I have not posted any updates for a while as life has been quite hectic, well more so than usual anyway.

Toby is still continuing to make good, steady progress, his range of movements is increasing even this long after the operation.  We are still experiencing problems with stamina, as after a full day at school he is totally exhausted and from 4ish onwards, and we are just counting down to bed time, with him quite often sitting on the bottom of the stairs begging me to let him go to bed.

We are looking at different ways of getting him to relax and take time out, as it is just as important for your body to have recovery and rest time as it is intensive physio.

Luckily both Louis and Toby love movies, so I try and structure “time out time” around watching a movie (currently ‘Despicable Me’ is the favourite!).   Most people would sit and watch the movie and enjoy!  We have somehow managed to have establish a routine that need to be followed, these include – the lounge blinds closed and a duvet on the sofa, TWO big bowls of homemade popcorn (the boys saved up and bought a popcorn machine purely for their movie times) and their latest addition to the routine is ‘Johnny Rocket Milkshakes’  - these are raspberry milkshakes, with blended ice, squirty double cream on top with a cherry and two straws! 

Recently, after visiting the Early Learning Centre I purchased a whole range of outdoor toys and games for the now warmer days.

We have

football goal (with extended sides)

giant blow up hands with balancing balls for races,

a hurdles set (to encourage balancing on one leg and stepping)

egg and spoon race sets (thanks Carrie!!)

Quoits (for balance and practicing bending down to pick things up)

Sticky mits with a stick ball

I am imagining warm sunny days with us all playing in the garden – it is now no longer a dream, and very much a reality.

To address Toby’s lack of stamina, we are focussing on repetition using a weights machine called “total gym”,  he does squats using weights to try and build up the weak muscles in his legs.  Sometimes when he stands, he bends his knees and bounces in the bend, we are trying to encourage him to straighten up and, not so much ‘lock out’ his knees, but get used to the feeling that he should be standing straight upright. 

He has amazed me with his new physio exercise,  a hula hoop is placed on the floor, Toby has to walk towards it, stop, consciously think about raising his foot and stepping into it, stand in the middle of the hoop, bend down, pick up the hoop, taking it over his head, and then throw the hoop somewhere else in the room, and then walk towards it and repeat the whole exercise.  It is fabulous exercise and targets balance, poise and in particular, bending at the knees and then coming back up straight.

The garden trampoline is now back in action after having been covered up for the winter, great strides here also, although he cannot yet stand up and bounce, he can do high kneeling bouncing, which is something he could not do last year. It is fabulous to see him bouncing away and squealing with delight, in fact yesterday one of the neighbours came out so see what all the racket was, he laughed when he found out it was Toby, as he is not used to hearing him out playing in the garden, prior to surgery,  unsupervised garden play was a big no-no!

We have made the decision to return to The States this year to see Dr Park and have a final consultation and some more physio.  This is for no other reason than, given the magnitude of his operation – and I make no bones about what a huge operation it actually was, he really should be seen by the man who performed this operation.  In our eyes, there is no other Dr who has more expertise about Cerebral Palsy than Dr Park, we have a duty to return albeit this time under different circumstances, and to thank him again for the miracle that he has performed.

Last week, Toby spent 22 minutes on the treadmill, at 2 mile per hour, I was again amazed (it was helped by him watching 2 back to back episodes of Octonauts!) he then did 4 x 20 reps of squats with 10 kg weights.

This is the most he has ever done,  when I asked him why his renewed enthusiasm, his response was “I want to make Dr Park proud of me”  - well we are ALL proud of you darling, everyone who you chose to allow into your little world can see the massive effort with which you throw yourself at life, you are an amazing and beautiful person, who is entrancing to all who know him, and every day I thank my lucky stars that we were chosen to have you as ours!

We are entitling this next trip as a family celebration,  last year was a massive emotional rollercoaster, and was not a holiday by any stretch of the imagination, this visit will be different, and we are so looking forward to it. 

At the end of January this year, we went to Daventry to the first UK SDR party.  It was a super night, where we met lots of the families that we had been in St Louis with.  We also spoke to other families who were thinking of embarking on the same life changing road, and swapped tips and insights in the massive task of fundraising.

We also met up with two of the St Louis medical team, Joan who headed up the Rhizotomy team and Crazy Michael, who was Toby’s physiotherapist.  We got chatting, and although I was conscious that this was a night off for them, they broached the subject of did I have any concerns this far down the road about Toby.  I spoke to Joan about the continuing saga with Toby’s leg length difference and that his UK team were undecided as to whether there was an actual length difference or whether the swinging gait pattern was due to hip imbalance.  As a marker to the amazing nature and consideration of these people, Joan asked that we pop to see her the following morning and she would give him “a once over”!   Of course she did not have to do this, as she was to all intents and purposes on holiday, but they never stop caring!!!!!

Next year, the great man himself is coming to the party – DR PARK!!!!!  It must be difficult for anyone not connected to what he has done to realise the magnificence of this one man, but he is honestly responsible for changing Toby’s life direction. Having had many, many dealings with the medical profession, and especially over the past six years,  I have never in my whole life met a person with such presence, such humility, and such compassion towards his patients.  He has decided to devote his life work to pushing the boundaries of cerebral palsy.  What might have been set in stone by Mother Nature at birth, Dr Park has challenged. His understanding of the profound effects of releasing spasticity is amazing. 

As a mum, when you find out your child has spastic cerebral palsy, the emotional adjustments you have to make are devastating. You grow to hate the spasticity, you spend all your time stretching and exercising tight muscles to fight the spasticity,  trying to fight against growth spurts and contractures, and all the time, everything brings you back to the spasticity being the cause.  It is a horrible word, it is a word that is used by ignorant people to imply ‘stupidity’, but in reality it is a horrible condition to suffer and to watch your loved ones fight against. 

Dr Park has without fear, grasped that in some children, releasing this spasticity can release the child.  I described when in St Louis that is ‘was like Toby had been set free’ and I still feel that way.  When we took him to St Louis, he was a tight little bent over boy, who was so tight all the time he felt like a little hard stone when you wanted to cuddle him.  After Dr Park had finished with him, it was like someone had ‘cut the elastics’ that were making him tight. 

When I cuddle Toby now he can snuggle into me and rest his head on my shoulder.  As I snuggle back and enjoy the hug, I drink in the delicious smell of my little angel, and I totally appreciate the lengths we have gone to have these relaxed cuddles.

The start of 2011 was greeted with fireworks on our front lawn,  and friends from our street joining us for an evening of games, food and drink!

 

Louis managed to stay up, Toby had to go to bed at his usual time, but woke up at 11.50pm asking if he could come back downstairs.  Of course he could!!!!, I was going to go and wake him anyway – there was no way we were greeting in the new year without having him there with us!

 

 

Christmas was a lovely affair,  Santa was very generous, and the boys had an amazing day.

In fact, to be honest, Christmas Eve is the best day for us.  It is the most magical day filled with excitement and awe of what is to come.  It started off with a very early visit to the supermarket (5am!!!) by myself and Louis.  There is no need to go this early, other than to beat the crowds, but it started a few years ago when I was working Christmas eve and had to do the veg shopping before I started work,  Louis wanted to come with me, and so a tradition of creeping out the house at a ridiculous time of the day in Christmas Eve,  to get the last few bits was started.

 

Then what follows, is filled a day of cooking, preparing, checking the NORAD site for Santa’s current whereabouts, watching Polar Express and then  Church for the Christingle service and then home trying to settle them both down at a reasonable time.  This year they were both in bed by 8.30pm.  I thought I would have problems with Toby being so excited, but when I explained that Santa just flies over houses if little boys are still awake, he tried his absolute hardest and was asleep in 2 mins flat!

 

Awake at 7am – ( I was awake before any of them!) and running!!!!!!!!! down stairs to see if the great man had been – Toby was allowed the honor of opening the lounge door to check as he is the youngest in the house!

 

And so it was all over as quickly as it began, and here we are now looking forward to the start of the New Year and wondering what joys this will bring.

 

Toby was quite poorly during the month of December, and had a few courses of antibiotics to clear a nasty chest infection.  Due to this we had to lay off physio as he was so weak and grumpy!

 

We managed “lazy physio”  which is lying on our backs and doing leg lifts, torches on the ceiling ect, but did not manage any of the intensive physio with Caroline that we had been doing.

 

We started with vengeance again this week and resumed aqua therapy with Caroline, which was thoroughly enjoyed by Toby.  He gets such a good workout in the water, and is totally exhausted for the rest of the day!

 

Following discussions with Toby, we have decided to concentrate on aqua therapy with Caroline, and stop after school physio as it is just too much for him.

 

Although he is getting stronger and his range of movements is getting better and faster all the time,  he was having trouble with not having enough “down time” after school and was becoming very negative over the thought of having to do physio when he was just so so tired.

 

I felt cruel pushing him so much, trying to reason with him and sometimes getting quite cross when all he wanted to do was go to bed or crash on the sofa.  So the deal is – mums physio mid week, aqua therapy on a weekend, with lots of treats and bribery along the way!

 

I have drawn up a sheet, targeting every area and muscle group that I want to cover, and through the medium of play, I will ensure he gets pushed enough to continue to progress.

 

Since we returned from St Louis, Toby has had no need to use his special needs bike.  This was bought a couple of years ago at the extortionate cost of £896!  It has all sorts of adaptations that were, at the time,  prescriptive to Toby’s needs, but as everything has now changed, we no longer need it!  We have decided that the bike would be best used by other children who are having difficulties, and so we have donated it to The South West Children’s Hospice. 

 

Throughout my blog I have highlighted the difficulties faced by our family and in particular the challenges thrown at Toby.  Being totally understanding of the fact that we have been “lucky” in that Toby could have been a lot more involved, I thank the heavens above that I do not have to face the saddened futures that these families have to. 

 

I know we will never know if another seizure will happen, and at any time we could have our “baby” taken from us, I am allowed the luxury of  “hope”, that it might not happen again and hope gives great  comfort.  To these families, there is no hope, there may be happiness, but the inevitable is always there.

 

Our boys have also decided that they rec’d far too many selection boxes, and have decided to donate all of them to the Hospice,  what good kids they are!

 

 

Before Christmas we were fortunate enough to have dinner with the owner of the Bristol Pitbulls Ice Hockey team,  and we were invited along to their next game, which fell on Saturday evening.

 

What an evening it was! 

 

We have followed ice hockey since spending time in Canada a few years ago.  Our team is the “Calgary Flames”  and although it is very much bigger out there, we were thrilled to go along to the Pitbulls game and watch at a very local level.

 

The boys loved it,  and Toby sat in the seat shouting “go pitbulls go” and stamping his feet in unison with everyone else!  Chicken nuggets and chips and a hot chocolate also helped the evening along I might add!  Toby was given a “pitbulls sweatshirt with his name on the back, and we were also given an adult sized ice hockey top signed by all the players – the boys were  thrilled!

 

 

On another note - before Christmas I was contacted by the editor of a “Glossy magazine”  Somehow through their contacts they had come across our story with Toby and also the fact that Ian and myself had been married for quite a while.

 

They were preparing their Valentines day edition of their magazine, and wanted Ian and myself to feature as one of their “love stories”   I was floored by this.  She went on to explain that they had been researching everyday  couples who had stayed together even when faced with very difficult situations, and “love had triumphed!!”

 

Well I cannot say that out love is a romantic love story! (we do have our moments!) but we have been married 21 years this year, and given that couples with disabled children, the divorce rate is two in three marriages, is quite an accomplishment.

 

When I spoke to Ian about it, he laughed so hard! No way! And I really should have known this would be his reaction.  Ian is a very private man and will not put on a show or demonstrate his feelings in public for anyone, let alone a national magazine.  The thought of a national magazine gaining an insight into our lives filled him with dread.

 

And I am in agreement with him – our life is private and will stay that way. 21 years is a major accomplishment, and during that time we have and continue to live our lives under immense strain, but it is something that we do together and we gain strength from one another.  I have held him up when he has wobbled, and he continues to catch me every time I fall and break down. 

 

Yesterday I spoke to Toby about his disability and what his perceptions of it were.  His support assistant at school had been off sick and he had had to have a compilation of help throughout the day to assist him. 

 

I asked him what was his understanding of why he needed a helper during the day.

 

He replied “you mean why I have a helper and nobody else does?”

 

“Yes that is exactly what I mean” I replied

 

 

“I do not want to talk about it, it makes me sad”

 

That kind of shocked me as I was not expecting that response.  I left it a little while and then tried to bring it up again.

 

“look mummy, we can talk about it and you can have me sad, or we can forget about it and I can stay happy”

 

I was and still am astounded by him,  he has made a conscious decision to not think about his differences, he has decided that it makes him feel sad,  so it is not something he will talk about.

 

Ian and myself spoke this morning as we feel it is something that needs more discussion.  I do not want him to bottle up his feelings and then for it all to hit him later in life. I do not want him to become stressed and feel he should not talk about it as he associates it with bad and sad feelings.

 

We are a very positive family and laughter reigns through our house, and this is a sad subject to have to deal with, but I do not want Toby to ever feel that he is any less of a person than anyone else on this earth. 

 

He inspires people, he motivates people, he makes people put their own worries into perspective.  He is an adorable, compassionate and amazing individual, and this is how we have brought him up, to see the good in life and always push the boundaries of what he is capable of, cause as a family together we can rise to most challenges. 

 

We will be there to talk to him when he feels that he is ready to talk about his disability in more detail,  at the moment, he just wants to be “happy” and put it on the back burner for a while longer.

 

I will always carry around the devastation of his disability, and the isolating terror of his epilepsy, that is too much of a burden for a small child to comprehend.  That is my job, I am his mum. 

Well Christmas has officially landed in our house now, and for the first year ever, Toby was able to stand up and help dress the tree.  It was super, albeit a bit tense,  I am a bit particular about colour matching – I know!! with a small family,  I should be filling the tree with home made decorations and cast themed trees to the wind,  but I have to “live” with the tree when they are in bed, and so they must live with my perfect tree in the lounge! And so by way of compromise - they have now got their own tree in the kitchen, for home made “Christmas rockets” ?? made from toilet rolls and cotton wool angels!

This Christmas will hopefully be different to last,  last year we were on a knife edge not knowing if another seizure would happen,  this year, although that risk is still a very real risk,  I can try and accept that we are as fully prepared as we can be.  We have had a tank of oxygen with nasal canula delivered to home, incase it happens again, I can help Toby until the ambulance crew arrive,  that in itself is going to be of reassurance to both myself and Ian.

After talking to another mum whose little boy has “other” issues, it is so apparent how totally life consuming it can be when your tiny angel is at risk.  It does so help to speak to other mums and realise their fears and worries, they can never imagine the horror of living in my shoes, and like wise, when I hear their stories I think I too would not be able to cope with what they have been dealt.

Life is not perfect, people are not perfect, and in a world where perfection is seen as the norm,  it is a worry when I  think how will my little one cope in the big world all by himself.  And then you come across the most beautiful people who are bringing up the most caring children – Toby is making such lovely friends at school, I have worried myself  silly about how my child will fit in, how my child will be accepted, and how he will cope with independence when they are older.  I have been a witness to  the nastiness displayed by some people, the ill informed judgments that others make, and you resign yourself that the world is made up of a whole hotchpotch of unsavory characters’ – how on earth is your little angel going to cope in a world where anything other than perfection is seen as a flaw or an affliction.

And then – by way of some Godly intervention – along come some gorgeous little school friends, who are so caring and kind, who do not treat Toby like a “pet” (that infuriates me!) who do not mollycoddle him, but play with him within his limitations and are totally acceptant of that, who look out for him to make sure he is included and that he can keep up with their play, who take time to understand him and accept his views and absolutely love sharing time with him – it is heartwarming to witness.  Teaching a child compassion, values and empathy at such a young age is not an easy job,  but this then goes on to create  tolerance of others at an older age – which is something very much lacking in nowadays.

 I have been so fortunate in having Louis, he is such an amazing big brother -  he is the most compassionate lovely boy you could ever dream of meeting.  He too has had his own demons to confront, he has witnessed his brother near to the end twice now, he coped with Toby’s  diagnosis’,  he suffered a broken ankle last year and was himself totally immobile and had to rely on me for everything, he has seen our tears, he has cried his own tears, and all of this has forged him  - not into a spoilt child who devours attention, but a beautiful, amazing  11 year old who is wise beyond his years and demonstrates compassion of an amazing depth.   He is growing up into the most amazing young man,  and it is delightful to see even more facets developing on our even bigger diamond! 

At the end of this week we have the Evening post award ceremony, and Toby is all booted and suited up for this one,  I will make sure I post a picture of him, he is already talking about how he will do his hair – we only do one style – I cannot understand all the fuss!  

