supporting the families of children born unable to swallow

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achievements
Posted: 22 June 2011 09:19 PM   [ Ignore ]  
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hi all,
i know there is an achievement thread on here , but couldn’t find it to add to, so did a new one.
i have a frances achievement to tell you all about.
it’s not a feeding, weight gain (etc)achievement, but just a ‘getting on with life’ achievement, i think so anyway.
fran started dancing classes a few months ago, she is the youngest and smallest in her class.
dancing teacher said they were going to do a show (60 kids, aged up to 16), i thought how on earth is she going to get the little ones to do that? but she did.
and guess what (and you are gonna think well of course she would say that) but my little fran stole the show.
people were talking about her in the interval in the toilets,and after the show, everyone loved her.
it’s kinda one of those occasions when you have to be there to appreciate it, but in short, fran basically got on the stage and did her own thing! (no discipline in that girl!)
they were meant to be sitting down doing this arm and head movement, fran got up and just danced (?) down the whole line of kids, doin her own thing! giving the rest strange looks cos they weren’t dancing. she was fab! everyone in the audience was just laughing so much at her, she loved it, but there were also people in the audience (and not just family) who cried through their laughter (i had no make up left on by the end, washed it all away with tears), these were people who know me and her, know about her history, medical problems etc and i think it just proper pulled their heartstrings to see her being so fab.
i have tears now just thinking about it…._
tofs rule xx
jayne x

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Posted: 23 June 2011 06:27 AM   [ Ignore ]   [ # 1 ]  
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Well done Fran, its funny how even with all their problems our little Tof kids seem to be so special in “normal” ways too. Love that she freestyled her way through the performance! xx

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Mummy to Christopher who is now 3. He was TOF/OA short gap repaired at 2 days, also large VSD and ASD repaired at 4 months.

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Posted: 23 June 2011 06:39 AM   [ Ignore ]   [ # 2 ]  
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that’s so true freya, they do something totally normal or expected for a child of their age and we think they are fantastic for doing it x
jayne x

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Posted: 23 June 2011 06:58 AM   [ Ignore ]   [ # 3 ]  
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That’s so cute Jayne. Hope you or someone you know has got it on video. Good one to keep for when she is older. It’s really nice that she has the confidence to do what she wants. Well done to you too!!
Jody xx

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Posted: 23 June 2011 10:46 AM   [ Ignore ]   [ # 4 ]  
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aww thats lovely Jayne, Iv got a huge smile just picturing it now smile

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Posted: 23 June 2011 06:35 PM   [ Ignore ]   [ # 5 ]  
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Little star!!! grin x

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Posted: 27 June 2011 11:01 AM   [ Ignore ]   [ # 6 ]  
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That is brilliant!  Well done Fran!

For me Serena’s achievement is just how well she deals with her TOF.  She is happy to explain to people what it is and does not get phased by it.  She is also EXCELLENT at waiting to eat her food if she does not have a drink or someone sat with her.  Considering she is only 4 I think that is pretty good!

xx

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Posted: 30 June 2011 09:36 PM   [ Ignore ]   [ # 7 ]  
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Well done Fran!  Sorry - I got deleted from our little community for a while, back now!  Funny though - I’m back to post number 1 - it deleted all my replies over the past 3 years!
Just wanted to tell you all that Begw came out of nappies two weeks ago, and has been dry 3 nights running!  YES!!!!!!!
No more pampers for me!

Sioned

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Posted: 30 June 2011 09:37 PM   [ Ignore ]   [ # 8 ]  
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Jayne!  It did it to you too!!!!!!!

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Posted: 30 June 2011 10:11 PM   [ Ignore ]   [ # 9 ]  
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I got deleted too!!!!  I think it was something to do with inactive email addresses

xx

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Posted: 01 July 2011 11:17 AM   [ Ignore ]   [ # 10 ]  
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Yes Sioned!! How dare they say I have only posted 4 times!! wink
And well done to you and Begw for fredom from nappies xx
Jayne x

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Posted: 07 July 2011 09:21 PM   [ Ignore ]   [ # 11 ]  
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Well done those kids!

I’m new to the forum but just wanted to add an achievement of my daughter Aoife, 3 and a half in June. She ate a whole apple the other day. Skin and all. Not chopped up. No stickies or chokes. And she loved it.

I’m still floating. Never thought we’d get there.

Grainne

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Posted: 08 July 2011 07:57 AM   [ Ignore ]   [ # 12 ]  
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Well done Aoife xx
Frances has recently ‘cracked’ the apple too.
I used to peel, chop up etc but she grabbed one the other week, started to eat, my heart was in my mouth, but i thought just let her go for it and she was fine!! Now she is mad on apples.
Jayne x

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Posted: 16 July 2011 09:10 AM   [ Ignore ]   [ # 13 ]  
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Hello All,
Me again! With a somewhat trivial achievement, but a huge step for me!!
Not directly tof related but kind of.
I have booked me and Frances a holiday!!!!
Up until now I have never been brave enough to do this, always thinking she will get poorly when we are away, or choke on something (which she rarely does anyway), and she hates being in the car, squirms like mad, or some other bad thing will happen (drama queen, i can hear you thinking!)
We aren’t going far, just to Reighton Sands Haven Park for 4 nights but it’s a start.
And we will also pay Kim Smith, Dan, Hugo and Sophie a visit when we are there!! Can’t wait to see them again.
It’s bizarre really, before Fran came along I had 3 foreign hols a year, thought nothing of getting on a plane and using foreign public transport to get to my destination, and now I am proud to think I have been brave enough to book a caravan for us to stay in, in the UK, less than 2 hrs from home!!!!
How things change wink
Jayne x

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Posted: 29 September 2011 03:23 PM   [ Ignore ]   [ # 14 ]  
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Hi everyone,
just thought id post hugo’s biggest achievement today!

he has just had his first lunch time at nursery where he ate sandwiches with billy bear - with salad cream for dipping into, a yoghurt, packet of pom bears and some chocolate animal biscuits and he managed to eat it all up, stickie free!! so proud of him xx

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Posted: 29 September 2011 04:21 PM   [ Ignore ]   [ # 15 ]  
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Fantastic and very very well done Hugo xxxx
love Jayne and Frances xx

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