Hi MT, hope you don't mind my lurking, but very pleased to see your post and this outcome. Can only imagine how tough this last week has been for you Best of luck to you guys!

I'm also lurking (hope you don't mind) and these are my sentiments too. I also want to add that he is such a lucky boy to be born into such a loving and caring family. All the very best.

Likewise I've been lurking and so glad to see that it's a situation you can get a handle on and happy to move forward with!

While none of my boys have had birth defects, all their special needs have emerged later and largely due to their prematurity etc, my youngest got hit with a rare complication of his feeding tube surgery which resulted in incredible pain for him.
I know you had concerns about a life of pain for your wee man so I'd really like to reassure that kids are incredibly resilient too and often watching the pain is harder than living with it (I have arthritis and so can see the other side as well!).

That's not to belittle the pain kids can go through - and it broke my heart the time T said to me "Sometimes I wish I hadn't been born because then I wouldn't have got the gloopies" - that's what we called his GI issues as he made a glooping noise when he ate or drank.
There were times when he said he just couldn't bear the pain anymore and just couldn't take this. But there were also times when he'd be moving slowly and carefully and I'd ask if he was okay and he'd say "Just sore Mummy, just ordinary sore though not really sore."

He is a happy, outgoing, cheerful, social, chatty boy of 6 3/4 yrs now despite nearly a year of pain we were on the verge of medicating with heavy duty painkillers. That's on top of such severe reflux pain for his first nearly 4 yrs of life that we'd never heard him belly laugh from sheer pleasure until after he healed from his reflux surgery!
A lot of the management is in our own attitudes as parents - and you've very clearly got that one well and truly sussed!
in your journey!

I'm glad you are happy with the outcome of today's appointment. Have you thought about contacting parent to parent? They're a national support group and provide information on disability etc. They also have a library you can borrow from, and can link you up with other families in situations similar to yours. I know of a family locally who have twins, one with Down Syndrome, so I'm sure there will be someone who has been through something similar to you.

All the best for the topsy turvy world you have entered. It's fab, you'll meet wonderful people you never would have known otherwise. It's hard, demanding at times and more wonderful than I can describe at others! Just like regular mothering eh?

MissTuffit, this is wonderful that you have found it is a condition you can cope with (not sure how to word that).

I think it is wonderful that you are willing to continue the pregnancy. I am pretty sure I would too, with your sons condition (though have learned that noone can ever put yourself in anothers shoes).

There is this man that works at our local new world. It sounds like he has a similar condition. He has very very small arms extending from his shoulders. He LOVES to talk to customers, is wonderful with kids, and often talks about how neat it is when kids ask him what is wrong with his arms (whereas adults just tend to stare and mutter). He is fairly well known in our area (due to his disability) and everyone loves him - and admires him.

Not sure if the above story is even halfway relevant - or wanted!

I'm back to the up-in-the-air game. The hospital has booked in another scan for 28 weeks, which I had thought was merely to monitor the growth of twins, but the report my midwife recieved mentions suspected syndactyly toes and a request for a more in depth investigation of the fetal heart. Fark! So far the need for a second look, or the claim that they couldn't get a proper view has meant there is shite to come. Hard to stay positive.
It also mentioned the possibility of intrauterine death, IUGR and further undetectable anomolies and disorders.
This is not going to get okay until I can see him and face what ever the heck is going on.
It's really really scary.

Hi MT. It is very hard to stay positive. I gave up and stayed neutral. There's not much point worrying and stressing over the unknown. It's a waste of energy and doesn't get you anywhere. Of course that's much easier said than done Try to stay calm, you WILL be able to face what ever is coming your way.

You are stronger than you think!

Hi mt thinning of you and praying for the outcome to this situation. Gtake care!