It doesn’t get any easier.

Its been quite a while since we last updated this blog….there are so many reasons but the main one was that we had nothing to tell everyone and everything was sooo negative. I want to tell the truth but writing down all the negativity plus constantly feeling it, was so depressing… …

It is now 3 months since Yasmin had her hip operation and despite researching what was involved we did not appreciate how far this would set us back.  Yasmin is reluctant to take any weight through her right leg and it has been difficult to see when she would get back in the walker, let alone back to where she was before this op.  One of the outcomes is that her right leg is now 1 inch shorter than the other which will take much adjustment when she can take her own weight.  Yasmin has struggled with the rehabilitation and 3 surgeries in 1 year has taken its toll.  This has been by far the most challenging time of our lives so far.  With soooo much of her already limited independence taken away, Yasmin kind of gave up on her body…I don’t blame her for feeling that way!  It has been so difficult to fit in all the physio as Yasmin has also had to cope with the transition to a secondary school where she knows no one.  She considers physio to be a punishment and she just couldn’t cope anymore…neither could I.   

morning exercises !!

Although it could be said that she has done incredibly well to cope with the step up to secondary school while having so much else to deal with, we will need to find another way to get through life without killing each other.  A typical day would see us getting up at 6am and then dragging Yasmin out of bed at 6:30 for a swim.  Matt helped me get her into the pool then went off to work and Viki helps me get Yasmin out of the pool,  then on to the shower and ready for school, in an attempt to leave by 7:45.  After a full day at school she races home where she has 90 minutes of physio followed by dinner and then Homework.  Only if you have a child with a similar disability could you really understand the intensity of all this.  As a result we have had to reduce the amount we try to fit in to the day to the detriment of Yasmin’s rehabilitation but to the benefit of our sanity.

In an attempt to finish on a positive note we may just have seen the signs of progress over the last 7 days. Yasmin surprised me once again!!! She had a fantastic physio session with Anna and did some walking in the walker…10/15 steps…I haven’t seen her do this for over 3 months. Yasmin was happy and it might just have reminded her why she is doing the physio.  We have always battled with Motivation…What ever happened lets hope that it continues and Yasmin will get back to where she was before and maybe progress even more…

It is one hell of a VERY long slow journey but in between all the tears and anger we will get there…

As you know I have just completed my Trekking inNepal…and it was truly marvellous. I have come back refreshed and ready to carry on. The scenery was truley spectacular and the local people so kind and friendly. It was a fantastic challenge..not much sleep, leeches, discusting toilets but the walking, peolple and views made up for all of that a hundred times over .

Thanks to everyone that sponsored Sally and myself. 

- 4 degrees at night...slept with all our clothes on...

a little suntan after the days walk..

 

         Cheers Karen 

another river crossing..what would we do without our crocs

Getting into a routine

Well it’s been just over a week back home…it’s gone pretty quickly considering we’ve done nothing!!

I wanted to leave the hospital as soon as possible, believing that I had everything in hand at home. Well I was very much mistaken….our wondefull all singing all dancing toilet was impossible for her to sit on, her wheelchair was to small, sleeping in her bed killed her….and it was impossible to look after her on my own !!!!

Thanks to Gail…our NHS physio..she organised what I needed and all the necessary equipment arrived to the house the next day

The nurse come to the house to check Yasmins  incisions and to remove the dressing…Yasmin was slightly worried, but they were brilliant and removed it all with no pain. The scar looks fantastic…to be fair , it’s one hell of a VERY big and long scar ,but extremely neat and thin…whoever finished off was good at sewing !!!

Moving Yasmin around is a 2 man job….I was given a banana board to help do it on my own…what a joke, I nearly dropped her…thats been thrown away !!!! We have a great rotar…Viki is around till lunch and Matt comes home early afternoon…obviously I do all the shifts…..a bit unfair if you ask me…  It was  difficult at first but we have it down to a fine art now !!! The sun lounger has moved into the house…most comfortable for her…lifting the back when she wants to sit up.

Yasmin has had a few physio sessions in the week, plus I am doing some gentle physio with her. We got into the pool for the first time yesterday. It is all going to plan, Yasmin just has not to be soooo scared of falling. I need to get some info on different sort of exercises for the pool because this is the best type of physio for her…and if the weather would improve it would be much better… going out in the rain is no fun !!!!

Yasmin is getting out and about for an hour at a time…mostly going shopping…typical girl ! She is only managing to stay in the wheelchair for just over an hour but then needs to get out due to the pain…still not sure how she is going to manage school ???? We still have 2 weeks to get there.