We then have some mum and dad parties to attend and a couple of parties that we are hosting,  so a full festive calendar of delightful celebrations await us these next few weeks. 

Our house is full of traditions at this time of the year, some I have inherited from my childhood, some I have invented for my children.  As the saying goes, it is the most magical time of the year, and I love Christmas – I mean really love Christmas!!!

For those that do not know me well, I am an avid cook,  I simply adore being in the kitchen, and Christmas is a time when I can happily spend even more hours in there, more often than not,  with the boys helping.  We have taken a note from Nigella this year and festooned our kitchen with fairy lights, making it even more delightful on these cold dark nights.  Louis is eating the mince pies quicker than I can make them and Toby is avidly following all the Christmas Special food programmes advising me what he would like to try.  Toby spent literally hours writing his school Christmas cards,  writing has always been such a struggle for him,  that is why his school work is dominated by his laptop,  but this year he wanted to hand write all of his cards to his friends.  It took a long time, and I suggested that we scan his name and reprint it and stick it into his cards, but no! - everybody else writes their cards and so shall he! 

Home is an amazing place, Christmas is an amazing time, and for the first time ever this year, I have two boys who will run down the stairs on Christmas morning, to see if the great man has been -  no more crawling in our house!!!!!

This signifies the start of Christmas (apparently!) in our house.

I have managed to delay the erection of the Christmas Tree for a few days yet, although I know I will not be able to defy the inevitable for much longer and therefore foresee all decorations being up by the weekend.

Here in Bristol, England we have managed to avoid the bad weather that has besieged the rest of the country, but unfortunately we have not escaped the bad weather germs, and Toby has fallen fast to a chest infection, so lots of rest and TLC is in order. 

Toby made a guest appearance on Inside Out (BBC) on Monday,  highlighting little Abigail, who is due to travel out to St Louis next week for her life changing operation.  The Cox family wish Abigail, Tim, Carrie, and little Talia all the best on this most important journey, I will be following them on the internet, and holding them dear to my heart during their whole trip – it is hard to convey to others who have only read, the shear magnitude of this operation. 

I have heard others express concern over complications of the op, including paralysis, but when we agreed to the op, that never once played on my mind.  I knew that Dr Park was the best in the world, all operations carry risk, only naivety would not appreciate that,  but paralysis was not something that I highlighted in interviews, or talked about with others.  My concerns were the hugeness of the whole procedure,  it was earth moving, magnificent, life changing, permanent, lonely, scary, and it was on the other side of the world away from everyone we knew and loved  who should be there to hold our hand, as we handed over our precious little angel for surgery on a scale not often seen. 

I have spoken so much to Carrie, about how I felt, when to be strong, and when it will hit you – the tidal wave came for me when they had to take Toby from me, he was not quite fully sedated and he was shouting “mummy”  and crying, over the nurses shoulder as he was carried into a “staff only” lift – monitors being wheeled alongside him, with a full set of nurses and others squeezing into the lift alongside.  The lift door shut as I waved goodbye, and then I completely lost it,  luckily Ian was there to catch me,  and gosh, the tears flowed.

Coffee, privacy, an updated phone call every hour from Toby’s surgery bedside, Ian, and Toby’s ‘Parky’ toy (a stuffed polar bear) who I did not put down for the whole time he was away -  got me through that 5 hour period. 

But – I do not wish you to read this and feel sorry for me, because this whole story is not and never was about me,  I would go through the emotions of that  morning every day for the rest of my life, as it has given our little angel freedom from pain and mobility on a scale he never thought possible.  I have told this from my point of view, I have laid out my feelings as I lived them.

Since we had Toby, 6 years ago, and we became aware if his potential issues, I very willingly and knowingly  passed my body and my time over myself to him and decided very early on that I would only settle for the best for him throughout the whole of his life.  I do not expect thanks or gratitude from him,  I will never discuss with him any sacrifices we have made,  because that is what you do when you are a mum – it is all part of the process of loving and nurturing your child. 

Life is still incredibly tiring, for all of us, but even after the most gruelling of days, looking at little Toby, with his gorgeous big blue eyes looking back, him telling me that he loves our whole family  “twenty million”  makes everything worth it.

We were offered having a TV crew follow us out to the States, but we declined.  And now, after the BBC programme went out last week, that will be the last time we are seen on TV – “thank goodness for that” I hear you shout!

Toby is feeling the strain, and needs his privacy,  our mummy and daddy job is to grant him this time, he is still in recovery mode, we still have a long way to go with his physio, and with Christmas just around the corner, we are battening down the hatches, and going to re-group and rest over the next few weeks!

 

Our family love to all you fabulous people who send such lovely messages and emails and continue to follow Toby’s progress.  – the messages are so much appreciated and reading them after a particularly tough day gives us the smile to carry us through to the next!

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 16th! 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??????   more »

Years ago, when I was a mere 25yrs old, ( a life time ago!)  and working as a civil servant in a huge office, I was summoned to the Directors office one morning.

The director explained that he would like me to step in as his Personal Assistant, for the foreseeable future.  I was thrilled, and also taken aback as I had not been there that long.

It was explained that he needed someone who he could trust implicitly, who was articulate, and he thought I was up to the job!

He spent a lot of his time out of the office, a lot of our communications were via mobile phones (which in those days were the size of a house brick!!) and email was only just starting to be used, diaries were actual books, and it was a very demanding job.

 

I was only a wee 25yrs old, but I was loving it.  I had my own large swish office, huge responsibility and yes, it was challenging, but at the same time, extremely rewarding. We worked well together for over a year, and it was a shame when it had to come to an end.  Our Government dept was privatized, and I then took over the position as Military Overseas manager, dealing with units that were away on manoeuvres, my boss took redundancy and we parted company.

 

Fast forward to May this year, when I was fund-raising in Curry’s megastore.  Who should walk through the tills  - but my former boss. I called him by name and asked if he would like to buy a raffle ticket,  I must say he was taken aback that I knew who he was. 

I then reminded him of our time together 15 years previously, and we spent a good while reminiscing and catching up.

He bought some raffle tickets, we wished each other well, and that was that.

Up until yesterday -   yesterday was a very reflective and sad day in our house – I will explain why in a minute, but I got home from work, and quickly checked email before going to pick up Toby from school.

There in my inbox was a mail from my former boss,  he had left me that day in Curry’s and decided he wanted to do something to help Toby.  He had organized an event, and one of his friends had also requested that for his 50^th birthday, he receive donations to Toby physio fund and not receive gifts.

It was a lovely mail to receive.  He fully understood that we had closed Toby’s fund, but also fully appreciated that the ongoing physio costs were huge, and he still wanted to go ahead and donate this money he had raised to my little angel.  What a complete uplifter of an email it was!   There are some truly generous and genuine people out there, and it was a pleasure to work for him all that time ago, to be given the chance and the opportunities  that he gave me, and to come back all these years later and help my little Toby,  demonstrates what a true gentleman he is.

And so to why was yesterday a sad day? – yesterday was the 1^st anniversary that a small part of me died, it was the day that Toby had his first life threatening seizure.

It was the day that I said goodbye to being carefree and worriless.

It was the day that I started to kiss my little boy nighty-nights and hope that he is still with us in the morning.

It was the day that marked the beginning of the time that  – I now have to lay out a set of clothes incase I have to go to A&E in the middle of the night.

I was the day that means I can only ever have a small drink on a evening so that I am always fully aware of what is going on.

It was the beginning of the time that I can never sleep deeply again as I have one ear open listening for warning signs.

It was the day I started carrying emergency medication around with me that is so strong, it is only issued in teaspoon amounts – to save Toby’s life should he have another seizure.

It was the day that I had to plan my life around never being more than a few miles away from him at any time incase it happens again and I cannot get to him in time.

It was the day that I plan our lives around never being far from an A&E unit wherever we are.

It was the day that we started living with monitors around the house, monitoring noise and movements.

Ian lives with the same dark cloud permanently over his head also, the strain and the stress is so buckling and heavy that we amaze each other how we get through it all.

So perhaps you can understand that this,  coupled with the disability that Toby has, is quite a difficult situation to be in.  Nothing can ever take the seizure problem away,  it is a permanent part of our lives that is here to stay.

Hence why the whole decision to take Toby to The USA was so difficult, it meant taking him from the safety that I had worked to establish at home,  to the other side of the world and it just seem so daunting.  It was a “no brainer”,  he had to have the operation, and I had to overcome my fears, do the best I could and make arrangements that every part of the trip was as risk free as possible.

Into all of this was then thrown the fund-raising,  wowee, could we take on much more???!!! 

£36,000 was a huge amount to raise and we needed all the help we could get. 

It was such a traumatic time, coupled with what we were already living with at home,  we were truly living on thin wires. 

How did we cope,  well we didn’t! Especially me,  and as a direct  result of some other things that were also happening at the time,  I was at an all time low.  Vulnerable – you could have pushed me over, emotional – I  was crying all the time, tired! – you do not even want to go there! 

I hope that I am now getting stronger and finding the reserves to try and pull myself from this dark hole I was thrown into.  Where as Toby is working hard to building his muscles, I am working hard to re-build my emotions.

I am eternally grateful for all the marvellous help that we received in getting Toby his operation, I saw some true acts of humbling compassion.  What a truly wonderful amazing lot you have been.

And so to try to make myself stronger and try to recover, I am trying to rest more, take more time out, talk more (and this blog therapy helps lots). Coming off Facebook was a big decision, but one I had to make, and it is nice to have some privacy again, and not be able to see that I am the topic of ill informed nasty “statuses”- I have had a lot of questions as to why I am no longer on there! Maybe I am still a "hot topic" but not being able to see it is good enough for me.

Tonight, I am being taken out to a very sumptuous restaurant by some lovely friends,  it is a chance to dress up, chill out and have some ‘me’ time – with the reassuring knowledge that Ian is at home taking care of our little angels, watching over Toby whilst he sleeps.

And so I am glad to put yesterday behind me, it was a horrible anniversary, and I know that the next one is just around the corner,  the 28^th November, this is the date of his second seizure – I just need to be able to put that one behind me, that will then give us one whole clear year since anything has happened, maybe then I can exhale and relax a little – although knowing myself very well, that will not be the case!

I am sat here, and my gorgeous little Toby has just come into the study, he was a little naughty at school today and we have had to have a chat,  he spent a few minutes on the naughty step “reflecting” on his behaviour, and by way of making me proud of him and saying sorry, he has taken himself to his room and gotten changed into his PJ’s, folded up his school uniform and tried to make his bed, what a huge effort he has put in, so I must finish now, as cuddles are in order! 

 

We are all exhausted!

Even after a lovely weekend away celebrating my birthday,  first day back and we are straight into the physio therapy regime again.

Physio is different now very than it used to be before,  we now see clear gains, and that in itself is very motivating for me.  It is however very tiring for little Toby and sometimes he just wants to crash out and chill with his mates and brother.

I am trying to think of all ways to add interest to his therapy and make his exercises more fun – this is my challenge.  I spend all my waking time thinking of how we can make it all more fun.

All the equipment that we have bought is the backbone of his therapy regime, especially the treadmill, total gym, ijoy machine, and his trampoline.  The smaller extras add interest, but it is these items that make up the major players.

The surgery was only the beginning, the therapy road that we are now on stretches far and long into the distance,  it is awe inspiring to see the gains he is making, but like another family I recently spoke to who have also had SDR, these gains are not huge, and to the inexperienced eye might seem insignificant, but it is when you look at his gains since the operation that you realise the magnitude of the changes he is experiencing.

One of the stumbling blocks in the UK with regard to SDR being introduced is that it is difficult to measure outcomes on what is known as a GMFCS test.  This is a standardised test (Gross motor function classification system)  that is used to classify children with cerebral palsy and put them in a grading system to quantify the level of their manual abilities.

Between 6th and 12th Birthday

Level I Children walk indoors and outdoors, and climb stairs without limitations. Children perform gross

motor skills including running and jumping but speed, balance, and coordination are reduced.

Level II Children walk indoors and outdoors, and climb stairs holding onto a railing but experience limitations

walking on uneven surfaces and inclines, and walking in crowds or confined spaces. Children have

at best only minimal ability to perform gross motor skills such as running and jumping.

Level III Children walk indoors or outdoors on a level surface with an assistive mobility device. Children may

climb stairs holding onto a railing. Depending on upper limb function, children propel a wheelchair

manually or are transported when travelling for long distances or outdoors on uneven terrain.

Level IV Children may maintain levels of function achieved before age 6 or rely more on wheeled mobility at

home, school, and in the community. Children may achieve self-mobility using a power wheelchair.

Level V Physical impairments restrict voluntary control of movement and the ability to maintain antigravity

head and trunk postures. All areas of motor function are limited. Functional limitations in sitting and

standing are not fully compensated for through the use of adaptive equipment and assistive

technology. At level V, children have no means of independent mobility and are transported. Some

children achieve self-mobility using a power wheelchair with extensive adaptations.

Distinctions Between Levels I and II

Compared with children in Level I, children in Level II have limitations in the ease of performing movement transitions; walking outdoors and in the community; the need for assistive mobility devices when beginning to walk; quality of movement; and the ability to perform gross motor skills such as running and jumping.

Distinctions Between Levels II and III

Differences are seen in the degree of achievement of functional mobility. Children in Level III need assistive mobility devices and frequently orthoses to walk, while children in Level II do not require assistive mobility devices after age 4.

Distinctions Between Level III and IV

Differences in sitting ability and mobility exist, even allowing for extensive use of assistive technology. Children in Level III sit

independently, have independent floor mobility, and walk with assistive mobility devices. Children in Level IV function in sitting (usually

supported) but independent mobility is very limited. Children in Level IV are more likely to be transported or use power mobility.

Distinctions Between Levels IV and V

Children in Level V lack independence even in basic antigravity postural control. Self-mobility is achieved only if the child can learn how to

operate an electrically powered wheelchair.

Toby was a level 3 bordering on a 2 prior to the operation.  He could walk with aids and walk a little bit inside with no aids but needed to be closely guarded at all times.

If you are reading this and have a child with CP – your child’s physio will know where your child fits into the above system.  It is not as simple as judging it yourself, a 66 point test has to be conducted to “grade” your child – I personally do not agree with it, but it is the measure that ALL therapists work with in the UK.

When Toby returned from the States, given how weak he was, he was a level three, and now with every day/week/month - he is gaining new skills, retaining those skills and is about to turn to a level 2.

The classification is very strict and this is something that is used as an indicator as to the success of the operation in the UK.  I find this infuriating.  It examines how long you can sit in one position, how long you can high kneel, how long you can raise your hands above your head – all ‘fluffy’ stuff when looking at what other functional life changing gains can be made after SDR.

I will explain some of the things that Toby can now do that were impossible prior to the operation.

·       He can sit on the floor in school with his legs crossed like his peers (he used to sit in a special needs chair with the teacher)

·       He can sit on the toilet by himself and pull up his trousers (he used to have to have help with all of this)

·       He can put on his socks and shoes (he used to have trouble touching his feet)

·       He can walk with something in his hands (before he had to concentrate so much he could not multi task)

·       He is learning to jump and can now use a trampoline (before he could only lie stiff straight and someone else   would have to jump around him so he could feel what a ‘bounce’ felt like)

·       He can flip in and out of positions without his legs scissoring and getting in a tangle

·       He is trying to learn to run

·       He is more sociable and is becoming more and more confident (prior to the op he was very reclusive and would not speak to his peers)

·       He has made good friends in school and is making positive gains in the curriculum.

·       He is now able to open doors and walk through them (prior to the op he would not have been able to consider such a complicated task)

·       He is trying to learn to walk backwards (kids with his grade CP are mostly unable to do this task)

·       He is learning to swim (swimming used to make his legs scissor and he would be completely rigid)

Every week his is learning new tasks and new skills, and all of these are being kept as he no longer fights against spasticity.

The above changes are life changing for us as a family, but unfortunately none of these things are measured or considered by the GMFA test. 

EG – prior to the op he could high kneel for 5 secs or more,  he can still high kneel for 5 secs or more – so this would make no difference in the GMFA score there -  but now he can high kneel/walk  30-40 foot holding onto a toy, clapping his hands and singing a song.  Immeasurable on the GMFA scale, but when you are singing disco songs and are now able to join in with your friends, whereas before you would tire too easily and have to sit on your mum’s knee, these changes make the difference between “ok” days and ‘really awesome’ days!

Life is too complicated to be able to measure someone’s changes with a standardised test,  what I am really trying to say is that parents views and that of the child should be the foremost indicator in how successful this operation is.  Maybe then, the UK will be able to start making advances into helping children with CP instead of hiding behind a smokescreen of before and after GMFA studies and scores.

