Sitting perfectly…

Physio therapy session – controlling posture during seating exercises.

Look at this beautiful upright sitting position, using just a peanut ball and a step ladder seat.

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People always show an interest in what we get up to at our private paediatric physical therapy sessions.

Well this is a good example of one of the floor work sessions.
What we learn and what we take away to learn and practice at home with #emersongrant2014

Whilst it is very important for the need to use specialist orthotics to put in place for early intervention on Emerson’s #kyphosis and #scoliosis, – it is also very important that his body learns to grow as naturally as possible.

Just like any other toddler who would learn to find a way to get to where he needs to be, to be able to support himself and to be independent in his everyday life skills.

His mind is telling him he wants to get that toy across the room and he will find away to get that toy.

Emerson has so much determination. He will commando crawl; climb over what ever obstructs his reach; whatever it takes he will succeed in getting that toy!

Specialist Physical therapy after a Spinal Cord Injury is a very important part of Emerson’s recovery, allowing Emerson to try and maintain any function that is not lost by his spinal cord damage, as well as trying to regain any lost function.

Through play, our 2+ year old toddler is being taught how to improve and practice his balance and function in his sitting in a supported and guided way by his professional #physiotherapists, controlling his own body weight in a safe environment.

For me his carer, his advocate, his mum my job is to support, to learn, to encourage and to incorporate his new way of learning this new life skills into our everyday activity in and around the home, so eventually Emerson can move around more independently.

Because Emerson has no feeling from the chest down we need to break down the movements and sensations into individual components to allow Emerson to understand and practice these tasks.

This position you see, is a big work out for Emerson, yet he doesn’t even realise that this is one of his daily much needed therapy tasks, because its so much fun and the activities engage him.

During this positioning, we will introduce different games, that will stimulate Emerson to stretch; reach up high with alternative or even both of his hands, to balance; play using his upper body to support his posture; use wrist extension, arm extensions; extend his shoulders, and use his fingers.
All of this helps to promote his neuromuscular recovery and achievement of developmentally appropriate motor skills.
We often use simple items like a soft, a spiky or a textured ball, with a choice of different colours and count the balls to improve Emerson’s cognitive, physical status, and social skills.

Emerson is able to practice his communication skills in being able to take instruction and give instruction, to ask for what he wants, describe what he wants and communicate giving eye contact.

Thus, of course allowing and positioning his legs and posture in a natural position is encouraging his core strength.
Who would of thought, from just a simple sitting position all of this could be achieved…

We know we are doing something right and by strengthening his core, we are also helping his vital organs.

We are allowing him to not put pressure on his kidneys, lungs, respiratory, whilst leaning forward with his worsening kyphosis.

We are strengthening his leg muscles to slow down the weak low bone density and osteopenia.

Just because Emerson at the moment shows good upper body strength in being able to move his arms and hands, sadly this doesn’t mean that he has full upper body feeling or sensation.

We need to maintain and preserve his sensation and keep this active as much as possible – all through play.

All this in one simple position, that is working so many parts of his body and brain – yet Emerson isn’t aware – all he knows is this is fun!

We know this is fun for him, because he has a big smile on his face and he asks for “more game playing” and “whats next?”
As a parent, we need to understand everything to do with a Spinal Cord Injury, how we can best keep our child healthy and fit, how we can avoid further health complications and how we can manage his everyday additional complications in a positive and fun way. #earlyintervention

All I can say is THANK YOU to all the people who have donated and have completed fundraising events for Emerson, to allow us to continue to research and fund the physical therapy rehabilitation options available for our son.

Thanks also to the World Wide Web, that has allowed us to connect with people world wide, who are in a similar situation themselves or with a family member. Thank you to all those people that have reached out to us and let us know we are not alone on this long journey.

Thank you Thank you Thank you, may we continue to be able to help and enable our son Emerson to be active, fit and independent and have a healthy future.

#feelingblessed #spinalcordinjury #findacure #arachnoidcyst #sci #cure#hope #physiotherapy #corestrength

www.gofundme.com/emersongrant2014

 

 

FES BIKE demonstration

Here is #emersongrant2014 enjoying a demonstration on the RT3000 #fesbike with Alex from #cyclonemobility

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Children with neurological impairments have much to gain from FES activity based therapy as they are still growing and have higher levels of neuroplasticity.

Children who experience spinal cord injuries (SCI) may develop many complications, including loss of bone mass, osteoporosis, and pathological fractures.

FES is a well-established rehabilitation technique that uses pulses of electrical current to stimulate peripheral nerves evoking muscle contractions and patterned muscle activity. With Restorative Therapies systems, FES creates patterned movement in the arms, legs and trunk. FES enables muscles to work and perform activities even though the muscles may be weak or paralyzed through neurological disease or injury.

Why is active therapy important?

During passive therapy, muscles don’t actually do any of the work. Arms and legs are moved mechanically, by a non-FES cycle for example. Active therapy, on the other hand, allows muscles to do the work they are meant to do. This is achieved either by an individual moving their muscles on their own or when muscles are activated by FES. Either way, active therapy means muscles are working and performing the activity. FES evoked activity allows individuals to regain function, maintain their health and combat the secondary health complications of immobility.

We are hoping that The 300 challenge will help us raise the much needed funds to purchase an FES bike for Emerson to use in the home approx. 4 – 5 times a week. We need to increase and improve his low bone density and stop his osteopenia getting worse.

