7 year old with complex l and lll defect

I have a 7 year old daughter with a complex l and lll defect diagnosed 18mths ago in Atlanta.  She has microcephaly and short stature, gross and fine motor issues, choking episodes, speech delay expressive>receptive with voice quality concerns r/t muscle tone, profound visual impairment, "autistic features" by some folks estimation, GERD, severe constipation, ataxia, SI disorder, precocious puberty, and ketotic hypoglycemia.  Despite all of her challenges she appears to have near normal cognitive function.  Since diagnosis we haven't had much follow up and are feeling a bit lost. 

This September Lily developed severe anxiety related to school and as a result has been unable to attend.  She is now being tutored at home and we discovered that she is more fatigued than she has been in the past.  Her tutor finds Lily unable to sit in a chair as the effort of supporting her body drains too much energy.  She makes it through two hours of tutoring daily, some days go very well and other days consist of multiple breaks and listening to stories while lying on the bed.  Usually she naps a few times daily.  Therapies are arranged in the afternoon 1-2 times weekly and she has difficulty participating due to fatigue.  We finally have an appointment for follow up at the mitochondrial clinic at Boston Children's Hospital and are looking for guidance about what questions to ask.  To date it seems the answer to every question is "there is no way to no, every child is different."  This answer has left me feeling very much in the dark...it seems a very reactive rather than proactive approach. 

Does anyone out there have a child like Lily??  Perhaps a suggestion on questions I could bring along to the upcoming appointment??? 

**She did have an echocardiogram about 15mths ago which was normal.  Her heart rhythm is a bit irregular and skips a beat now and then, I don't know if it has always done that? (just listening with my own stethescope).  She also has a past history of mildly decreased oxygen saturation 92%-94% daytime, perhaps a bit less during sleep.