a risk and a step to far imo

[2shoes]

just saw this young girl on the news, she has cp and can walk(not normally ) but she can yet her parents are risking everything(and 30 thousand) I assume so she can walk "normally"
but if it goeas wrong she will be paralised..........
yet she can f$$$$ walk!!!!!!!!!!

Having a view, fair enough, and yes I'm sure there are risks (though Lisa's link doesn't mention paralysis) but it's your assumption that they're 'just' doing it so she'll walk normally and Riven's that it's all about making her walk normally because they're trying to make her live up to a 'norm standard' that I don't like. I hate the way Riven uses that term as an insult and always have. I just think it's very easy to judge someone negatively if you're looking to do so and I think it's unfair, just as I would think it unfair if anyone judged you for not getting your dd that op.

you seem to like to post to have a pop imo

As do you.

At least I do it openly though, eh?

!!
I just don't get the digs,
are you annoyed with me cos of something?
if so say and we can move on.

No, not annoyed with you, but you said I only post to 'have a pop' and I was pointing out that you also do that.

I am openly annoyed at Riven's negativity towards 'norms' and have said so. I also dislike the competitive thing that goes on on here a lot and have said so repeatedly. I'm also not keen on anyone on MN somehow being seen as a saint and somehow superior to others, on MN or off. I'm pretty open about these things, I think. I don't post them elsewhere or in CATs, I just say them.

oh I aggree with that, imo we are all the same on here, whatever our dc's dx.
but I am human and like a moan sometimes(espicially at the moment due to rl) but I seem to get grief if I do.......

Is that cos I also commented on your loos/ parking spaces thing? It really isn't personal to you, though I can see now why you think it is. We all need to moan, of course we do. I just think there are enough barriers between everyone in RL - NT and SN - to have hierarchies and mass generalisations and competition and judging on the SN board too! If I react to a post, it's usually cos of that.

why do you keep on saying competition?

I don't care if people don't aggree with me, but I have seen the story of this young girl on the news(so it isn't a private story iynwim) her dad thinks cp is an illness ffs, so I moan on here.

As you know, ds has quad cp and is mobile. As we say, you'll not see him on the catwalk in Milan but he gets around. He is extremely lucky, there but for the grace of god, not a day goes by I don't thank god for the odd quirks of cp that can hit certain muscles but can leave others unaffected.
Personally, 15 years into his journey, I hate that his hand function is so poor. I wish, I wish, I wish.
But, more on topic, in the first five years of his diagnosis we looked into a rhizotomy, hyperbaric oxygenisation, doing a 'Doran' and building waist-high frames all over the house, having a whole-body second skin suit fitted. I'd have considered having him swim with a great white shark for at least a minute. And did none of the above.
But sometimes people do fixate on a certain therapy, they just think there must be a cure and there isn't.
BTW ds has swum with dolphins 3 times now. It's very pleasant and he does enjoy it but even that's a crock of sh**.

i was thinking of dolpins earlier(as you do) a couple of dd's friends have done it, and have to say I thought......oh maybe I should try that.
but niether seemed to improve because of it(must be a wonderful expierence though)

No the cp didn't improve at all.
However...confidence does. And it is a very pleasant, calming (almost transcendental) experience. They are lovely creatures.
The lifejackets used enable total boyancy (?sp) so possible for even those severely affected by their cp to really get up close.

Never used a 'proper' dolphin centre though (ie one making claims that it can help cp), perhaps they got the special dolphins that cure dislocated elbows and hips like ds's.

If you'd like to see some pics I'll FB you some. We did it again last Weds in Mexico - fab!

I guess I keep saying 'competition' because there is often an element, on here and in RL, of people saying 'my child is more disabled/ my life is harder and therefore anyone else's problems are pathetic and miniscule'. There is.

the sad thing is she has good movement else where, she can move her arms and seems to be very normal iynwim, so the parents are risking everything on walking!!!
as for competition......I rarely post on threads now in sn as if I dare to say dd is severely I get digs(have had a thread aimed at me in the past) perhaps we should have a seperate section for people with dc's like mine. would that make life easier?

I'm slightly hesitant to post on this thread seeing the way it is going, but my DS has CP, he can walk independently for a short distance, not as well as the girl on the film and I would possibly consider an op like this.
DS is going to have ops later on in life, probably sooner than I am ready for. He will have at least 2 if not considerably more. These will be on his tendons and possibly muscles also in his legs. We are doing all we can to put this off for as long as possible since they have a better chance of lasting the later you do them. Therefore he has had a second skin suit provided by the NHS, day and night splints, physio and oT from the NHS, intensive private physio, horse riding (we were referred by our NHS OT) and music therapy. However this will not put off the ops for ever. They are standard NHS provision and have a fairly high risk of meaning that he won't be able to walk at all afterwards as it may remove too much of his stiffness and this is what helps him walk. However if we don't do them he will gradually lose his walking ability and contractures will set in that may be painful.

Any op carries a risk, but you need to weigh up for your child what is best, when and how. Comparing to other children is not helpful because as we all know, nobody understands our children like we do. If this op could realistically give DS a chance of considerably better mobility I would consider it. I would first go to the place in the UK and then look at the place in the US. One of the ops that DS will definitely have is done better with less possibility of side effects in New York. When the time comes for that op I will look there as well. All types of ssurgery need developing and I would not dismiss it because it is not common in the UK. However I would do my research fully first. I haven't for this one so can't comment on whether I would do it, but I would consider it.

I have some sympathy with the social vs medical model of disability but for my DS, improved mobility would make an enormous difference to his life. It would be easier for him, not me, HIM, and that is the important point. He can talk, read, will always have probs with writing but will end up using a computer so the biggest thing that causes him to be disabled is his walking. If I can help with that I will.

This is a ramble but I'm going to post it anyway as DS2 is unwell and wants attention!

We are in a very good area so lucky in that respect. I am also coming from the point of wanting DS to be comfortable, he said this morning that his legs hurt in the hamstring area and the physio has told me that this is one of the first things to look out for and may indicate that we should be thinking about surgery. We will do another lot of botox first though.o

The difference with doing the tendon ops for us is that it will be for more than cosmetic purposes as we would hope to gain increased useful movement. Like you I don't know that I would do it just for cosmetic purposes.

I was told that the contractures can cause pain eventually as over time they deform the bones. DS can just about get his legs straight but we struggle with getting the heels flat at all. I thought that the ops were also to help with the reduction in pain in the long term. Have stuck my head in the sand a bit about these ops so not sure if that is completely correct!

I suspect they don't actually know! It doesn't help us though does it! I've never met a child who can walk on the top bit of his splints like DS. His feet just about go flat with the splints on but then he walks with knees bent and on the toes of his splints, it's no wonder his hamstrings hurt! Without splits it's toes pointed all the way.

the tendons op is very common, i know loads of young people who have had it and it has helped them(the only one I know tohave had a bad time had it donw when he was about 15)

riven can't you get the stander brought home? we did that when dd was smaller(the stander is to big now) also if you have a overhead hoist you can get a standing sling.

it is a 2 part sling that is used to transfer to things like standers and trikes, but you can use it to stand or walk in(with affos)