Lesley Posted July 21, 2010 Author Share Posted July 21, 2010 (edited) She's always 'just shot up' Snowy - you should see her Reception Year photo - she was taller than most year 2s ....and when she was going through the 'terrible twos' people used to really look at us for allowing what they thought was a 5 year old to behave so badly - another case for a T shirt saying "I'm only 2" Edited July 21, 2010 by Guest Quote Link to comment Share on other sites More sharing options...
The Dogmother Posted July 21, 2010 Share Posted July 21, 2010 Wooo, she's waaaay taller than me now! Quote Link to comment Share on other sites More sharing options...
Lesley Posted July 21, 2010 Author Share Posted July 21, 2010 Everybody's taller than you Clare Quote Link to comment Share on other sites More sharing options...
henriette Posted July 21, 2010 Share Posted July 21, 2010 Everybody's taller than you Clare I bet I'm not ! Really nice photos Lesley - Lauren looks so happy. What a star she is Quote Link to comment Share on other sites More sharing options...
The Dogmother Posted July 21, 2010 Share Posted July 21, 2010 Everybody's taller than you Clare *tuts* Quote Link to comment Share on other sites More sharing options...
Ain't Nobody Here Posted July 21, 2010 Share Posted July 21, 2010 Lovely photos - what a pretty girl she is . Quote Link to comment Share on other sites More sharing options...
Helly Welly Posted July 21, 2010 Share Posted July 21, 2010 Well done to Lauren, her uniform is really nice. It's great that she likes the internet schooling, if it makes her happy then she should definitely stick with it. Has she another way of being social with her friends? Quote Link to comment Share on other sites More sharing options...
Lesley Posted July 21, 2010 Author Share Posted July 21, 2010 She made some friends when she first started secondary school and still sees a couple of them and she has a lot of sleepovers. She was going to Guides but it became too difficult when she was in plaster all the time. She's really enjoyed going to school for lunch and last lesson but I suppose the school don't like being used as a social club She is a very good swimmer but a large pool on open swim days is a bit fraught - she's had her shoulder kicked out by a las turning at the deep end and also just be turning herself so she's going to start at a small pool next week but the social side of that will be limited. She has lots of Skype chats (with webcam) with her Internet schoolfriends who live all over the world. Any other ideas? Quote Link to comment Share on other sites More sharing options...
Lesley Posted July 21, 2010 Author Share Posted July 21, 2010 Forgot to say - she also now has a gadget for helping her get her socks on and one for doing up buttons - she still struggles with putting her underwear on but can usually manage the rest on her own now . Quote Link to comment Share on other sites More sharing options...
Chook n Boo Mum Posted July 21, 2010 Share Posted July 21, 2010 It must be so frustrating for her to have to learn to do all these simple actions again bless her Sha x Quote Link to comment Share on other sites More sharing options...
Lesley Posted July 22, 2010 Author Share Posted July 22, 2010 I was hoping there might be a gadget for getting your knickers on when you have a bad back - she said she'd ask the OT Quote Link to comment Share on other sites More sharing options...
Lesley Posted August 23, 2010 Author Share Posted August 23, 2010 Another update..... Lauren has had a good few weeks without injury now and has been working hard on her physio exercises. She has been on holiday for two weeks and swimming every day - they returned in the early hours of this morning and was off at 10am to go and see the specialist in Oxford. This time the hospital had made the appointment with the right person.....a specialist in shoulders and physio for shoulders. She took one look at Lauren as she entered the room and said "Do you think your shoulders are level?" She then demonstrated on a skeleton just what is wrong with Lauren's shoulders - at last When Lauren's arm moves her shoulder blade doesn't - it should. Because it doesn't move then it pops out all the time. Her brain thinks it is moving so she now has to train her muscles and her brain so that things move correctly, she will be given very specific exercises and the prof. will contact Lauren's physio. This mis-alignment is what has been causing the back pain and headaches. It is part of the EDS but is separate from the laxity in her shoulder joint. The Prof. was really pleased that Lauren has been referred at a young age and also that Lauren has never been able to pop her shoulder back herself - the more a person does that the worse the problem will become. A lot of EDSers pop their joints back without medical intervention. She has an appointment with the paediatric consultant in Nuneaton tomorrow but they also came home to an appointment for Lauren to go to Birmingham Children's Hospital at almost the same time as the one in Nuneaton - that's had to be cancelled and will be re-arranged.......that one is for the POTS and blood pressure problems. Although the wheels of the NHS have ground very slowly we cannot fault the level of care she is receiving now. The last few days of their holiday were rather fraught and Lauren was in a lot of pain - it will probably be the last holiday without taking a wheelchair. Quote Link to comment Share on other sites More sharing options...
