as Lucy didn't want me to leave her because she was on morphine so the nurses had to do their obs every 2 hours- day and night and also two nurses had to turn her from her back to her side or side to back every 2 hours- to prevent marking. (She could not turn over herself until she was given a soft corset to wear 3 days before we left hospital). They often had to wake her, especially during the night which meant she didn't always fall back to sleep easily because of the pain. I would sometimes be comforting her/ stroking her hair for up to 30 minutes. Then after 1 1/2 hours the nurses would be back! I'm sorry if this sounds a bit downbeat but we didn't like the nights but it wasn't forever and i hope l haven't put you off- Cam may be absolutely fine but in case he too is like Lucy, then please remember you are not alone and remember us-if that helps!
    On a more positive note, our school held its school awards presentation this afternoon and Lucy got an award for Endeavour - a lovely silver cup to keep for a year- because of her "determination, courage and optimism" regarding the operation- another proud moment!
    On a practical note- Lucy wore a loose T shirt and PJ bottoms for the last 3 days- before that she was in a hospital gown. We took books and magazines and puzzles but Lucy was quite listless and couldn't settle to anything really. There are TVs by the beds.
    We had snacks for Lucy- but she wasn't always hungry.

    I hope this helps.......
    I hope Cam enjoys all his parties! Have some nice treats for him to look forward to after the op as well....!

    Sue
    x



    Report message22

  • Message 123

    , in reply to message 122.

    Posted by madmum2816 (U13850009) on Tuesday, 14th July 2009

    Hi Sue
    Well done to Lucy for getting her award. It's fantastic her school gave her recognition for her determination and courage. You must be very proud.
    Thank you for your thoughts on your stay at Stanmore. I realised sleep would be erratic, but it is good there is the option to stay oon the ward. I doubt if I will be sleeping much, but it will be good to have access to a shower and kitchen, and it means Ian can be with Cam if I am off the ward. it would be nice to meet other parents too.
    I bought Cam some loose cotton pj bottoms and some t shirts today, as well as some lovely fluffy soft socks - which he has been wearing already!
    Cam still thinks he will be able to do a school trip at the end of September, and has even hinted at doing his work experience starting Sept 14th, but I had a good talk with him today. He is so positive he thinks his recovery will be weeks rather than months!!
    I'm lining up some things to look forard to in the Autumn. We are all going to see the band Muse in November, and may even go away for a few days over half term if he is up to it - but that seems a long way away.
    Take care for now, and I will post soon.
    Tracy x

    Report message23

  • Message 124

    , in reply to message 122.

    Posted by christine (U10806837) on Tuesday, 14th July 2009

    Hi Sue
    Well done Lucy - a very well deserved award. You must be very proud of her.
    Christine x

    Report message24

  • Message 125

    , in reply to message 123.

    Posted by christine (U10806837) on Tuesday, 14th July 2009

    Hi Tracy
    Tell Cam to enjoy all the parties, have lots of fun.
    Emma was in the Freeman in Newcastle and they did not have parent rooms. I stayed on the ward and slept (ha ha) in the bed next to Emma - luckily it was a quiet two weeks and there was space for me. Emma was only just turned 11 at the time and was not a good patient (bit of an understatement) so never really got the chance to sleep much. She found it hard to come to terms with. If she had been a couple of years older I think she would have coped a lot better. She has really matured in the last 2 years.
    I met other parents who were staying on the ward and had little chats here and there, especially to the ones whose children had gone through the same op. It was good to talk to others who understood what Emma was going through.
    Like Sue, I don't want to paint a dismal picture. Emma was in a gown for the first few days after her op, it was easier for the nurses to check her dressing, she had a catheter fitted and she needed a small blood transfusion so a gown was more practical.
    Emma didn't really eat the whole time she was in hospital, too nervous beforehand and just didn't feel like it afterwards. She was sick the first time she ate (probably due to the anaesthetic and having nothing on her stomach to start with) which put her off eating for a while. Once out of hospital she got back to normal.
    The fluffy socks are a great idea, their feet can sometimes feel a bit cold.
    It is hard for the child who is having the operation to fully understand how long their recovery will be. Emma made it back to school part time 6 weeks post op because she is very academic and was desperate to sit her SATs (which she did and got 3 level 5s). Cam's determination will help his recovery but he will learn not to push himself too much.
    One thing you must do is look after yourself. Try and take a break whenever you can, even if only for a few minutes for a breath of fresh air. It is both physically and mentally tiring and you need to keep up your strength.
    The medication Cam will be given will help with any pain. The morphine was administered by Emma pushing a button, but the dose is limited and you cannot overdose on it. Morphine being a strong drug made Emma hallucinate a bit, she was convinced she was lying on the mattress straight on the floor.
    We met Emma's consultant the night before her op who went through what would be happening and gave us all the reassurance we needed. He was fantastic and still is. Emma now only has to see him once a year for an x-ray and a quick chat (she is 2 years 4 months post op).
    Take care of each other. I hope my honesty hasn't upset you.
    Christine x

