Kt in the cap on sports day duty. Her endurance is what we might call normal now. Preferring to run rather than walk these days, following those morning activities she had a full day at school and a play in the garden. Typical. 🙂
Beyond her posture improvement, her stamina and movement efficiency are up there as of the best gifts of the SDR operation that so many of you have helped us achieve. (But let’s keep the momentum shall we Twinkle?:) )
Kt on the bouncer. More confident and relaxed movement. Getting up quicker and no excessive tension across the upper body. Her physio squad of Amy, Judith, Lucy and the Diamond Centre riding team have done such a good job in gradually building her strength, stamina and agility.
The charity funds, so kindly donated by so many for this work, is doing so much good.
Please click for video
It’s good to see improvements, big or small, when your 4 year old is working so hard for them. If you look back over the blog it probably shows a fair amount of smiling going on from Caitlin and you could almost mistake the almost daily physio sessions for fun…and they are, up to a point. After a long day at school, with legs weighed down with tiredness, this is not easy. Being taken away from classmates (she loves her class!) to do more stretching, or missing assembly to go to another session does cause that bottom lip to extend into a frown. In general, she puts up minimal fuss and gets on with making good use of the wonderful donations she received from so many quarters!
The video shows that she has now acquired the core strength and balance to step down and jump from an average step with control rather than just hope and bravado. We have been working on her standing from a kneeling position, growing those tiny quads and hips! She’s quite chuffed with her new abilities! Another skill she is performing for the first time in her life. Those who had seen her before her SDR operation in St Louis will be well aware that she could not jump well off the floor and stairs were scary. High kneeling was not possible then as the tone through her lower body would not allow it or allow us to strengthen the required muscle set. She’s doing well.
Like all post SDR commanders, Kt has a rigorous physiotherapy schedule to fulfill. Here she is after a hard day at the office with physio Judith providing the praise and impetus and trickery that she needs to keep going. 🙂
She currently has 5 varying sessions a week then Dad on Saturdays. This session was an hour – a long time for 4 year olds to do anything let alone this stuff.
Well done little Ms Ford!
A session does not pass by without us saying silent ‘thank yous’ to all those who donated to help this happen. We are so grateful.
Nicole Luongo is vocal on the progress she has made since her SDR op as an adult. Find out more here:
Brad was 18 in the first half of this video and before SDR. He is two years post SDR in the second half.
As Caitlin is now, he was originally diagnosed as child with moderate diplegia. Despite the many interventions that are linked to the condition – botox, daily physio, standers, hyperbarics, conductive, horse riding – spasticty has taken a great, great toll on his body. By age 11, Brad was wheelchair reliant.
His mum urges that people are not misguided by advisors who state the tone (spasticity) is beneficial to mobility / independence. She hails Brad as living proof that removal of tone and preferably its removal as early as feasible, is the best way to address it. She has nothing but positive words for Dr TS Park and his accuracy both on what Brad would have to put into his post SDR work, what he could expect and in what timeframe.
No quick fixes here but thanks to people like Brad and their supportive families there is so much hope. 🙂 Perhaps we will be fortunate enough to meet Brad at the SDR party this year.
Caitlin has been turning her thoughts to dance recently and can be found wiggling her bottom to the odd soca calypso sound or throwing a few shapes to her favourite pop songs (you know, the ones that generally jar daddies across the nation). Already mastering the basic sidestep, Caitlin continues to push her physical boundaries. She has also been teaching herself to jump without assistance. We keep pinching ourselves as it was only a year ago that she took her first lunging steps across the living room aged 2.5.
Her mum has stepped up her stretching as we strive to prepare as best we can for her operation currently pencilled in for August/September 2013. Our thinking is that if she goes in as good as she can be she will get the best out of her post op physio. Only tonight (last night now) she was on the ‘power plate’ in the living room. Her arm and shoulder strength is so good that she can hold the wheel barrow position with the plate going and her legs in the air for a considerable time. And very proud she is of it too! We are hopeful that once this strength is allowed to redistribute across the underused muscles with the removal of the tone, she will be off to a flyer in rehab.
Mum has also been busy focusing attention on acquiring a Statement of Special Educational Need (SEN). Although Caitlin is a capable diplegian, In a school of bustling kids of all ages and without the protective teacher to pupil ratio that her nursery supply extremely well, she would be exposed to constant accidental physical threat due to her balance. Beyond this there are other safety concerns such as who is responsible for her evacuating the building in case of fire? Such issues would not be fully covered by the School Action Plus (SA+) 15 hours of extra care she might receive as standard without the full SEN in place.
Caitlin will be attending the 2013 SDR party mid March in Daventry where we are sure she will be eager to show off whatever her latest trick is!