Neighbour making formal noise complaint.

[ClaireG]

Phew, so glad it is broken.

[Seagazer]

That must be a relief

[Valkyrie]

When I used to play squash with my friend (oh those thin days - even played when I was expecting Ciaran) she had a huge lump on her shoulder as a result of slamming into a wall when in a competition. She didn't have any broken bones, but was told that the glands had come up to protect the damaged area. She had it for quite some time - although it didn't hurt, it just took time to go down. But she now plays a much more sedate game of golf nowadays.

[Lesley]

Thanks Koojie - that would make sense. She has got a lot of pain but it is getting better now. We need to superglue the sling on her though

 

If anyone ever comes across supersoft, ultra comfortable, front fastening bras suitable for a young girl, would they give me a shout? Something like a sport bra with a racing back to keep straps away from shoulders, no lace, smooth seams (she has this sensitive skin problam with anything that touches)

 

....... just don't try looking and using the word 'teen'

 

So far, all we have found are ultra tarty or very frumpy

[Helly Welly]

Thanks Koojie - that would make sense. She has got a lot of pain but it is getting better now. We need to superglue the sling on her though

 

If anyone ever comes across supersoft, ultra comfortable, front fastening bras suitable for a young girl, would they give me a shout? Something like a sport bra with a racing back to keep straps away from shoulders, no lace, smooth seams (she has this sensitive skin problam with anything that touches)

 

....... just don't try looking and using the word 'teen'

 

So far, all we have found are ultra tarty or very frumpy

 

Figleaves would be the best place to try, good customer service too. My most sensitive skin is on my shoulder blades, i have to be sooo careful just washing, let alone anything else, and the labels of clothes are a nightmare.

[Lesley]

Figleaves would be the best place to try, good customer service too. My most sensitive skin is on my shoulder blades, i have to be sooo careful just washing, let alone anything else, and the labels of clothes are a nightmare.

 

We know now - we've been dismissing Lauren's complaints for years .......and the fact that she finds luke warm water too hot My daughter uses Figleaves, I'll ask if she's checked there.

[Lesley]

Me again!

 

We were all at Warwick Hospital yesterday - all planned appointments though!

 

My son and I had our second geneticist appointment - he has EDS in a minor way but I do have EDS - the knowledge doesn't change anything but it does explain a lot of things. It also helps the geneticist have a clearer picture of what is happening to Lauren.

 

Lauren was there to have her wrists and shoulders checked - although the consultant thought he was only looking at one wrist She now has both casts off

 

Daughter and SIL had the meeting with Parent Partnership today and it seems that there isn't anything extra that we should be doing - all the available systems are slowly coming together. Trying for a Statement at the moment would probably fail as IDS (?) has only just started and then it would be 6 months before they could re-apply so they just need to wait to see what help, if any, will be offered. If they want to move Lauren to the other school then WCC will not fund a bus pass even though they currently fund one for her other school which is the same distance away

 

The school are holding a meeting about Lauren (and may be with IDS? - sorry, my brain doesn't hold all the info.) - then DD and SIL will be invited to a later meeting. Lauren isn't allowed back to school until the school have agreed how best to help her.

 

Since Lauren started secondary school last September she has not managed a full week and her attendance is still numbered in days.....very few of them consecutive. By the time this is all sorted out, Lauren will have missed her first year at school. As soon as she goes back to school she will become tired because of allthe walking and the five floors with no lifts. She is in constant pain and that combined with tiredness and vulnerability to further dislocations mean that even when she is at school she isn't in a good enough condition to be learning as well as she could.

 

DD and SIL have been looking at Internet Schools combined with a little bit of Home Ed. - I think this is the way they will choose. They have found a very good Internet School and Lauren wants to start tomorrow It would mean that even if she is in plaster/in A&E/on crutches.......she will be able to learn. Has anyone else used them?

[theherd123]

The Virtual College used to be linked to a think tank organisation I worked for, have a look for more info.

http://www.virtual-college.bham.org.uk/

 

I do hope there is a good home tuition service where you live as it sounds like Lauren may need it for some time.

