Posted by Krista
on 9/16/2010, 3:40 pm, in reply to "Re: Jaw distraction"
72.178.141.172
Emma never took the bottle even tho we tried every day. She was very stubborn and knew what she wanted and a bottle was not it. Infact she would see the bottle and close her eyes and pretend to be asleep. lol so easy to look back now and laugh but so upsetting than. She will probably need futher surgery in her teen years but for now we are done. Distractors were in from March til June but some of that time was just healing time and not turning time.
--Previous Message--
: Hi Krista,
: how old was your daughter when she had the
: trach put in and then taken out? How long
: did she have the fixators in for? Has the
: jaw growth now caught up or will she have to
: have further surgery?
: Did your daughter have feeding problems too
: or was she bottle fed and then weaned? We
: have never been able to establish whether
: Oliver has a safe swallow and so was ng fed
: and now gastrostomy fed. We are really
: struggling to get him to do swallow anything
: and he has lost his suck reflex. We have
: battled to get him to take anything into his
: mouth since we had to give up the dummy
: prior to the 1st palate surgery.
: So many questions sorry but am so frustrated
: by the whole feeding thing and hope that
: maybe with jaw distraction things may
: improve..
: Lucy
:
: --Previous Message--
: My daughter just had the jaw distraction
: surgery this past March. Her chin was not
: growing and the distraction made a huge
: differnce. She is 5 yrs old and our options
: were this or possibly getting the trach
: back.
:
: --Previous Message--
: Does anyone know of situations where the jaw
: has not grown?
: Does anyone know any other syndromes that
: cause problems with chin growth?
: Is anyone in contact with any families in
: the UK who have under gone Jaw distraction?
:
: Thanks
:
: Lucy
:
:
:
:
:
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