Lesley Posted November 28, 2010 Author Share Posted November 28, 2010 Hello - yes, first week out of the way, she's found it extremely uncomfortable but she is old enough to know that she needs to do this and is lucky to have the opportunity. She has been told that as well as this 3 week block instead of the usual 2 week block, she will need to go back next year as her ligaments are so poor. Her muscles have been doing the job of keeping her upright and she's done well to stay out of a wheelchair most of the time but they need to make her as strong as she can be now to keep it that way. The two and a half hour coach journey followed by tube across London wasn't a good start as she was in a lot of pain from that and the accommodation has one single bed and a pull out bed. There's no way L can get up from the pull out and so my daughter has had to use that......and she has her own problems with EDS so they were both looking forward to coming home this weekend to sleep in their own beds. She and L will go back tomorrow by train and taxi - still cheaper than the petrol to drive down. The physio is very tough and parents aren't allowed in - they can't even see in through the door. She does two hours in the morning followed by an hours school work in the hospital. she has made friends with a couple of other girls around her age which is good. Then they have lunch and back for another hour and a half of physio. They are then encouraged to go for a walk. All the girls wanted to go to Covent Garden the other day - I think my daughter will be broke before she comes home at the end of 3 weeks! After all that L does her own Internet School work. She's certainly kept busy. I'm just off to see her before she goes back for week 2 - she told me she was dying on the first day........I'll see how she is today! Next weekend they're planning to stay over in London and Daddy and Brother will go and join them instead of driving them back home. My son is working in London at the moment so he will go and see them one evening in the week. The carefully made plans for looking after her brother fell apart on day 1 - he was supposed to be at home on Mondaysand Fridays and Daddy will work from home, then we have him from Tuesday through to Thursday with him going for tea at one friend's house on Tuesday after school and a different friend on Thursday with us picking him up after tea - spreading the child care so that he is happy and none of us have to do it all. Daddy has to go up to Doncaster midweek for work. Fridays he is being taken out of school so that he and Dad can drive down to pick up L and Mum and be together for the last day of the weeks physio . Day 1 and J was ill - he was off school until Thursday No visiting friends and his Dad and I looked after him between us. Hopefully this week will be better. Much as they fight, he is missing Lauren and is particularly missing his Mum. Quote Link to comment Share on other sites More sharing options...
Sheilaz Posted November 28, 2010 Share Posted November 28, 2010 Goodness, what a week, best laid plans etc...! I don't think anyone without hospital stays or appts can realise their big effect on the whole family, you're all doing a marvellous job. That sounds as if L. is coping really well and making good progress. Very hard work though, she is a star. All the best for week two, and thanks for the update. Quote Link to comment Share on other sites More sharing options...
Lesley Posted November 30, 2010 Author Share Posted November 30, 2010 Guess what? As my daughter added to her email - another town, another A&E .............. No smile today. Lauren used the hand rail to get out of the bath last night in the hospital accommodation.....her wrist didn't like it GOSH were really good, they phoned UCL and arranged for a car to take them there and bring them back at midnight. Not a very nice place to be until midnight and the children's part of A&E was full of vomiting children Not sure what is going to happen with her physio now - they've gone early to find out. It is a suspected break and they've only put a back slab on as her fingers are numb - they're still numb this morning. She really needs to complete this three week block so that this doesn't keep happening. It's also snowing in London.......fortunately the road is clear or goodness knows what she could do in the 5 second walk from the accommodation block to the hospital Quote Link to comment Share on other sites More sharing options...
Couperwife Posted November 30, 2010 Share Posted November 30, 2010 oh, my word. poor lamb. she looks so fed up lots of gentle hugs coming her way from up here.. cathy x Quote Link to comment Share on other sites More sharing options...
Seagazer Posted November 30, 2010 Share Posted November 30, 2010 Oh I'm so sorry, poor thing. Hope everything heals quickly. Quote Link to comment Share on other sites More sharing options...
chickencam Posted November 30, 2010 Share Posted November 30, 2010 Poor Lauren I hope that are still things that she can do and that she heals quickly. Quote Link to comment Share on other sites More sharing options...
penelope Posted November 30, 2010 Share Posted November 30, 2010 Hi Lesley I am so sorry........wouldn't it be nice just to have a rest from this for just a little while. I know she is in the best of places & I hope they will be able to help her to recover with as little pain as possible. They will be able to help her with the rest of the physio,plus some exercises to help prevent the rest of her arm being at risk. Has she been refered to Prof Graham there yet,I can't remember if she has seen him or if it was the other Lauren we know with EDS. He Is the Prof who diagnosed me & my father & daughter, he is a leading expert. It might be worth asking sue m the physio about it. Hols was going to try & see if we could meet up on Sunday when the others go back, we will try to skype Lauren later. I feel so sorry for Lauren,& for your daughter. Try to keep smiling through it & think that at least they will be able to help. Take Care & send them our love Quote Link to comment Share on other sites More sharing options...
