supporting the families of children born unable to swallow

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lulu
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louisewager@live.com
 
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Location
Chelmsford, Essex
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mummy now!
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too much to list!
 
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February 04, 2012  01:57 PM
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January 23, 2012  08:38 PM
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October 23, 2009  10:54 PM
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December 16, 2011  11:43 AM
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May 21, 1976
 
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My son Benjamin was born 30th May 2009 with isolated TOF/OA he had his primary repair at the Royal London (Mr Ward) May 31st 2009 and so far (5 months old) has had 4 dilatations. they tried to do a contrast study but Ben wouldn’t tolerate it - his reflux is pretty bad from what we can tell and so far they think his tracheomalacia is mild - however, it is being monitored in case in needs surgery. he has just started on a few fruit n veg purees and is doing well so far. He only weighed 4 lb 15 at birth but is now 11 lb 9 oz at 22 weeks of age. Ben is my little star and always seems to manage a smile, feel so lucky with my little one despite the bumpy road we have started on.