    Report message25

  • Message 126

    , in reply to message 125.

    Posted by madmum2816 (U13850009) on Wednesday, 15th July 2009

    Hi Christine
    Your honesty is very much appreciated. It gives me a greater understanding of what is to come, and to be able to prepare for it.
    I am amazed at how well Emma and Lucy have coped with their operations, and their determination at getting through it and back to their normal lives. It is so encouraging to hear how they are doing now.
    Our younger son is going to stay with family in Southwold for a week while Cam is in hospital which means he can spend time with family and cousins - he is a bit of a worrier!! This means Ian and I can concentrate on being with Cam.
    Thank you for your post - the support is amazing.
    Tracyx

    Report message26

  • Message 127

    , in reply to message 13.

    Posted by IceDragon (U14070071) on Wednesday, 15th July 2009

    I am 38 my scoliosis was diagnosed at school but was unfortunately left with no treatment (the consultant was reluctant to operate) so I am left with a right hand dorsal spine curve, but to what degree is unknown. I would really love to see testing put back into all secondary schools as it used to years ago I support SAUK in this idea too, I dont know if you have contacted them but they are a great help to lots of people diagnosed with scoliosis. feel free to answer / talk. xxx

    Report message27

  • Message 128

    , in reply to message 127.

    Posted by madmum2816 (U13850009) on Thursday, 16th July 2009

    Hi
    I agree that SAUK offers support for sufferers and families of those with scoliosis - we have been members since I first heard of them.
    Testing in secondary school would have picked up my son's scoliosis before the curve was really noticeable, but in his case the curve would have worsened quickly regardless. However, for many others a brace would stop progression so surgery would not be necesssary.
    I know many people live with scoliosis - a lot with pain and disablility. I find myself looking at people's backs a lot now and tell everyone I know to check their children's backs regularly.
    Tracyx

    Report message28

  • Message 129

    , in reply to message 126.

    Posted by christine (U10806837) on Thursday, 16th July 2009

    Hi Tracy
    So glad to hear I didn't upset you with last post.
    Great idea that your younger son is staying with relatives. My youngest, Megan, stayed with her grandparents for the 2 weeks as I stayed in hospital with Emma full time. She visited Emma a couple of times but as she was only 5 at the time she did feel a bit jealous of all the attention Emma got and the fact that she missed me terribly.
    If I think of anything else that may be helpful I will post again. Keep us updated with all your news, we are here to support you all in any way we can.
    Christine x

    Report message29

  • Message 130

    , in reply to message 129.

    Posted by madmum2816 (U13850009) on Thursday, 16th July 2009

    Hi Christine
    Got a lot of info through from Stanmore yesterday - what Cam will not be able to do for a while after surgery. Also a lot of stuff on how high his bed should be and seating. He got very upset after reading it all as I think he finally realises that his recovery will take time. He thought he'd be up and out seeing friends when he got home from hospital. We have also cancelled another school trip, and he will not be able to do his work experience week which he was looking forward to.
    He was fine after a while but it is horrid to see him get so upset. We just try and focus on things a few months down the line, and planning things between now and the op to keep his mind off it.
    Tracyx

    Report message30

  • Message 131

    , in reply to message 130.

