chickencam Posted July 27, 2011 Share Posted July 27, 2011 Positive vibes for you all. Quote Link to comment Share on other sites More sharing options...
Purplemaniacs Posted July 28, 2011 Share Posted July 28, 2011 Best wishes from East Northants too. Chrissie Quote Link to comment Share on other sites More sharing options...
Lesley Posted July 28, 2011 Author Share Posted July 28, 2011 Thank you all OT sent a shower chair yesterday - it was massive and would need a hospital sized shower for it to fit........and my daughter has an inbuilt seat in their shower anyway...........but it's upstairs The chair had to be sent back. Lauren had her usual physio visit as well yesterday and she wanted Lauren to try the stairs using one crutch - Lauren managed to get to the top and then her shoulder came out. The physio had to put it back in at least 10 times and then Lauren's thumb spontaneously dislocated as well - back into the realms of ' you couldn't make it up' It took both the physio and her Mum to relocate the thumb and hold it in position, fighting against the muscle spasm that tries to pull it back out.......that took half an hour. Not nice for Lauren, although she's used to it, but it's sooooooo good when one of the healthcare professionals witnesses what actually happens - spontaneous dislocations without any trauma are difficult to believe unless you've seen it happen. This morning she managed the stairs without any mishap and she's taking quite a few steps as well. She has a follow up appt. at Birmingham Hosp tomorrow. She won't be using the wheelchair soon (until the next time, or for long distances - and at the airport to go on holiday etc.) but we had fun today...........we pimped her wheelchair I'd ordered a foam cushion and we bought fabric and paint........Jake pimped a wheelbarrow Quote Link to comment Share on other sites More sharing options...
Olly Posted July 28, 2011 Share Posted July 28, 2011 Wow - what a fabulous wheelchair - and what a wonderful gran you are to organise that. I hope that cheers her up a bit, and that she soon gets a bit more mobile. Quote Link to comment Share on other sites More sharing options...
The Dogmother Posted July 29, 2011 Share Posted July 29, 2011 That wheelchair looks lovely Lesley, and more positive news re Lauren's mobility too Quote Link to comment Share on other sites More sharing options...
Purplemaniacs Posted July 29, 2011 Share Posted July 29, 2011 The wheelchair looks amazing Chrissie Quote Link to comment Share on other sites More sharing options...
Chook n Boo Mum Posted July 29, 2011 Share Posted July 29, 2011 Good news about Lauren's improvements...........and the unexpected "bonus" if it can be called that, of the physio experiencing first hand what your family do everytime a shoulder etc dislocates of it's own free will Love the pimping too Hope all goes well at the hospital today xx Quote Link to comment Share on other sites More sharing options...
Lesley Posted July 29, 2011 Author Share Posted July 29, 2011 The little madam took the wheelchair with her to B'Ham today but decided she wasn't using it - she was going to manage on her own !! I'm glad she didn't need it though She had a really good appt. with the OT, Physio and Rheumatologist at B'Ham - very understanding and explained all about pain and how doctors don't understand unexplained pain - they said the fact that the MRI doesn't show any damage now doesn't mean that there isn't severe pain and said it's like a person with severe migraine having a scan - the pain won't show but it is there. They explained about 'pain amplification' - if someone is in near constant pain it causes changes in the brain which mean that the brain is always anticipating pain and reacts very quickly as soon as there is pain and amplifies it so that the pain is severe straightaway. So often doctors have implied that Lauren must be lying but the rheumatologist says they get this all the time with people who are referred to her. L can attend the Pain Management Clinic whenever she decides she'd like to start. All the physio for strengthening muscles can only have a limited effect without understanding how best to manage her pain in a way that suits her best so she really needs more of the intensive physio as well as her weekly physio and once a week pain management clinic. Quote Link to comment Share on other sites More sharing options...
Ain't Nobody Here Posted July 29, 2011 Share Posted July 29, 2011 That sounds more positive . At last, someone who "believes" her . Loving the wheelchair . Quote Link to comment Share on other sites More sharing options...
ClaireG Posted July 29, 2011 Share Posted July 29, 2011 Im so, so pleased her appointment was a positive one Lesley It must make a huge difference to Lauren knowing her pain is believed. Quote Link to comment Share on other sites More sharing options...
chickencam Posted July 29, 2011 Share Posted July 29, 2011 Fingers crossed that things are on the up again for you all. Quote Link to comment Share on other sites More sharing options...
Lesley Posted July 29, 2011 Author Share Posted July 29, 2011 We've got a 2 week slot until hormones kick in again Quote Link to comment Share on other sites More sharing options...
