[ Post a Response | 22q Deletion Interest Board ]
Posted by jenny
on 1/5/2009, 2:34 pm, in reply to "22Q11-DI george"
121.222.238.4
dear rebecca
please dont feel likeits all pointless.i have two young boys aged 5 and 6 with vcfs and the youngest was in hospital for the first 13 months of his life heart op feeding tubes trackyuname it. it all takes patience and time and people to talk to thatalso have the same thing so if u ever want to emial me me you aremostmore than welcome we all need some one through theese times jenny
--Previous Message--
: Hi my daughter was 7 wks prem so only
: 3lb and born with tof and absent
: pulmonary valve syndrome and was a
: very poorly girl for the first 8mths
: of her life. She is now 11 and half
: mths and feeding is a real battle
: with her, she was ng tube fed up
: until 4 wks ago and didnt start n e
: thing orally until 7mths old. But i
: find all savoury foods she gags on
: and puts food in her mouth and spits
: it out again i feel its pointless as
: we dont get n e where! has any one
: got any advice for us as i get so
: frustrated with her. Apart from that
: shes such a loving little girl still
: very tiny but doing well since we
: had her home 7 wks ago xx
:
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