    Posted by gentleladygreeny (U13938496) on Thursday, 16th July 2009

    Hi tracy.
    I have posted messages before as my daughter sara is waiting for the date of the operation. She has a 60 and 30 degree curve.
    She is very angry about it all. We only found out she has scoliosis a few months ago by chance. And i felt ever so guilty that i hadn't noticed it before. She won't really talk about it much. I hope everything goes well for Cam and i will be thinking of you. Sara cried her eyes out at the last appointment when they read out the risks to her but she was ok when the liason lady spoke to her as her daughter has had the operation 10 years ago. Sara is 14 by the way.
    Take care
    Bev & Sara

    Report message31

  • Message 132

    , in reply to message 130.

    Posted by christine (U10806837) on Thursday, 16th July 2009

    Hi Tracy
    Stanmore sounds like a brilliant hospital, giving you all this information. When Emma saw her consultant the night before the op he was very straightforward and explained what would happen. Emma managed in her normal bed and settee etc, although for a while after the op she could only sit upright for a while but gradually built up strength. Her school that she started at a few months after her op bought some special chairs in for lessons like art and science as she found she could not sit on wooden stools, she needed the support of a backrest.
    It is so hard to see them get so upset and you are doing the right thing by focusing on future events and also a good idea to do things right now to take his mind off things. I took Emma before her op to a place called Wet N Wild as she felt as though she wouldn't be able to do this for a while after the op. Is there anything Cam would especially like to do now that he will not be able to manage until a few months time?
    Christine x

    Report message32

  • Message 133

    , in reply to message 131.

    Posted by christine (U10806837) on Thursday, 16th July 2009

    Hi Bev and Sara
    Which hospital will Sara have her operation at?
    Anger is a natural feeling that I imagine all children with scoliosis feel, I know Emma did, she had it in bucketfuls. She kept asking "why me?".
    I too felt immense guilt at not having spotted the change in her spine. I am a very diligent parent but couldn't understand how I could miss something so obvious. The hump on her back seemed to pop up from nowhere. Of course, this is a natural feeling as well but you have to try and put guilt to one side and concentrate on their op, recover and future.
    Has anyone suggested to you about Sara speaking to say a child psychologist. I left this too late and regret it. Emma was only 10 when they decided she had to have the operation and just turned 11 when it went ahead and she really couldn't cope. I spoke to the doctor about a referral to a psychologist but an appointment would have come through after the date of her operation. I think it would have helped her to talk to someone outside of the family, which is actually what happened a few months after her operation. She was lovely lady and Emma only had 2 sessions with her but was able to talk freely. As well as going through the op, Emma went through my divorce, house move, school move and area move so no wonder she needed a little help.
    In time the anger recedes as in Emma's case. She is a lot stronger person now and, of course, a lot more mature.
    When Emma's consultant, Mr Fender (a fantastic surgeon - as I have already mentioned lots of times on here) was very open with Emma and myself about the risks involved as they have to be, but in the next breath he reassured us saying that he does one of these operations every week and has never had any problems. You have to weigh up the pros and cons and I know that Emma is so glad it went ahead.
    Emma is now 13.
    Take care of yourselves and post with any updates please.
    Christine, Emma and Megan x

    Report message33

  • Message 134

    , in reply to message 130.

