Tag Archives: heniplegia

Good News Friday #20


Good News Friday has had to become Good News Saturday this week. It’s not that there hasn’t been any good news until today, just that things have been hectic, even by our standards! I have two big deadlines looming at work (first one met, second one will be a seat-of-my-pants job) and I got a bit carried away with my Story of Mum exhibition on Friday. If you haven’t seen my identity parade, I’d love to know your thoughts.

Anyway, so where’s the good news? Well…

First, I got a seat for Boo for eating and playing. If you follow me on Twitter, you’ll have seen my moans and concerns about the fact that Boo’s OT referrals (health and social services) have not come through, after many months of being on the list, and despite him being flagged as an urgent patient. You see Boo’s increased and asymmetrical tone mean he is at risk of scoliosis (curvature of the spine) if he doesn’t have adequate postural seating.  The Cushi Tush I got him months ago is too small now.

So via Twitter and the blog’s Facebook page I sent out a request for advice from others whose kids have similar issues. I was overwhelmed by the response and decided he needed a Breezi. They are relatively expensive, even before you add the backrests, pommels etc. Boo will need. Long story short: last weekend I won one on Ebay. For £9.99. Yes: £9.99. OK I had to drive 100 miles there and back to get it and it’s a bit bashed about in the corners, but who cares? And even without the bits he needs, I can see it’s right for Boo. A rep for the manufacturer is doing an assessment for the inserts and accessories he needs on Tuesday and he is going to try social services to pay for them. We’ll see. Main thing is he is supported so his hand and arm function can continue (slowly to) improve. And then we need to get something for nursery…

While I’m on the subject of equipment, piece of good news number 2 is that I have sourced a new, safe carseat for Boo. So far he’s been in the 0-13kg seat his sister had and we had hoped to moved him into her old 2nd seat soon. That was before Boo become obsessed with his feet.

This has been good for his attempts at learning to sit but disaster for safety on the road. Using his special low tone/marshmallow body talent, Boo has learned to concertina his trunk down so no matter how tight his straps are, to wriggle our. Trouble is: a) it’s bloody dangerous; and b) he can’t get back up. I got some advice to call a carseat company with lots of experience in seating for children with additional needs. I admit I was a bit sceptical of buying something on the basis of phone advice, but they were great and gave me the option of returning the seat if I needed to. They also gave me tips on supporting Boo in the seat (did you know head protectors work great as lower trunk supporters if you just position them differently?). It has been brilliant! Totally what he needed. Journeys will be much less stressful from now on!

My third piece of good news, after all that, should probably be we’re not yet bankrupt, but is probably that I now have all of Sissyboo’s uniform ready for year one. There’s just the small business of me, needle, cotton, a glass of wine and 5000 name labels standing between her and year 1!

Fourth, … wait for it. I went out. After dark. To the theatre. I went to see Daniel Radcliffe in The Cripple of Inishmaan, a performance that inspired me to write a post about disability and theatre a while back (Radcliffe interprets his character as having hemiplegia.) I enjoyed it very much, although it (or more accurately, some of the audience) also made me very uncomfortable. I’m still working out why. Post to follow soon… But even better than getting out and seeing a play was meeting in person a new friend I had met on Twitter and only since starting the blog. She’s a lovely, talented lady and we had lots to talk about given some of the common ground in our lives. I’ve said it before, but starting this blog was one of the best decisions I’ve ever made!

Last, we have a visit booked to a conductive education centre next week where Boo has been offered a provisional place. I have heard great things about conductive ed for kids with CP. I’ve also heard from others who say it didn’t help their kids at all. But I feel lucky that we have the chance to see if it will be right for us. I’ll let you know how we get on next week. I might even get next week’s Good News Friday out on time. Might

Hope you’ve all got some good news this week. I love to hear from you!