[Lesley]

Thanks Em - I'll have a look.

[chickencam]

Best of luck with everything. It seems like a constant round of new challenges. You seem to face them all with a good humour that I hope we could all find given these challenges.

[Ain't Nobody Here]

Best of luck with everything. It seems like a constant round of new challenges. You seem to face them all with a good humour that I hope we could all find given these challenges.

 

Couldn't have put it better myself .

 

I take my hat off to you and your whole family .

[Lesley]

Thank you both

 

I can assure you that we have plenty of days where it's a case of ' if you don't laugh, you'll cry'

[Valkyrie]

I use that saying a lot - seems inadequate compared with everything that you have all had to deal with! Good luck to Lauren!

[The Dogmother]

Good luck with the schooling Lesley

 

I often wear racer back sport bras, just because they are more comfy. Try M&S as I get all mine from there.

[Guest]

Hi Lesley

 

I have been reading all your posts concerning Lauren and wish you all the best with Laurens future schooling, whichever road you have to take.

 

It would seem that some sort of home schooling would suit her much better.

 

I don't know why at secondary school they have to change classes with every subject. When most of the subjects could be taught in the same room. (Teachers changing rooms not pupils) I know others need to be in appropriate classes ie Science and PE etc.

 

They could then have lockers for school books etc and then not have to carry huge bags full of equipment. I know on a Monday, Harry has PE and Home Economics (I know this is the old name for it but I am having a bit of a CRAFT moment

(Can't remember a flipping thing) Probably to do with the lovely late birthday lunch I have just had and the bottle of Merlot

 

Anyway loads of hugs and kisses to Lauren and the family, I do feel for you all having loads of hospital visits.I do know what it is like. ( I have spent the last 3 weeks having to visit the hospital every day). Anyway hopefully that is the last I have to spend there apart form the odd check up.

 

God Bless to all of you and a solution will be forthcoming.

 

Love and best wishes

 

Debsxxxx

[Lesley]

I love the CRAFT moment - I'll have to try and remember that!

 

I hope you've finished all your hospital visits now Debs.

 

Claire - are the M&S version front fastening? - Lauren's shoulders would dislocate trying to get into a one piece.

[The Dogmother]

Yes, some of them are. If you have trouble finding ones that you like, then try Debenhams in Banbury; they had a good selection last time I looked.

[Lesley]

Thanks - we have Debenhams in Stratford so I'll have a look.

[Lesley]

Back again........Lauren had two glorious weeks without injury, without plaster casts and no crutches.

 

Gradually her parents started to relax and hope it was the end of that particular phase......she was allowed a little more independence. She was very keen to start cycling again and as they live in a cul-de-sac she was allowed to cycle in their road. Sunday evening she was cycling in the very quiet road where her friend lives when they collided..........Lauren didn't want to put her hand out as she knew it would result in a dislocated thumb and/or shoulder so she landed on her elbow

 

I had to take her to Stratford Minor Injuries on Monday as her elbow was stuck backwards - hoping we wouldn't have to traipse off to Warwick.......we didn't as her elbow was OK, just badly bruised. They managed to manipulate it so she could wear a sling but the sling didn't last long as they hurt the opposite shoulder

 

Last night I had the phone call......"Guess where we are.....?" - Lauren's thumb hurt and when she eventually looked at it it was dislocated, she doesn't recall doing anything in particular....... My daughter took her to Warwick and they had a pretty speedy 2 hour session of X Rays and manipulation with the help of gas and air........back in a splint and a further appt. at the Fracture Clinic on Friday. They were back home by 10pm.

 

BUT.......on the plus side.....

 

.........Lauren has started Internet Schooling on a month's trial and is loving it It is ideal for her as she only has to worry about any current injuries and not protecting every vulnerable joint whilst in the school corridors or having to stand on the school bus etc. The lessons are also available as a Powerpoint (I think) presentation in the Lesson Library so if/when she misses a class she can still keep up. She will be able to do this on Friday when she misses her class to go back to the hospital. Her new classmates were so welcoming - they have a five minute online chat before classes start at 9.30 and they have a messaging section after school. She has a computer set-up with her headphones and all new stationery etc.