Sheilaz Posted July 30, 2011 Share Posted July 30, 2011 .......She had a really good appt. with the OT, Physio and Rheumatologist at B'Ham - very understanding and explained all about pain and how doctors don't understand unexplained pain - .....L can attend the Pain Management Clinic whenever she decides she'd like to start. All the physio for strengthening muscles can only have a limited effect without understanding how best to manage her pain in a way that suits her best so she really needs more of the intensive physio as well as her weekly physio and once a week pain management clinic. Lesley, I've been longing to hear of progress like this, I'm sorry it's been such a long time coming. What a successful appt. at last, that's great news. Wishing Lauren the very best in this being a big step in the right direction. Love to all xx Quote Link to comment Share on other sites More sharing options...
AnnieP Posted August 3, 2011 Share Posted August 3, 2011 Hi Lesley As you know, I don't pop on here much these days, but whenever I do, I always make a beeline for this thread. Poor Lauren, she really has been through it, and you all too, for supporting her so well. It must be exhausting. Glad to hear her last set of appointments were positive, and I love the wheelchair. Very trendy! Fingers crossed for a continued spell of good news from you! xxx Quote Link to comment Share on other sites More sharing options...
Lesley Posted August 3, 2011 Author Share Posted August 3, 2011 Thank you - I daren't say more than that....... Just a dislocated thumb recently.......walking improving all the time..... Quote Link to comment Share on other sites More sharing options...
Lesley Posted August 8, 2011 Author Share Posted August 8, 2011 Lauren had a follow up appt. with the OT at GOSH today. It was a very fruitful appt. and GOSH are happy for Lauren to be seen in Birmingham for the pain clinic and physio etc. She now has ring splints for all her fingers to stop them bending back the wrong way. The OT has another patient about the same age as Lauren who is experiencing exactly the same problems - so she is going to put them in touch with each other. She's walking quite well now and we're hoping to make it to the craft centre on Wednesday....she's not been able to have her birthday present from us yet - a craft session was booked for January but she's had so many dislocations that we haven't been yet. Quote Link to comment Share on other sites More sharing options...
Chook n Boo Mum Posted August 8, 2011 Share Posted August 8, 2011 Tentative and {{hugs}} to you all Lesley.............and fingers crossed that Wednesday arrives and passes without mishap Sha x Quote Link to comment Share on other sites More sharing options...
Lesley Posted August 8, 2011 Author Share Posted August 8, 2011 Thanks Sha - and keep for the next couple of weeks as they're due to go on holiday next Monday......... Quote Link to comment Share on other sites More sharing options...
Ain't Nobody Here Posted August 8, 2011 Share Posted August 8, 2011 That sounds positive . Great that she's found someone her age who knows exactly what she's going through - I hope they become friends . Quote Link to comment Share on other sites More sharing options...
Chook n Boo Mum Posted August 8, 2011 Share Posted August 8, 2011 Thanks Sha - and keep for the next couple of weeks as they're due to go on holiday next Monday......... I shall cross everything crossable too Quote Link to comment Share on other sites More sharing options...
Egluntyne Posted August 9, 2011 Share Posted August 9, 2011 Your latest update sounds encouraging. I hope they can get away. Quote Link to comment Share on other sites More sharing options...
Valkyrie Posted August 9, 2011 Share Posted August 9, 2011 Haven't touched base for a while - and sorry to hear Lauren is still having problems. Hope the splints work and yes - trouble free for the holiday! Getting in touch with someone in the same boat sounds good - they can jolly each other along. Quote Link to comment Share on other sites More sharing options...
bluekarin Posted August 12, 2011 Share Posted August 12, 2011 Well, two good pieces of news this week 1 Bath hospital has accepted they'll do the funding for Bria to see their specialists (I naively didn't think we'd need to do anything like that) and 2 She has got through to the next round in the Olympic Torch carrying nominations. She'll find out in the week beginning 5th December *bitesnails* Other than that, she is still crawling around on her knees and can't walk and is in pain. So really, she has got worse. I so hope the waiting list isn't too long..... she is getting better on her mini bike we got her to help put some muscle back into her calves. Baby steps and all that Quote Link to comment Share on other sites More sharing options...
Ain't Nobody Here Posted August 12, 2011 Share Posted August 12, 2011 Hurray for the good news . So sad to hear what your poor girl has to cope with though . Quote Link to comment Share on other sites More sharing options...
Lesley Posted August 12, 2011 Author Share Posted August 12, 2011 That's excellent news Karin I hope her knees don't have to cope for too much longer - it must be a dreadful strain on her whole body Quote Link to comment Share on other sites More sharing options...
