Guest guest Posted January 16, 2008 Report Share Posted January 16, 2008 Hi everyone, This is my 1st post. I have a 3 y.o. daughter (Jillian) with Bilateral Perisylvian PMG, and Craniosynostosis. She was diagnosed at 1 month, though I knew at birth (and even prenatal suspicions) there was something wrong based on her facial features/breathing difficulty. No genetic connection yet, though I feel the cause was a poorly formed umbilical cord. She has G-tube, aspirates, severe seizures, unable to maintain any body control, has severe breathing problems, unexplained fevers, does not talk. It has been the most overwhelming 3 years. We recently decided to scale back on medical interventions/therapies, as our main concern now is her comfort, since I can't bear one more day to see her in any pain. Dr's have told us her life expectancy is very poor due to breathing problems. Her seizures are " under control " for now (3-5 per day), though her breathing problems are severe and we have been told our options are limited with regard to treatment. We are currently providing nebs, inhalers, chest percussion, suctioning, but it is an every hour battle to keep her O2 sats where they need to be even with oxygen. Just wondering if others are experiencing problems with breathing difficulty. We have a 7 y.o. daughter who is healthy, and a 1 y.o. with a sensory integration disorder. Peace and blessings to all, Jen Quote Link to comment Share on other sites More sharing options...
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