 

Despite having missed almost the whole of her first year at secondary school she is still a year or so ahead on most subjects. The only subject she will need help with is French - she has not studied French at all, only Spanish. I am going to sit in on her lessons this morning - double French - to see if I can guage what stage her classmates are at and see if I can help her to catch up at home. I have two teaching packs for children which I was doing with Lauren and Jake two years ago before we all went to France on holiday so they will come in useful.

 

Lauren's timetable covers five mornings and two/three afternoons and as Art isn't on her timetable I've found an online Art School which sounds interesting. Both she and Jake have been cooking along with me since they were able to hold a spoon so I'm going to do combined Art/Cookery lessons for Lauren. I'll set her 'homework' in the form of giving her a task such as telling her what we're going to cook. She'll have to find a recipe, print or write it out, sort out the shopping list for ingredients, cost it per portion etc. Then when I pick her up on Tuesday afternoons we will shop according to her shopping list, come back here and start any cooking which takes a long time, do an hour or so of art together and then go back to the cooking. Jake will come here after school and he can be chief taster (and he can cook the puddings!) Art and Cookery will build up into a useful folder.

 

We, as a family, weren't up to full Home Ed. and this seems an excellent compromise - it suits Lauren's situation perfectly. You thought she was smiley before - you should see her now! My daughter works from home and is working long hours at the moment, Lauren makes lunch for both of them - all round

 

I have to say that her school did hold a meeting two weeks ago - without parents - and then contacted parents to say that they would probably be able to offer that Lauren's classes were moved to ground floor rooms. It would take some time to set up and we're already at the end of April. It just takes so long for all interested agencies to get together that nothing is being done for long periods.....and still no co-ordinated work plan or work being sent home. I think the school have found it difficult to see the overall picture of Lauren's problems - they've treated each injury as a temporary thing much as they would if any child broke an arm for instance - consequently she has missed a whole year Not good enough really and the end result is too little, too late.

 

The battle still goes on.......some help with funding is sorely needed and it's difficult finding out what is available.......

[Ain't Nobody Here]

So glad she's had an injury free fortnight but sorry about the elbow and thumb .

 

The Internet Schooling sounds fabulous - what a fantastic resource . I'm so pleased she's loving it - the whole family must be feeling so much more positive .

[Snowy]

Good news about the internet school! Sounds like the perfect situation for Lauren, and full time home ed is very, very time consuming in terms of planning. This sounds great - wish I'd known about it when I was home edding James! Just to reassure you, lack of a 'school' education needn't hold anyone back - James will be going to university when he finishes his current college course

[Lewis]

Great for all of you!

 

Glad she's enjoying it, sounds like the perfect solution ... and you've found it in year 7 rather than later on

[ClaireG]

The internet school sounds great and just right for Laurens needs Good luck with funding. I wonder if the parent partnership people would have any suggestions on where to go for this?

[The Dogmother]

I'm sorry to hear that the remission wasn't any longer, Lesley.

 

Great news about the online lessons though; they sound fabulous and Lauren seems to be enjoying them too.

 

Rosie says 'hello' to her.

[Woodcat]

Hey

 

Slightly late i'm afraid but i actually have done home education/ internet school for health reasons. It worked brilliantly for me. There are a few organisations that are based around home educated children with discusstion forums for parents which could help you with your funding issue(i'm guessing the funding thing is for the internet school? ignore me if it's not ) I'll have a chat with my mother when she gets in and see how we got funding. Though in some cases the sanity level of some of the other members on the discussion forums can be called into question on the whole they can be quite useful.

 

If the kid involved is motivated enough then home education/internet school etc can work better than main stream. I was home educated from the age that Lauren is now and i'm currently working on my degree I'm really pleased it's working for her as school doesn't seem to be at the moment