How are you? I just saw your post and can relate. My daughter ( corrected age 6 weeks old) is unable to swallow / feed and is NG fed right now. It is extremely frustrating to see that she's unable to take even a few drops of milk when put with a pinky trainer.
Did your son get a swallow study? Has the g-tube been way better than NG tube? Is it difficult to maintain G-tube at home? How was the surgery and recovery for him?
We have been going to the OT / PT but they are projecting a very long time before things can get better. I am sure you know all this ...thought I'll share as well. We were told to make all her experiences around the mouth very positive and even wiping her saliva bubbling out of her mouth should be done in an organized fashion. I'm sure you're doing all this and more.
All the best!! I'm sure he'll turn around one of these days and show a miracle!!
: 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
: --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
: --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?
« Back to index
If you would like to join our email group, please check out our home page at www.pierrerobin.org and follow the instructions there. We would love to have you.