Wowee,  Toby feels like a little celebrity – he was brought down to earth with a bump though when he had to start back at school!

The TV article last week was really good,  we actually made Top Story,  and the piece was a really long one.

The interviewer was asking some really probing questions,  and I had to try really hard to hold it together.  I had just witnessed Toby walking across the garden for the first time – and then he was asking me how as a parent I felt about Toby’s progress, how did I feel during the operation, really deep questions that just topple you over the edge,  it was evident from the footage that I was emotional,  so I make no apologies for this – this has been one of the most amazing journeys anyone will ever go on, and I wear my heart on my sleeve when it comes to my boys. 

They asked Frenchay hospital for a quote and tried to press them into when the operation will be available in the UK,  Frenchay stated that they are in the very early stages of trying to implement the procedure – if it goes ahead and is then available to other families, then that will be amazing – to have hope, when you think that the future holds nothing more is a gift.

Caroline – our physio was with us (giving physio!) at the time it went on air, she said she felt really proud that she was with us to watch it first hand.

The Evening Post also ran a big article on Toby, and he made front page,  with a great picture inside of Louis and Toby together.

The Evening Post comment was really touching,  and sometimes it is not until other re-tell your story that it really comes home to you what you have achieved.

During physio yesterday,  Toby and Caroline got down to some serious foot painting.  Lots of paint EVERYWHERE,  Toby was well and truly covered, as was Caroline! Like I said previously, this lesson was to encourage “dorsal flexion” movements; these are muscles that operate the front and top  of your foot and your toes.  This is an absolutely essential requirement for walking correctly.  It is such a common saying in our house

“heel, roll, push off your toes”

To list a few others sayings -

“you are sitting in a “W” “  this is the worst position a child with CP can sit in as it encourages bone deformities

“Straight back Toby” – when tired, he slumps forward.

“Flat Feet” – this is a bad habit,  but he is growing out of it.

“open your hands Toby”  - Toby still has spasticity in his upper body, so we are teaching him to try and have more control over it.

“big steps”  - to encourage even stride distance instead of the little fairy steps he would take when spastic

“Lets do a countdown!” -  when he is exhausted, and wants to give in,  we start a countdown to encourage him to finish his last set of repetitions.

“sleep safe” what we all say every night – just to be safe.

When physio finished, Toby was told he would have to go straight in the bath,  he asked Caroline would she like “to join him”  -  the innocence of a five year old is endearing.

Toby watched with great interest his TV special last ,  he had obviously been thinking about it,  and when he got up this morning he asked why Richard (the presenter) had got it all wrong. 

Toby went on to explain, that Dr Park had made him better and fixed his legs, so why was Richard saying that he still had Cerebral Palsy when he didn’t?

I did not know what to say to this one,  Ian and myself were taken aback at his question.

 Obviously the initial brain insult will always be there, he does not need to know this level of detail, but Toby,  in his own mind now feels “fixed” , and feels no different to anybody else.

This morning, when I took him into school, he was as proud a punch.  He received a sticker for going in all by himself, (his support worker was on hand) I had to pop in to the classroom give a few instructions as to what had been happening over the holidays and hand over meds and the like.  Toby was sat on the mat, with his arms crossed, with all the other children whilst register was taking place.  I was all emotional again – when, Oh when, are these times going to end! I have got to learn to stop the tears!

Previously, Toby had to sit in a little red special needs chair, at the end of the class carpet and at a different height to all the other kids.  He could not join in with the banter, the chit chat,  he was never told off for talking as he had no one to talk too!  Now he was there, right amongst it and he was loving it!