Jane Mercer and her dear friend Chris,  who we hadn’t met until last weekend have been busy organising fundraising events for us these past two weekends and have raised over £800! Jane Mercer, a former VSO volunteer got in touch before Christmas last year after having heard, from a mutual friend, about our fundraising campaign. She said that she had some ideas but it wouldn’t be until the new year. Touching I thought and then it left my mind. 3 weeks ago I then hear that she and Chris, had organised a pop up cafe and ceilidh here in Oxford as part of her leaving ‘do’. Jane has recently become a grandmother and so she is relocating to Eastbourne.

Both events were so heart warming.

Thank you everyone for your support and for making this journey something that is also a reminder of the gift of friendship and the beauty of humanity.

The last day of a session at Footsteps is always a tricky one for me but it has been made easier this time by knowing we shall be back in 3 weeks time. And, hopefully, we will have had the Botox injections by then.

When we started 3 weeks ago it felt Thomas was coming through another growth spurt and where the spasticity in his hamstrings and abductors were as tight as I had ever known. Of course, we can’t stop them from growing but even the most minor transitions for a person with CP, means giving up the temporary balance they’ve worked so hard to attain and finding their footing in a new situation, a new body, is so exhausting.It’s constant hard work so though this session has gone well and he has worked so hard throughout the 3 weeks, the spasticity is holding him back. It’s seeing this daily struggle that makes the path we are travelling down clearer in some ways. So, we shall see how he responds next week to the Botox. We shall see. In the meantime, enjoy this collection of photos from this last session.

Today was the last Sunday Sessions gathering of the winter season. Another great line-up of bands. By doing a raffle at each of the sessions this season, we raised a total of £340 towards Thomas’s fund. Thank you so much to everyone who bought a ticket, and a huge thank you to Dave and Sophie for organising such brilliant family events!

Today was our jumble sale in our local community centre.  Sooo many people had been generous, giving us stuff to sell.  So much so, in fact, that we probably have enough for another jumble sale…

Anyway it was still a very successful (if exhausting) day, and we raised £1032.10. Huge thanks are due to the team of people who helped us set up the hall, man the tables at the sale, and take it all down again afterwards. They worked so hard all day long, and it really looked awesome.

We are mid way through our three week session at Footsteps and I can honestly say I have never seen Thomas work so hard. They are really making him work on his balance and ability to use his own centre ( core) to help steady himself. At times it is painful to watch as he looks in pain and it is exhausting for the wee fella. This last growth spurt has really tightened his hamstrings and so it is making everything so much harder. Hopefully, hopefully the Botox injections will help release some of this spasticity and therefore enable him to continue to make progress. In many ways it makes it all that much clearer that the surgery will be the right option for Thomas but we shall see what the specialists say come the summer which is when we shall have the assessment now. They will only do the assessment 5 months after the injections as by then it will have worked out of his system. We shall see. For now it is all about managing the spasticity and building up strength so we are in the right place.

Nicci’s cousin Anthea runs Twinkle Toes Music, an interactive music and singing group for pre-school kids.  Thomas and Dylan love their CD’s!

For the past several months, Twinkle Toes has been running sponsored music sports days, with the proceeds going to Thomas.  In all, they have raised a fantastic £220.

Thank you Anthea and everyone else involved in Twinkle Toes.  Keeeeep dancing!!

Where has January gone? I can’t believe it will be February in a few days.

January has been about stepping up the physio in order to work on Thomas’ strength before he has the Botox injections. He has been working hard and gaining so much more confidence and independence. On Saturday he even went to the supermarket using his sticks! This is our current aim, to build up his stamina and use of the sticks as his gait ( walking pattern), is so much better placed and controlled than when he uses his walker. It is exhausting for him though and he naturally needs to feel safe so it’s tricky but we are getting there. We have also been trying the Kinesio tape again in the hope that it will help ‘unblock’ his feet.

Kinesio Tape is elastic tape that has multiple purposes depending on where and how it is applied. It is often used to reduce pain, swelling, improve strength , encourage optimal alignment, and decease muscle fatigue. I think it helps.

So, yes, Botox injections this week followed by 2 weeks in casts and then 3 weeks of Footsteps. Hopefully we will have lots of positive news to share.

Our next big fund-raiser will be a jumble sale in our local community centre.  Details in the poster below…

Dan Vale was until recently the key worker at nursery for Thomas and Dylan. He moved to London just before Christmas, but has continued to support Thomas.  He is using his passion for gaming as a way to raise money.  So apologies if our terminology isn’t quite right here, as this is a new field for us!  Dan’s passion is Dungeons & Dragons, and there is a huge community of people who play this together online.

By tapping in to this audience, Dan is hopefully having a lot of fun, whilst also raising money for Thomas.  So far, he’s raised a staggering £2,600.

At nursery with the boys, Dan often went above & beyond the call of duty, and he continues to do so now.  These events take a lot of planning and preparation.  Your commitment to Thomas and generosity with your time is amazing, Dan.

You can read more about Dan’s games here:

https://www.justgiving.com/fundraising/24hourtohelpthomas