Wednesday, 3 November 2010

New Chair

A long way off being anything like decent photos. But, we put her into it at 11.15, and there she stayed, apart from a few brief interludes, until 5.45.
Upright, albeit at a slightly different angle than before.
I realise she looks a bit dog's dinnerish, but the chest plate is deliberately wonky to avoid the gastrostomy, the headrest is tweaked to accommodate her head slamming seizures, the collar is back after a lengthy absence because it turns out that gravity is stronger when you sit more upright, and we didn't somehow magically fix her head control issues earlier this year. I'm not responsible for the twists and creases in her trousers and hey these really are grotty photos (I am responsible for the grottiness of the pictures, as opposed to the state of the small girl inside them).

But, for all that, we have a wheelchair again. A wheelchair the bus driver loves because he can clamp it safely and easily. A wheelchair we love, because it will hold Mog in a much better position. A wheelchair Mog loves, because when she stretches and goes into extension, the chair extends with her, folding her back up again as she relaxes.

I'll try to get some action shots later this week. But for those with enquiring minds, it's a Wheelchair Services own version of a FoamKarve backrest and seat cushion, fixed onto a JCM Triton Dynamix seat, fastened onto an Otto Bock Discovery wheelchair base.

This gives us custom moulded seating, adjustably tensioned dynamic backrest and footplates, tilt in space, recline, and a chair I know I can push uphill and over grass. It's been 14 months since Mog started having such problems with spasm and not managing in her old wheelchair, 6 months since we sat down with wheelchair services to try to find a solution. If this does turn out to be as comfortable for Mog as it appears to have been today, I think it will very nearly have been worth the wait.

Tia

9 comments:

Sleepwalker said...

That's wonderful news. A lot of work by you all but worth it if Mog is more comfortable.

walkingwithangels said...

brilliant news and if it works for Mog who cares how it looks xx

Anonymous said...

I hope it's as good for her as it looks. Is that wand by her left knee a switch?

Lisa B

Tia said...

Yes it is. It's a Wobble Switch by Unlimiter, and plugs into a LittleMack switch which we put up by her head. She kicks the switch, the Little Mack plays a message. At the moment she's enjoying blowing bubbles, so the switch is plugged into the Little Mack, which has the song "I"m forever blowing bubbles" playing on it, and the Little Mack is plugged into her switch adapted bubble blower, so it blows bubbles for the duration of the song. I'm hoping she'll be happy to swap back to some kind of a greeting soon - carrying the bubbles everywhere whilst trying to push her at the same time is getting old fast!

Anonymous said...

Wow looks like she's grown six inches overnight! K from W!

kitchu said...

that is really incredible... i hope it continues to be just right for her.

Anonymous said...

sorry to say Tia, but the chair looks horrible and it does not seem that Mog is happy. I think you never have seen happy children with cerabral palsy? have a closer look on youtube and enter AKTIVLINE

or search for a therapist named Pasquale Incoronato, he can tell you what is possible.

Tia said...

I posted your comment so that I could reply to it. I appreciated the link on my previous post, where you mentioned a possible alternative. But you know what? I don't really appreciate this comment quite so much.

I'm sorry that you think Mog's chair looks horrible and that she looks uncomfortable in it. I can promise you that she is in fact extremely comfortable. Since fitting the Triton seat, she has become able to sit upright in her wheelchair, not just for a few minutes after a lot of diazepam, but for most of the day.

The chair has custom carved cushions; these are fitted and adjusted by our local NHS wheelchair service which is just a few miles away, they will and have adjusted them as often as necessary to allow for growth and changing posture.

They are covered by a towelling-like fabric padded with foam, in a colour of Mog's choosing (I wouldn't have gone for the black myself but I'm just the mother), washable, stretchable, pressure relieving and breathable - not a pressure mark on her since we got this chair.

The triton dynamic seat has adjustable tensioning so we decide how much pressure she has to put on it to tip it backwards; we can also lock it fully reclined, fully upright, or any position inbetween.

The hoist sling she's sitting on would be visible whatever seat she were in; not much we can do about that since the removable slings don't work well for her.

The Hensinger Collar she is wearing in that photo keeps her alive and breathing; removing it also not really an option.

Yes I've seen happy children with cerebral palsy; take a look at most of the other pictures of Mog here and you'll find a girl with a wicked giggle, and evil grin and a huge amount of joie-de-vivre.

I appreciate that you are (I assume) trying to both sell wheelchairs and increase comfort for children, but I wonder if you understand how hurtful your suggestion that the parent of a child with cerebral palsy might never have seen a happy child with cp?

As far as any seat can do, this wheelchair makes Mog happy. She's not in pain, she can move when she needs to, the frame tilts in space to allow her to rest as needed. But really, the things which make Mog happy are having other happy people around her, getting out and about and joining in with her friends and family, listening to music, going on rollercoasters and fast rides at theme parks, and communicating - her switch which she uses to communicate and interact with the world is at her feet and is the thing you see to one side of the chair. That, along with the collar, would be imported to any other chair she might sit in.

Pasquale Incoronato said...

Hello Tia, hello Mog
I accidentally found your comment on the internet. I just wanted to tell you the first thought that I had looking at photos of Mog: "how much care and attention to detail they have spent to the chair! Beautiful." I agree with you on the anonymous comment that brought my name. I do not know who he is and I do not like the tone and the content of the comment. Certainly a couple of photos are not enough to judge anythink. Sincere greetings, Pasquale Incoronato.

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