Posted by Holly
on 10/13/2009, 4:36 pm, in reply to "Surgery"
174.56.131.147
Hey Krista...
Why are they saying that Emma needs to have jaw distraction now?? Did she have a bad sleep study or something else to warrant this?? Is this her original plastic surgeon?? There are other ways than surgery to treat sleep apnea if that is the problem, and I might would look into that before agreeing to such major surgery. I will tell you that my friend has boy/girl twins who will be four next month. They were born healthy and have had no problems. They both weigh around 28 pounds and have always been on the small side. My daughter is eighteen months old and weighs more than them. My point being that just because she doesn't weigh that much doesn't necessarily mean she is alone in that department. If she does not have any eating problems now, i don't see where surgery would make things worse...just would probably have some issues related to pain/surgery for a few weeks. On the other hand, if she is having problems with eating now, i wouldn't say that surgery would fix that this far into the game. I would just make sure why they want to distract her jaw and make sure that it is really necessary and that there are no other options that you could try first if her problems weren't that severe. Anyways...keep us posted.
Holly
--Previous Message--
: I have not posted in a long time but this
: board helped me so much when Emma was first
: born 4 yrs ago. We were sent to see a
: surgeon last week who says that Emma needs
: the jaw distraction surgery. Emma had a
: trach for the first two years of her life
: and we thought once that was gone we were
: good....what a surprise when we were told
: she need the jaw surgery. Can anyone tell
: me what to expect baised on an older child
: not infant having to have this surgery.
: Like I said Emma is 4 and just hit the
: bottom 10th percential for weight she is
: only 25lbs and we fight for every pound she
: has pediasure 3 times a day via mouth along
: with 3 meals and several snacks thru out the
: day. I am really scared about the upcoming
: procedure and how it might effect her
: weight.
:
: Krista
: mom to Emma 4yrs old former gtube and trach,
: ear tubes pallet repair, stoma repairs and
: possible sticklers syndrome and one of the
: most amazing little girls I know
:
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