Our little boy had changed beyond belief since the operation.  He has become someone who now realises he can make a contribution, he is gaining more confidence and he now has self belief. These changes are obviously not measured as indicators of SDR successfulness,  but they should be major considerations as they are all knock on effects of new found independence. 

I have gone into quite a bit of detail in my blog above,  this is the way that I have educated myself and pushed the boundaries on the level of care I expect Toby to be receiving.

As I have always said – question, ask and write down and keep notes.  The internet is an invaluable tool for finding out more about your child’s condition – it can also be a frightening place – so use your new found knowledge wisely.

I no longer take ‘as red’ what consultants say and this proved very significant last week when Toby’s emergency medication was changed.  I did not think the dose prescribed was correct, I questioned it in the consultation and afterwards I investigated the change myself and then emailed the consultant concerned.  He confirmed that the dose Toby  had been prescribed was a potentially lethal dose and could have stopped him breathing, he has now amended it accordingly and I have a telephone consultation to discuss this ‘mistake’ later this week.  How would I have lived with myself if I had not questioned this and gone on to administer this medication to my own son.

It does not bear thinking about – but I will, and it is another lesson to learn – trust your own judgement, you are your child’s advocate and if you are not on your soapbox shouting their corner and defending their rights, you can bet no-body else will step up in your place.

Big news in our house – at school on a Thursday, they class now have spelling tests – the children have a week to learn the list and every Thursday they have a test.  Albeit a very relaxed test, it is an indicator for us how little man is keeping up with the curriculum and how he is coming along.  First week  - 9/10, second week top marks!!!  What a complete little star – it is a great relief for me as although I knew he was a clever little sausage,  he has missed so much school, he cannot write (due to spasticity in his hands) he cannot read (due to visual issues) – I am floored that he has managed to overcome all of these issues, accept  the same spelling tests that the rest of the class have been given and still do amazingly well – well done Toby.

 

Toby can now jump and clear the floor – what an achievement! He still has to hang on to something to do this, but the dynamics involved in jumping when broken down are very complex, and for his brain to sort out the signals and his muscles to interpret these messages enabling him to jump is fabulous!!!

 

We continue with physio,  two new additions to our regime are

 

A cat lit tray filled with Moon Sand,  this is great for when he is sat on his therapy bench and making foot shapes and building sandcastles with his feet.  For other mums who are reading this for ideas to use for their children I will go into more detail.  Toby has a Jenx Hydraulic adjustable therapy bench,  this is height adjustable and padded (available from Jenx £381!!!)

An ordinary cat lit tray, and the newly discovered Moon Sand – you will need quite a bit of this sand,  I have discovered it on Amazon for £17.99 a bag and you will need a couple.

 

Depending on the muscles targeted, the bench set at a low height and with Toby sat symmetrically, allows him  to dig in with his heels, strengthening calf muscles.

 

With the therapy bench set higher, it allows him to tickle the sand with his toes, thus developing the tiny muscles that go along the top of your foot.

 

Moon Sand is great find for us - it is a cross between play dough and sand, it is quite malleable, and never dries out. Vacuums’ up and does not stain – result!!!

 

Our other new addition to physio is head torches!!!!  You will need two head torches, the type that are small little wee ones, with elastic straps to fit around your head, except we use them around our ankles! 

 

I will explain – it is a “later in the evening activity”, and one when we can pull the blackout blinds in his room.  Toby and myself go up to his bedroom,  we affix the headlights to our ankles or feet, and lie down on his bed,  then with feet up in the air we flash the lights on the ceiling, play catch with the lights, light up dark corners, toys and all the while we are exercising the whole of his leg, hips and feet, we are also working against gravity, so an added bonus there.  To increase resistance, you can also add ankle weights – Toby can only do this for a short time,  and so can I!!!!  it is really hard work – but it is great exercise and as it is lying down, Toby seems to think it is a relaxing exercise!!!

 

It is becoming a real struggle trying to cope with school work and physio, whilst still fitting in dinnertime and much needed cuddles for me!!!  Thankfully since the spasticity has gone, Toby is not as tired as he used to be and is able to push bedtime to nearly seven  o clock,  but fitting in everything is a real time management challenge!

 

I have also been sent a couple of mails from other parents asking about the alarm that Toby uses for his epilepsy.  In fact whilst in Toby’s neurological appointment last week, the Consultant asked me if I could also provide him with details of our alarm as he wants to use it to inform other parents who might be in the same position as us -  I really hope to goodness that not many other parents are in our position with regards to epilepsy – it is the most frightening and never ending nightmare that any parent can be in. There is no cure, there is no end, there is no closure.

 

Anyway, the people that we received our alarm from are Muir Maxwell -

 

http://www.muirmaxwelltrust.com/what-we-do/epilepsy_alarms

 

here is a brief description of what their alarms do,

“When you are looking after a child with severe epilepsy, every waking minute of every day and every night is consumed with the anticipation of a seizure. Sleep deprivation becomes the norm. Night-time seizures are dangerous and there is a risk of death (SUDEP).

It is not unusual for children to sleep with their parents. Many parents check on their children throughout the night and the loss of sleep and the stress for the whole family is immense.

But there is an answer. For those children who have continual movement for seven seconds or more as a result of a seizure, MMT can  provide an epilepsy alarm. The epilepsy alarm provides peace of mind and allows many families to have a proper night’s sleep for the first time in years.

How it works – the potential life saving wireless epilepsy alarm sits under the mattress of the child’s bed and alerts the parent or carer to a seizure while sleeping. The alarm makes a piercingly loud noise if a sensor detects violent movement in bed, enabling parents to act quickly and put the epilepsy sufferer in the recovery position and administer medication as necessary. The alarm must be used in conjunction with your own monitoring. “

For us, in conjunction with other methods,  it has allowed Toby to return to his bedroom.  From our experience, and again a concern to other parents – ours has never false alarmed, which I understand is quite a problem with some other alarms on the market. 

 

Initially, last year,  our neurologist expressed concern that it would false alarm quite regularly and we would become complacent to the piercing sound and not act quickly – that is something that will never happen,  once you have seen your little baby so near the edge, that vision never leaves you and you never become complacent.

I will not allow myself to ever be off duty.  It is not because I do not trust anyone else, but at night, when he is most at risk,  it is me that is needed to ensure everything is done correctly and should anything happen, I am fully alert and prepared to act – and should anything ever happen, it is totally my responsibility.

After Toby had his first  seizure, I was assured it would never happen again, it was a one off and not to panic.

Shortly after,  I was meant to be going  away for the weekend with a friend, it had been booked for months, but something made me cancel it,  we had the day away together, but I did not want to stay over in a hotel for that night.

 And boy I am so glad that I made the decision,  as it was that night that Toby had his second and most dangerous seizure.  To that end, it is my instincts that I trust, and at the moment, my instincts are telling me that ‘time for me’ will come, but for the foreseeable future I have to put Toby’s safety first and foremost.

Others might see that as being a martyr,  although I would sincerely hope no one reading this blog would think these thoughts (wouldn’t it be nice to be able to screen your readers and only enable nice people to read my blog! – if only!)

I have had another couple of emails asking for some help with fundraising and what have been our biggest earners,  I will go into that in more detail on another post but for the record - our  biggest earner was Ian, Andy and Lenny’s bike ride to Blackpool– this brought in a whopping total of £6,500.00!!!!!!!!!!.

 It helped to draw this amount, as obviously Ian is Toby’s dad and it was so personal and made people dig very deep, Andy is the local vicar, and so he had his full congregation behind him, and Lenny – well  - he just has loads of mates!!!

Having said that – for us, it was not the amount earned, although that obviously helps you reach the target sooner and eases the stress, but more importantly it is everyone taking part and helping.  No matter how small the donation – it all mattered.

So important to me was the genuine niceness that people showed, people that I had never spoken to would come and chat and show genuine interest and ask what they could do to raise some money.

 This warmness continues now, especially in the playground, and there are some wonderful mums in Toby’s class, who have really helped keep me buoyant these past few months.

It is easy to look at your own problems and been consumed into the bleakness of it all, but people have realised that here is a little boy who represents hope and even though he has been dealt a bloody bad hand, can still come out of school with the biggest smile on his face – and be met by a mum who is the proudest mummy in the whole wide world!

 

(BTW _ thanks to the mums from SKITUK for their help and support through the forum – answering my questions and of course I will help the ladies who have recently contacted me – I will be in touch soon)

Stats update – from the beginning of October to the 10^th – 1205 readers!!!!  Pretty impressive!

It was Toby’s 6th Birthday last Sunday, we had the much anticipated bowling party with all of his classmates in attendance. It was a good morning, we had lots of adult help and took over three lanes, with party lunch and cake served afterwards. When the party was over, the four of us sneaked off to a little pub at a tiny village called Littleton upon Severn and had the most gorgeous Sunday lunch, complete with a glass of wine – pure bliss!!!! The build up to his birthday brought back lots of memories of what happened at the time of Toby’s birth. This year for the first time, dates followed the same chronological order that they did the year he was born, and so made everything so much more vivid. At the risk of repeating myself, I will explain how and why Toby was born so early. It was on the Sunday morning 3rd Oct 2004 that I called my midwife to explain that I had not felt Toby move very much and that I wanted it checking out. She advised that he was probably just being very sleepy and not to worry, but I insisted that I felt something was not quite right and we agreed to meet at the antenatal suite for some tests and so she could have a listen. Upon being booked in, and the monitor being attached, it was obvious that something was very wrong. This was at 9.30am - various midwifes and doctors came to see me, they were all perplexed as to what was happening. Toby’s heart rate was a steady 154 beats per minute, but there were no accelerations or decelerations and he was completely still. The Drs had seen nothing like it before and were very unsure what to do. I have significant underlying health issues and so had been watched very closely through out my pregnancy, I was already under the antenatal care of one of the consultants within the hospital – he was called at home and advised of the situation. Another consultant was also called to examine me and decide what was the plan of action. In the meantime I had been started on a course of injections to develop Toby’s lungs should he need to be delivered. At this moment I was 6.5 months pregnant. The plan was to monitor, and keep injecting, I was connected to a sugar/saline drip to give myself and Toby additional energy and fluids. At the time I did not realise how serious everything was, there was so much going on outside my room that I was not aware of. Mid afternoon a midwife came in and told me “your baby is very sick, he needs to be delivered and I have made sure that there is a bed in NICU for him” I asked to see a neonatologist as they would be able to answer my questions and prepare me as to what to expect. A lovely lady duly came and sat with me and explained that they were at a complete loss as to what was going on, but that they could not sit and watch in case he got worse. She advised how small he would look, that he would be very poorly and he would be very weak. I was then transferred to the delivery theatre and prepared for an emergency caesarean. I asked to go to the toilet before they started and although I did not actually want to go, I just wanted a moment, with Toby still in my tummy. I sat on the toilet and hugged him, told him that the next few days might be tough, but he had a very strong mummy and daddy and we would help him all the way. And that was it, I opened the door, walked into theatre and have not had a minute to myself from that day to this!!!! I was given a spinal anaesthetic and so was awake, Ian was with me. Toby was a breech baby and the c-section was not an easy one, they had trouble getting him out as he was stuck firmly under my ribs. When they did manage to deliver him, it was silent, no cries, no sounds, just total silence. I kept asking how my baby was, the only person that was in a position to speak to me was my anaesthetist, (a Dr by the name of Jon – I remember this as I am a stickler for detail, I remember everything and have a photographic memory!!) He told me that he could not see anything as he had so many people trying to help him – I guess that is his standard answer. I could hear the neonatologist asking for results, I could hear machines and I could hear the distinct sound of a breathing bag and mask being used – this was to push air into Toby’s lungs as he was so ill – it did not sound good. I was frantic, absolutely beside myself, all I could do was move my arms and my head, my blood pressure had fallen dramatically due to blood loss and so I was begin sick. Not a nice thing to happen, when you are lying on your back!!! Having been brought up as a Roman Catholic, I have strayed from my faith since my early teens, but this did not stop me shouting up and asking for God to come and offer my little chap some help at such a desperate time. It seemed like an age, in fact it was about 20 minutes, before a Dr came over and told me that Toby was now stable enough to transfer to Intensive Care, again they re-iterated how poorly he was, he was connected to a ventilator that was breathing for him, and we would be able to see him later. For a fleeting moment, they pushed the huge incubator past my bed, myself and Ian tried our best to see inside. He was tiny, so so tiny, bright red and a little blue, still as anything and wrapped in what looked like Blu roll! He had a mask over his face a tube down his throat and so, so many wires. But through all of this, we saw the most gorgeous perfect little boy and we were both completely smitten with love and protectiveness. That has never gone away, he and his brother Louis are the epicentre of our whole world. We did not know at the time how our lives were about to change forever. It was 4.5 hours before we were allowed to see Toby again, he had taken so long to settle and stabilise. This was the longest period of our entire lives. We only had access to a midwife who was there looking after me in recovery, there was no Dr around to tell me how Toby was, every time I asked for Nicu to be called I was told they were still working on him and they would get news to me asap. Hours later when I did get to see him, they lowered the incubator to the wheelchair level, and we were allowed or first uninterrupted look at out little boy. Toby was covered in bruises, where they had had so much difficulty in delivering him, he was so weak and so tiny. In fact he weighed 1.66kg which is not too bad, but because of the length of him, this was distributed over a long area and he was like a baby bird. We were told that the next few days, especially the next 24 hours were critical and they could offer no guarantees. Two days later I was told I had food poisoning and that was the cause of the premature birth, it was then that the sickness set in – not good when you are recovering from a c-section. The Drs explained that I had Listeriosis bacterial food poisoning. The chances of me noticing Toby had stopped moving, of them delivering Toby and him still being alive at this point were over 2 million to one. Babies normally die in utero before the mum notices, so treating a live baby suffering from Listeriosis is quite rare. Ian visited all the time, as Toby was in intensive care, he was allowed 24 hours access, this was so much needed for both of us, but he also had to be at home for Louis, who at the age of 5 was wondering what the heck was going on! I went up to intensive care late one evening, it must have been about 11am and sat on one of the stools, I put my hands in the incubator and sat stroking his head. Time just seemed to disappear, his hair was like silk, his head the size of an orange. I had taken over doing his care needs, nappy changes, and wiping his mouth. The ventilator causes bubbles around the mouth and these can make a baby’s skin sore – tonight though, I just sat and stroked his soft silky hair. It was a while later that the nurse said to me she thought I should go back to bed and she would call if anything happened. I had been sat for five hours, totally lost and trying to understand all that had happened over the last few days. I became known as the “midnight mummy” - this was the best time to visit NICU, when it was quiet with limited visitors – of course I visited during the day, all the time in fact, but night times were special. Louis was allowed to visit from day three, and he too became complete besotted with his little brother. This relationship between Louis and Toby has grown and grown ever since. They are completely absorbed in each other, Louis is so aware of Toby’s limitations and what he can and cannot do. He has grown up very quickly and been exposed to things that not many other children of has age have seen, but Louis would not have it any other way. Toby started to improve, he got stronger and started to put back some of the weight that he had lost when at his most poorly. They had told me to anticipate a discharge date of around his due date – which would make it Christmas time. He spent a total of three weeks in Nicu, one Monday morning, myself and Louis had just arrived and fed him, we had changed him and washed him. The Consultants ward rounds started, and Toby was the first baby to be seen. Myself and Louis sat and watched as they examined him and the Dr turned to us and said, “there is nothing that we are doing for Toby now that Mrs Cox cannot do at home”, albeit the smallest bay that Southmead Hospital have ever let go home, they felt him strong enough to be discharged. Toby weighed 3.11lbs!!!!! and was still 7 weeks premature. I was shocked that they would even think this, the Dr said it is not a decision that they have made lightly, but as I was so confident with his handling (they also said I was an extremely competent mother - I liked that!!! This consultant was called Martin – see! elephant memory!!) and that I had nursed a premature baby before (Louis was also premature) we could go home and have daily visits from a NICU home nurse. I called Ian, who thought I was joking! They needed to run a couple of tests to ensure that the correct meds were sent home, but we could take him home at 5pm that evening! Myself and Louis flew home, luckily the house was in ship shape – as ever I had prepared and organised as much as I could, and really thanked myself for this concerted effort as I now had limited time to prepare for him coming home so early. We went to the supermarket, stocked up on all manner of food stuffs and baby items to see us through these few days. Quickly home, put everything away, set up the Moses basket, I had a sleep apnoea alarm that my mum had bought for us, as I knew I was going to fret having him at home during the night, so we quickly set it up under his mattress, tested it and felt all good to go!!!! Just had to sit and wait now!!! Ian came home as early as he could, and off we set to collect our little angel. We did not tell anyone that he was being discharged, we wanted it to be a secret and just something that us four could share together. He barely fitted in the car seat, he was so small, he kept slipping underneath the seat belt restraints! His little feet were not visible underneath his coat, he was so tiny, and I mean really tiny – he looked like a little doll. We had been told that there had been a bleed on Toby brain and that he had sustained brain damage prior to leaving the hospital, but this was far from my mind now as we enjoyed these first few weeks with Toby. Only later, would it become apparent as to the significance of this, but that is another story.   more »

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.

