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.