The cost of this specialist equipment is £17,000

The cost to attend a specialist centre 4-5 times a week would be approx. £3375 per month that is a staggering £40,500 per a year, plus travel costs.

Therefore, it is more cost effective to purchase a FES Bike to use in the home.

https://www.justgiving.com/…/emersongrant2014-the300challen…

Join our 300 Challenge, We need 100 People, To raise £100 each In 100 days

https://www.facebook.com/events/1992997834280954/

#the300challenge #emersongrant2014 #arachnoidcyst #spinalcordinjury#FESbike #cystonthespine #physicaltherapy #physiotherapy#Activetherapy

Finding Hope in art and sports

16 months ago, our family life was turned upside down. We had spent over 3 months in a hospital and quickly had to adjust our direction in life. Whilst #EmersonGrant2014 was a patient at Stoke Mandaville spinal unit every day we walked the corridors to get Emerson used to his new life in a wheelchair.

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Emerson always went up this art work of @davidweir2012 and wanted to race, from that moment we realised our life was not over – we just had a new life to embrace.

This picture gave us hope and made us realise that we will not allow Emerson’s disability to define or restrict him.

He can still do all the things he desires, he just needs to find a new way …thank you #davidweir for providing us with hope and certainty in tragic circumstances 💪

#wheechairlife #anythingispossible #nevergiveup #believe #hope#spinalcordinjury #arachnoidcyst #cystonthespine #sci #findacure#weirarcher

 

IBM festival of innovations

I can not contain my excitement anymore…Over the past 5 or so months, we have had the pleasure of being involved in an IBM innovation. Creating an app for #EmersonGrant2014 that would manage and make our life with Emerson’s everyday health complications with his Spinal Cord injury, just that little bit easier to manage.

 

We were involved in the IBM design thinking session, a hackathon and last week we were invited to be guest speakers at the IBM Festival of innovations.

We spent time with the IBM team and discussed and advised on the issues we faced as a family on a daily basis from managing Emerson’s Autonomic dyresflexia, body temperature, ambient room temperature, heart rate, BP and sweat levels to name just a few.

At this stage there is still along way to go before anything is commercialised, however we feel that once this kind of solution has been designed for Emerson, it could also be tweaked to help lots of other people globally in a similar position.

Families with children with spinal cord injuries( SCI) to manage the complications associated with SCI through IBM Cloud, Mobile and IOT devices. We all have one thing in common and that is for our children to lead more “normal” lives and to do all the things the general population take for granted such as going to school/nursery, getting a good nights sleep and to go on holiday.

We will be working with the IBM team over the next few weeks to tweak and finalise this amazing innovation that matters.

https://youtu.be/IcBFzE0pLuc

Watch this space for further developments

#emersongrant2014 #spinalcordinjury #nevergiveup #hope #believe#IBM #innovations #crowdfire #cnbc #health #healthcare #lifesciences 

Hydro-Therapy at Shriners Hospital

‪Lovely seeing #emersongrant2014 enjoying his hydro session whilst at Shriners Children’s hospital in Philadelphia back in the summer 2017. @shrinersphilly

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The smile says it all, the amazing work these guys do makes us feel confident and believe that anything is possible.

 

Shriners Hospital for children in Philadelphia provides specialised care to children with orthopaedic conditions and spinal cord injuries.

Did you know that when you shop at Amazon you can select this charity, so they receive a % donation #simplefundraising for such a good cause

 

 

Diaphragmatic breathing after spinal cord injury

Diaphragmatic breathing after spinal cord injury

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An interesting read – Emerson’s level of injury is C6/C7 – Feeling cautious about being around people incase he catches a cold that will turn very quickly into a life threatening complications such as pneumonia or bronchitis – I’m wishing the winter days away and lay awake at night preying he doesn’t end up in hospital over Christmas again 😠 right now this moment in time I’m not feeling positive I’m feeling lots of hatered for #spinalcordinjury and the complications it brings – when I eventually fall asleep tonight I will wake in the morning and be positive again because that is all we can do!

http://spinalinjury.info/diaphragmatic-breathing-spinal-cord-injury/

 

Fundraising event – Afternoon tea

Blooming Great Afternoon Tea event fundrasing for Emerson Grant.

23658563_523278214696782_4408647340461047393_nA few seats still available for this exciting Afternoon tea event at #powersweybridge in Weybridge, Surrey.

Enjoy a delightful fundraising afternoon with friends, treat yourself to a fancy tea with prosecco on arrival, followed by some delicious cakes, scones and sandwiches filled with delicious fillings

Powers restaurant Cafe on Oatlands Drive, Weybridge, Surrey have kindly donated their premises to hold a Blooming Great Afternoon fundrasing Tea event, hosted by Emerson’s fairy god-mothers to raise much needed funds for Emerson Grant.

SUNDAY 10TH DECEMBER 2017
2.30PM – 5.30PM
POWERS RESTAURANT CAFE, 140 Oatlands Drive, Weybridge, Surrey, KT13 9HJ

£20.00 per person includes a glass of prosecco

This is a ticket only event and all proceeds will be donated to Emerson Grant fundraising page.

https://www.justgiving.com/crowdfunding/emersongrant2014-the300challenge

Please R.S.V.P. by 1st December to
Anna-Marina at
amdearsley@gmail.com or
call 07949 50647