Spinecor
For his latest brace from Spinecor Oakley had two trips to Sheffield and one to London including Eos scan. It’s working so well for him including most of his time in school wearing it. He has an Xray and Eos scan alternately every 6 months and his back is actually improving due to the corrective design philosophy which also means Oakley has to work in it. Crucially we and Oakley’s various practitioners keep an eye on it out of brace at rest, sitting, in brace sitting and out of brace standing during physio or other equipment or assisted activities.
London orthotics co.
We had two visits to London orthotics co for his latest pair of Ankle-foot orthoses (AFOs) & shoes. The On fitting and testing the difference in Oakley’s capability was immediate, partly as he’d grown to the limit of last pair! L and R is unique measured to the limbs, as is the design of the base of each new shoe. The shoe integration to the base of the AFO is integral , and Oakley now benefits from the continued lightweight flexible shell combined with stiff carbon fibre foot plate – Extremely clever stuff moulding this to shape.
Started school!
Naturally it was quite a day for all three of us on Oakley’s first day of school! We had a lot of prep and work from around a year out (and more in some aspects) which involved Amy closely working through various problems, some significant and highly stressful. School were fantastic working with us and we are lucky with such a great 1-1 assistant they were able to recruit. Oakley was able to have a couple of sessions in school and with practitioners around his equipment in advance of full school day 1. The combination of NHS funded kit, and private kit eg. his wheelchair (as he has a powerchair provided) and his orthotics mean he can safely and effectively develop well at school. We are so proud of him and this was a historic milestone for him and his cohort of SMA type1 children. Learning and play with his new friends all together since the first day of term and Oakley able to start and join in on time is proving invaluable. He has done very well indeed this term despite illness and all his appointments. His current kit at home and school gets adjusted for size (more appointments) as needed. Next we are funding an additional part to his wheelchair to enable safe travel in the WAV reducing the number of lifts for us and transitions for him.
Hospitalised with RSV virus
This was nasty and scary – he went downhill so fast and it took 9 days and nights of around the clock care from nurses, doctors and us to get him better and home. He was on IV fluids, needed an oxygen mask, feeding tube for a time, and a precautionary heart observation – getting woken through the night for a heel prick blood test was not pleasant. Once he had beaten the virus, getting back to normal food and getting lost weight back on at home over following weeks was such a relief. We are lucky he didn’t need more interventions like his cohort and indeed other 3 and 4 year olds with flu or RSV without any conditions like his. Breathing is much harder work with SMA1 even having had the zolgensma drug at the stage he got it. He was such a warrior through this and he returned to his happy cheeky chappy self.
Physiotherapy
Faye Mason-Elias Oakley’s private physiotherapist continues to push on developing co-ordination, balance, strength. The orthoses work in conjunction, all to aid Oakley’s developing independence to get the most out of his crucial early years. There is plenty of evidence now that this is making a difference – reducing the severity of, or beneficially delaying til later possible needed surgeries eg. hips or back, reducing future joint pain and maximising quality of life.
Hydrotherapy
We usually attend his weekly specialist pool session which gives great opportunity for independence and development and fun!. At chest depth Oakley can walk /wade around now unaided! He loves to dive for sticks and can float on his back unaided. More swimming lessons soon! They are currently looking for a physiotherapist who can make a monthly session to work with the various kids that attend.
First ridden wave at The Bristol Wave!
It was time to ride a wave… The instructors at The Wave Bristol were brilliant and he took a wave with the coach, and a couple of waves with his dad! Awesome fun!
12 months complete of Oxford Brookes & Oxford Uni study
We give the Galileo machine back now after a successful and long but brilliant year of monthly visits to Oxford and physio from their lead at our home.
Full time care
The full-time carer role doesn’t stop and Amy always has the next appointment to arrange, session to take or problem to solve. We are getting used to maintaining what Oakley needs around being in school as much as possible. Lots of home learning happening too to help vs lots of inevitable and excused absence. Calls come in anytime and have to be answered. Oakley’s last whole-team review at hospital was all very positive.