I know Yasmin is fed up with not been able to get around and constantly needing someone to do things for her…she is normal very happy for everyone to run around her but this is different. You have been a real trooper !!!  

Cheers Karen

Oh…not forgetting…Happy Birthday Matt..as always his birthday falls during operation time , so we will go out when everyone is feeling better xxxx

Home Sweet Home

Hi everyone its Yasmin here.  The last 7 days have been a long trek felt more like 7 years.  The x-rays reassured the Doctors that my hip is now in the socket.  When they broke my leg and took some of the bone away they didn’t need to put that piece of bone in my hip like they thought they would need to…Yipeeee… but I can not weight bear on my right leg…Boohoo…   All the nurses were very nice to me especially the physio Fay, I really liked her but now I am home and seen my dogs I am a lot more chirpy and feel much better.  

 Thanks for all the support and good wishes.  Lots of love Yasmin xx 

Hi everyone its Sebastian,  it’s been a bit annoying while Yasmin has been in hospital because I was working around Mum and Dads change around times and felt like I had to help out all the time.  I know my sister is very brave and been through lots but I just want to tell you all that I am a Brown belt in Karate (random) lol

Dad here! After spending last year’s school holidays in St Louis Children’s hospital and this years in St Georges Tooting!  I hope we can spend next year’s on some far away island or cruise ship…Although it must be said that the staff were fantastic.  In previous Posts I have been quick to knock the NHS and some of the professionals involved with Yasmin’s care but on this occasion I have nothing but praise.  Yasmin was in theatre for 4 hours where they shortened the Femur to allow the Femoral head to be relocated in the acetabulum.  Femoral osteotomy is done when the upper end of the thigh bone needs to be tipped so the ball points deeper into the socket. The thigh bone often needs to be shortened when the hip is dislocated high above the socket. This allows the ball to be lowered down to the level of the socket without stretching the entire leg and all the soft tissues like muscles and nerves.

 We understand that the operation went well and the Doctors are happy with subsequent x-rays.  So a huge thank you to the surgeons, anaesthetists and all the doctors and Nurses that have been involved.  Our local physio Gail has been brilliant at getting us all the equipment we need in order to cope at home.

 We are under no illusions of how difficult the weeks and months ahead will be.  Yasmin is not allowed to weight bear for 6 weeks and with the difficulties she already had getting up on her feet, I’m afraid that the pessimist in me thinks it might be a year or more until we get back to where we were.  The optimist in Karen would probably hope to get back to where we were within 6 months so let’s hope she is right.  We are told that this operation should improve Yasmin’s function! I am sceptical because I never saw any evidence of the dislocation affecting her mobility.  In fact I questioned the point of this procedure and was told that as the dislocation gets worse it will tilt the pelvis which in turn will twist the spine ultimately making it difficult even to sit in the wheelchair.  So in summary we need to work against the elements to keep Yasmin’s body in shape regardless of the functional benefits. 

Karen did the majority of night shifts while we were in hospital and now Yasmin is home we are taking it in turns.  Yasmin’s legs need repositioning every hour so she will need one of us sleeping next to her for the next week or so.  It would be no exaggeration to say that 25% of Yasmin’s day revolves around toileting needs but I wont dwell on the difficulties associated with this aspect of our day. 

A typical day would see Yasmin needing help to transfer between 50 and 100 times, we will need to devise new ways of lifting her and this will be a two person job for the coming weeks.  We have worked hard to avoid Yasmin’s start at secondary school being disrupted I hope we can find a way of her coping when school resumes in early September!!! 

Thanks Matt

Update from Intensive Care.

Hi everyone its Yasmin here.

The Doctors put my IV lines in the wrong hand so I can’t really do anything so dad is typing this for me.  The operation went well I think.   I am much more awake than when I had SDR because I’m not having all the drugs because I have an epidural in my back which is making everything numb.  When they take it out I will get some morphine.

Thank you for all the good luck messages on face book and on here.  I just opened my earrings, THANKS PENNY.  Hope your all having a really good holiday and if you have time to send me a comment that would be really nice.

Lots and lots of love, hugs and kisses.

Yasmin xx

1 more sleep!!!!!!!!!

Hi There..it’s Yasmin here.

I will start with a big Thank You to all of you who have been reading my blog in the last year or so. it is very much appreciated.

  As many of you know I am going in for a big operation on my hip this week the 9 August , so I have been making the most of my holiday.

I went to the beach with Mum, my brother,Issy,Ted ,Lisa and Viki last week, it was great fun. I have had Lydia and Jess for a sleepover ,which was fun

 Gone shopping loads and done lots of cooking and baking with Dad.

