supporting the families of children born unable to swallow

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Leap of Faith
Posted: 12 March 2010 08:18 PM   [ Ignore ]  
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Hi all,
for those that dont know we have been stuck on stage 2 jars for about a year now, Christopher is 19 months old.
Well this week started off with “little dish” microwaveable meal of pasta bolognaise, then thomas the tank engine pasta shapes with toast, then spaghetti bolognaise, then last night he managed fish fingers and toast soldiers with tomato sauce. Today he had real chicken, not pureed, not overcooked, just chicken.

This is the first time ever he has eaten food that hasnt been specially prepared for him. ie food a “normal” child would have. Woot Woot - non TOF food.
now me and Bruce just need to find the courage to continue to give him more difficult food.

as an aside, want to say a HUGE thank you to Anna (millies mum) and Rachel (lauries mum) as at the conference, you helped us believe that it would one day happen. And to Claire (harrisons mum) for being so inspiring with your bravery to jump in with both feet, and have the greatest outcome as a result.

never thought when I fell pregnant that I would be so happy and proud when my child could eat processed, and practically junk food.

xx Proud mummy Freya

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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: 13 March 2010 05:33 PM   [ Ignore ]   [ # 1 ]  
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Hooray, that’s fantastic! I hope one day I can post the same good news…thank you for posting as it does help us TOF mums with young babies (Ben is 9 months and on stage 2 again now but went back to stage 1 for a month or so due to a stricture - 2 steps forward and 1 step back!) to see that one day normal food will happen!!! x :-D

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Posted: 13 March 2010 07:22 PM   [ Ignore ]   [ # 2 ]  
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thats great Freya, and say well done to Chirstopher from us.

I cant wait until we get the all clear to do more than taste tests, as Nathan is now showing intrest its just his swallowing that isnt working

Darrell

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Posted: 15 March 2010 07:28 AM   [ Ignore ]   [ # 3 ]  
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Thanks for the replies everyone, we just seem to be going from strength to strength at the mo, last night we all had lasagne and garlic bread.
Sioned - i dont know what changed to make us try, but I think we were led by Christopher, he kept tipping out jar food, and just playing with it. Like you, our nursery are more adventurous, i still wouldnt want to give bread, we usually give toast, but he managed garlic bread wich was quite soft still.
We are, I suppose quite selfish in that we only used to try new foods at weekends, as we both work full time, and had been taking too many days off with sick kids visits. I know this sounds awful, but pick a time when a trip to the hospital wouldnt be the end of the world, maybe even expect a trip, and let Begw surprise you.
But Christopher had been showing more signs of wanting “real food” and we had been letting him try little bites of toast, the odd baked bean from our plate etc. Last weekend we tried him on a “little dish” of fish pie, and we very nearly ended up in sick kids. Stuff in gloop doesnt work for us, but the bigger lumps, he seems to know to chew. So we tried the pasta bolognaise, and we havent looked back yet.
But like Lulu says 2 steps forward, 1 back, we are waiting with every meal for him to not cope. I dont for one minute think this is the end of our TOF issues. And the same as Anna, we are really going to struggle with the fruit and veg, but just for him to be eating, and enjoying eating, even if it is junk food to the rest of the world, is the best feeling ever.
Long rambling post - sorry - but on a high.
x Freya

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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: 16 March 2010 12:02 PM   [ Ignore ]   [ # 4 ]  
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Freya
FAB NEWS… Well Done Christopher!!

I agree, I didn’t want Laurie eating ‘junk’ but now, chips, chicken goujons and crisps and chocolate are our saviours!  I too bought and attempted Annabel Karmel… no idea where the book is these days!

I remember at the first Conf we went too, when we first met Claire and her boys our inspiration was seeing Laura (sorry forget her mum’s name) perched over the bar railings wolfing down garlic bread at tea time.  Back then, I never thought Laurie would eat bread or anything like that.. but garlic bread he absolutely loves.

Our challenge now is physically getting Laurie to eat.  We know he can, he just won’t!  He’s over a metre tall, weighs in at over 3stone, 3yrs old, but unless he can pick it up with his fingers (chips, etc), he just doesn’t want to know!  No point in going to he GP, they’ll take one look at him, weigh him and declare he’s obviously eating something else he’d be half the boy he is!

I’ve sussed the breakfast; he just doesn’t get milk when he wakes up so does eat some cereal himself (ie, he picks up the spoon), but that’s normally only a handful of spoonfuls before he gets down from the table.

Lunch most of the time is just not worth it.  At the minders apparently he eats what he’s given, at home, nothing!  In the end we have to cave into crisps, smoothies and more crisps if he wants them.  Or, just give him nothing and rarely will he ever ask for something.  If I take him to the cafe, he’ll only eat if I shovel it in him..

Dinner well, whether he’s eaten at lunch or not, its “not hungry”, but I make it, park him in front of it and unless he can pick it up (ie, chips), I’m fighting a losing battle and end up feeding him.  He’ll open his mouth to us doing the shovelling, he just won’t do it himself.

He rarely eats sweets, hardly ever snacks.. if I were him i’d be starving pretty much all the time!

Half of me is saying just don’t feed him, give him the food and if he doesn’t eat it himself, he’ll soon realise that unless he does, he goes hungry… But the other half of me wonders whether there is a medical reason, TOF related or not that is preventing him from eating.  There’s no reflux that I know about.. He’s had a few stickies recently, one mega one the other week, but I don’t think there is stricture (if there was, he’d struggle we I phsycially feed him - which he doesn’t)... I’m sure its just pure laziness and ‘a boy thing’ .. We keep telling him that when the baby comes he’s going to have to do it cos mummy will be feeding the baby… No idea if he’s understanding it or not!

Ho hum!  Considering both his parents love their food (with extra inches to prove it) it amazes me that we’ve produced an off spring who doesn’t seem to be bothered or care less!

Anyway.. sorry, taken the emphasis off Christopher.. Well done you guys!!!

Rach

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Rachel - Mum to Laurie TOF/OA and Callum who just feeds a lot.  Also long suffering partner to Mark who sometimes contributes to TOFS Community.
http://markspageofrubbish.blogspot.com/

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