Toby is continuing with great gusto.

 

He is now trying to mobilise around school with no sticks or walker.  This is proving very tiring for him,  he is also wearing his ankle weights for the whole afternoon, these are 1kg each,  we are really pushing him, and he is doing great.

 

It is a massive achievement that Toby is accomplishing,  he is only five and he is working himself like an athlete in training

 

We are really stepping up the hydro therapy that Toby is having, this seems to be really working for him and for the days following a session, he is really supple and strong.

 

We spoke to another family today, who we were out in St Louis with,  their little boy had surgery 2 days prior to Toby,  and was of a similar disability.  It is amazing for us to hear that he is starting to take his first independent steps.  He seems to be on the same level as Toby, and I would gauge that in reality it is at about this 3 month mark that you really start to see the gross motor skill changes. 

 

I am still concerned about Toby’s gait in respect of he “hobbles”  to the right.

 

Our two physiotherapists are not entirely in agreement as to why this is,  possibly his abdominal muscles are tight on his right side, his hips are weaker,  his right leg is shorter than his left. 

 

One physio wants to press ahead and have a raise put into his shoe, the other wants to wait and see.

 

I am not entirely comfortable with the “wait and see” approach, this seems to be standard UK protocol and  Toby has done his absolute best to get himself stronger since the operation,  that I feel we owe it to him to help him achieve the best he can.

 

I am at a bit of a dead end, but will do some thinking as to who will be best to take Toby to and have him assessed.

 

 I guess I need to build up a bit more trust in the NHS.  I feel we were let down by not being able to provide Toby with this life changing opportunity provided by SDR sooner, it should have been available here, if it had and Toby had it done a couple of years ago, he would have been living and loving life a lot earlier.

 

I will video Toby and send it off to the States, as they are obviously the best people to speak to,  and get their input as to where we go from here.

 

I would much rather Toby had the issues sorted now and developed a really good pattern of walking, rather than try and best accommodate this hobble, and learn to walk with it,  and then have to learn to walk again when we have “waited and seen” what might happen.

 

 

 

I have been asked by a couple of mums via email what made me decide not to allow Toby to have bottox again.

 

In the UK, Botulism Toxin A is a standard drug used to treat cerebral palsy muscle tightness in children.

 

It is also used within the cosmetic industry, but this is in much smaller doses.

 

The Bottox (trade name – as I will go onto explain) works by dampening the messages sent from the brain to the leg muscles, therefore inhibiting the wrong messages from getting through.  A theory not dissimilar to SDR, with the exceptions being that SDR removes all incorrect messages and is permanent.

 

When Toby had his last dose of Botulism Toxin Type A (correct name) ,  back in October last year,  we were still undecided about SDR.  I was always apprehensive about the amount of General Anaesthetics’ that Toby has had to undergo, as he is susceptible to lung problems due to the fact that he does not move at the same rate as other children.

 

The capacity to exercise and breathe well lessens the risk in active children of infections settling into the lungs.  In Toby and other less mobile children, this is always a worrying factor.  So GA’s are an issue, and as a result, every time he had a GA, he suffered croup, this is an upper respiratory infection, and in most children settles with the help of steam and they outgrow.   In Toby it has always resulted in him being hospitalised with breathing difficulties about 1 week after the GA.

 

Back in October last year, this was the case again, I was assured by the anaesthetist at the Children’s Hospital Bristol that Toby would have grown out of croup and all would be fine.  So a couple of days after the Bottox, we travelled up north to see my mum.  Within a couple of days, in the early hours of one night,  Toby woke me barely able to breath.  Luckily we were across the road from a military hospital, so we dashed over there and from there were then admitted to a local children’s unit for treatment.  Yet again croup was diagnosed and high dose steroids were given to calm him down – SURE!!!  Steroids do calm down the breathing, but the certainly do not calm down the child!!!  Toby went completely hyper!  It was three in the morning, all the other children in the ward were asleep,  and there was Toby shouting “ I need a big poo!!” and then giggling his head off, he thought he was made of rubber and was bouncing off the ceilings and walls!

 

I thought that was difficult,  just 10 days later Toby went on to have a massive seizure, this is well documented on his blog seizure page, but how did I make the connection between Bottox and convulsions?

 

 

It was early December and I had a letter through from Toby’s orthopaedic surgeon, giving a synopsis of a consultation we had a few days earlier.  When I opened it, one sentence jumped right out at me, and I can still see myself stood reading it and what it felt like………..

 

“Toby unfortunately went on to suffer severe convulsions 2-3 weeks after having the Botulism Toxin Type A”

 

I read the letter through to the end,  no other mention was made, but I just knew that there must be a link.

 

Toby had never had any seizure of any kind, to go straight in and have 2 massive ones invited speculation that something else must surely have been a contributory factor.

 

So I started investigating.

 

The Drs and Gp’s were more than happy to write off the seizures as a result of his cerebral palsy as the two very commonly go hand in hand.  I was not.

 

I only knew he had been given Bottox, nothing else.  This is a brand name manufactured by the American drugs giant Allergan,  as I went on to find out.  They were my first point of contact.

 

I wrote them an email and asked them for any evidence that they had of first onset convulsive seizure states as a side effect of their drug being used in children.

 

BINGO!  They responded asking if it was their brand that was used, and also confirmed that first onset convulsive seizures had been reported in 48 cases within the last five years, with 1 death.

 

I then started asking Toby’s medical team, their knowledge of the link was tenuous to say the least and I kept being fobbed with “if you look at any drug side effect you would never take drugs again” 

 

I did not think I was being unduly worried, given that we nearly lost Toby twice!!!!

 

Not being one to be deterred, I contacted Toby’s ortho surgeon and asked for the name of the brand of Botulism that Toby had had administered.  The brand name they use in the UK is made by Ipsen and is called Dysport, it is made on the continent. So off to them I now go and ask them for a list of their side effects that are not listed on the websites. After much to-ing and fro-ing They too confirmed that convulsions are a side effect, albeit very rare.

 

Side effects are categorised into common, rare, and very rare,  very rare being 1 in 10,000. 

 

After much discussions, they disclosed that their statistics are taken from all Botulism toxins administered  in the UK, even those for adults having cosmetic enhancements, Adults for cosmetic purposes,  receive tiny doses,  but they use these figures as a whole, combined with the children’s as a determination of the rare and very rare side effects. 

 

I asked why they could not isolate side effect statistics on those used purely for children suffering from cerebral palsy as they were having much higher doses, and they advised that it is not a government requirement to report to this level.

 

During this time, Toby was put on high dose epilepsy medications to prevent any more seizures coming through.  This was a really difficult time for us, as the very nature of the drug made Toby’s behaviour unpredictable and difficult to manage, we were also on the brink as we were not sure if another seizure would ever happen.

 

So what happened next………

 

Toby’s ortho surgeon agreed that is was dangerous to administer any more Botulism Toxin on Toby – well we were not going to allow this anyway.

 

Toby’s neurosurgeon advised that the link to Botulism Toxin was not strong enough and advised to go ahead and use Botulism Toxin on Toby again????????? What the……?

 

I spoke to a couple of Drs in the US to ask their opinions, and they advised that Bottox is not licensed to be used on children in the USA as it “ranks right up there with Viper venom” and it is unethical to inject it into children.  There are some exceptions to this in the USA, but that is the general feel.

 

I asked Dr Park in St Louis for his opinion, he stated he had never used Bottox due to its toxicity and SDR was the only way forward.

 

Whilst fund raising for Toby to take him to the states, (we were balloon selling at the time)  a lady approached me who I vaguely recognised.  When I saw her, my mouth went dry, I felt sick, I could feel myself trembling but I could not place her and why was I all overcome?????

 

I then realised that she was the Consultant on duty that saved Toby the night he had his second seizure back in November last year. She had not left Toby’s side the whole time he was fitting,  she was amazing.  The only bed available in any local hospital  on a Neuro paeds ward was in Gloucester, and she disallowed Toby to be moved to any other hospital and ensured he was admitted to Frenchay neurosurgical ward (even though he had not had neurosurgery!) as he was too poorly to travel.

 

Anyway - she too recognised him in the posters we had all around us,  and wanted to come over to see how he was doing. 

“it was touch and go that night wasn’t it?” she stated – too bloody true, I can never let go of those feelings.  She asked if Toby had had any more seizures, I explained that no he had not, and I then went on to explain my thinking about the link to Botulism Toxin.

 

 I expected her to be very non committal, as every other DR had been up until now,  she was the complete opposite and advised that Toby was not the first child she has treated in A&E Resuscitation due to Botulism Toxin Poisoning.

 

For any of the administering Drs to admit that there was a link could somehow imply liability.  I just have to live with the fact that I allowed my child to be injected with on of the most powerful poisons known to man, and did not fully understand the implications, yes I would still have allowed them to inject, as the risk was so very tiny, but now I am very hesitant to allow any  meds or toxic substances near Toby.

 

Whilst in the States, when Toby was coming around from the anaesthetic after SDR, he stopped breathing – I have not let you know this before – but he had a rough time!!!  Tis never straightforward with our little boy!!!  He had to be rushed back into theatre and re-intubated until he was strong enough to take start breathing again – the anaesthetists  went on to explain that Toby is extremely sensitive to the narcotic effects of any drugs that they used, his absorption rate and sensitivity to drugs is extremely quick.  Yet another indicator that it could have been the Bottox that caused the seizures.

 

In the States, they took the link very seriously, and he had to wear a red wrist band the whole time stating he was not to receive any medication related to the Botulism Toxin family.

 

So, make up your own mind – I can never, hand on heart say it was the Bottox, if I ever do and become complacent, then that puts Toby in a very dangerous place as I might lower my guard – and I will never allow that to happen.

 

The bottox has now gone from his system,  it only lasts 3 months I would dearly love to know the truth, unfortunately the only way of ever knowing the truth is to give him another dose as a test– like I am ever going to allow that to happen!!!!!!

 

 

I have so many questions that I cannot get answered.

 

• Once a path in the brain for seizures has been opened,  even if the toxin is now gone, does that still leave the patient susceptible?
• How will I even know if it was the bottox?
• When, if ever can Toby come off the medications?
• How much of a difference have the strong medications made to Toby’s character?
• Will he ever have another seizure????  My  big question……….
• Will I ever sleep a complete night without checking on him to make sure all the monitors still work?
• How will I ever let him leave home hopefully, perhaps to go to Uni, trusting him to take his own meds – will I still be ringing him when he is 30 years old and married to make sure he has taken his nightly dose of  Sodium Valporate??!  I think so!

 

 

 

A physiotherapist once said to me – I love giving Toby therapy as you really push my knowledge to the edge – I like to think I am a challenge. 

 

I also think that “not everybody knows everything, no matter how well qualified” (with the exception of Dr Park – never met a DR like him before!!) and it is our duty to question and investigate and not just take things as a given.

 

I live my life through both my boys, someone once commented on my mission and dedication and sent me this poem, I thought I would share it with you,  it made me cry!!!!

 

 

A meeting was held quite far from Earth,
“It’s time again for another birth,”
Said the angels to the Lord above,
“This child will need so much love.”

“His progress may seem very slow,
Accomplishments he might not show.
And he’ll require extra care,
From folks he meets way down there.

So let’s be careful where he’s sent,
We want his life to be content.
Please, Lord, find the parents who
will do this special job for you.

They will not realize right away,
The leading role they’re asked to play.
But with this child sent from above,
Come stronger faith and richer love.

And soon they’ll know the privilege given
In caring for this gift from Heaven.
Their precious babe, so meek and mild,
Is Heaven’s very special child.”

Life seems to be changing a little around the Cox household, or should I say attitudes (not that any of us have attitudes – I am sure you know what I mean!)

 

We are starting to look forward and be able to smile.  After nearly six years of wondering how we can keep on top of Toby’s Cerebral Palsy, and how we can maintain his mobility, we are now starting to think new and positive thoughts.

 

It is Toby’s birthday soon, he will be six, and for the first time we are throwing a party for him where other children are invited.  Up until now it has been family parties.

 

Toby has been to other children’s birthday parties, and had a super time, but up until now I have not felt ready to throw one of our own.  Sometimes just seeing so many other mobile children hurts like anything – but I have learnt to hide my feelings very well and save the tears for when he is in bed.

 

I am not a mum “close to the edge” - far from it.  It is just the way of dealing with the anguish.  I remember once breaking down at the doctors, this was when Toby was about 2 years old.  The doctor diagnosed Post Natal Depression, (I had gone in with knee pain due to carrying Toby everywhere!!!) 

 

I was devastated, was this really what I had?  I knew that I felt extremely sad, and had been for a while – but this was all very new for me.  The massive learning curve that I was on -  getting to grips with Toby’s diagnosis, making sure physio was adhered to,  the constant sleepless nights, all the medical appointments, I had no idea that this was what I had.

 

After long talks with Ian, and a lot of soul searching that I decided that I was not actually depressed, it was just a situation that I had to learn to live with.  I had to accept that life was changing and would not follow its natural path as it had done with Louis.  Things were going to be very different, and it was going to be upsetting.  Life with Toby was a sheer joy, he was and is the most gorgeous little chap, but I was constantly being reminded of how he was so different, how he was not reaching milestones, seeing new babies born, progressing and going on to walk, and Toby was still staying at the same stage – it was simply devastating! But I did not have post natal depression, I was sure of it; it was just a case that I had to learn to accept I was going to cry a lot, I was going to have some really bad days when everything seemed glum, the future seemed dark and grey. 

 

But this was just how it was now meant to be – it did not mean I was depressed.  I had to resign myself with this new way of life, but thankfully I had so many good friends around me to help.  I was also put in touch with other mums in the same position, and together we all sought comfort and sanctuary on the really bleak days.

 

Toby was extremely unlucky, he was also extremely lucky; as he could have been so much worse given how poorly he was when born.  

 

So we spent our days, stretching, exercising, watching, and all the time trying to get used to this new way of life. 

 

Life was not spent having fun, exploring, toddler groups, music groups,  days out, it was spent assessing how tired Toby was, could he manage physio that day, administering medicines, stretching him, resting him. And appointments, appointments, appointments.

 

Seeing all the other children reach their expected milestones was another grieving time, it was just another reminder that all was not well with Toby.

 

I would sit and watch, smile and converse, and inside tears were pouring whilst I watched my little boy struggle to even sit safely.

 

And this is how life has been, up until last year when we heard about SDR.  I have documented how life has been since we made our decision, and obviously how Toby has changed as a little boy since the operation – so I will not go into that.

 

What I would like to say is how my visions are changing, about myself.

 

I had not realised how much of my life I had put on hold.  I did not mind putting myself on hold, when you have children, you cannot order how they will arrive and you must take the rough with the smooth, but it feels nice to be able to start to reclaim some things for myself once again.

 

I am now starting to be able to look forward and see Toby being more independent in the coming months and years.  This in turn has filled me with a new found happiness that I forgot I could feel. 

 

In fact it is six years since I felt this sort of happiness and that is a bloody long time to go feeling glum!!!

 

Do not get me wrong, I do not think all is well and rosy, Toby is obviously quite different from other kids his age, he has a lot of catching up to do, both emotionally and academically, and we still have a massive mountain of physio to climb to get Toby to where he needs to be – but positivity is starting to come back into my life.

 

 

The last six years have been spent climbing on and off my portable soap box fighting and voicing my concerns about treatment plans, questioning ideas, and querying results.

 

 Doctors through out the South West must have quivered in their shoes at the thought of Toby’s name on their waiting list, knowing his mum was about to go in and question and query all they had to say.  Blatantly asking for their email address or that of their secretary to follow up any queries that I might have, asking them to spell out and repeat terms that were being used in order to try and confuse me.  (I would encourage any mum to take notes into consultations, and take notes whilst in the consultation – it is sometimes very interesting to compare their synopsis of the meeting to yours when their letter eventually comes through)

 

 

When I look back, this was the only way I could have behaved, as this guaranteed Toby had access to every facility that he needed to ensure his needs were being met. 

 

 I have always been known as being a strong and forthright person, I did not get to where I am with Toby today being meek and mild, and I am most definitely nobodies “puppet” and not at all naïve.  It has been suggested along the way that he perhaps has got his stubborn streak from me!!!!!  But that is not a bad thing – I do not think! 

 

Toby has driven all of his own advances; I have merely been there to ensure that these advances can be made.

 

Today we rec’d some very, very exciting news, this is still in the very early stages of its being, but I am a very proud mummy who is absolutely beaming with pride at the moment!!!!!!

