Hello I am sorry for no recent updates but things have been very hectic!!  I do have a lot of news but I need the time to tell you all so hopefully it will be soon!! 

We are very very excited because this weekend we are having our first SDR party!!!!  It is in Daventry and 2 physiotherapists are coming over from the USA to spend the weekend with us, what an honour that is!!!!  We have 38 families attending 27 post op and 11 preoperative!!! It will be great and we have a few things planned so I will try and update soon, as I know I am terrible at keeping the website updated!!

We went to Croatia for christmas again this time as we fancied a break, we really wanted to go to Tenerife to see my brother but unfortunately the airfares were too much!!!  The snow was awful wasnt it!! We flew on the Sunday and couldnt believe that we actually got there!!!!  Charlotte had a lovely time, pushing her baby around everywhere and helping mummy get the decorations up.  She was very excited about christmas this year!!
Our friends John and Guanita invited us for christmas they live just upstairs so good falling distance if you have too much croatian vino!!!  We had a lovely time and thank them for all the lovely food they prepared for us!!!  The weather was good and we got out a lot in the fresh air every day!!
Charlotte was even more excited when she got home as Father Christmas left presents at our house and Nannies house!!!! 

A few families met months ago before they travelled to St Louis and it was wonderful to meet up after speaking to each other so much via email or on the Facebook Group.
We decided that it would be good to have a big party especially for Christmas, well everyone is always very busy in December so it has been arranged for 29th Januarly 2011 in Northampton.  Northampton because it is the kind of most central point for a lot of us and allows equal travelling!!  Everyone is very welcome.  Anyone thinking of going to the USA for SDR, who is booked to go or has been, it will be a time for celebration and to give hope to others.  
If you would like any more info please message me on here, go to the SDR group on Facebook and contact Sharon Branch or email me on kimedwards18@hotmail.com 
If anyone can help with some donations of toys for the children please also contact me, we would love to be able to give them all a christmas pressie!!  We will also need some raffle prizes etc as well.  Thanks. 

In answer to the above question yes it has all been worth it.  The main factor in Charlotte having SDR surgery is that she is now free from spasticity and the pain and damage associated with it.  The walking and movement is a bonus for her every day.  We are aware that her walking pattern may not be the best at the moment and we know that she will need some orthopaedic surgery soon but we always knew that this may be the case.  Dr Park has been honest with us through the whole process and discussed all other options of treatment available for Charlottes condition.  It is a shame the NHS did not do this.
Something that bothers me very much is the lack of support the NHS gives us in relation to SDR and other families looking into the operation.  When we first went to see Charlottes paediatrician and her physiotherapist we were met with hostility and rudeness.  Our GP had been supportive but the staff at Poole Hospital were a total disgrace.  The Dr told us that we were very 'fortunate' to be able to afford to take Charlotte to the USA.  She told us that Charlotte should have had botox first before even considering SDR, when questioned as to why we had to travel all the way to Bristol when it was available at Poole hospital and Southampton, she replied 'well its not as far as going to America is it'.  The physiotherapist told us that they would offer us twice weekly sessions for 6 weeks post SDR - but only if Charlotte was compliant, she was 3 years old, she was a CHILD.  I complained to the hospital and requested Charlottes notes.  Well I was further horrified.  Charlotte was referred to as 'non-compliant' throughout the notes and descriptions of her being 'handled' and 'would not be handled today.  Words used to describe the treatment of animals.  If Charlotte was being a bit difficult the physiotherapist would just give up and stop the session.  The trouble was her physiotherapist at the time is someone who does not know how to engage with children, she lacks confidence and she is the ADULT in this relationship.  I was disgusted that someone could write such things about a child.  She was labelled all the way through and she was always treated as a 'disabled' child.  Following the meeting after the complaint we were given a different physiotherapist who is more experienced but sadly Charlotte is still not keen on physio and I put this down to the terrible experiences she had before SDR.  We also were given another consultant, not at our request like the physiotherapist - I wonder why??  The Dr has never faced us since that day even though she was at fault.  The orthopaedic consultant was also very against SDR he told us this was not a good option for us to take and it would make her very weak.  This expert Dr was the one who told us Charlottes hips were 'fine' on xray yet her right hip was 25% out.  Who do these people think they are?  Why should we have to put up with this? 
The biggest mistake the NHS has ever made is not telling families about SDR.  SDR is a fantastic treatment for suitable candidates and we should ALL be made aware of its existance.  This may sound like an attack on the NHS - well it is.  I am sick and tired of being fobbed off and lied to about my daughters care. 
Every week on the SDR group on Facebook a family is writing of the negative experinces they are having with the NHS when they apporach someone for help.  Drs are refusing to provide xrays MRI scans.  They are scaring families with horror stories and being nasty and rude just because we choose to do something better for our childs life that they cannot provide.  Well is is time for this to stop.  I have written numerous letters to MPs, health ministers and even the Prime Ministers but does anyone care - NO  The word is getting out now very much and lots of us have been on TV and in the press but it never seems to be enough.
So in answer to the question SDR is worth it the results for Charlotte have been amazing and I will fight all I can to help as many other children and families find out about this surgery.

There have been many families who have found out about this proceedure now in the UK.  A few of us have been on TV, in magazines and newspapers and the word is finally getting out.  I think by now or lets say by the end of the year around 50 children from the UK and Ireland will have had SDR with Dr Park.  This is an incredible number of children he has helped but how sad that we all have to travel so far and we were not told about this proceedure by Drs in this country. 
Back in the summer Dr Park performed number 2000 SDR!!!! on a little girl from the UK.  If you remember Charlotte was no 1900.  To celebrate there was a huge balloon race in the park near the hospital and lots of Dr Parks previous patients attended.  What a shame we were not there!!  It would have been wonderful to be there. 

