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Saturday 16 Dec 2017
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Spring 2011 PDF Print E-mail
Written by Sally Fletcher   
Thursday, 10 March 2011 07:39
So much has happened this year already. Happily Ben is progressing well with his catheter and now it rarely even seems to pinch him when it goes through his spincter.  Later this month his carers are due to learn how to use it.  This is working so well that it seems un-necessary for mitrafanoff surgery.

We also finally found an antibitoic that keeps his urine infections away without giving him the severe diahorreah side affect that he was getting, it Nitrofurantoin, he takes 5mls at night and has not had an infection since - hurray!Laughing

We have had a reasonable winter compared to some old ones thanks again I am sure to "The Vest".

Late last year Ben had a circumcision, cystoscopy, urodynamics and ultrasound, things seem to have improved in our hospital and the doctors and nurses were listening to me - thank you.  They have also made a change so that when we go into hospital now they don't take all our meds away from us which is much better.

In January I went to the school of nursing to chat to some students from a parent's perspective, anyone who knows me will tell you I am no public speaker but they listened very graciously - thank you.

I pushed our PCT to reasses Ben's care package because we were not getting what we should have and continually struggling with days without cover and myself doing the rotas and all the organising without an end in sight.  Our care package is now being managed by a specialist company Invent Healthcare, a nurse co-ordinator is managing the package for me and taking care of all the staff issues, rotas etc.  It's in the early days but seems to be going well.

I know taking control of your care package yourself seems to be the trend and I do believe people should have the choice but ours is so intense and I don't want to be Ben's care manager, I want to be his Mum.  I don't do change well and knew that it would get worse before it got better, it did and it is.

I turned 37 yesterday, each birthday now I never fail to think of my 29th birthday, the first one Ben and I shared together, I was very tired, had the post natals but underneath that knew that I had everything I ever really wanted, after years of hard work and waiting I was on track to where I wanted to be.  Just a month later everything fell apart, our life was never going to be what I had planned.

Ok so that sounds like terrible self pity when Ben is the one who fights Canavans and I am really fortunate to have spent 8 years with our beautiful boy, so don't I have everything I ever really wanted anyway?  Life does go on, you just get on with it, but somewhere deep down I never stop mourning it, I wish I could.
x
Last Updated on Friday, 11 March 2011 07:04
 
December 2010 PDF Print E-mail
Written by Sally Fletcher   
Thursday, 23 December 2010 21:33
Thank goodness I got ready for Christmas early!  We've had a horrible cold/throat/virus thing in the household for weeks and also the boys caught a sickness bug.  The staff have been ill too so in the last fortnight I've spent 4 days completly alone with the children which is really hard going with all 3 of then ill and me too.

In early November I learned how to use a catheter, despite dealing with tube feeding I found the thought of this quite horrific and felt shocked that I would have to do it.  Thankfully it wasn't as bad as I feared in that it just gives Ben a pinch each time and not a huge long pain like I have seen him in when it had been done in hospital as an emergency, we are seeing how this goes for Ben but have been looking into the possibility of mitrafanoff surgery, currently I am the only person able to assist Ben with the catheter which I am doing every 3 hours during the daytime if he has not passed urine, too keep him comfortable and every night attaching him to a bag at bedtime so that he can drain freely overnight and hopefully reduce the size of his bladder which is large.

Ben has been really tired for weeks now and I find this worrying.

Ben's bedroom is still not complete but he is booked to move back into the week after Christmas, the builders and Ady have been working really hard to get it done for him and I can't wait to move him in.

Wishing everyone a happy and healthy Christmas 2010
Sally x
 
Shopping Ideas! PDF Print E-mail
Written by Sally Fletcher   
Saturday, 02 October 2010 13:56
I have been having fun this afternoon hidden away in the spare room sorting out all the Christmas presents I have already bought!  I love Christmas but I like to get all the shopping done and out of the way because December is always so busy and then I can just enjoy it.

Any way I have bought Ben a Lots-O-Huggin Bear. Ok so it's a pink bear, but it has a male voice, strawberry scent, ticklish feet, says lots of funny things and will even answer your voice when in interactive mode.  I can't wait to give it to him, I am so enjoying my second childhood!

I have also bought Ben some scratch and sniff books from sensorytoywarehouse.com  ,a star shaped light from Homebase and a talking Shrek from Tesco.  I have ordered him a new back to front coat from Rackety's ready for some winter weather.  Yes I am getting ahead of myself but I prefer it to chasing my tail.  I also noticed that Next have got some great monster feet slippers in again this year, they velcro up the back making them easy to get on and they're really cosy.

Happy Shopping
Sally x
Last Updated on Saturday, 02 October 2010 14:01
 
Summer drawing to a close and urinary problems PDF Print E-mail
Written by Sally Fletcher   
Thursday, 30 September 2010 19:47
It's been the third summer in a row when unfortunatly we have had reduced care hours due to staff illness so I feel likes it's come and gone and we've missed it again.

We didn't get out very much with Ben who has had lots of problems with urine infections, including one incident when we had to call am ambulance because he was in the worst pain I have ever seen and we couldn't get him into his wheel chair for me to drive him in the car.

He's waiting now for kidney ultrasound, cystoscopy and urodynamics, I hope this will shead some light on his inner plumbing!

Ben's new extention is progressing well, gratefully we have received a grant from our local council, although it only covers about 1/4 of the work needed.  Hopefully in about a month's time he will be moving back in.

Best wishes to all
Sally x
 
Parents short break PDF Print E-mail
Written by Sally Fletcher   
Sunday, 01 August 2010 13:53
For our 10th wedding annaversary Adrian and I had a fantastic night away at Adlards in the country http://www.davidadlardcookeryschool.co.uk/?page_id=157 a lovely B&B run by our favourite local chef.  It was great to have a special meal in lovely surroundings and then stagger upstairs to bed!  Being me of course I looked forward to this break and then missed all the children terribly and looked forward to going home!  I would highly recommend it as a special treat!
 
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