A lot of people have given us A LOT of money. Around £15, 000 so far, which is pretty amazing, don’t you think?
Most of it is still in trust for Ted but some has already been spent on therapies, although you’d never guess it from reading this blog. There has been no mention of such things. In fact, I’ve not even blogged about moany stuff lately, so if you’re worried that my radio silence means your £10/£20/£50/£100 has been royally squandered on champagne picnics and spa trips, do not panic. We are still here, keeping busy. Ticking along, doing appointments, home therapies, night feeds. Same, same – but different. With more hope perhaps. And that’s thanks to you.
We’ve raised some cash, done our research and found therapies that offer both hope and real, proven change. For now, we are concentrating on two things: ABR and Snowdrop.
In March we went to Scotland for ABR. The Belgians running the weekend told us that Ted was very weak and needed breaking open and rebuilding. It’s true – we saw the weaknesses. For example, he collapses in the trunk causing poor breathing and reflux, yet he moves as one stiff block with no definition between his body parts. That’s just the tip of the iceberg but we could fill up the whole of the internet going through Ted’s physical problems So now we have exercises – four of them – to do daily.
When doing said exercises it looks A LOT like I’m strangling my son with a pop sock, or just covering his chest with some old bits of flannel and foam. But there’s more to it than that. There is strong scientific evidence behind what we’re doing, based on the laws of physics. But, despite my A* in GCSE science, I don’t understand it so I can’t explain it here. In short it works if you put the time in. We’re supposed to build up to two or three hours a day. That, my friends, is easier said than done. Ted’s ABR is a work in progress.
Then we went to Devon to see the wonderful Snowdrop people, Andrew and Jan. I can’t rave about this enough. Andrew is the first person we’ve seen who talked about Ted’s *abilities*. Usually all we hear about is what he’s not doing and what he may never do. Obviously he also gave us a rundown of his limitations but at least we come away with a programme of exercises that can, we hope, help him overcome some (many? most?) of them.
Having a sick, injured or disabled child is tough on parents for so many reasons. One of them is the helplessness. It’s all ‘wait and see’ and ‘too early to prognosticate’. And all that does is make you feel like you’re wasting valuable time waiting for the worst to happen. All we want is DO SOMETHING. Yes, we go to Fizzibabes (an early intervention physio group) but 20 minutes of waving some beads in Ted’s face on a Tuesday morning just doesn’t seem enough somehow. OK, there’s more to it than that, but in light of Ted’s enormous difficulties it seems a bit useless most of the time. But it’s free so we go.