It's the night before surgery,  we have to be at the hospital for 6am tomorrow, so an early start.  Today we had a full day at the hospital.  Toby performed brilliantly, and did all the physios asked of him. For those of you with CP children, they did a Gross Motor Function Assessment on him which is quite intensive, lots of video-ing and loads of "awesomes" and "high fives".  Toby was only able to get through with a snack break of a huge donut and some apple juice!  Then on to meet Dr Parks assistant physician, who was lovely, she will also be in theatre tomorrow, but assured me that Dr Park will do the whole operation,he will not allow anyone else to touch Toby, he will open,perform the SDR and then close with total control over the whole procedure.  That was very reassuring, as he truly is a great man,and Toby is in his hands.

The whole experience today was very smooth, the facilities, the attitudes of each and every member of staff, so very very upbeat,  and so helpful. The hospital also has 11 dogs, which wander around for children to pet and cuddle - how crazy is that?????

Toby is laid here asleep, complete with his bells on (see Seizure nightmare for explanation!) and I cannot help but keep looking at him and drifting off into a world of total confusion and absolute terror.  Speaking to other mums who have been through this, the first few days are hell - now I have been to hell and back twice with Toby in the past 7months, so although I cannot imagine what tomorrow will bring, I know I have seen him in a terrible way, and we got through that. 

I have expressed my concerns over seizures mid GA, and they have taken all this onboard,  I will discuss it again in the morning with the anaesthetists, but this is my main terror, and I need to convey my  concerns again before I let them have my precious little Toby.

We love him so much, our precious little cheeky monster, who has been prodded and poked since the day he was born!  With this op we are giving him a more comfortable future, and also freeing him from the need for more ortho intervention in the years ahead. 

I do not know when we will blog again,  hopefully we can post an update tomorrow.   Thank you so much for all of your lovely messages, it means so much to know you are praying for us and sending good luck/get well vibes.  XXxx

Well we finally arrived,  took what seemed like an age, but we got here.  The hotel is great,  just perfect for all of us. 

I had intended to  write and tell you what we were up to every day, but these past two days have been exhausting.  I am sat here with my eyes shutting, feeling totally exhausted.

Today has been a special day, we met the team at St Louis Childrens Hospital,  and met the amazing Dr Park.  He just breezed in, sat down and toldeverything as it is.  He did a very thorough examination of Toby, and for the  first timeaDr ever has with us, actually talked us through every stretch, manipulation and observation of Toby.  He explained what Toby is suffering from, how he finds each movement uncomfortable, and then started to explain what differences he expects.  For a chap who is one of the best neurosurgeons in the world, his manner, persona and ability to speak at a level that is easy for the masses out there to understand is amazing.  Toby really liked him, and I mean really liked him, we had a photo taken, and this is what we will show him when he is old enough to understand that this man changed his life. Thank you so much to everyone who has helped us get here,  I know I keep saying it,  but without each and every one of you we would not be here, about to embark on this miraculous journey! 

Tomorrow we are at the City museum,for some "Louis" time gonna be a good day!

I will write more tommorow,  now I really need to crawl into bed and get some sleep.  XXxx

 

 

We have always had to fight for what we believe is right for Toby,  we have questioned decisions, researched answers, trawled the internet looking for the different approaches that different countries take to cerebral palsy.  When we heard about SDR from another family in Bath, we were amazed that there was something that could make Toby more comfortable, and at the same time, very frustrated that it is never offered as an option in the UK. And so began our year long decision making process.

 

We spoke to so many UK medical teams, questioned their knowledge of the procedure and questioned what Toby's future held were he to stay as he was being guided by the UK's current protocols for treating children with CP.  The future did not look good, he would have to have regular Botox (this is another story!!), he would be in and out of his wheelchair dependant on his growth spurts (Growth spurts and cerebral palsy are a bad combination!!) and he would have to continue wearing all of his assistive devices, life would just be a continual battle with no respite.

 

At the same time I spoke to many many parents all over the world who had put their children through the operation and took on board their views.  I spoke to professors in South Africa and Dubai, who were experts in the procedure, I spoke to children in America who had had the operation, and watched countless before and after videos.

 

When I say I, I mean We, Ian was there the whole time, trying to decide how best to cope with the cerebral palsy.

 

When we spoke to Dr s over here, their opinions were so antiquated,  I knew more facts and figures about the success rates than they did from my limited investigations.  They quoted data from studies over 20 years ago, and this was very disheartening, as I really wanted to speak to someone on level terms, face to face.