Lesley Posted November 30, 2010 Author Share Posted November 30, 2010 Thanks all - all frustrating....but not life threatening....there are worse things that happen to people. P, I'm not sure who L has seen yet. The male physio was very offhand this morning and spoke to DD as if she'd self diagnosed the injury and put L in a sling - until she pointed out that L had spent all evening in UCL A&E, had X rays and was wearing a back slab! - hardly the sort of thing you keep in your handbag is it! They think it may be a dislocation and not a break - they don't want her in plaster so will liaise with UCL. They want her to stay - hooray!! some sense at last! DD was worried that they may be sent home. Onwards and upwards....... (It will be great if H can Skype L later ) Quote Link to comment Share on other sites More sharing options...
Sheilaz Posted November 30, 2010 Share Posted November 30, 2010 How wearing for them Lesley, a horrid step backwards, I hope there are several major steps forward in this stay. Love and gentle hugs xx Quote Link to comment Share on other sites More sharing options...
Valkyrie Posted November 30, 2010 Share Posted November 30, 2010 Oh poor Lauren - last I saw she was doing so well too. Give her a cuddle for me. Quote Link to comment Share on other sites More sharing options...
Lesley Posted December 1, 2010 Author Share Posted December 1, 2010 Thanks Valkyrie - all hugs and cuddles sent down the lines SPOT THE DIFFERENCE! Lauren's wrist did a big CRACK last evening - she and Mum were - than L said she had feeling back in her little finger! Within the hour she had lost all the numbness Obviously a dislocation - all A&E can say is that "the X Rays don't look right but nothing obviously wrong" They went with the other girls and Mums to Oxford St. - and we have another smiley photo Her Dad is snowed in in a hotel in Doncaster so we may have J longer than planned - and he's eating us out of house and home! Those of you who know me, know that half the time I can't remember my name these days...........J has school dinners on Mon, Wed, and Fri.........and packed lunch on Tues and Thur..........I think it's Wednesday? - I've sent him to school with no lunch.....and I have checked on the Warwickshire website that the school is open....... I've warned him about crossing the road after school when he goes to his friend's, the last thing we need is him squished by a truck with Dad stuck up North and Mum in London....all trying to get back to see him in hospital I think I've remembered it all? Quote Link to comment Share on other sites More sharing options...
Happy chickens! Posted December 1, 2010 Share Posted December 1, 2010 Your granddaughter shows amazing strenth of spirit. School won't let your grandson starve I'm sure! When I was ill a few years ago and couldn't make packed lunches (and they were too little to make their own) I phoned school and they added them to the school dinner rota straight away under the circs - perhaps that might help? Fingers crossed for Lauren's treatment. x Quote Link to comment Share on other sites More sharing options...
docsquid Posted December 1, 2010 Share Posted December 1, 2010 Only just catching up on this, Lesley. Your grand-daughter is such a lovely girl, and copes so amazingly well with all the horrible things that happen to her. It is lovely to see her smiling after so much has gone wrong. It is great news that she can stay, and I really hope things pick up for her. Quote Link to comment Share on other sites More sharing options...
Valkyrie Posted December 2, 2010 Share Posted December 2, 2010 Hey there's our smiley girl again. Phew! Quote Link to comment Share on other sites More sharing options...
Ain't Nobody Here Posted December 2, 2010 Share Posted December 2, 2010 Poor Lauren, but thank goodness it was 'only' a dislocation! Quote Link to comment Share on other sites More sharing options...
Sheilaz Posted December 7, 2010 Share Posted December 7, 2010 So, week two, how's it all going? Quote Link to comment Share on other sites More sharing options...
