HSP & Me - Team Jones' Story

23/09/2025

16/05/2025

🏃🏼‍♀️

16/05/2025

😎

Tyler has finally agreed to try out knee high AFO's again. Since having his Baclofen Pump fitted we have found that he has a bit more flexibility in his feet and so we are hopeful that this will mean his feet and ankles aren't trying to work against the AFO causing awful blisters like last time 🤞🏻
The next hurdle will be finding shoes that are still cool looking 😎

24/01/2025

Wheelchair services today to be measured up for his big boy wheelchair, ready to start secondary school in September.

16/12/2024

Well it has been another month and so far we are seeing brilliant things from having the Baclofen pump fitted.

Tyler sleeps better, he isn't waking in pain as often which is great.
His walking has improved in that he is able to stand up so much straighter than he was, and boy is he so tall 😁

On Thursday he goes down to having no oral top up which is fabulous and on the 23rd we are back in clinic in Bristol for a quick check up.

His physio wants to have a look at orthotics again to see if we can help give his ankles some more stability which I think is a great idea as now the baclofen is working lots better it should be more comfortable for him.

12/10/2024

😟

On Thursday Eryn had to be recast for her AFO's after the last lot got lost somewhere 🥴
Hopefully she will have some decent ankle and foot support ASAP to help delay her ankles getting worse.