 

I live and breath for my children, I am like a mother lion when anyone tries to take advantage, and I am like the most annoying proud mummy when I am shouting their achievements.

 

One such achievement his week is foot/leg raises, last week Toby could only manage 10, this week he can manage 15, and 4 weeks ago he could maintain his balance for 5 seconds, this week he is pushing two minutes – small gains to anyone not fully aware of the enormity of what he has been through, but to us they are massive leaps and worthy of the stout round of applause he so demands!

 

The good times are ahead, and I am taking the advise of the wise –

 

Steer clear of all negativity and focus purely on the positive, these positive feelings have been along time in coming, and I am not going to let anyone spoil them flowing back into my life.

 

So Toby’s 6^th birthday party is taking shape, it is a bowling party,  which is something that Toby loves,  it also places less emphasis on mobility for him and he can quite easily manage with the short walks backwards and forwards to the bowling lane.

 

He has with great precision gone through the invitation list, with Daisy his darling girlfriend being head of the list!  It will be a fun time and he is so excited, in fact too excited and is starting to pester already as to how much longer he has to wait!!!!

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!

Today has been a great day.  We started with physio,  this was a session that I asked absolutely loads of questions on and took very detailed notes.  Lyn thinks that not only has Toby got one leg shorter than the other, but also, one side of his trunk is shorter than the other. 

This has been achieved by the assymetricness of his previous spasticity.  The way around this is stomach stretches,  I have only just got used to leg stretches and all the names that the various muscle groups have, now I have to learn tummy muscles and what does what in order to obtain correct symmetrical alignment.  A great exercise is lying Toby sideways over a physio ball and stretching him out.

 

Sounds fun doesn't it - I will let you know how that one goes!!!  We also discussed how Toby’s right hip  is considerably weaker than his left side.  This again is due to the previous spasticity.  I have been instructed to lie him on his side, and get him to raise his right leg up to the ceiling, to perhaps hit a target of a balloon, or something similar.  We discussed in detail his programme of physio when he returns to school, we will be working on a fun programme of stretching and tasks that he will master before moving on.  At home, I will work on strengthening and the intense side of his physio as I have all the machinery at home to enable me to do this.  

 

We also discussed, how over the weekend, when I had put some ankle weights around Toby’s ankles, (he was meant to wear them for a short period of time, but in fact he liked them so much I forgot to take them off him, and he had them on for 6 hours!!!!!) I was amazed he had not complained, in fact he said they made him feel comfortable.  I asked why this might be - the answer was quite logical- when Toby’s legs were filled with spasticity, his brain was getting lots of sensory feedback as to where they were in regards to his body - now the spasticity was gone, his brain was a bit confused and although it knew what to do in order to walk, it was not getting enough feedback) how to over come this?  provide feedback from his feet, and re-establish a positive link with  his brain.  Weights were a way of doing this, also Toby wearing lots of different types of shoes, especially wellington boots! This would eventually come naturally, but by providing this now, we were speeding up the process. 

 

Then it was off to a quick meeting at work, I had tried my hardest to get out of this, but unfortunately I had to pop into work.  Straight from work and down to the local shoe shop to pick up wellie boots and another pair of shoes! and then straight home to start to prepare Toby for the big event of the day……………. the TV crew were coming around for an update on Toby’s progress.  Then a quick call from the newspapers, and they wanted to tag along and do a follow up for the evening post aswell. I had a houseful!   I was completely stressed out,  not knowing how Toby was going to be,  would he play up?  would he comply and do as he is told.  It is really quite difficult explaining to him that people really want to see how he is doing.  Anyway, the interviews went really well, they got lots of great footage and pictures,  in fact we had a first today.  Out in the garden, for the first time in his life, he walked unaided on grass!!!!  I was crying, the newspaper reported was choked up.  Toby just took it in his stride!!!  This might not seem like a big achievement to some, but to us it was utterly amazing.  the newspapers and the TV crew were here 2.5 hours, the deal was that if he behaved himself then I would take him to soft play and then to tea at the leisure centre - he drives a hard bargain!  The TV interview will hopefully include an interview with Dr Park.  When the TV crew called St Louis, they agreed to do a Skype interview,  Richard put the phone down and told them what he had arranged, his technical team was in a bit of a state, they had not done a Skype interview before, but were convinced that if St Louis could do this at the drop of a hat, then HTV would also be able to sort out the Skype link -so that is what they are working on.  I hope both pieces come out ok, we will see in the next few days! I want to thank Vicki from the Evening Post, and Richard from HTV News for following us throughout our journey and allowing us the publicity that helped form the basis of the fundraising.

 

So we have physio again tomorrow this time with the Caroline – our private physio and we are doing feet painting.  This is to isolate the tiny muscles in his feet and work on sending individual messages to his toes, and in particular the muscles that run along the top of his feet – it is going to be a messy day! I have put another two mums Caroline’s way now,  all will be post - SDR children, I love it,  and this is a big part of what I wanted to achieve – so so many children can benefit greatly from this operation, knowing that I have helped some others on this journey is very gratifying.

 

I am hoping Toby wakes with the same gusto and enthusiasm that he has these past few days.  Once this confidence comes, he will be walking most of the time I am sure.  He is an absolute little treasure!

 

 

BTW – for those of you who know me through facebook, I am leaving the site, and I apologise if I have deleted you from my list,  I was trying to send you a message and in editing some of the message also deleted some friends.  sorry!!! 

The total gym has now arrived and Toby has now started adding this into his programme of physio.  The main exercise we are doing on this at present is knee presses, as it is his knees that are very weak.

Toby’s walking is coming on a treat, although he is quite selective as to who he will show it to, he will only walk in our house, and he will only walk when he has jeans on (as if he falls over, it will not rub his knees!) quite important criteria, that all has to be met before you can witness the amazing event, but it is well worth it.

Having said that, yesterday was a wobbly day, and he really struggled with his balance and really did not want to walk much yesterday, so we focused on balance games.

Physio was a scream, and Caroline showed me different ways of supporting Toby when he is playing on the Wii fit board.  We also realised that his right leg is considerably shorter than his left leg – this is quite common when you have asymmetric diplegia, as growth is stimulated through weight bearing and activities, and as Toby has always favoured his left side due to this being less affected, has used his left leg a lot more.

This was a shock and quite concerning for me.

To alleviate the issues he was having standing, we used a phone book placed on top of the board on his right side to make him more balanced.  Looking go the future, he will have to have a slight lift built into his shoe to make sure his leg length is even, but I will speak to The States to run it by them as to what they might suggest.

As Toby is making his way around the house, it has been so funny to watch and we have had so many laughs together.  If he is walking down the corridor and wants to turn to go left or right, he has to time his turns appropriately that his turning circle is at the right time.  It is funny to watch him start turning and “miss” as he has taken too many steps and not timed it right.  I do not laugh at him, we laugh together as he also states on what a “numpty” he is!

And so life carries on in the Cox household, we are starting to get ready for the return to school, and I am hoping that runs nice and smoothly.

It is etched in my mind exactly what part each and every person played in Toby’s story.  Our life is full of good and honest people,  and when our child in this community needed help to guarantee him a better future, there was no end to the people who stepped up to the mark and wanted to be involved right up until the goal was achieved and more. 

At times throughout my blog I have taken the opportunity to name people that I wanted to thank,  two very special people who have played a huge part in the fund raising have been Louise and Andy Thomas. Andy is a local vicar and Louise was Toby’s key worker whilst at pre-school.  Louise has given me her advice and thoughts throughout the campaign,  and I have relied on her a lot for emotional support when things have been tough.  Likewise,  Andy wanted to help raise monies and embarked on the mammoth cycle ride to Blackpool with Ian.  The night that this was all dreamt up was one that will live long in my mind.  Ian and Andy (and Louise) around our house, tummies filled by the local kebab house, egos fuelled by lots of beer,  and so the trip started to take shape.  It was whilst training for this bike ride, during the long evenings that they cycled together, that  Andy offered Ian support when he too was feeling “wobbly” about what we had to achieve.  Event after event, they would turn up in force with their family, supporting, congratulating, selling tickets, tying balloons, we even borrowed their children for a few weekends when we took over Currys Megastore!

It was Andy who donated the use of his church for the Grand sleepover that we arranged,  lots of local children paid to come to a huge sleepover, donations of £10 were asked, although many gave more.  Aldi donated all the food and drinks,  so there was no outlay at all.  The amount of children that attended was huge, and everyone who came was filled with good spirit, so were the parents dropping off the children! They were having a night off!  We watched movies,  girls giggled, painted nails, (just one nail varnish spillage) kids moved and changed around the room all night, not yet ready to commit who they wanted to sleep next too.  Louis (our eldest) managed to get himself next to his life long love Kathryn,  he has adored her since reception class. 

Toby made a star appearance,  dad had taken him to The Harvester for a meal, just the two of them,  but then had to call in as he had forgotten his keys,  when Toby appeared, everyone wanted to speak to him, he was like a little celebrity.  Toby could not stay for the night,  he was too young, and also I felt uneasy that he was not “fully alarmed up” and I would not be able to give him my whole attention, so he was made to feel just as special, with a meal out just him and dad.

What a night it turned out to be,  kids awake till all hours,  giggling, boys breaking wind!!!  Urghhhh! Tummy aches, tears of laughter, but we made it through without anyone having to call any parents to collect.

Everyone was awake early due to the fact that there were no curtains on the church windows, once daylight started to stream through and one child woke up, they all woke up.

For breakfast,  next morning, we had masses of boxes of Shreddies given to us by a local newspaper, each child had this, no choice here I am afraid,  but it all went down well. Gosh was I exhausted,  totally whacked, with a stinking headache. I slept the rest of the day on the sofa!

Having been a very private person before we started on this journey, I had to open our life book and allow lots of people in.  This was not a problem in any way, shape or form, as I had a very clear target in mind and fully realised my obligations in order to maximise exposure.  I continue to write this blog, giving snippets of our daily life and what challenges it brings,  at the last count we were receiving hits of  500 plus per week,  there is so much interest in his story, which is just great.  Now, I am concentrating on trying to get life back to normal.

So in summary of the last year, I have seen compassion and empathy shown to such a degree that it has been humbling,  my little boy has made connections and friends all around the world, other things I prefer not to dwell on, although apologies for anguish caused  have since been received and they have been very welcomed. 

I would urge any parent to embark on this journey and not to let the amount you have to raise to be a major consideration.  If your child is suitable, and Dr Park will give you his opinion very quickly,  then once you are fully informed and you know how your child’s future might change, then start to think about fund raising.  Of course, should  you decide to go ahead  - then fund raising will completely dominate your life,  but it will come to an end.  I have highlighted that it is not all fun and laughter, this is intentional, “life is not a box of chocolates” , and my life certainly is not – you will be judged and people will think it is their right to make judgements and pass comments.

You have to take the rough with the smooth,  and find strength, when that is all that you have left.

I have heard the comment “I am sick of hearing the name Toby Cox” -  For goodness sake, this was a little 5 year old boy, what was wrong with peoples compassion, and it is still is beyond my comprehension – the ironic thing is this person still talks to me not knowing I know her real thoughts.  Biting my tongue and exercising silence has become a skill I have been  forced to learn.

I guess what I am trying to highlight is that my story is not a "Mary Poppins and the birdies dress me in the morning" story  - far from it.  What I have seen my little boy go through, especially this last year most people will never experience, and I would not wish any of it on anyone else.  But throughout this long journey, I am grateful that, although Toby is significantly affected by cerebral palsy, he could have been a whole lot worse,  and people should sometimes look at their lot and think "there but for the grace of God go I" 

What happened to Toby could have happened to any other mother of a child who is reading this now.   I would swop out with you any day and make Toby's disabilities go away,  I would sit in a wheelchair for the rest of my life without a second thought, to free him from the difficulties he has faced and will go on to face. 

I replay these ugly comments and torment myself with them, and just hope that by the time Toby is old enough to understand, people have lost their ignorance and he is surrounded by a good group of friends who will help him through.

I know I will always be there for him, as will the fabulous friends we have made and met through our life journey.

The day that myself and my other fund raiser went to the bank to telegraphic transfer the money for the hospital bill was a truly memorable one, we stood outside the bank and hugged, both with tears in our eyes!  Twas a beautiful day, the sun shone down, and we both knew that at that moment, Toby’s life was about to be changed forever.

Another physio session yesterday and he is just getting better and better.

 

There is just so much he can do now that was not possible before.  Caroline took Toby onto the trampoline and they had great fun, lots of balancing exercises and showing Toby the mechanics of how to jump.

 

Jumping is an extremely difficult thing to do, it involves isolating the muscle groups in the lower parts of your leg, grading your movements and then the timing is the final trick!  It is all very simple to you and I, but to Toby, who needs to be taught every single motion, it is very frustrating – he just wants to bounce!!!!!

 

Louis hopped on and joined in, and provided some great bounces that Toby was able to enjoy whilst holding onto Caroline’s hands – they also practised cross legged sitting, hands on knees whilst Louis did little bounces – this was to encourage Toby to correct his balance every time he was knocked off centre.

 

Toby did excellent “running” on the treadmill – he has to hang on to the side bars, but he walked/ran at a speed that he never has before and he thought he was great! – We thought he was great!!!  He is only 8 weeks post op, and the changes are amazing us every day.

 

I have ordered a hand held massager for Toby, as he is working so hard during physio; it is a lovely treat for him to have a massage after to warm down.  Every night since birth Toby has had a massage of his legs and a wee stretch, with some gorgeous oils, just to relax him before bed.  But I have now become aware of a fabulous hand held massage machine that delivers heat and vibration, and I can use in conjunction with the oils that I have.  This will make stretching and massage time more fun, and it also gives him something to work towards knowing that when we finish the workout, he has “complete bliss time!”

 

It really is like trying to build the million dollar man,  I am constantly thinking of ways to help and encourage him to gain strength – of course whilst making it fun – at the end of the day he is only a little five year old who just wants to have a good time!

 

Another angle that we are taking is utilising the Wii machine, in particular the Wii Fit board.

 

This is great for Toby, or in fact anyone who is wanting to increase muscle mass, balance and have fun.  It is used extensively in lots of hospitals as it is so “normal” and yet it delivers great physio!

 

One game I have found is “Step and Roll” where Toby sits on the Fit board and directs a monkey who is trapped in a big bubble around an assault course.  You move from one “bottom cheek” to another to direct the character on screen around, all the time centring your balance and maintaining a good sitting posture and so exercising your abdominal muscles.   This game can also be played whilst standing and weight bearing through your feet for direction,  but we have to use Toby’s walking frame as he cannot stand upright and shift his weight from one foot to another yet – but this will come,  sitting down is the first stage!

 

If anyone knows of any other games out there that would also be suitable, then please get in touch and let me know.

 

Toby woke this morning, shouted down the stair for his “cuppa tea” – I have stupidly gotten into the habit of taking him a cuppa on a morning to wake him up, I wake early every morning as I always have to much to do – I regularly get up at 5.30am – 6ish just to have a couple of hours quiet time before the house wakes up.

 

This is my time to collect my thoughts, Google any ideas, send out emails and write lists for the day!   But now I have started to bring his Lordship a cup of tea in bed and I don’t know how I am going to break the habit, I cannot imagine it happening in the rush of a school morning!

 

 

So for the week ahead, we have planned an aqua therapy session on Saturday morning, Toby is so looking forward to this – and so am I!!!!  I get an hour off!!!  A whole hour – oh the joy!

 

And next week, Caroline is coming for  a long Wii fit session, to add in her input to positioning and weight bearing when he is playing.  It is all very technical stuff; my mind is whirling all the time!

 

Lovely mails and messages again, and yes, I will help all I can when I can.  My opinions are completely based on my own experiences of the procedure and the benefits it has shown to Toby.   After reading other parents experiences of this, it re-affirms my belief that the more affected your child is when they go in for the operation, the weaker and more effort it requires post op.  I still remember watching Toby trembling in bed – he could not even summon the strength to hold a straw in his hand. 

 

This initial tremendous weakness soon passed, to be followed by a general whole body weakness that would need a massive amount of stamina from Toby to overcome. 

 

Thankfully, stamina is something that Toby’s is not short of,  his desperation to walk is always foremost in his mind.  It does break my heart when I see him so exhausted, that he cannot even keep his eyes open, and he just flops onto the floor in a heap – “mummy – can we stop for a minute?”  - I look at him and just scoop him up,  he is amazing, he is determined, he is our Toby and we adore him to little pieces!!!!

 

I know of two other families in my home town who are currently being assessed for the procedure, I am so grateful to Henry Ford from Bath who first told us of the operation and its potentials – and so we too have now enabled others to now investigate and assess if this operation is suitable for their children.

