On Sunday, Thomas will be taking part in a 100 metre race at the Queen Elizabeth Olympic Park. We are really proud to be taking part in an event that matches our own aspirations for inclusivity. You can find out more about this event by going to:

http://parallellondon.com/

It will be a real opportunity for Thomas.  He will be helping to raise awareness of inclusivity and equality.  At the same time he will be participating in his own fund raising, alongside all of you, who continue to support us on this journey.

Come along if you want to join the celebrations.

We took Thomas to his first riding lesson yesterday and it was amazing, he was amazing! He got on his horse, Bryn straight away without any hesitation. Listened to the instructors, held the reigns and went off around the paddock and in to the fields. Treasured memories came flooding came back to me of when I used to go riding with my cousin. I remember feeling so free. And well I had a moment. Seeing him riding bare back no less, reminded me that he will be able to experience so much and that he needn’t be held back by his disability. It was a very special day.

While being fun it will also be brilliant physio for his core and pelvis as you really need to engage these muscles to not only stay on the horse but to stay upright. The natural rocking movement is great for hip rotation and for mimicking what the hips need to do while walking if that makes sense. Not sitting on a saddle also means his thighs get a beautiful warm  massage – this is why it is called hippotherapy.

We went to Bristol childrens’ hospital yesterday, to have a first meeting with the team that might operate on Thomas if he is to have SDR surgery.

The meeting went well. We liked the team and the way they delivered the information to us. Thomas was great, and seemed to like the team too.

I think they feel he could be a potential candidate, but that he needs to build up more muscle strength in his core and pelvis first. They have suggested to come back in February and have a more complete assessment. This is a very thorough assessment, and could potentially be followed quite quickly by surgery. By “quickly” I mean April or May.

So, below you will hopefully see a sequence of images that show Thomas achieving yet another step towards independence. He told us very clearly that he wanted to get on the chair ‘all by myself’. Remember that feeling? He did and doesn’t the smile at the end say it all. Poetry.

Check out Thomas in his new Mollii suit ( we are calling it his super hero suit).

This suit has been designed specifically for adults and children with spasticity and other forms of motor impairments due to cerebral palsy, stroke, brain damage, spinal cord injury or other neurological injuries.

It provides electrical stimulation to selected muscles groups in a specially designed 2 – piece garment, helping the body relax and increase movement, functions and activity. The picture is from the assessment we attended back in May.

You can find out more by going to: http://www.remotion.co.uk

The idea is to wear the suit for an hour, 3-4 times a week, ideally while having physio, in order to support muscle strength and muscle memory. Our hope is that it will help Thomas get stronger and stronger and most importantly reduce the spasticity, the tension, building up in his body which ultimately effects his progress and muscle development.

It arrived on Wednesday and he has worn it twice now and so we shall see what his physio thinks next week. We shall keep you posted.

With love,
Us x

So, what a brilliant session this has been for Thomas! He took his first independent steps and has made huge progress using his sticks. He feels stronger and looks taller!

We will be back in October for another 3 week session!

Roll on the summer for lots of practice, practice, practice!

Thomas ended his second week at Footsteps with a great amount of focus and determination by…standing unsupported for 17 seconds.

The weekend will all be about rest and recuperation so he can be ready for another 10 hours of intensive physio next week!

So, yesterday we had a moment…Thomas took his first independent step and by this I mean he took a step with no support, no walker, no sticks, just him! He actually did more than one step but I got all lost in the moment as you can imagine. It was so beautiful. The physio was right behind him, supporting his hips and balance when needed as they weren’t consecutive steps but there were steps. ( I called later on in the day to hear her confirm what he had achieved as I was beginning to feel I had imagined it).

And then today, while having only minimal support in the spider apparatus, he did 105 steps on the treadmill. We are so proud of him.

Lovely to share this with you.

Thomas has started the session with his usual determination and focus though the therapist has said on numerous occasions ‘ …he is a bit cheeky …but so adorable’.

We are trying Kinesio Tape this time to see if it helps. It is an elastic tape that has multiple purposes depending on where and how it is applied. For Thomas, he has had it applied to his stomach and his feet so we shall see.

He is doing 1 hr each day this week and then 2hrs each day in week 2 and then week 3.We shall keep you posted!