    Posted by suelucy94 (U13851571) on Thursday, 16th July 2009

    Hi Tracey

    I know it's hard but i think It's good that you got the info through before surgery about what Cam will and won't be able to do after wards.( I think the first 10 days at home were difficult but after that fine). We had no idea and an occupational therapist told Lucy 3 days after her 2nd op when she was feeling very teary.She went through a list of dos and don'ts and we cried after she left us. It was probably one of the worst moments during our stay as we had been totally unprepared for what she told us and Lucy was just recovering form the op.She told us that until she had the height measurements of chairs, sofa, bed, loo,bath etc that she couldn't discharge Lucy. After 2 ops and feeling sore and in pain the last thing Lucy needed was to hear it all and i still feel that it could have been handled very differently. She got Lucy to sit in a chair and then measured from Lucy' s knees to the floor. It was 17 inches. Everything had to be 17 inches in height or more for Lucy to be discharged-my husband measured everything before coming up the hospital and luckily everything was that height or more. Make sure you ask Mr Molloy for advice on the dos and don'ts too- as our surgeon had a differing opinion on some advice!
    Lucy found sitting up the hardest after the operation and for the first 2/3 weeks at home. I think from posts on the Scoliosis
    Support Org that this is quite common. She liked lying down as it put no pressure on her back. She started by sitting up for 10 minutes and gradually building up the time. I understand that this is why they need the time off school as sitting up for long periods is the last thing to fall into place. Again perhaps check this with Mr Molloy?

    Lucy did go back part time 6 weeks after the op and has done a full week this week. You will have a grim few weeks but it will be so worth it-honestly.

    Hello to Christine too- l find it really comforting looking on this site as i really do feel we are all in it together and we can all offer support. A friend discovered this site and told me about it- i'm so glad she did!

    keep posting and a big hello to Cam- everything will be fine honestly.

    Love Sue x

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  • Message 135

    , in reply to message 131.

    Posted by madmum2816 (U13850009) on Thursday, 16th July 2009

    Hi Bev and Sara,

    I know what the wait for appointments and surgery is like. It took an age for us to be seen as an urgent case at Stanmore but since June 22nd we have had an MRI and got a date for surgery!
    I too felt guilty at not noticing Cam's curve sooner, but you don't often see your teenager undressed. We were on holiday when it was spotted. Since then it has doubled and is progressing rapidly 70 degrees a few weeks ago.
    The thought of the op is scary but I have heard from so many people who know youngsters who have been through it. This site is a tremendous support as you can chat with people who really understand what you are going through.
    Cam does not talk about the op etc very much, but has bouts of being really down and he too gets angry at 'why me'.
    I hope you get a date for surgery soon. Which hospital/consultant are you with?
    Take care
    Tracy and Cam x

    Hi Sue/Christine,
    Cam is much better today. We are busy with a BBQ (in the rain?)this weekend, and have got trips to the cinema and seeing friends to look forward to over the coming weeks. Time is going really fast. We now have to get Cam a new bed (he sleeps in a loft bed which will be useless after the op!) and we need to get him a comfortable chair with arms (we have sofas that are too low). I never thought I would need to measure the height of our toilet either.....
    Some of my manual handling knowledge from work will come in handy when it comes to moving him. He will be seen a few times by the physios after the op which will help a great deal.
    I am finding working getting harder and harder but at least it keeps me busy.
    Your support through this is invaluable - I just wish we could meet. Well done to Lucy for being at school full time this week.

    Tracy and Cam x

    Report message35

  • Message 136

    , in reply to message 135.

    Posted by suelucy94 (U13851571) on Thursday, 16th July 2009

    Hi Tracey
    I borrowed a "perching stool" (Argos sell them) - they encourage you to sit up but you are semi-standing. Lucy found this really useful and it did get her sitting up more. The height can be adjusted too.
    The physios were really good and very nice- one was also called Lucy and the other was Rebecca.
    Work and a busy job does take your mind off what's going on-li found work did help a lot but it was always in the back of my mind and friends and colleagues were and still are great. Yes it would be lovely for us all to meet up- l can speak so much quicker than l type!!!

    Sue x



    Report message36

  • Message 137

    , in reply to message 135.

    Posted by christine (U10806837) on Thursday, 16th July 2009

    Hi Tracy and Sue
    It is amazing how different two hospitals' treatment can be. At the Freeman Emma only saw a physio once to make sure she could walk up and down stairs before discharge. We were never given any information about heights of chairs, toilets etc. Emma left hospital and just had to get on with it without much support. One thing I found helpful was a bath board which I borrowed off my Dad which fits across the bath and enabled Emma to sit on this so she could shower. Might be worth asking the occupational therapist for one of these.
    Well done Lucy for your first full week at school. Emma says well done, it is a big achievement.