 

We are contemplating going camping next week – it will mean that Toby has to sleep with me in my bed so that I am close and can feel him is a seizure starts, we will also have to plan it to make sure we are quite near to an A&E unit should we need to get him there, but it is perfectly manageable – and I am not going to let the “seizure monster” rule our lives.  As a family we love camping – we live so much of our life in a high tech, fast moving mode, that just sleeping outdoors, and slowing right down is sometimes just what we need.  We BBQ a lot, take in long walks or bike rides,  normally with Toby in a tag along trailer – but now he can probably manage on a tag along bike!  Sitting in camp seats just as it is getting dark,  candles lit on the camp table, cup of tea in an enamel cup! – chatting about anything and everything – you cannot beat it!   Toby will have to use his walker, which will be a challenge, walkers and long grass to not mix!

 

We did not make it away this summer – other than to St Louis that is.  St Louis was not a holiday, not by ay stretch of the imagination,  so it feels like we,  as a family have missed out on a break this year, given all the fundraising that went on prior to our departure,  we really need to get away.  The thought of going anywhere by plane is not something that I relish,  but just a short break with no distractions would most certainly do the trick!

 

I am going to press ahead and write the book.  Speaking to a close friend last week  about how it would take shape and from where I should start gave me real enthusiasm to get it started. 

 

From when Toby was born and we were first given the diagnosis would be a good start point, and to take people through the whole battle both emotional, the grief  and against establishments to get Toby the very best that he deserved.

 

I also want to cover in greater detail the fund raising that we did, that has to be one of the most rewarding achievements in my life.  To raise £36,000 in twelve weeks is amazing – but it has not come at an easy price and the toil it has taken has been immense.

In this last week we have made great strides! Literally!!!!  Toby has just begun to find the confidence to start to try and take steps all by himself!!!!!!

 

 

We knew that it would be up to him and no matter how much we tried to encourage him, it would have to be something that he dug deep into himself and found.

 

We have been working so hard on physio lately and also have started aqua therapy with Caroline his private therapist.

 

Last week I took Toby and Louis to the pool, met up with Caroline and handed him over to work with her alone.  This is something that I have not done before,  I have always stayed glued to Toby’s side whenever he is having anyone else work with him,  it was a necessity as I knew him best and could help encourage him and also interpret his actions if he decided he did not want to talk.

 

As Toby is so comfortable with Caroline, I just handed him over and went to the viewing area and sat and watched.

 

I was even complacent enough to take a magazine with me! This was to make it look to Toby that I was not just watching him as he might then become very clingy and want me back, but no, he was having FUN!!!!

 

Caroline really put him through his paces; he had a solid hour of therapy that really made him work hard.

 They used a foam woggle, bent it into a “U” shape and Toby sat on it and pretended it was a bike and he had to “pedal” as fast as he could.  They had lots of races, and lots of kicking and splashing around.  One of the exercises that they did was they both sat on the poolside and “hide their feet in the water” and then “poked their toes up out of the water” this was to strengthen and stretch the muscles in the top of Toby’s feet.

 

The spasticity really had a tight grip on Toby’s feet and held everything together like a “claw” , not that is all gone, the muscle tone in his feet is floppy and weak, these  targeted exercises need to be lots of fun, but also  very regular to help build normal muscle tone and strength.

 

We have lots more of these aqua therapy sessions planned as they really do give his therapy a different direction.

 

It was the day after his aqua therapy that we were getting ready to go out and we heard a loud shout from the lounge “excuse me – I have just walked and nobody was watching!”

 

We all rushed into the lounge to see what he was doing.

 

Toby was stood near the sofa, and trying to regain his balance.  He tends to lean forward and wobble his arms slightly, you can actually see him assessing whether he is feeling balanced enough to try to take a step. 

 

This is when it happened – he set off and took about 15 steps all by himself,  he then held onto the door frame regained his balance, turned around and set off again,  he did this about  a dozen times non stop.

 

I was crying, tears again!!!!  All of a sudden at this very moment, it hit me, this was what it was all about, all the fundraising, and all the anguish and joy that that brought, the planning, the journey to The States, the emotional turmoil of the operation, the bedside sitting in intensive care, the heat, the tiredness, the tears, here it all was finally coming together!!!  He was walking, for the first time in his life, taking comfortable, flat footed, equal stride length, stable hipped steps with a huge smile in his face – boy was he proud!!!!!

 

I did not know what to do, I ran over and grabbed him, I needed to speak and ask him “what has just happened”

 

At no point in his physio up until now was he anywhere near what had just happened, yes we had worked bloody hard at every level, on every muscle group, but he just did not seem ready.

 

I sat him down and kneeled in front of him “Toby, what made you do that”

 

“I just felt ready”  “It just felt right”

 

Toby is very descriptive of his feelings and thoughts, that is what makes him so deep and emotive – it is something that sets him aside from other children,  he has a way of letting people close to him know exactly how he is feeling and allows you to get real insight into his inner self.

 

We had to set off to a family party then, but I was still beaming when we arrived and could not wait to show off what he had just shown us!

 

Nanny and granddad were the first to see his new skills.  They too were overwhelmed!!!!  What a clever lad he was.

 

These last 5 years has shown me and humbled me into the real effort and dedication needed to walk when your body is saying “no”.  We have had to learn every broken down movement, from rolling, pushing up to a sit, using the correct flat hand to push up, bending your legs around, pulling to a stand, re-position feet, and try to gain balance – then there is the “foot, heel, roll, push off” the actual foot action is complicated enough without having to think about the whole rest of your body too!

 

For the first five years we worked towards this final goal,  having to take shortcuts and make wrong movements trying to overcome the spasticity when needed, Toby would learn a new skill, and then a couple of days later it would be forgotten due to illness or growth.

 

It was a case of 1 step forward and three back some weeks, it was disheartening for me, never mind for little man!

 

This is not the case anymore, every progression he makes, he keeps, every skill he learns he keeps, and all strength gained in his limbs is retained!  It is amazing to watch him.

 

 

 

Toby’s epilepsy seizure alarm has now been returned from the manufacturer, this was a huge relief as I now have a "back up" safety net.

 

I immediately got onto installing it back into his room, all the sensors and alarm units are now functioning well and I can sleep a little better.  One parent commented to me via mail that surely something should be available other than parent vigilance to protect Toby during the night, unfortunately nothing else is available.

 

We have an appointment with Toby’s neurologist in October, buy this time it will be nearly one year since his last seizure; I am hoping that I will start to feel more relaxed that this period in our lives is over by then. I think I have said before, a disabled child is trauma enough to live with; the seizures are a whole different ball game.  I have to be totally prepared at any time, day or night to deal with a seizure, medication must always be to hand, and I watch him like a hawk, without him realising anything is amiss.

 

 It is my greatest fear, and I cannot begin to explain how it feels – if I close my eyes I can instantly transport myself back to A & E, I can smell the smells, I can hear the monitors beeping, and I can hear Toby shaking against the metal hospital bed.  I can hear them shouting he is in “status”,  I remember his eyes not recognising who I am,   and  just writing about it, I am getting the familiar pain in my jaw where I am trying to hold back tears.

 

This blog has become a sort of therapy for me, also a diary of events that I can share with Toby when he is old enough to understand, although obviously not all of it!   Please read it and leave it, if you feel I am repeating myself.

 

It was suggested by Toby s nurse that I seek counselling for the impact that the seizures have had on our family,  what we have seen has been deeply traumatic,  talking about it is what I need, putting my words on paper, eases the pain, speaking to a stranger would not make it easier. 

 

I pray that we never have to witness another seizure, but every tiny movement that he makes in his sleep makes it all very real every single night. 

 

All the lovely people that are out there who deeply care about Toby and have read about his fabulous journey,  and who have prayed for him,  when you are next praying that he will gain strength and learn to walk,  can you please include ask that he remain seizure free and that he is mine to keep for always.

I have just had a phone call from a friend who wants to buy the first edition of my book (when I get round to writing it!) result!  OOh to have the time to sit and focus on something like that would be such a treat!

I have posted before on Toby having epilepsy, and the severity of it.  As a result he sleeps in a room that resembles a scene from Spooks! Toby's actual epilepsy alarm has not been working and has been out for repair.  Sleep has been a very precious commodity in our house whilst it has been away, as I have one ear awake all the time listening to the audio monitor/alarm.  Toby also wears bells on his upper arms, this is because his arms are the first to move should he start having a seizure, the bells ring and let me know that there is a problem.  This might sound extreme,but Toby's seizures, if not stopped result in, well the worst possible thing you can think of!  So, as a family we take his safety very seriously - if only he could appreciate that!!!

A couple of nights ago, I put him to bed, waited for him to fall asleep and crept back in and put his bells on.  Downstairs that evening, I could hear the bells moving occasionally (on the monitor) and knew he was just getting comfy, no problem at all.  Come my bed time, I popped in to tuck him in, whisper "sleep safe" and ask his little guardian angel figure that sits on his windowsill to watch over him (I know - extreme! but it is an extreme situation!)

No bells!!!!!!!  Toby is fast asleep, looking  absolutely perfect, with his little button nose, and cuddling his Shaun the sheep, but not wearing any bells!!!!

Now I know I put them on him, he has never taken them off since he first had to wear them back in November last year - so where have they gone?  I looked under his pillow, not there, I looked under the duvet, not there either.  Rolled him back over and re-checked his arms,  no they were not there the first time and they certainly were not there now! I looked in his drawer, only the spare set was there! I sat, and thought real hard, yes I had put them on and yes I had heard them during the evening.

Ian came into Toby's room to see little man was tucked in, and I explained to him that I thought I was going mad! No - he confirmed that he too had heard the bells during the evening.

With this Toby woke up, big grin on his face, he had been listening to my confusion! "Toby have you taken off your bells?!"  "No, certainly not!" "do you know where your bells are?" "No, I do not know where they are" still smiling.

I crawled  on my tummy under his bed with his night light and caught sight of one of them right in the corner at the top of his bed.

"AAHHH", he said,  "now I remember, the 'behind the bed fairies' came out and sneaked them off my arms"!

I just could not believe it, the little monkey.  Apparently the behind the bed fairies had come out and woken him up to say that they were taking his bells.  It was not his fault, as he did not do it.  Apparently everyone has 'behind the bed fairies' that cause a big mess in your room and do not tidy up after themselves!

So,  we have spent the last couple of days talking about these flipping "behind the bed fairies" and saying how naughty they are, in fact,today I got the hoover nozzle and pulled out his bed, and hoovered the blasted fairies up!! Now if those bells get taken off, there is nobody left to blame. 

So we have had a good talk about his seizures, and I always try not to frighten him,  he does not need to know the danger he is in,  that is for me to worry about! I called the alarm company, and hopefully the alarm should be delivered back to us tomorrow! - in time for the weekend, and some much needed sleep! But if anybody else has behind the bed fairies, then watch out!  We now have 'in the dyson fairies" and they cannot get out!

What a week it has been...

During physio last week, Toby took a fall and broke a small bone in his foot!  We could not believe it, after everything he had been through, this happened!

 

After taking him to A& E and returning the next morning, we found out he had a tiny fracture in a small bone in the top of his foot, they have put him in a removable plaster cast with a shoe, that will enable us to continue with therapy, but it is still a setback that we could have done without.

 

It now seems like a distant dream when we set of for St Louis not knowing what to expect, we really miss the team, the SDR friends and even the hotel staff – it was an amazing experience.

 

I really want to say a big thank you to the wonderful people who have continued to mail me and show their support after the terrible anonymous mail that I recently rec’d.

 

It completely knocked me sideways, I did not realise the extent of poison that some people could exhibit, and to see their thoughts, lies and comments written on my computer that was totally meant to upset me, completely blew me away. 

 

I was actually reluctant to post any blogs for a while – I guess I was kind of scared at what people thought of me – something that I am far too sensitive about anyway!

 

I do not want to use this blog as a vent for my anger, Toby’s name has spear headed the whole campaign and I have tried very hard not to have his name tainted or turned “dirty” through other peoples gossip, lies and untruths.  I will continue to maintain a dignified and gracious silence - It is nobody’s right to interfere and cast judgement on a mother in my shoes about a decision that has not been made lightly – it is my duty to carry on with his campaign in the spirit that it was started. I will not answer to critics, I will not gossip or respond to gossip, and I hope that people do not judge my silence as anything other than dignified.

I am not a bitter person, I wear my heart on my sleeve and being a Yorkshire girl, tend to speak as I find. I just wanted people to know that our story has not been a smooth road, far from it, and I have had to dig so deep to find the strength some days just to get through. 

 

I guess I have been feeling quite emotional of late again,  I am in the process of helping another local family fundraise to enable their little girl to visit St Louis and undergo the SDR procedure.

 

Today we spent the morning together having coffee and then lunch, talking about what lay ahead.  Just seeing her eyes light up at the thoughts of what lay in store, and me knowing what miracles were around the corner for her and her family.  There were lots of tears, lots of tissues!

 

Having a child with a significant disability is so heart rendering, it completely takes over all of your thought processes and totally changes you.  I am such a different person to who I was five years ago, I cry at the drop of a hat, my outlook is different,  I have had to learn a whole new dictionary of medical language,  I have had to be trained in physio,  emergency medicine, carry a mental essay on Toby’s medical history that I can rattle off at a moment notice even whilst under tremendous stress (that is a massive skill  - I tell you!), carry emergency medicines every where, and most obviously I am like a mother lion when it comes to protecting my children. 

That is why the St Louis decision took us so long to make, it was such a huge thing to contemplate – we were totally changing Mother Nature’s intentions.  But we have absolutely made the right decision and Toby is recovering amazingly well.

I think I have said before, Toby was quite affected by cerebral palsy/spasticity, and it takes so much longer to recover after SDR if you were that much more involved, but we are getting there.  I am there every single step of the way, holding his hand and encouraging him all the way.  He is becoming more confident in his movements now and his patterns are so much more normal now – we will love Toby whatever he is like, he is a total inspiration to us, an amazing gift who gives so much love to us all.  Louis and he share an incredible bond, and looking to the future, I know that Toby will be just fine with such a super brother looking out for him.

 

I do not always mention Louis, this is not through favouritism, although I am sure nobody would think that anyway.  Louis has always been there for Toby, since he held his hand whilst in a NICU incubator, to “lou-lou” being Toby’s first words, Louis has shown compassion far beyond his young years, he is clever, empathetic, and has completely thrown himself into the whole fundraising campaign, he has supported me when we were stressed, he has shown strength and amazing commitment, he is going to grow into a fine young man,  his dream is to be an orthopaedic surgeon to help children with CP – how amazing is that??!

 

I really do feel truly blessed at having such amazing boys, who I am both equally proud of. 

 

So what do the next few weeks bring for us………….

 

Lots and lots of physio, planning therapy, aqua lessons, buying more equipment and generally keeping up the momentum, as we do not want to loose too much energy on this broken foot business!!!

 

The TV crews and newspapers are wanting to do follow ups – I have been putting them off due to Toby’s being in plaster – It does not really ring true of a good outcome does it?

 

I will though, as this is such a powerful way of continuing the story, and helping other parents of affected children become aware of this operation.  I have wanted a big part of the campaign to be,  to raise awareness and let other mums and dads know that there is something out there to help make CP children’s life more comfortable, I am more that happy help explain to other parents contemplating the procedure what our experience was and continues to be.

Toby is continuing to get stronger every day, just little tiny things that he is finding easier every day.

He is still incredibly wobbly,  mostly in his knees and calves, they have a habit of just “collapsing” underneath him when he least expects it,  but this is purely due to lack of strength, and is something that we need to work hard to build up.  It will come,  it is just a matter of time and perseverance.

Exercises such as sidestepping, backwards walking, walking on his knees and the like all help build up these muscle groups.  We have now ordered the treadmill and it came on Friday,  we had to choose one that operated very smoothly on a slow speed,  given that Toby is so small,  it also had to have various other features and we had to make sure it would last him for a long time.  With this in mind, and with the help of the team in the USA, we chose a “Life fitness” model,  these are not at all cheap, but thankfully we have been blessed with having enough monies left in Toby’s account to enable us to purchase him the best. 

Other items we have ordered include, wobble/balance boards, calf stretchers,  sitting wedge and all manner of other equipment.

This equipment is really going to help Toby achieve his full potential,  although I must admit the most exciting piece for him at the moment is having his own exercise mat!!!!!

We are loving this whole new experience that Dr Park has given us,  we are smiling all the time,  and when we look to the future it is so much more appealing that it ever has been.

The doom and gloom that I have felt in the past few years was soul destroying,  I would cry and sob, worry and stress over every obstacle that was put in Toby’s way.  As a mum, you imagine every scenario that they might encounter and wonder how they will cope if you are not there to help or support him.  When Toby started school, it was incredibly stressful.  Up until then I had completely managed his whole day,  the thought of handing over this massive responsibility to someone else was just too daunting. 

