i know its different cos katie will be walking one day, but i kinda undrstand how you feel. i would love to take her to soft play and stuff, but i'm so scared of her being trampled on! and cos she's a big girl, really tall and proper soild, i've been being asked for months if she's walking yet, and having people suggest "helpful" ways of getting her walking! even eating her tea in her walker!! and obv there's no physical signs that you can see so people just assume she should be walking cos of her size!! i'm bracing myself for her having her opp and having to face the "omg why has your baby got plasters on both her legs, what have you done to her?" i hope you can find somewhere to take her hun

I know it's not the same but when Joe was on the apnea monitor I got tired of explaining what it was, why did he need it, what he's 9 months but he looks newborn

Sometimes I use to hide it in his carseat and there we would be in a crowded dr's waiting room with that deadly silence and in we'd come.......ticking It was as if it was a bomb and then of course he'd go abit 'quiet' and he'd alarm

I felt like saying 'yeah next time it will be a bomb knobs'

Tegan was on an apnea monitor when she was in hospital. Oddly I found it strangely comforting, she was in there 8 weeks and there were 7 other babies on the ward. There was clicking coming from all directions, and when we bought her home I actually missed the clicking, and I was sooo scared she might stop breathing

I'm having a really poo night Might put a thread in GS in a minute

Joe was on it for about 8/9 months. It was great but you would crap yourself when it went off in the middle of the night

Eventually had to take it off him as he kept biting the wires and it wouldn't work

Tegans mama how are you doing today ?
xoxo,
miel

I am ok thankyou Miel, I am stuck in bed with a slipped disk at the minute so not much happening here! How about you? xx

i am ok as well...getting ready to see the neuro doc on the 11th...i am trying to think of questions i should ask...any idea?

Hey Tegan's Mum,
I'm jumping in here from a completely different perspective.
My best friend has SB. She can't walk, but crawls fine and at her Mum's house I used to wheelbarrow her up the stairs all the time (not that she couldn't get up on her own, but together was faster and more fun). As teens we used all the concessions we could get - cinema, concerts, and later the best parking spots. Ok, I'd drive and she'd get so drunk she'd fall out of her wheelchair and I had to smuggle her home without her Mum noticing, but hey

I used to be way more worried than she was that people would fall over her on the dancefloor and other crowded areas. Sure it happened, but she was fine and she certainly pays anyone lipservice who tries to mess with her.
I tell you, she's totally ace! She's beautiful, intelligent, and I'm looking forward to being her bridesmaid very soon! Especially, since she was mine last Summer

You have so much to look forward to with Tegan. Yes, things will be hard (and I don't envy you your slipped discs carrying her around), but I'm sure with her lovely Mummies Tegan will have a great and fun life!

Thankyou!! I know that Tegan will have a brilliant life, we take every step we can to ensure that. I just don't know anyone with children, which means Tegan doesn't have many friends and neither do I now, because my friends are still young and go out a lot etc and I can't go with them.

I just feel a bit low sometimes, I don't know why though

Aw thats lovely. I hope you have fun being bridesmaid x