I have been told not to worry too much about Toby’s “hobble” and that it should start to balance out as his leg receives more stimulation and starts to grow more and catch up.   

I must admit, he is seeming more symmetrical when standing,  so for the moment I shall leave this issue to rest.

I bumped into a mum this morning who has not seen Toby for quite a while and she told me how amazed she was when she saw Toby walking the other day,  he moved her to tears! 

This mum used to have a son in Toby’s reception class, but moved on at the end of last year.   The mum and dad were very helpful in giving me lots of ideas in where to go and who to approach when I was at my busiest fundraising,  they took a special interest in helping us., always asking how we were getting on and sending emails showing their support and expressing ideas.

It is so important to have this support when you embark on the type of life changing event that we have just been through.  Sometimes just a smiling face or a knowing glance, can lift your spirits when you are utterly exhausted. 

I was completely stressed, completely drained, and at my most emotional and vulnerable,  we  still had to carry on with day to day life, and were still  trying to come to terms with what we were about to go through. 

To this end, I would like to thank all of our fabulous friends and family, teachers and playground pals,  for their unwavering support and help. 

Toby is too young to understand the part that you have all played,  but we are not.  I have said thank you many,  many times, and I am sure you are all sick of hearing me say “thank you” during my blog.  It is difficult to describe how I feel knowing Toby’s future is now so changed, when I have spent five years thinking  we were heading for an inevitable electric wheelchair. 

When Toby is old enough to understand, it is going to make such a magical story explaining to him how he was surrounded by such genuine love and generosity when he was so little,  and how so many people wanted to come together to make the difference to his little life. 

Toby’s story is like a fairytale, and that is how I have wanted it to be and to remain, we all embarked on such a magical adventure, with everyone involved only interested in one goal, to get Toby to Dr Park in America.  So please, take a look at yourself, think about what part you played in his magical journey, and then please accept my genuine thanks for what you have done for us.

I am so lucky to be surrounded by some fabulous friends,  I spent Friday evening with a few of them down at a local pub – one dear friend was missing as she had broken her foot the week before “playing on a trampoline!!”  - she was sober at the time – apparently, no really she was!!!!  But she texted us all whilst we sat drinking, asking that we raise our glasses and have a toast to our friendship – good times!!!!!

I would also really  like to thank the Green Howard’s Regiment for their tremendous  support that they have offered us throughout our “Toby campaign”

My father was a Green Howard – they are a  northern Infantry Regiment, that was my whole life for 13 years,  and there is a regimental saying  that goes   “once and Howard, always a Howard”  and that rang true when they heard of what we were trying to do for Toby.

The Regiment, both serving servicemen and ex-Green Howard’s rallied round, plastered Toby all over their websites and donated, ran events, organised race nights, organised worldwide BFBS radio interviews, just to highlight what we were doing.  

Everything was passed through Regimental Headquarters, and the secretary was kept busy logging where all the monies were coming from before passing them through to us.  Tremendous thank you to the men and women of the Green Howard’s who stepped up to help one of their own.

This is a feel good blog today, cause I feel good!!!!

In the paper yesterday, it was announced that Toby is to receive a “bravery award” from the Bristol Evening Post/First for his bravery in the face of adversity, and highlighting all he has been through in his short life is more than many people will go through in their whole lifetime.

Toby has asked me what this actually means - we have explained it as “when you get a sticker in therapy for being good – well this is like that, just better!”  he is happy with that.

Little Abigail  (footsteps4abigail.com) now has her date booked for surgery, Dec 16^th this year, so their fundraising campaign is in full flow trying to raise the necessary £36,000 necessary to pay for the operation. 

We spent last weekend at Curry’s megastore helping them raise the profile and raise monies!!!!!  Louis and myself started out at “front of house” giving out leaflets and telling people why we were all there,  but what we really wanted to do was to sell raffle tickets.  Louis and myself are a great team,  and if at all  possible, the whole of our Toby  fundraising has brought us even closer.

At every event, no matter how tired, Louis stood by me shouting, selling and answering questions.  I would say that he did not have to come,  but he was right there, stuck to my side, laughing and smiling the day through – he is the unsung hero of the Toby fundraising campaign!!!!!

It is difficult to divide my time between the two boys, but it is something that I work so hard at.  It would be the easy option to concentrate solely on Toby,   but Louis firmly understands that although Toby needs more time, he does not get more love.  

