I hope your daughter is doing well...... My son has undergone 22 surgical procedures..... I fell like I would not have done anything different. We are not sure what his diagnoses is as far as his bones because the doctors are going to wait untill his leg heals and he is walking again... Then they are going to do a bone density scan.. I will let you know what I find out.. and I would love for you to keep me posted on your angels progress as well. Thanks for the info.I'm going to bring that up with the Dr.
: My daughter is 5; she was diagnosed with
: Pierre Robin Sequence. She has a trach since
: she was 3 months old as she also had lower
: airway malacia- that seems to have gone away
: 2 years ago. Her tongue size and jaw
: position combine to cause severe sleep
: apnea, so she still has a trach, which is
: capped when she is awake. We opted not to
: have mandibular extraction. We learned last
: year that our daughter might have the bone
: disease called fibrous dysplasia - is this
: what your son has? If so, what have you
: learned - our daughter is undergoing more
: testing to determine the extent - the
: diagnosis was based on a CT of her head.
: Wishing you well.
: --Previous Message--
: MY SON WHO IS 5 NOW WAS DIAGNOSED AT BIRTH.
: HE HAD A MANDIBULAR EXTRACTION IN JANUARY
: 2010... WE THOUGHT HE WAS OK NOW.. HE STILL
: HAS SEVER SLEEP SOMEWHAT WHICH CH WAS
: SUPPOSED TO BE CORRECTED BY THE EXTRACTION
: BUT WAS NOT. WE ARE NOW FINDING OUT THAT HE
: MAY HAVE A BONE DISORDER. HE BROKE HIS
: FEMOR IN AN UNUSUAL PLACE 2 WEEKS AGO. WHAT
: TO DO. HE HAS HAD 22 SURGICAL PROCEDURES IN
: HIS SHORT 5 YEARS.
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