 

Toby was then scheduled in for more Botox, this was to ease the ever tightening muscles in his legs, in Oct last year we took him along for this procedure, it involved a general anaesthetic, but was only a day case and we were home the same day.

 

Whether it was divine intervention,  or just pure coincidence, but a couple of weeks after the Botox, Toby suffered two horrendous convulsions, a link to the Botox was established, and it then re-iterated to us as a family that there was hardly anything in the UK that would not be able to help Toby - as Botox was now not recommended for our little man.  That kind of made our minds up, and in Jan this year, when we were still reeling from the seizures, we decided that no matter how or what, Toby needed this operation to enable him to reach his maximum potential.

 

We never complain about the tiredness felt from looking after Toby,  in my eyes, no matter how bad or exhausted we feel, Toby is facing a much more difficult and permanent challenge.  I say this not through being a martyr and wanting any form of sympathy, I say this through total and pure devotion to our little boy who has had to climb mountains since the moment he was born.

 

I do not like to think we were “chosen” to be Toby's parents, as what happened to Toby was not meant to be and should not have happened.  I do however believe that we have given Toby the most love,  the best care and the most supportive start that he could ever possibly have been given.  I have not left a single stone unearthed in my quest to ensure Toby gets the best of everything that he needs.

 

It is through witnessing his determination and stubbornness to be an equal, it is through seeing him at his most weakest and desperately sick, that our family has  developed the most protective and strongest bond, to ensure that all of Toby's interests and future progressions are protected. 

 

For this I make no apologies – I have made a lot of friends along our journey and lost a few along the way, but only when you live life with a child like Toby can you understand the all consuming total dedication that is needed.  I can never take a break from his care – I do not want to, my life is not a chore, it is an absolute joy. 

 

People have said to me that “once he has had the operation your life will become easier” that thought has never crossed my mind, we are not doing this for us to have an easier life.  The recovery period, the physio therapy is going to be such a tough time, but so much more so for Toby.  As we always have been  - we will be  there the whole time together, inching our way through the days and nights  to make him stronger.

 

As Toby's mum, when he was born, and we found out he had suffered food poinsiing, I blamed myself, and I still do, absolutely every day – that guilt never goes away, and I hope one day that when Toby is much older, we can talk about this openly together and I can try and make peace with myself.

 

This is another reason that the Toby campaign has been so important to me, it was so important to raise the money with family and friends in a wonderful happy and spirited nature where we all come together for one soul goal, to make his life easier and more comfortable – I must admit I have got completely enthralled in the whole process and was completely driven to attending and organising as much as I could, to the point of breaking, but I saw this as a necessary task to ensure the monies were raised quickly and meeting the deadline.

 

I make no apologies for my protectiveness over Toby and his interests, only when you are the mother to a very vulnerable child can you truly appreciate the strength and dedication it takes get through each and every day.  To be able to judge me – you have to live one day in my life. 

Until you have questioned your faith,  doubted the future, cried till you have no more tears left, and thought the future held no hope, can you truly empathise with the mother of a child who is disabled.

 

So that brings us up to today  - the few days before the big operation. 

After all of the frenzied fund-raising of the last few months, it now seems like the calm before the storm.

 

Fortunately not many parents have had to make the decisions that Ian and myself have had to over the past few months,  we know we are making the right decisions but they just seem so scary.

 

Our darling little Toby, our gorgeous little angel, he is funny, stubborn, awkward, cheeky, argumentative, shy, brave, amazing and inspirational.

He is about to take a turn in his life that we never thought possible,  we know that Cerebral Palsy cannot be cured, we know that this operation will not make him just like every other child,  but it will change his little life in a way that we never hoped for.

So many times we have seen and nursed Toby through illness, surgeries and more recently 2 x convulsions that very nearly took him away from us, but this operation is something so huge, so life changing and so new, it is extremely frightening.  We, his parents have been entrusted to make this decision for him and it is with very heavy shoulders that we have.

 

I know that Dr Park is the most amazing Dr we will ever meet, he is a Dr who has chosen to operate on Toby and make his life easier to live, something that no Dr in the UK was willing to accept could happen.  Dr Park changes lives, he believes his work makes a huge difference, and it does,  through Dr Parks hands, God works his magic, and that is what helped us decide this was where Toby’s future lay.

 

Dr Park has been entrusted by thousands of parents who were hoping for a better life for their children, and he has given it to them.