To clarify the amount of help we get,  our NHS physio comes to our house or to school once a fortnight or every three weeks (I personally think this is scandalous as he should be getting lots more help from the NHS – we have in effect saved our PCT an absolute small fortune over Toby’s lifetime and it is so shortsighted of them to ignore this) This is no reflection on our NHS physiotherapist, this comes from higher above – apparently as the operation is not sanctioned in the UK, there is no obligation to allow extra physio. 

And so we then have to pay for a private physiotherapist who comes 1-2 times a week.  Her input is invaluable.  The downside is that should she suggest anything that needs to be obtained through the NHS, I then have to apply myself or buy privately,  as she can not authorize any of the NHS budget to Toby.  I also perform physio on him every day after school and he is on his treadmill most mornings for 5-10 mins before school.

I have read that some parents have been able to manage on very little therapy input and do most of it themselves,  I personally would struggle with this.  I have always said it depends on the level of mobility prior to the operation that should determine the amount of therapy needed afterwards.  Toby was very tight and had limited mobility.  Some children who can walk well prior to the op, and  walk with issues such as tiptoe ect  will be back on their feet in no time at all,  other children who are more affected will need lots of extra help to optimize this amazing operation.  I personally am very interested in the mechanics involved in physio and to me it is important to know target muscle groups and be able to seek regular advise or suggestions from a professional.  I could not do without this although it does come at a price and the costs are very high.

Caroline is an absolute godsend to us,  she does over and above what is expected of a physio.  We have known her for over five years,  little Toby was first referred to her when she worked as an NHS physio in our area when he was 5 months old, after a few years she then left to gain further experience in Australia, and when she returned to the UK, we were just starting to look for a private physio to help when we came back from the States.  She has grasped her new role with gusto, and I get such a buzz to see her so excited at the changes in Toby.

Last week, she videoed him at home and took the video back to hers, she “still framed” it and watched every movement that Toby was making.  She then reported back to me what ere she thought we should be working on and where the most obvious muscle weakness issues were.

She also commented that he now has an  extremely good walking pattern, with good stride length and good hip rotation – all things that could not have been had he not had the operation. 

Yesterday, after school we had to pop to the shop, Toby wanted to walk holding my hand, and for the first time ever we walked along, swinging our hands and he held my hand for comfort and not for support.  Normally when we walk anywhere, I am “carrying” his weight through my arm as he pushes down for support,  sometimes at the end of the day, my arm feels a couple of inches longer from having been pulled so much.  It was rather reminiscent of when I used to walk around with Louis at that age.  Toby was tired, he had just finished a whole day at school, but he kept saying to himself “shall I just not think about how tired I am, and it will go away?”  He spent an age in the shop picking his sweeties – plumping for Mint Choc Aero balls, I knew full well this would be his final choice, but you cannot hurry a decision of this magnitude can you?!

I spent a lovely morning with a lovely lady last week,  she too has cerebral palsy and has had to struggle through life with the pains and discomfort that it brings.  Just to talk to someone who actually has the condition was such an enlightening time for me.  She explained that the tightness and the stiffness of the spasticity is so terrible and can be so painful, and as she has got older it has got worse and there is no respite.  She said that it was an amazing thing we had done for Toby, to rid him of this pain at such an early age and to spare him having to travel through his life with this continual burden is a great gift. 

I have spoken to other children with CP before, and it was not till I spoke to this lady that I realized it was an area that I had not even thought to explore.  Of course - speaking to adults who suffer from spastic diplegia gives you greater insight into the problems that can occur later in life, instead of just focusing on the here and now.  Adults can give you a clear and articulate description of how it feels every morning heaving yourself out of bed with tight dead -  weight legs, and the struggle to try and get mobility into them as the day goes on, the pain that accompanies cold weather and tiredness and illness – it was a very enlightening morning.

I know she reads this blog and she will know I am talking about her – so thank you,  it was an insight I had overlooked and a pleasure to speak to you.

We have the BBC coming around this week, to film some footage alongside Abigail (footsteps4abigail) to highlight the operation and they are doing an article on a little boy who is currently out in St Louis just having had the operation, they are focusing on Abigail as she is about to set off for the operation, and then looking at Toby who is 5 months post op. 

Abigail’s mum and dad have worked tirelessly to raise the funds for this operation, and so it with great celebration that they announced that the target has been reached and Abi’s operation is now secured.  They are on the big countdown to Dec 16^th!

Toby is finding all the physio exhausting, and it is a real conflict of parental emotions making him work so hard every day, he looks so tired and exhausted,  yesterday he came home from school and was in bed by 5pm, he had his tea, and went to walk into the front room, passed the stairs in the hall, sat down on the bottom step and said it was too much and could I just take him to bed! Of course, not wanting to miss an opportunity for physio, I made him walk up the stairs, one handed with one foot on each step, not two, to a step.  Tough mummy, tough love!!!! 

When I got him to bed, I did help him change and gave him a lovely massage with the most gorgeous massage oils from the Mustela French range – these are truly gorgeous and he feels so relaxed afterwards, he did not even want a story, monitors on, bells on and off to sleep within 3 mins!

I have just had a thought that I am going to look for him a “step counter”  - this would really give him a focus to keep him on his feet as much as possible and we could record the amount of steps each day to see when he was walking the most, and make up some sort of reward system – physio rules my life!!!!!   - what did I think of before this??????