    Bev and Sara
    Hope you don't have too much longer to wait for a date. How is Sara coping?

    Post soon.
    Christine x

    Report message37

  • Message 138

    , in reply to message 133.

    Posted by gentleladygreeny (U13938496) on Thursday, 16th July 2009

    Hi Christine, Emma and Megan.
    Thanks for your message, it is so good to be in touch with other parents that have been through this with their child or are about to go through it. Sara will be having her operation at the Norwich and Norfolk Hospital. Sara's hump on her back also just seemed to appear from nowhere and is rapidly getting worse. She has just had her 14th birthday and she bought alot of new fashionable clothes but she is really conscious of her back. I try and make her feel better but it does'nt always work. Sara's school have made an appointment for her to see the school nurse if she feels that she wants to talk to someone outside of the family but maybe yes a child psychologist would be good as she is angry about this. At the hospital a liason lady spoke to Sara about the operation as her daughter had the operation 10 years ago and that did make her feel a bit better. As with Emma's consultant Sara's consultant Mr Lutchman was really good with her and also told her that they do one operation a week.
    It is very reassuring that Emma is glad it went ahead. I will be showing Sara your message tommorow.
    Take care and i will post with any updates.
    Bev & Sara x

    Report message38

  • Message 139

    , in reply to message 135.

    This posting has been hidden during moderation because it broke the House Rules in some way.

  • Message 140

    , in reply to message 135.

    Posted by gentleladygreeny (U13938496) on Friday, 17th July 2009

    Hi Tracy and Cam,
    Thanks for your message. Sara is with Norfolk and Norwich hospital. We should get a date any day now.
    Best wishes to Cam.
    Bev & Sara x

    Report message40

  • Message 141

    , in reply to message 140.

    Posted by madmum2816 (U13850009) on Thursday, 23rd July 2009

    Hi Sue/Christine
    Counting down the days....
    Cam is enjoying himself going out a lot with friends and to lots of end of term parties. He seems quite chilled so we are just letting him have fun.
    Trying to keep ourselves busy as well, and trying not to think of what is to come. Seeing friends again this weekend - I'm having another birthday I don't want!!
    Enjoy the holidays. Will post more if I have any news, and will post just before we go to Stanmore.
    Tracyx

    Report message41

  • Message 142

    , in reply to message 141.

    Posted by suelucy94 (U13851571) on Friday, 24th July 2009

    Hi Tracy and Christine

    I have birthdays like that too!
    I' m glad that Cam is enjoying himself-it makes it easier for you too. The days are going really quickly and l expect you have made and finalised plans for whilst you are in hospital. Is the admission date still the 3rd and what ward is Cam on? I think he will be on the adolescent unit/Coxen ward? The staff are great- you will be well looked after. I wonder what room you will have in the parent block- l was in room 14. It would be funny if that was yours too!
    Enjoy the weekend and Happy Birthday!

    Take care

    Sue x

    Hi to Christine and Emma- hope you are both well and Emma enjoying the holidays! x




    Take care

    Report message42

  • Message 143

    , in reply to message 141.

    Posted by christine (U10806837) on Friday, 24th July 2009

    Hi Tracy and Sue
    Glad to hear Cam coping well and having fun.
    Happy Birthday - feel the same about birthdays - years are going too fast.
    Enjoy the weekend.

    Sue - Emma enjoying schools hols - is Lucy? Daft question, I suppose.

    Christine x

    Report message43

  • Message 144

    , in reply to message 143.

    Posted by suelucy94 (U13851571) on Saturday, 25th July 2009

    Hi Christine and Tracy

    Lucy is definitely enjoying the holidays! She has been out with friends and is at a sleepover. Tomorrow we are all visting her grandad- she loves staying there. The forecast is dreadful though!

    Enjoy the weekend!

    Sue x

    Report message44

  • Message 145

    , in reply to message 144.