Toby also relies on me a lot for emotional support.  Most small children as they are growing up learn independence, to explore, to let off steam through exercise and having a few “funny moments” – as Toby could not move around and had no independence,  his emotions and behaviours could be very focal, and he would have complete meltdowns through shear frustration at his desire to be like all the other children.

Toby has had to focus on so many of the small things in life, he has had to be taught and learn in great detail every movement, under adult supervision.  Now he has been given the ability to be free from spasticity and pain, and although he now has to re-learn all of the movements,  he will learn to sequence them correctly and he will retain this knowledge.

Since Toby was born and we realised the extent of his disabilities, I have lent him my whole person in order to enable him to enjoy life,  I am his arms when he cannot reach objects, I am his legs when he cannot walk, I am his eyes when he is trying to see something, and mostly I am his voice when he is too shy to communicate. 

Slowly, slowly, these last few weeks,  I am being allowed myself back,  he is talking more now and speaking to people, he can move more easily and fluidly,  without so much effort,  we care also tackling the problems Toby has with his eyes.  It is a gradual process, but I am being allowed my body back, and handing back to him his new little "fixed" body that so should have been his from the very start.

Today has been a good good day. When Toby arrived at school this morning, for the first time in his life he was able to sit on the carpet with  his friends!!!!!!!  Previously he had to sit on a special needs chair at the side of the other children, now, he can cross his legs, sit comfortably on the floor and maintain the position.  Toby was so pleased.  In assembly, he was also able to sit on the floor instead of his special chair and he loved it!!!

Toby had a super lunch break with his favourite dinner lady,  he teases her something rotten and they share many special moments together, Toby has missed her a lot this last month, so he was really looking forward to getting back to poking fun at her and sharing a giggle - today they had a good time.

After school today we had our first physio session since the operation - this was something that I was very anxious about as I really wanted Lyn's opinion on what she thought of Toby's "new body".   The opinion was amazement,  Lyn could not believe how different Toby felt, his range of movements, and she was also impressed at the strength that Toby had even this soon after the operation. I asked if now - she thought we had made the right decision, and she confirmed that this was the best thing that could have ever happened to Toby.   It was super to have this confirmed, as although we knew it was the right decision , UK medical opinion is very negative about SDR, this is due to lack of knowledge and outdated opinions.  Thankfully Lyn has been very supportive throughout our whole journey, but she had never worked with  a child who has had SDR and I was extremely interested in how she now felt.

UK opinion dictates that when the spasticity is removed, you are making the child so weak that they cannot walk and will lose a lot of their functionality - this is so not the case, and it is beyond comprehension why this belief is still upheld.  The progressions that Toby has made in this past 4 weeks have completely blown us away.  He is thrilled with his "new body" and is constantly letting us see his new movements.  Surely people should start to listen to us parents and look at the smiles on the children's faces to know that this operation really works and we should not deny our little ones from feeling comfort and a better life, just through ignorance or prejudice over antiquated data. 

I also found out today that Toby's blog is receiving some "high level" attention.  Toby's orthopaedic surgeon is regularly logging on and reading about how he is coming along, he too has never had experience of a post SDR child.  So "hi" if you are reading and I think you will be amazed when you next see him in clinic.  The changes are profound, and after speaking to Lyn today, I also understand that changes are afoot in Frenchay re introducing SDR, as a family we are more than happy to help in any way we can if it allows other children to feel what Toby is now feeling.

Also keeping a regular update on Toby's story is the former Chief of Staff of the British Army, Field Marshal The Rt. Hon. The Lord Inge. Peter and his wife are family friends, and it is great to know that our story is reaching far and wide, and hopefully people in influential places are possibly taking note! 

Last night I also received an anonymous email which was stating the most hurtful and damming comments about myself and little Toby.  This is something that I have not experienced before and I was completely aghast by its content and personal attacks.  As I always have and always will, I will carry on with my head held high, knowing that I am doing the right thing and for exactly the right reasons - I have no other agenda than to do what is best for my darling Toby and I will continue to do what I can to help other people who are in a similar situation, to gather information and make informed decisions.

Hi,

Sorry for the delay in posting for a few days.  Since we have returned,  after over a month away, there has been so much to sort out. 

I will try to go over what we have been up to.

On Monday, our last day in St Louis, we had two appointments at the hospital.  One was to see Michael and be discharged from therapy, and the other the final consultation with Dr Park.

Toby was not entirely compliant in therapy,  he was quite cross that his scheduled bike ride was cut short as some video footage had to be taken of his gait pattern.

The next appointment was the one we had been waiting for.  This is where Dr Park would observe Toby and his new gait and advise what the future plan would be.

Given that Toby was quite cross,  we were feeling slightly on edge as to how Toby  might behave.  Toby has been known to have complete meltdowns in medial appointments before today and not let anyone near him!

I was really hoping that this would not be the case today. Anyway, despite throwing Ian and myself a "cross" look,  he did exactly what Dr Park requested, he did lovely walking,  sitting, attempted a jump, and even tried some running.  Dr Park gave a final summing up that he expected Toby to be walking very well within 6 months, and might even be able to run.  We were to press ahead with the rigorous therapy schedule, and encourage lots of running, and good quality exercise. 

We had anticipated having to return to St Louis next year for a 12 month follow up,  but Dr Park said that this was not necessary, as Toby was doing so well he did not anticipate any other problems that might need his attention. 

We were thrilled by this news,  it was entirely unexpected that we would not have to return, and has given us a real confidence boost. We celebrated that night with a meal in "Applebees" restaurant,  and started the mammoth task of packing the hotel room up. The task of packing was not as easy as I had thought - I was bringing back the same amount of clothes and the like that I had taken, yet my bags seemed to be so much smaller!!!!!

It took an age to get Louis and Toby off to sleep as they were excited at the impending journey the next day,  when they did eventually drop off,  I was able to crack on.  It was a very late night, followed by a very early start the next day, but eventually we got packed up and managed to get it all in the car.

A swift breakfast followed, where we said goodbye to "Angie" a lovely lady who served in the breakfast room, we had become very friendly during our time in America and every morning she would greet us all by name and make us feel so welcome.

Saying goodbye to the hotel staff was very sad, they had made us feel so welcome,  they knew our reasons for being there, understood when we wanted to chat, and gave us space when we were at our most anxious.  They were so helpful whenever we needed directions or help on places to visit.

I was wanting to compile a scrapbook of the whole Toby journey, and wanted to get a typical American type binder whilst in St Louis, and purchase the papers and accessories that I would need to theme each page.  I love beautiful papers and boards, colours and textures,  so wanted to visit one of the infamous scrapbook stores whilst over here, as this is where scrap booking first started.  Whitney at the front desk spent the best part of a whole day surfing and calling stores, and gave me a mass of information when we later returned from hospital as to where the best store would be - like I said, so helpful!!!!!

When we arrived at the airport, we found the flight was delayed by 1 hour,  this quickly became 2 hours, then 3,  when we enquired as to what the problem was, there were bad thunderstorms over New York, and as that was where we were flying to, to make our connecting flight.  They had stopped all incoming and outgoing flights, and unless we took off from St Louis in the next 2.5 hours we would not catch our UK flight.     Nightmare!!, given the issues we had experienced when flying out, I was going off international travel very fast! Anyway, at 16.45 we were called forward to board.  We made it to Newark by the skin of our teeth and then straight on to the connection with 20mins to spare.

Toby stayed awake for 30 mins, and then fell fast asleep for 5 hours!!! Joy of Joys!!  Louis on the other hand had got himself so excited, he had a headache and was starting to feel sick.  He catnapped through the flight, and just as we were disembarking, he promptly threw up!!!!  Luckily I had a sick bag to hand and managed to catch everything, and then an overly cautious cabin crew member brought out a bin liner and gave it to us, jut to make sure nothing missed should he be sick again!

Once in the UK, our lovely neighbours were there to greet us and give us a lift home, they had been house sitting and chicken sitting for us the whole time we were away - we are blessed to have such lovely neighbours! XXxx

Welcome home hampers filled the house, it was great to be home!!!!!!!!!!!!!!!

Champagne, olives, wine, croissants, a cooked tea, cakes, desserts, welcome home cards, someone had done our shopping for us, it was amazing.

The mail we had received in one month was unbelievable!  so much of it junk - that was a job in itself.

That night as the boys settled into their rooms and we settled into our comfy bed, I should have known it was too good to be true! Louis came through saying he could not sleep, he had jet lag, as we all had and was wide awake, and did I mind if he slept on the floor in our room for a little while. (I totally understood, we had all slept together in the same room for a month)  so Louis gets cosy on the floor,  which was shortly followed by a loud voice on the audio monitor "I am not having this, if he is in your room, then I should be too!")  so in comes trouble - although he cannot sleep on the floor, so he comes in to bed with us!!  It was like a scene out of a comedy movie,  with us all cramped into the one room together, just because we did not want to be apart!!!!!

It has taken a few days to get everyone sorted, but now both boys are back in their own rooms. 

On Friday, they both went back to school,  Louis was practicing for his school play and Toby had a school trip to attend.

I went with Toby for the day,  and we thoroughly enjoyed a great day out.  It was lovely seeing all the children again, and there were lots of parent helpers there too, so everyone really enjoyed themselves.

Toby was his usual quiet self,  it amazes me how such a noisy, stubborn, cheeky little boy can turn into a quiet shy little mouse when with his class mates!  This is something that I really want to address next school year. 

Toby always has had to rely on adults for physical help and support and has seen grown ups as much more helpful too him.  As a consequence of this, he seems very reserved with other children - not with Louis might I add, he rules him with an iron rod!!!!!! 

These social niceties will come, he has just had lots of other things to think about up until now.

We have spent this weekend, starting to think about the equipment Toby will need to help him with his recovery.  A treadmill is head of the list, but has to be one that is very smooth and can operate at very slow speeds - it is a complete minefield when you start looking into all of this, but we have a short-list and will be getting it ordered very soon.

We have physio at home tomorrow, so it will be good to catch up with Toby's  therapist and let her know all the exciting changes that have been happing in the Cox household!!!!!

Today is our last full day in St Louis,  as we start the journey home tomorrow. 

We had a super day sightseeing yesterday,  we visited a little 18th century town called Kimmswick, that has been stuck in time for the past 200 years!  (with the exception of the gift shops of course)

We spent the whole day there, just strolling in and out of the olde worlde shoppes and museums.

We had lunch at a restaurant called "The Blue Owl" and it was great,  they make over 100 different cheesecakes, pies and desserts.  Although I did not have one, it was a beautiful treat looking at them all on display.

The weather was HOT again,but this time the humidity was so high also.  My glasses would steam up every time we stepped foot outside the air conditioned buildings, it was mighty uncomfortable. 

Gift shopping all finished, we hopped into the air conditioned car and headed back - it felt so good to cool down.

Once back at the hotel, Louis developed a really bad headache,this was probably due to the humidity and maybe a bit of tiredness .  Louis suffers badly from migraines, so a dark room, some quiet and a cool flannel on forehead were in order.  He felt better after a few hours rest, poor chap!!!

Today is our final appointment with Dr Park,  and we then have our final therapy session with Michael.  It feels really strange to be leaving,and I have mixed emotions about it all. 

When I think about our house, with its comforts, space and privacy (my chickens!), and not forgetting my lovely bed! (which I have missed incredibly), our friends and family, I really want to come home.  Likewise,when I think of the great team here and the safety/security offered by such a wonderful children's hospital it will be a wrench to leave.

One thing that I am really looking forward to getting home to is getting Toby back into his own room and being able to monitor him with all of his night epilepsy monitoring equipment.  We brought his bed monitor out to the US with us, but it would not work due to the different voltage system,  so I have had to rely on his bells for any signal of a seizure, and I have found it quite disturbing not having him as safe as I have him at home.  I even went out and bought a tiny guardian angel trinket to put by his bed just to keep him extra safe whilst we are here!!!!!  I always have been a worrier, but in the case of epilepsy, I have good reason.

The boys are all still asleep, and I will be waking them soon,  today is a day of appointments, goodbyes, packing and apparently Louis needs some "baseball boots"???????? 

I will try and blog later to let you know what Dr Park thinks in his summing up.  It is such a fabulous 4 weeks we have had over here, and the knowledge that we have given Toby the very best that modern medicine can offer him is a great comfort. 

We have made some super friends over here, ones that we will never forget and endeavor to keep in touch with.  The hotel, and I do not think I have mentioned them yet, has been wonderful.  I would not consider going anywhere else if I had to comeback to St Louis.  The rooms, the people,the food, the convenience of the shuttle bus, everything is perfect, and I do not feel you need to be any nearer to the hospital than this.  It is a mere 5Min's on the shuttle to The Children's, phone calls free, and the staff in the hotel understand what you are doing over here and are so friendly and helpful.

Now I have said all that, I am doubting my  desire to come home again!!!!!

have a good day and see you very soon!
XXxx

Well here we are, just a few days to go before the mammoth journey home! 

We collected the rental car on Friday, and have not stopped sightseeing ever since.  Poor Ian,  had a bad headache yesterday as we really pushed him to the limits as we wanted to see so much!  We even visited a "drive through" ice cream shop which the kids loved, ordering their ice creams like they were visiting McDonald's.  We then had to sit in the AC'd car to eat, as it was in the 90s  outside and they were melting too quickly!

Today we are visiting a place called Kimmswick,  where we can do some gift shopping!

Toby continues to do very well, he is getting more confident all the time, and yesterday even attempted dressing himself.  This was quite exhausting for him, and I found him lying on the bedroom floor in a heap,when I asked what he was doing, he reminded me how difficult it was and that he needed to rest (in a very cross voice!!)

We bought him some new trainers (ones that actually fit - yippeeeeee!!!!) For the first time in his life Toby has fitted shoes!!!!  It was a massive decision for him, but he has gone for lace up trainers.  I  kind of knew he would want laces, as in the past he has always had to have Velcro as they have more room inside, so laces were always a novelty for him. When measured, his old trainers were actually 3 sizes too big!!! (had to be to allow for the splints) - poor little sausage!

Another thing we have noticed is that now he has started to eat properly, his energy levels are maintaining themselves.  He has stopped having an afternoon nap (or three!!) and is able to make it through the full day.

Prior to the op, he would bounce between energy highs and lows and need re-fuelling constantly due to the amount of energy used by his spasticitiy.  As the spasticitiy is now totally gone,  he is able to commute through the day reasonably balanced.  I am hoping that this means the need for regular snacks will tail off.

It also gives me more confidence that he will be able to make it through the school day more comfortably.  Sometimes when I collected him from school, he was so exhausted he could not even talk to me,  he would eat his tea in silence the moment we got through the door, and sometimes would even fall asleep on the kitchen floor!   I have even had to collect him from school during the school day, just because he needed to have a mid day sleep!

When we return, the excitement of planning and purchasing all of the equipment that Toby needs will begin.  With the help of his two physiotherapists,  one NHS and the other private,  we will all start to plan out the therapy programme that Toby will need to stick too.  My approach is going to be very play orientated.  So often Toby has cried and complained at why he has to do so many strict exercises,  when other kids just have to fill their day with play/fun and clubs.  So I am aiming to make this next 6 months lots of fun, through play and therapy. 

Longer down the road, I think it will be Christmas time before we can really get a feel for what Toby's potential will fully be.  They do say that the progressions can be seen for 18 months or so, but they slow down in that time and come more slowly.  The new things that we have seen sine the operation have been amazing fr us, even more for Toby.  But perhaps people who do not know Toby very well might not be able to see these things so clearly.

Anyone who is expecting Toby to come home from America walking would be very ignorant  to what the whole  procedure is about. 

Time is going to play a great part in his therapy,and that is what all of our friends and family now need to give us to enable Toby to "get there"

We always said the recovery /therapy period would be the hardest work, well the operation was the most emotional, by far, but now as we enter this stage, please help us to help Toby by giving him the support and space to explore his new motions and feelings, and start to be able to play like any other little five year old, and enjoy the comfort of a "new" body - the likes of which we all take for granted.

XX xx

Today is Friday,  the last weekend before we come home after this incredible journey.

Whilst at physio yesterday I spoke to Michael about Toby's foot being sore.  The consensus of opinion seems to be that he has strained a small muscle in the arch of his foot (a consequence of trying too hard whilst wearing no shoes!!!)

So we are taking it easy for a couple of days, to let his foot rest.  We also picked up Toby's "Polly wogs" whilst at the hospital, "now what are they?" you might ask - they are the insoles for his shoes, the replacements for the afo/dafo combinations he used to have to wear.  Today we are shoe shopping!!!!!!!!!!!!!!!!!!!!!!!!!!