SDR is sill not properly available in the UK.  The NHS claims that it is but it is a very dated proceedure with heavy risks and Dr Park used this surgery 20 years ago.  There are NICE guidelines and these are actually being reviewed at the moment.  If they say it is good to go ahead here then funding  needs to be found.  The aftercare required will need to be looked at in detail as most physiotherapists do not offer the amount of therapy that is required.  Most NHS physiotherapists have no knowledge of SDR at all but then they do not research it themselves either.  A few hospitals are interested in taking on the SDR proceedure and Simon Ford from the Henry Ford trust has been heavily involved with his local hospital trying to get this off the ground.  This will take time, money and a lot of effort and we are all trying so hard to bring this to the UK.

Well Charlotte started school in September and has settled so well.  She has assigned help and that makes it all much easier for everyone.  She went in to School with Stacey for 4 sessions before she left nursery and cried 3 times when I left her.  We went in for just an hour the Friday before she started and she said 'where is Stacey mummy??'  I had to explain that Stacey would not be with her anymore so when the Monday finally arrived I was dreading it!!  But in true Charlotte style she went on in and was absolutely fine no tears nothing!!!  It really helped having lots of friends from nursery start with her and as soon as she saw them she was off!!  The school is wonderful and very supportive and Charlotte now says 'go home mummy' when I take her in.
The best thing for all of us as a family is to see her come out of School just holding a teachers hand.  Mum and dad came with me to collect her in her 2nd week and we all had tears in our eyes watching her come out.  We always thought that she would be going to school in a wheelchair but thanks to Dr park and his fab team she is walking out!!  Thanks Dr Park we love you!!! xxx

Charlotte has continued to improve since her SDR surgery, it is hard to believe that it is a year ago now that she was accepted for this proceedure.  We were frantic with worry and what the future held for us and what was going to happen in the USA!  Well the difference now is amazing.  Charlotte can now
Walk independantly across a big room
Walk backwards a little such as if she is opening a door
Side sit
Tall kneel
Walk on knees
Cross her legs
Jump up and down holding onto something
Walk holding one hand
She is now trying to run (badly but trying)
Stand independantly for up to 5 mins which she could NEVER do!!!!!!
She is still stubborn and is not keen on her physiotherapy or stretching but most things Charlotte does in her day are forms of therapy.  We go to the park, go swimming, go for a walk, she pushes the shopping trolly (very dangerous keep away from us if you see us ha ha), she walks halfway home from school with her friends pushing her pushchair.  It is all movement and therefore therapy.  Her swimming is amazing now she has armbands on in deep water and kicks and swims and just loves the freedom of the water.  Something that would help Charlotte a lot is cycling but will she get on a bike? NO!!
We have also had some trying times in the past few months as well.  Charlotte has grown an awful lot and has had 2 significant growth spurts.  This causes her feet and legs to become tight again.  I must stress that his is NOT spasticity returning.  The bone grows faster than the muscle so the muscle gets tight and cannot keep up.  She started to tip toe a little in July just before our summer holiday, she fell a lot and her walking was terrible.  I went into panic mode even though we were told by the physios in the USA that this would happen.  She went into plaster casts for one week to stretch the muscles back and it worked wonders.  We then went on holiday for 3 weeks and swimming every day improved her strength dramatically.  Unfortunately its all happening again at the moment and she is growing quickly.  Dr Park reviewed her by video footage and says she will require some orthopaedic surgery to release the tendons and this will help her walking even more.  We plan to go back to see him in Feb 2011 so will see a Dr Dobbs as well regarding this as he does keyhole surgery and works very closely with Dr Park.  I have lost so much faith in the NHS and Dr Dobbs is operating on so many children following their SDR surgery with fantastic results that we know this is our next step. 
Charlotte is a much more confident girl now and copes well with things she could not before such as big groups.  Her speech has improved so much, we have wonderful conversations and she is very funny at times.  She remains a very happy girl but many of my friends have commented that since SDR she is a lot more relaxed and happy!!  All in all she is doing well.  We have to remember how bad Charlottes feet were before SDR and the chances are now she would have been in a wheelchair.  

Around the time of American Independance Day Charlottes nursery hosted a fantastic fundraising event for 2 weeks.  The children all made American Flags, iced biscuits with stars and stripes and they had Disney dress up days!!  There was a raffle and pick a state to win a prize!!  I provided the children with microwave popcorn!!  Asda provided tubes of smarties for the children to eat then fill up with coins.  The staff talked to the children about America and they focused on different areas but what was so lovely was they talked about Charlottes journey and why she had to go there!!  During this time David Fenton from South Today did some filming to update viewers of her progress.  I think the children really enjoyed this time and they all raised a huge amount of £670.  WOW!!!  Thankyou so much we are so very grateful to you all xxxx
At the end of July Charlotte left the Childrens House in preparation to go to school.  I was so sad!!  We could not have picked a better nursery for Charlotte and she could not have had a better keyworker Stacey.  Stacey knows Charlotte so well and has gone through our journey with us just as everyone else has who knows Charlotte.  We miss her so much.  Another person we lost at this time as well was Linda our portage worker.  Again a fantastic person who was put on this plantet to help children!!  Portage stops when children start school so July was a bit sad for us!!!

Hi Everyone
Firstly huge apologies for the lack of recent updates.  We have had a mad few months and so many families have gone to St Louis now from the UK and I have tried to support as many as I can.  Lots has happened so I will try to remember everything and break it all down into sections