Posted by Krista martin
on 10/13/2009, 2:47 pm
207.54.197.41
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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