Toby's appetite is starting to pick up again now and he is eating more like his old self,  food is a huge part of Toby's daily routine and he could eat more than me most days, but since we have been in the States, he has hardly been eating.  His body obviously needs fuel to enable itself to repair and recover from the huge trauma it has been through, and he needs to build energy reserves for the months ahead. 

On the way back from the hospital yesterday, they boys called into a barbers to have their hair done.  It took an absolute age, but the end result is good and both Louis and Toby are happy with their new haircuts. Toby especially,as he wants gel re-applying all the time to keep it spiky!!! He even remodeled Grandads hair yesterday to give him a matching look!

So today we pick up the hire car, and we are looking forward to traveling further afield to see a bit more of the area.  One of the places on the list, although it is not too far away, just really difficult to get to is a place called Tilles Park,  it is a play park for disabled children where all the equipment is accessible for wheelchair bound children, so we will call through there on our way past later on today.

Yesterday Toby amazed us with his new sitting positions that he can get into.  He can actually sit crossed  legged and maintain the position.  He has only been able to do this momentarily  before as his legs would "ping out" due to spasticity.  He can also fold his arms whilst in that position.  His first thought was that he would be able to sit on the carpet at school instead of having to sit in his "special needs" chair.  At present he has to sit in an adaptive chair on the carpet at the end of the row, now Toby hates this as he wants to be in the middle of the other children, who are up to mischief chatting and the like, not sat on the end next to his support worker. These little things that are not thought about, but he obviously dwells on.  We will have speak to his teacher about this when we return.

We also had some good news re Tobys statement.  As Toby so obviously has special needs,he has to have a support worker to assist him through the day and ensure all in the environment is accessible for him and that he is kept safe from trips and falls.  Just before we came to St Louis we went through the annual review, where everything Toby cannot do is highlighted and documented, we all have to write a report on how we think the school/Toby is coping and what any shortfalls, how they can be addressed.  I found this incredibly upsetting. 

Not only were we dealing with the impending operation, I was being reminded of everything Toby could not do as a result of his disability. 

I admit to getting quite upset on numerous occasions whilst having to discuss it all through with various parties.  But then that is me, I am extremely emotive where Toby is concerned, and sometimes having to discuss these issues in detail just brings everything home to me.

The reports then are sent to the LEA, who process the information and decide whether to keep Toby at his current level of support, or reduce the amount of support offered.  As you can imagine, leaving the country whilst this was being decided was not an easy thing to do,and I have been waiting with baited breath for an outcome.  Last year the initial LEA support offered was outrageous and I had to fight for months to get the decision  overruled.

Well Toby's headmistress mailed me a few days ago to advise that they are continuing to offer Toby full support throughout his school day, so we can now start planning the next school year.

I really do think it outrageous that families who obviously have so much to cope with through daily life and all the emotions attached  to having a disabled child are continually put through the mill to fill in mountains of paperwork, fight for their cause, prove their child's disabilities, speak at/attend meetings, when all I want to do sometimes is sit down and have a bloody good cry at the injustice of it all. 

But life goes on, and if we are not shouting his corner, then nobody will. I wish that our life was plain sailing and easy going, and not such a challenge.  I know other mums with affected children will know exactly what I mean. 

I have learned to have strong shoulders, and wear a convincing smile - what a skill I wish I did not need to have. Thankfully I have some very good friends, and have needed a few hugs in the playground these past few months -I tell you!!!!

Enough complaining, on with today, and it is going to be a good one I am sure of it!!!

We are so looking forward to coming home now.  We are going to miss the team at St Louis Children's hospital, they have been truly amazing for us.

We have just returned from breakfast, and caught up with some of the other English children here who have just come out of hospital.  They are a little older than Toby, so can describe their feelings quite well,  it is amazing to hear how they now feel. 

When we returned from hospital yesterday, Toby wanted to practice his unaided walking,  he is so determined to be independent, his weakness is just not allowing him to at present.  We explained to him that it will come and he needs to eat more (his appetite has been touch and go since the operation) and to practice exercises and get strong.  To this end,he ended up pushing himself a bit too far yesterday, took a tumble and says he has hurt his foot.  I have examined it as best I can, but will speak to Michael later to see what he thinks.

It is nothing serious,  I am sure of it,  we just need to be a bit gentle with him for the next few days. 

Dr Park will this month be celebrating his 2,000th SDR procedure,  what an achievement that is.  People have been asked to write their experiences on the facebook Selective Dorsal Rhizotomy page,and some of the stories are truly heart rendering!  If you have the opportunity, then please take a look.

Yesterday I found out that one of the ladies who was such a fabulous support and helped so much in fund raising for Toby is moving to a different part of the country.  This is sad news for us.  From the moment we decided that SDR was the way forward for Toby,  she immediately grasped the magic of what we were trying to do and launched herself into helping us achieve this goal. 

Through the whole 3 months of fund raising, she offered support, help at events and advice, and would often pop round to our home, especially when Ian and myself  were having wobbly moments (through shear exhaustion and shear frustration) and provide sensible and honest advise, we are truly thankful for all that you have done Caroline,  and Toby is a very lucky little lad that you were in his life when this opportunity for him was available.

There are so many other people that I need to thank, that have realized the magic of the journey and played no less a part in the whole experience.

It has been suggested by many that I try to publish Toby's story,  to allow other parents to share our experience and perhaps empower them to doing the same for their children.  I will do all that I can to help any other family achieve what we are experiencing at the moment- for us, it is like our little boy has "been set free" and it is beautiful to watch!

Hi everyone.

therapy went fine yesterday, it was good fun for Toby in that Lori squirted green foam on the floor and Toby sat on a chair barefoot  and had to draw pictures in the foam with his feet!  We have never done anything like this before and Toby thought it great fun.  The purpose of this was to isolate the tiny muscles in his feet and start making connections with them - our eyes have really been opened to the different approaches to therapy and we really like the American approach, it is much more play orientated, some of these ideas I will be taking back home.

As a result, Toby has now got green stained feet, not that it bothers him at all.

Yesterday evening was a very special evening. We were invited to our new friends home for a BBQ with their friends and family.  It was so nice to be included and invited.  We were picked up at 16.30 and made our way to their house. 

We had iced tea out in their garden with nibbles,   and waited for the other guests to arrive.  We then went on to have a lovely BBQ followed by watermelon and chocolate brownies.  The chocolate brownies were great, all the kids loved them and quite rightly so - Lettie is quite famous for her brownies!! We even were allowed some to bring back to the hotel - so I have some should I need a quick fix!!

The evening was so nice,  to be included right into the heart of this family, and gave us an insight into typical American life.  We feel we have made friends for life,  they have followed Toby's story,  arranged for Louis to have day trips with their friends,and  given us so much help and advice on the local area.  Gene came to see us and Toby on the day of his operation whilst in intensive care,  this was particularly comforting, as Gene is also a retired minister, so whilst he was with us that night, I felt we were in very good hands all round.

I did not want the evening to end,  but Toby was near falling asleep.
A great evening, with good, true friends, people that we will definitely keep in touch with. 

Today, Ian and Roland are off to a charity Lions lunch, so Barbara is joining us on our daily physio trip.  It is still incredibly hot outside,  so I do not think we will be doing much sightseeing today.  We are hoping that Toby's shoe inserts will have arrived today, so that we can buy him some new trainers, this time the proper size!!!  He has his eyes on some "Converse" boots!!

We have arranged a hire car for Friday till Tuesday, and this will enable us to get to the airport on Tuesday.  We are looking forward to being able to see more of the local area and having more freedom.

Take care everyone,  and love to you all.

XXxx

What a sooper dooper day yesterday!!!!!

Louis went to "Six Flags" with his new American buddies,  this is a fun theme park.  He spent all day there with the family and had a great time,  when he got back he looked exhausted,  I kept asking was he tired, but "No" was the stock answer.  I then found him asleep on the bed, out for the count!!!

Us three were left to our own devices yesterday, so we trundled off to physio at 11am,  another session with Michael.  
This is where the first of our three super moments happened.

Toby decided, with Michael's help that he would take his first steps totally unaided!!!!!!!!!!!!!!!!!!!!!!!!!  This is the first time he has done it, no hands to help, no braces, no sticks, it was just a few, but he did it!!!!! Both myself and Ian were in tears, Michael was amazed, and Toby was a bit confused at how different it seemed to feel!!!

We never thought he had it in him this soon, to take a few steps.  Michael said Toby was such a strong little boy, as he was so "spastic" prior to the operation, it had made him incredibly weak once that was taken away from him,  to take some steps this early on was amazing!!!!

Then whilst still on this therapy sessions, Toby was riding his special needs bike, Michael  went on to explain that Toby no longer needs a special needs bike at home!!!!!  He will cope very well with an off the shelf shop bought one! His thigh and calf muscles are no longer spastic so that that he needs to wear calipers to pull his legs open to ride a bike, his sitting position is now so good that he no longer needs a back brace/tummy support to hold him up.  The bike will need stabilizers,or "fat wheels" as they call them over here,  but Mike even suggested that once Toby has mastered a normal bike, he might even be able to lose these!!!

And so on to our last "wowed" moment.

We popped into a shoe shop, just to have a look,and came out having bought Toby a pair of open toed flip flops!!  Toby has always had to wear high splints on his feet,  that come right up his legs.  To this end, he has had to wear thick socks to stop them rubbing, and then shoes 2-3 sizes too big to enable us to get all the splints into them.

As he no longer needs any splints on his feet, we were able to buy him flip flip style shoes!  Imagine always having sweaty hot sticky feet, whatever the weather?  I really hated having to put it all on his feet when it was so so hot. 

Toby was so excited,  he picked black Nike Velcro flip flops.  For the first time ever he was able to feel the sun on his little toes, he was able to feel the breeze on his feet!  He just kept looking at them all the time and twisting his legs around to look at them from different angles.

It was a lovely sight,  seeing his whole long legs, down to his little tiny feet, all exposed with the sun bouncing off them.  You might think this strange if your child has always been able to wear normal footwear, but for us it was a very special time.  Toby's feet are gorgeous, and to celebrate this momentous occasion, I will be posting a picture of his feet and new shoes  so that you can all celebrate with us!!!

Hi everyone,

This weekend over here is full of celebrations, and we were invited by a local family to join them in their 4th July parade.

We went to a place called Websters Grove and had a fabulous day.

Ian, Roland and Louis all joined in the parade and even managed to grab a seat on the float.  Louis then decided it was much more fun handing out the candy to all the crowds along the route.  These friends have been made through the local Lions club, an absolutely super couple called Gene and Lettie have really gone out of their way to take us under their wing and show us some of the local sights that we would not have ordinarily seen.  Through them we have been introduced to another family who have a boy the same age as Louis, Josh.  The two boys get on so so well, and spent all yesterday whilst at the parade in each others shadows. 

Whilst the boys were on the float, we made ourselves comfy on some seats along the parade route,  it was very hot, but Lettie managed to get us a spot in the shade. It was super fun, and all the floats threw out candy to the kids,which the children thought was great.  When the parade was over,we headed down to the high school fields where there was a fair and  BBQ.  This is where it all went wrong!!!!!  We ate a big BBQ meal, sat in a huge very hot tent, and then by some stupid sense of reasoning thought it would be good to go on some of the rides.  Ordinarily I would not have gone on anything,  but Toby picked out a ride that looked to all intents quite harmless, I grabbed one of the seats with Toby, and my new found friend Jackie and her young daughter took another seat.  And off we  went - the ride was called "tilt and turn"  and I can only liken it to a "waltzer" ride in the UK, but faster!!!  Not good, not good!!!!  URGHHHHHHH!!  felt sick, should I open or close my eyes, should I put my head back or tuck it into my chest, the BBQ taste was quite strong in my mouth - if you know what I mean!!!! and it went on for ages and ages and ages!!!  Toby was squealing with delight,  I was trying to stop him sliding, stop his back hitting the back of the ride,and hold onto my bag.

When it finally finished, I felt terrible, staggered off the machine, got to the first bit of shade I could find and sat on the grass, I felt so sure I was going to be sick, in front of my new friends - how embarrassing!!!

I found comfort in the fact that Jackie also felt just as bad as me, and she too had to have a lie down when she got home later that afternoon.

Louis and Josh were having so much fun, it was a shame to break them up, so Louis went back to Josh's house and had a sleep-over,  he went to church this morning, and had lunch with the family and they brought him home this afternoon.

This morning, we went down to the St Louis Arch for an Air show, which was very interesting, but extremely hot and we could not manage more than a couple of hours before coming back to the hotel.

This afternoon we went swimming, Toby is allowed in the water now, so he was very excited about going.  He was so different in the pool,  normally he is so tight and cannot kick his legs very well,  his hands curl into fists and his body bends in the middle, so it is difficult to get a good swimming position out of him.  He is so different now, so supple and flexible,  the water was really too cold though, so we had a wee splash around and then came back to the room for tea.

All in all a couple of good days, no physio as it is the weekend, so are looking forward to getting back to the structure of hospital physio tomorrow.  Toby is getting stronger every day,  he is still mostly in his wheelchair, and tries hard in his walker.  It is a confidence thing,  he is scared of walking now as his legs feel so different.  This is only to be expected and we will work through it.  We have been working on how your foot/heel hits the ground and then you roll forward onto your toes, this is very exciting for Toby as he never had this range of motion before and he is spending time laid on the floor watching how everybody else walks/feet hit the floor and then trying to practice it himself.

Tomorrow it is back to physio,  Louis is off to Six Flags (a fun park) with Josh and his family - he makes friends so easily and they all love his accent!!

take care and love to you all

XXxx

Hi everyone,

We had a fantastic day yesterday!  Therapy was early with Michael,  and what a session it was.  We had to take Toby's sticks in, as they thought Toby was ready to try and take a couple of steps - with a little hip support/alignment,Toby managed some beautiful walking!!!!  To those of you that have seen Toby walk, his attitude to his sticks is not held in high regard,  he really does not like them and gets quite confused with the sequence that they have to be used in.  We ploughed on and ended us going for a really long walk,  up to the 8th floor to the roof roof garden, where we had a lovely walk in the sun.  It is so beautiful up there,  lots of little wooden bridges, wooden swings,  tropical plants and wind chimes - so peaceful - till we arrived!!!!  We managed a full circuit of the garden and then back down in the lift to therapy.

After therapy we went to Forest Park and made our way to the boating lake.  We had a nice lunch lakeside,and then hired paddle boats.  What an absolute scream this was.  We paddled down to what the instructors called "the basin" where there were 40 foot fountains,  all was going well and we managed to go really near to the fountain without getting wet - then the wind direction changed!!!! and all the water started landing in the boat, we were absolutely soaked through, totally wringing wet!!!!!  The boys thought it was great!  we have some video footage of it, before Ian managed to get the camcorder safely tucked away!

Back to Hospital, caught the shuttle bus back to the hotel, and just had time to buy some ice creams that were a nice cooling treat.

Toby had a good long sleep (2.5 hours!!) once back at the hotel, and then we had our best evening yet.  We walked down to Union Station,  and ate at a seafood restaurant on the lakeside patio,  really good food, followed by buying goldfish food and feeding the goldfish in the lake, of which there were hundreds, and they kept splashing us which made for a great finish to a great day.

Today was also really good day, when I look back to two weeks ago, when Toby was in Intensive Care and what we have been through since, we really needed a day like today! 

Toby has come so far,  and is slowly adjusting to how his body now feels,  I cannot begin to  understand how it feels to wake up feeling so different to how he felt prior to the operation.  It has had such a dramatic difference to absolutely everything about Toby. 

Toby's appetite has tapered off a lot too,  now I am not sure if this is to do with him still recovering/extreme heat, or whether he just does not need to consume as many calories as he did before. Spasticity can mean that a child needs to eat approx 40% more calories that other children just to maintain energy levels.

Ian, Louis, Barbara and Roland are off to the baseball game tonight,  it is too much for Toby to manage all that time in one place in his wheelchair. So Toby and myself are having a cosy night in,  we are ordering a Chinese takeaway and going to watch TV in bed!!! 

We are now back from this morning session of therapy.  It went really well, Toby managed 10 minutes on the treadmill at 1 mile per hour - he was totally distracted by "Lazy Town" playing on the TV  in front of him, and he totally lost track of time.  He then managed 10 minutes on the Biodex machine - this is a machine that targets individual muscles, it is a fully computerized machine that gives spreadsheets on progress, something similar to what a training athlete would use,  we obviously cannot afford to buy him one of these from his funding, so we are enjoying being able to use it whilst we are here.  We then had a session on scooter boards, this was great fun, I took pictures and will post these later!

It is school sports day and BBQ night back in the UK,  so we are thinking of you all and what a good time you will be having - hope the weather is holding out for you!  4th of July weekend here this weekend, so lots of celebrations all round!!!