    Posted by madmum2816 (U13850009) on Tuesday, 28th July 2009

    Hi Sue & Christine
    Am exhausted trying to pack so much into these few days left before the op. Are now decorating a new room for Cam for when he comes home. Nice new double bed with a fab firm mattress (he had a loft bed which would be useless to him for ages!!)
    Had a phone call from Mr Molloys colleague Mr Field today. Did not get to speak to him as we were at the cinema to see Harry Potter (which was great). but he reassured us everything was in place for next week, and they were keen to get on with the surgery.
    Sue - is there a sink and a bedside lamp in the parent rooms? And do we need to provide towels and plates etc ? Also, is there a microwave?
    Taking Finlay to Southwold on Saturday, back Sunday. Will definitely do a post on Sunday if not before. Hope u are all enjoying the holidays, and hope the weather cheers up a bit!!
    TracyX

    Report message45

  • Message 146

    , in reply to message 145.

    Posted by suelucy94 (U13851571) on Tuesday, 28th July 2009

    Hi Tracy

    I think it is reassuring to get a confirmation call that all is scheduled to go ahead next week as planned.
    In my parent room there was a sink, wardrobe and bedside table but no bedside lamp. There was only one thin top sheet and one thin blanket so l recommend you take a single duvet or blanket- with the metal framed window it was very cold at night. If we have a heatwave next week you may not need it of course!
    I think there were two handtowels in the room but l used my own. There are microwaves, a fridge and an oven in the parent accommodation kitchen. They recommend taking some labels and writing your name on your food. I don't know if there were plates, cups and cutlery etc- l suggest taking your own just in case......I think there may have been a microwave in the parent kitchen just off the ward too- there was definitely a kettle though for you to make drinks.
    Try to take some short walks round the grounds- you will need some fresh air and a few minutes to yourself. It's incredible how quickly you get used to being on a ward and forgetting about the world outside! Having said that, Lucy's brother was doing his A levels so if i wasn;t thinking about Lucy, l was thinking about him!

    I take it Cam is on the adolescent ward? I keep thinking of you all and just want to say l am sure everything will go really well. We have just been playing pool and as Lucy leant over to play a shot, her granddad commented,"if only Lucy's surgeon could see her now!". I can't believe what's she has been through this year but everything has turned out great and it will for Cam and you all. I remember how l was feeling days before admission and l do empathise with you so much- l really do
    I hope you all enjoy the rest of the week. Will post on Sunday.

    Take Care
    Sue x

    Report message46

  • Message 147

    , in reply to message 145.

    Posted by christine (U10806837) on Saturday, 1st August 2009

    Hi Tracy
    Just want to send our best wishes for Cameron for Monday. We will be thinking of you all and know everything will be fine. Looking forward to your future posts on Cameron's progress.
    Christine, Emma and Megan xx

    Report message47

  • Message 148

    , in reply to message 147.

    Posted by suelucy94 (U13851571) on Saturday, 1st August 2009

    Tracy

    We send our very best wishes to Cameron and you all. We too will be thinking of you on Monday and the days after. As Christine says, everything will be fine. I hope it will help you knowing that you have 2 "message board " friends who will be thinking of you all throughout. A big hug from us!

    Take care

    Sue, Lucy, Jamie and Robert xx

    Report message48

  • Message 149

    , in reply to message 148.

    Posted by madmum2816 (U13850009) on Sunday, 2nd August 2009

    Thanks so much for all your good wishes. They mean a lot to us.
    We are feeling very nervous now but just want to get it over and be back at home again.
    I will not be able to post until then (unless I get get access to a laptop). I will let you all know how Cam is as soon as I can. It means so much to have your thought and best wishes with us.
    Sue - we will be on the adolescent unit.
    Tracy and Cam xx

    Report message49

  • Message 150

    , in reply to message 149.

    Posted by suelucy94 (U13851571) on Sunday, 2nd August 2009

    Cam and you will be in very good hands on the ward- all the nurses were kind but in particular there was Carl, Rachel, Claire, Jo and Amy. Please say hello to them from us and let them know Lucy is getting on really well and is 2 weeks away from not having to wear her brace anymore! The physio was great too.

    We really are thinking of you and wishing Cam all the best

    Sue
    xx

    Report message50

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