Lesley Posted December 7, 2010 Author Share Posted December 7, 2010 She's on week 3 now She's doing very well - she's on to 5lb weights on her legs and has been told that she can try wearing heeled shoes She dragged her Mum off to Oxford St. and was aiming for some stilettos - she has compromised with a lower, chunky, heel. There's a bit of a stand-off between my daughter and the physios - they're very, very, keen on getting children back into mainstream education and have said that she must go back next week - they want her to do an hour a day and then step it up gradually. L is really settled with the internet school, has made new friends, has Skype/webcam chats with schoolfriends across the world, visits friends after school ......as well as her schoolwork and homework. She doesn't have to catch a school bus at 7.30am and stand all the way to school, carry a heavy schoolbag and use many flights of stairs. She missed most of her first year at school, and has only coped because she was ahead in her work when she first started secondary school. The school promise all sorts of help that is not forthcoming and the only home tuition offered was 2 hours a week! and that was before the cuts in such things. All a bit fraught. Quote Link to comment Share on other sites More sharing options...
Valkyrie Posted December 7, 2010 Share Posted December 7, 2010 Redicerous. She can't carry heavy bags like that. No child should have to. @ the stilettos - you can't help but admire her enthusiasm! Quote Link to comment Share on other sites More sharing options...
Sheilaz Posted December 7, 2010 Share Posted December 7, 2010 I was thinking three weeks and typed two, you know what it's like! What strikes me is that L. has full time education with the Internet School, instead of the very limited part time attendance with added injuries in mainstream. Which leaves time and strength for social life too. Mum has done so well in achieving this , and is the best placed person to see what's good for her daughter. The physios will want patients to aim high in the options available, but parents can make an informed choice, which may or may not include mainstream school later on, I don't see the need to rush it right now. Shopping in London is all part of the experience. Quote Link to comment Share on other sites More sharing options...
Lesley Posted December 7, 2010 Author Share Posted December 7, 2010 They love shopping - they don't get it from me! I can see their point when they say that she has to stay strong and then should have fewer injuries and therefore should be back at school but I feel that their priority should be her physical condition and the choice of education should be separate and a matter for her parents - like you say, they are best placed to make that decision. One parent has already been told that she will be reported to Social Services as her child refuses to go to school. L i recievinh a good education so they can't threaten that but they need things to go smoothly as L has to go back for another 2 week course in the New Year. Quote Link to comment Share on other sites More sharing options...
sari Posted December 8, 2010 Share Posted December 8, 2010 That sounds like an empty threat, as obviously children can be homeschooled, either following the National curriculum, or as I think it says. a broad based wide ranging curriculum. I looked into homeschooling for my youngest, but she'ssettled at the school now, and doing very well...surely they can see the internet school is the best option....grrr Quote Link to comment Share on other sites More sharing options...
Egluntyne Posted December 8, 2010 Share Posted December 8, 2010 Love the stilettos story and am delighted to hear that she is making progress. Surely it is up to her parents to decide whether or not she is home schooled? Like you say, the 2 issues should be completely separate. Quote Link to comment Share on other sites More sharing options...
Seagazer Posted December 8, 2010 Share Posted December 8, 2010 I can't understand why they would insist on her going back to mainstream school. If she's happy with the internet school and it sounds like she's having lots of contact with other children then I can't see what the point is. I thought it was funny at the idea of Lauren on stilettos, I think you'd all be at the thought of her wandering around on them. Quote Link to comment Share on other sites More sharing options...
Cate in NZ Posted December 8, 2010 Share Posted December 8, 2010 Hi Lesley, I've not been around for absolutely ages so just catching up with this thread. No opinions at all to offer re schooling apart from the fact that I believe that an education, in whatever format it comes, is a good thing to have. If internet schooling works for Lauren at this stage in her life and health then good for her, I'd say go with whatever works for her, gets her motivated, interested & learning. It may all change in the future...or it may not, but as long as she has good basic education she can build on it in the future. So good to catch up with what's happening for you all, it sounds like it's been a tough time for you all, but as usual you're able to report on it with fortitude & humour. I hope this course goes well for Lauren. It sounds like a really positive move after all the hemming & hawing & endless dislocations, so hopefully this is the start of a really positive future for Lauren. Thinking of you all. x Quote Link to comment Share on other sites More sharing options...
Lesley Posted December 8, 2010 Author Share Posted December 8, 2010 Thank you all - it's so nice to receive your comments. We were all wondering if we were being particularly difficult. The thought of Lauren wearing stilettos terrifies me - it will be 8 years on Friday since I slipped on black ice and dislocated my knee joint. I've had to give up wearing heels as my knee is just not stable enough. Apart from that, Lauren is already taller than me and has taken to patting me on the head Quote Link to comment Share on other sites More sharing options...
