Page 3 | _______________BORN TO BE DIFFERENT_______________________DON'T MISS IT_____________

chipkid · 20/09/2007 22:05

no William is ok for now-scans every 6 months

themildmanneredjanitor · 20/09/2007 22:05

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emkana · 20/09/2007 22:09

I agree they are incredible people.

I cried loads, but also felt very cheered (again) at seeing Hamish. Makes me feel so hopeful for ds's future...

hippipotami · 21/09/2007 14:38

This programme was amazing. What a collection of superb, brave, inspirational people.
My heart broke when Shelbie's sister was asked what one thing she would like to say to Shelbie and it was 'don't die Shelbie'.

William is fantastic, and his little sister so beautiful, they are a lovely family.
I felt so sorry for his mum when they had travelled all that way only for the consultant not to have the scan results.

Hamish is stunning, what a lovely lovely boy! I am glad they have held off on the leg-extending surgery for now (not that it is anything to do with me) because he seemed perfect just the way he was. But I do understand the practicalities for when he is grown up.

Nathan was beautiful, and definately speaking better at the end, and Zoe's ballet dance at the end was so sad in a way

Blu · 21/09/2007 21:04

Oh blimey.

Shelbie's family are wonderful - all of them. I missed the first part of the programme - was the place they went for respite the hospice that had a series earlier in the year?

I have to say that it held an unexpected gut-stopper for me. It never occurred to me that anyone would consider bone-lengthening for lack of height, and as soon as they suddenly said 'painful and controversial treatment' I knew they were talking of the procedure that DS will start next year. Without it - or alternative 'evening out' treatment Ds will have increasingly debilitating problems throughout his life because he has a marked discrepancy in the length of his legs - but it never occurred to me that someone would undergo this because of looks. I know nothing about the day to day reality of having achondroplasia...but it seems a huge indictment of our society that someone would undergo bone-lengthening because of people's reactions to someone being shorter. The child is utterly delightful as he is, and his friends at school think so too - why would anyone need him to change? I wanted to shout 'yay' at the NZ Orthopaedic Consultant...but of course, who knows how hamish and his family will feel later on - and the older person they spoke to felt it had been worth it, it is their decision and no-one elses.

Went to bed very troubled, I must admit. But so happy when William's results were so positive. Is that the end of the series, now?

dinny · 21/09/2007 21:09

Oh, such an amazing programme - I remember watching the first one when pg with dd and have followed it ever since. Shelbie's mum is wonderful - well, they all are. Very humbling to watch.

dinny · 21/09/2007 21:10

Blu, meant to add that I really feel for you and your ds but totally agree it is a different ball game when done for non-medical necessity.... Or is it? I too couldn't decide and went to bed thinking "What the hell would I do?"

All the very best to you and yours.

popsycal · 21/09/2007 21:11

is this repeated? i missed it last night

Pinkchampagne · 21/09/2007 21:16

Oh I missed it too. I was round a friends & totally forgot it was on.
I hope it's repeated.

Marina · 21/09/2007 21:24

I hope they repeat it too as I missed all of episode three and a bit of two (including all that stuff about Hamish and the bone lengthening blu )

Pinkchampagne · 21/09/2007 21:25

That must have been hard for you to watch, Blu. I'm sorry your DS has to be put through that.

onlyjoking9329 · 21/09/2007 21:25

i have last weeks and this weeks recorded onto hard drive if anyone would like me to send it on to them CAT me.

boo64 · 22/09/2007 14:37

Is that the last one in the series now?

NAB3 · 22/09/2007 14:41

Must be as it isn't listed for this Thursday.

emkana · 22/09/2007 23:27

Blu, I didn't realize your son had to have this done.

After the programme dh and I agreed that we wouldn't want the limb lengthening for our ds the way we see things atm, but I could imagine that it's something that I will be contemplating again at some point in the future, especially as ds becomes older and more aware of what it means to be small.

Blu · 22/09/2007 23:34

I know, it's complex, isn't it Emkana?

Actually, after I posted all that I thought 'well actually, if the man they phoned thought it was worth it to make him taller, bone-lengthening can't be too bad, can it?'. But it is quite confronting. The thing is Emkana - children do become v able to think and articulate what they would like at a surprisingly early age. I liked the way they talked to the little girl with spina bifida and let her wait until she was ready to make her won decision. DP and I had to decide when DS was one whether to agree to a prosthetic leg then, or wait for bone lengthening when he was older. We opted for bone-lengthening, but have always worried because it is such daunting surgery etc, and doesn't necessarily give better mobility than a prosthetic le. But I was talking to DS, now 6, about it all a couple of weeks ago, and mentioned that we could have decided to choose a prosthetic leg and he said 'oh, Thank you Mummy!' that we had opted for bone-lengthening. And he knows it will take months, a wheelchair etc etc. So your Sebastian will become clear about his own felings in due course....and anyway, do you have any indication of hs likely height?

emkana · 22/09/2007 23:41

Blu, that is really interesting.

No we have no idea what his eventual height is going to be, because we don't have a diagnosis. If he has hypochondroplasia, which seems most likely atm, he's going to somewhere between 4 foot 6 and 5 foot 5 apparently. I think if he was to be predicted the upper end of that scale limb lengthening would definitely be out of the question. But we just don't know.

Blu · 22/09/2007 23:55

I don't know, but i would imagine from the fact that they said that they had grown 10" of bone in the other man, that they had lengthened both femurs and tibias, and obviously on both legs. That is far more than DS will have - though it is likely that there will be lengthening twice before he is an adult. But as you say - even if S has hypochondroplasia, he could well be appraoching average height...and his personality, outlook and character will be the most defining factor in how he wants to deal with anything, lengthening, or being strong in his natural height. I looked at his pics in your profile - he's completely gorgeous, that's for sure!