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..
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