Will update from the hospital.

Hope to see you all soon.

Yasmin xxx

p.s. wish me luck ,I’m scared

Attitudes are contagious, is yours worth catching?

We have come to understand that we will need to fight hard for Yasmin to be given the same opportunities as her peers.  Recent situations have really left us speechless and I am now more determined than ever to stick up for Yasmin’s rights.  I’m not sure if people’s attitudes are born out of ignorance, laziness or concern for Yasmin but they regularly read the situation wrong.

I understand that parents of disabled kids are sometimes referred to as “Warrior Parents”.  I am beginning to understand why!

Sports day turns out to be on Yasmin’s penultimate day at Junior school so I put it to her a week before the dreaded day, that it would be really good to leave the school on a high and maybe do the 100 meter sprint!!!  A challenge which she took up despite being incredibly nervous.  She returned from school a day later to say despite putting herself forward she had been told that she couldn’t participate.  Karen approached the school and persuaded them to reconsider.  Yasmin then came home a couple of days later and told us that they would be shortening the finish line for her!  Concerned that they were missing the point Karen and I went to the school to say that we didn’t want her treated differently to the other children in order not to lose the sense of achievement.  The discussion was very amicable and we agreed that she would complete the same distance.

On the day of the race Karen told me that she had just spoken to one of the staff members to confirm that the finish line wouldn’t be moved  who replied saying “We will see” before turning her back and walking off.    I could feel my blood boiling and when I saw the 2 staff members trying to open the walker, I used the opportunity of helping them to reiterate that the finish line was not to be moved.  I’m sure you will agree that there would not be the same sense of achievement if the finish line comes to you.  I made my feelings known and one of the staff members walked off saying she didn’t think Yasmin’s knees would cope with it.  At this point I thought it best to use the advice of her Surgeon (Renowned for being the best in the world) rather than her opinion, so I insisted.  I then watched nervously while she seemed to rally support amongst other staff members.

Unfortunately I was now in no state to enjoy the fantastic events that ensued.  I can however tell you that watching all of those children get behind Yasmin for what must have been nearly 5 minutes when all of the other runners finished within 15 seconds was emotional to say the least.  I remember hearing parents saying “Look at that determination” and “My goodness that’s fantastic” many including myself were trying hard to hold the tears back.

Yasmin definitely did something to make herself feel proud on the 20th July 2011 and I believe gave everyone the best lesson of the day.  She will have to fight hard for these opportunities.

Enjoy the video     http://www.youtube.com/watch?v=1BmUqtu6wsw

Thanks

Matt

Tough times ahead for Yasmin.

It’s been a while since last updating this blog, so definitely time for an update!

You will remember us changing the approach on how Yasmin attacked her daily physio but unfortunately we all got a little lax but luckily footsteps came to the rescue and Yasmin worked her socks off in the last session kick-starting us back into action.  The physios said it was the strongest they had seen her….Fantastic !!!  I was counting down the days in anticipation of her next 3 week session in August.  However things don’t always go to plan…

If you have been following the Blog you will know that we are now 11 months post SDR and there is still a long way to go in terms of Yasmin reaching her optimum level of mobility.  One of our concerns has always been her Hip and the speed at which it is dislocating.  We recently had some ex-rays and were concerned so see the extent of the problem and after visits to 2 separate specialists Yasmin is now scheduled to have the corrective procedure on the 9th August.  It’s a 3 to 4 hour operation which involves releasing the soft tissue around the joint then breaking the leg in order to reposition the ball back in the hip, at the same time taking a small piece of bone from the leg to increase the cup of the hip.  Plates will be inserted to hold the leg together and removed approximately 12 months later.  In short this is no small operation and there is no getting away from the fact that this is a setback.  She gets tougher and tougher and Yasmin will jump right back and try her hardest.

It’s been hard work and frustrating trying to schedule this in time to avoid it disrupting Yasmin’s start at secondary school.  Yasmin’s school attendance has rarely been much over 50% so to have kept up with her peers is a fantastic achievement but there is no doubt that it has taken its toll socially.

We are proud to share that Yasmin has missed just over 2 years of school in total and still managed to reach the national expectation for a child of her age in the recent SAT results.   On to sports day and Yasmin has decided to take part in the 60m sprint aiming to complete in less than 2 minutes.  Go Yasmin.

There will be lots to Blog about over the coming weeks together with a round-up from us on exactly where we are 1 year post op and Yasmin is keen to do a video. 

Thanks for remaining interested in Yasmin’s progress.

Karen and Matt