Olly Posted August 23, 2010 Share Posted August 23, 2010 Gosh - that all sounds very positive, glad to hear that you are getting somewhere - and then I got to your last sentence which is very sad. I do hope that the physio and exercises will start to help. Quote Link to comment Share on other sites More sharing options...
Snowy Posted August 23, 2010 Share Posted August 23, 2010 I agree with Olly I really hope they can do something to help her xx Quote Link to comment Share on other sites More sharing options...
Egluntyne Posted August 24, 2010 Share Posted August 24, 2010 Good to hear that she has had a better few weeks and that at long last you seem to be getting somewhere with the NHS. Quote Link to comment Share on other sites More sharing options...
Lesley Posted August 24, 2010 Author Share Posted August 24, 2010 Sorry - it wasn't meant to be a sad statement............more of a positive. L's parents are finding some things harder to take on board and I suppose they are hoping they won't happen or will change whereas having been through some aspects myself I can see the benefits of using the wheelchair when it's needed. OH and I have hired one a couple of times when we've taken her to museum type places and it means she can use it as necessary and concentrate on what we're doing rather than having to concentrate on the pain. She headed straight for the trampoline last evening We tried hard not to say much apart from "be careful" but none of us fancied a trip to Warwick in between the Oxford and Nuneaton appointments Every little bit of normality is important! She didn't stay on for long. Quote Link to comment Share on other sites More sharing options...
ClaireG Posted August 24, 2010 Share Posted August 24, 2010 I'm so glad things are looking more positive and hope the appointments go well Quote Link to comment Share on other sites More sharing options...
henriette Posted August 24, 2010 Share Posted August 24, 2010 It would be very easy to say "Why didn't they find out about the shoulder ages ago" but no point. It is positive news though Lesley and lets hope that with time Lauren manages to be relieved from some of the pain. You are absolutely right about a wheel chair. She will at least have the choice of using it or not. Lots of hugs to you all. Quote Link to comment Share on other sites More sharing options...
Sheilaz Posted August 24, 2010 Share Posted August 24, 2010 Lesley, this is the update I've been hoping for. At last Lauren is getting the most appropriate medical attention, it's so important and will make such a difference. I'm delighted about the holiday and swimming, and about the time without daily injuries. The condition is rotten, but the support seems to be coming together, and as a family you are all marvellous. Your update was encouraging and also informative, you explain things very well. All the best. xx Quote Link to comment Share on other sites More sharing options...
Helly Welly Posted August 24, 2010 Share Posted August 24, 2010 It's great that she's now getting specialist help. The use of a wheelchair isn't necessarily a bad thing, it means she can rest when needed so that she can still do the fun stuff. I used to get some strange looks when i'd stand up out of my chair, especially in shops. You learn to say loudly, "it's a miracle, i can walk" Quote Link to comment Share on other sites More sharing options...
Lesley Posted August 24, 2010 Author Share Posted August 24, 2010 I think Lauren could soon get the hang of that I forgot a bit - there is also the appointment at GOSH at the beginning of September, just an assessment I think.....seeing your name ,Helen, reminded me. Quote Link to comment Share on other sites More sharing options...
Helly Welly Posted August 24, 2010 Share Posted August 24, 2010 I think Lauren could soon get the hang of that I forgot a bit - there is also the appointment at GOSH at the beginning of September, just an assessment I think.....seeing your name ,Helen, reminded me. I remind you of hospitals Only joking!! Quote Link to comment Share on other sites More sharing options...
Lesley Posted August 25, 2010 Author Share Posted August 25, 2010 Only GOSH - if that's any help!! - I know you had an assesssment there. Quote Link to comment Share on other sites More sharing options...
docsquid Posted August 25, 2010 Share Posted August 25, 2010 Lesley, I'm so pleased that Lauren is now getting the proper expert attention, and problems are being sorted rather than being allowed to get worse. That is fantastic news about her shoulder, and I think the wheelchair is a great option - it isn't a failure to use it - used well, it should be a positive step, and help her independence, rather than hinder it. Quote Link to comment Share on other sites More sharing options...
The Dogmother Posted August 25, 2010 Share Posted August 25, 2010 That's more positive news Lesley I like docsquid's attitude to the wheelchair - I know that your SIL has been worried about it. Quote Link to comment Share on other sites More sharing options...