Anyway – back to Abigail.  We kept watching the raffle ticket sale stand, and nudging each other.  How do we get ourselves put on this stand?  Luckily Carrie (Abigail’s mum) came back from lunch and took over from us,  and asked us to take a walk around the store and see what we thought was and was not working.   After a quick trip around and a talk to the people manning the stalls, we said that more people were needed at raffle ticket sales and this is where we thought we would best work!  Cakes were also being sold here and what beautiful cupcakes they were too!

We explained to the two ladies already on the stall, that perhaps they might like to concentrate on cake selling and myself and Louis would have a “go” at raffle ticket selling. 

Yet again, we had a great time,  we had a mini competition going as to who could sell the most, with a cupcake being bought for the winner! 

It was so much different selling on behalf of Abigail than it was when I was doing it for Toby. 

With Toby, I would get really quite upset when people were not interested, or say “no thanks I won’t bother”  - I felt like running up and tapping them on the shoulder and saying “actually – I wish I did not have to bother “  It would take me a minute to gather myself and then approach the next person.

With Abigail,  although I wanted to do my best, I was not the mother this time and it worked better as I could bounce straight back, say “thank you very much” and move on.

I could and can still see the anguish in Carries face as she fights to raise as much money as she can for Abigail.  I have been there, I know exactly how she feels.

Trying to keep a hold of every penny given, trying to explain to people that every penny given will go to Abigail – and then trying to get them to part with monies – no matter how small as it all adds up – is a difficult job.

Now when I speak to Carrie and she is where I was 6 months ago,  she says she wishes she were more supportive as she had no idea what it was like – she was supportive, just by being a friend, that was all I needed – that is all anyone needs, kind words, supportive gestures, and honesty.

It was sheer hell – I can tell you.  Just the thought of the operation alone to any family would be enough to contend with, let alone it being on the other side of the world away from your family. 

Myself and Carrie have grown incredibly close, we share a bond through a common experience that not many others have to go through. 

I keep trying to prepare her for what lies ahead, as it is going to come, and it did to me, that you have to step away from the fundraising and start preparing for the operation.  Not just logistically  (bills whilst away, flights, accommodations, pets, ect ect) but mentally. 

This is not an operation that has been advised to you by your NHS medical team that you know, it is not something that your GP is advising will help your child.  When any child undergoes surgery in the UK, it is under guidance and advice from medical personnel over here that it is the only option. 

When deciding about SDR, that decision is solely yours, as no one over here knows enough about it to help you.  It will have a radical and profound affect on your child’s future and it is an operation that is irreversible and there is no going back from – it is not a decision taken lightly – the enormity of that decision will lie with you forever, and only when your child is taking their first steps will you know you have made the right decision.

Abigail will, just as Toby did, need time to rest, and calm down from all the frenzied goings on.  You need to start making sure that they do not come into contact with children who might pass on infections,  make sure all the pre operative exercise programmes that are sent over are being completed,  and as a parent, you also need time to reflect and prepare yourself for this massive operation.

It is a huge operation,  it has been made as safe as Dr Park possibly can, but it is a very long,  highly invasive operation,  with the aftercare perhaps being the most dangerous time as the level of pain killers given can induce apnoea.

You have to prepare to see your child at their most worse, and you need to gather and have enough inner strength to get through those few days.  I remember holding Toby’s hand, through all the wires and cannulas and just whispering that mummy was there and she was not leaving.    You need to be able to retain your tears and cry whilst they are sleeping, and try to rest whilst they are resting.

Every time an alarm went off, I would panic inside.  I became an expert at respiratory rates, saturation levels, heart rates, blood pressures, urine output,  fluid intake and times of medications due!   I had also convinced myself that if Toby was ever going to have another seizure it would be whilst there -  whilst he was at his most low.  Every time his hand twitched more than a couple of times I thought it was about to start.

Prior to leaving for The States, I knew it was going to be rough out in St Louis,  so had tried my best to prepare myself and build up on my reserves. It was important to remove all negativity and stay positive and focussed on getting the whole family through this.

We got through it, just as Carrie and Tim will get through it. It was incredibly tough,  it will probably be the most difficult thing that we have ever done, but we are stronger for it, and Toby has had his life changed forever because of it.